BS: So that's why I feel like crap!

30 Dec 11 - 06:02 AM (#3281841)
Subject: BS: So that's why I feel like crap!
From: VirginiaTam

Arrgghhh

I am so pissed off with my rheumatologist. It took being referred to the pain clinic by my GP to get vitamin D defifiency bloods done. All the pain clinic doctor did was press my forearms and shins, ask me questions about sun exposure and fatigue and he decided I should have vitamin D bloods done. Sent a letter to my GP requesting this blood test. Results then sent to my rheumatologist.

Just received letter and scrip from the rheumatologist that vitamin D is very low and been prescribed 20,000 units 3 times a week for 8 weeks.   Her letter stated that this could account for some of my symptoms.

WHAT????

What a convoluted way to find out that pain, fatigue, depression, obesity, etc. may be due to vitamin D deficiency and not rheumatoid arthritis which she has said all along is atypical. Little swelling and no redness or heat in joints.

Six effing years to find this out!!! Six years poisoning me with methotrexate which has increased my blood pressure given me palpitations and angina, caused terrible nausea, made more than half my hair fall out (and it is still coming out in clumps).

I really could kill. Six years of my life wasted feeling too sick to have fun. Most energy devoted to working and not playing.

I WANT THEM BACK! And I want my hair back.

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30 Dec 11 - 06:29 AM (#3281850)
Subject: RE: BS: So that's why I feel like crap!
From: Little Hawk

Uh-huh. There are millions of people out there being poisoned with a large variety of expensive prescription drugs, all pushed by Big Pharma, and what most of them actually need is: natural vitamins and minerals, natural foods, pure water, exercise, reduction of stress, and sufficient exposure to sunlight (which is where you get most of your vitamin D from).

Look at it this way. Now you do know what the problem is and you can deal with it. That's something to be thankful for, because you're sure better off than you were before.

But I can understand why you're angry.

I take NO pharmaceutical drugs. None. Nada. Zilch. I don't trust those people as far as I can throw a refrigerator. A naturopath (or an M.D.) can do blood tests which will determine what vitamins and minerals you are low on. You then take vitamin and mineral supplements accordingly, get sunlight, water, fresh food, and exercise. That's what animals need to be healthy. It's what people need too. Nature provides everything needed for good health, but with a very badly damaged ecosystem around us nowadays, and a very unnatural lifestyle, it's been made more difficult to get these things. Even the commercially grown fresh produce we eat is starved of various essential minerals, due to modern factory farming methods and horribly depleted topsoil.

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30 Dec 11 - 06:39 AM (#3281855)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,punkfolkrocker

dunno about you but I'm beginning to suspect my little weasel local clinic DR
was jealous of how much fitter I was than him..


So he insisted I took blood pressure and cholesterol tablets which he assured me I needed at my age..

which may have by now over 3 years left me
shrivelled, depleted, and demoralised..????

3 years ago I was an exceptional muscular fit athletic man of 49..

now i'm f'cked and saggy and fat with limb cramps and sciatica

and can't even be bothered leaving the house...

never should have trusted Drs..

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30 Dec 11 - 07:08 AM (#3281866)
Subject: RE: BS: So that's why I feel like crap!
From: John MacKenzie

VT lives in the UK, Garg. Sunshine and Britain are not synonymous.
The further north you go in the UK the less sunhine hours we have. Scotland has a higher incidence of MS than more southerly climes. This has recently been attributed to the low sunshine hours we (don't) enjoy.

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30 Dec 11 - 07:15 AM (#3281869)
Subject: RE: BS: So that's why I feel like crap!
From: kendall

VT I don't blame you for being pissed off!
Better check out what other meds don't go with vitamin D.

One of the expensive doctors at Intermed told me there is nothing they can do for leg cramps. $180.00 for that bit of wisdom.

My chiropractor suggested COQ10, and a friend said, bananas. I take both of them and for the past month, no cramps.

One of the Doctors in my past prescribed a med and he made a mistake by writing a prescription for a huge dose which could have been fatal. He said "I didn't prescribe that"!

Doctors kill thousands of us every year. The wife of a good friend of mine had diverticulitis and had part of her colon removed. She got MRSA and is in very serious condition. It has eaten away one of her vertebra and they want to install a metal rod to fuse the ones that are left together. She's 85!

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30 Dec 11 - 07:16 AM (#3281872)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Eliza

This makes me so furious on your behalf, VirginiaTam. They seem so reluctant to pursue a proper diagnosis, and follow what I call a "Suck It and See" policy. In other words, to get rid of you, they prescribe something on the basis that it MIGHT work. Often these daft drugs are infinitely more harmful than whatever it is you've got. I've been told my BP is 'too high' (it's not that bad) and also my cholesterol. Who actually fixed these so-called optimum levels? Probably the drug companies. I'd be swallowing statins and BP tablets by the hundred if I'd taken any notice, at vast profit to Roche etc. Also, my young and totally indifferent doctor recently 'decided' (on what scientific basis I have no idea) that I 'might' have polymyalgia. He was busy tapping out on his computer (they never look at the patient, they look at their monitor and keyboard) a prescription for STEROIDS, which I was apparently to take for TWO YEARS! He was ever so miffed when I flatly refused without further tests. I left politely and said I'd 'wait and see'. Having lived to this age without their interference, I'm happy to take my chances thank you!

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30 Dec 11 - 07:18 AM (#3281874)
Subject: RE: BS: So that's why I feel like crap!
From: Richard Bridge

I recommend a contingency medneg lawyer. If you can't get the time back money would be a nice thing. Regrettably I don't know a contingency medneg lawyer I trust.

Do however check your buildings and contents insurance. You may find that your insurers have slyly added a "protect your rights" option to collect more premium. If they have, you may be insured to spend up to (typically) £30,000 suing the doctors who did not bother to have the blood test done. And the insurers will have their preferred medneg lawyers.

Garg - don't be such an offensive twat. The pain VT has been in totally precludes jogging anywhere, she's been on a walker and partly in a wheelchair. And she had no idea until now that vitamin D deficiency was a possible cause.

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30 Dec 11 - 07:19 AM (#3281876)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Eliza

You might well ask why then I go to the doctor at all. I ask myself the same question! I shan't be going again, unless a bit of me drops off or something!

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30 Dec 11 - 08:19 AM (#3281907)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Last year was a very grey year. I commented here before how I thought the higher proportion of cloudy days had affected my mood. Remember I wanted to move back to the US. Didn't clock the physiological link until now. Do go out when it is sunny, but because the sun causes hive like reaction (damned methotrexate again) I have to cover up.

Didn't realise I wasn't getting enough D in all the fresh fruit and raw veg that I eat. One thing I like about UK is the accessibility of fresh tasty fruit and veg year round.

My milk intake has decreased quite a lot since moving to UK. Only have a quarter cup of skim over muesli about 3 or 4 mornings a week. Think I am going to have to force poached salmon at least once a week. Fish is a mood thing for me so this won't be pleasant.

The side effects of such high dose of Vitamin D are a bit worrying.   I already have severe nausea.

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30 Dec 11 - 08:29 AM (#3281909)
Subject: RE: BS: So that's why I feel like crap!
From: John MacKenzie

Your system needs to adjust Tam.
My opinion of skimmed milk would not be allowed on the BBC. Suffice it to say, I think it's part of the Devil's work.;<)

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30 Dec 11 - 08:38 AM (#3281910)
Subject: RE: BS: So that's why I feel like crap!
From: Bobert

There's a reason why they call it "practicing" medicine... Alot of folks need a lot more practice before doctorin'...

Sorry, Tam, but like others have kinda said, you're on the mend now...

B~

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30 Dec 11 - 08:49 AM (#3281914)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

Some information here:
http://www.mayoclinic.com/health/vitamin-d/NS_patient-vitamind/DSECTION=dosing

and here:
http://www.livestrong.com/article/424473-magnesium-deficiency-vitamin-d/

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30 Dec 11 - 09:15 AM (#3281921)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,999

VT: Take a tablespoon of cod liver oil daily. Along with low Vitamin D goes a poorer rate of calcium absorption. Therefore, I suspect you'd also need a calcium supplement. A naturopath would know the levels of each you'd require. NB Cod liver oil is now available in capsules so you don't taste it until you burp. (I grew to like the taste when I was a kid, but whether or not we liked it, our grandmother gave us a tablespoon daily whether we liked it or not. Usually that was during the winter (low sunlight months here in Canada)).

Fruits and vegetables are NOT NOT NOT a good source of Vitamin D. They are a good source of Vitamin A. Other than sunlight, the best foods for Vitamin D are fish liver oils (cod, halibut) and things like tinned salmon, mackerel and tuna. I don't know about shark liver oil or how much it contains. Also, Vitamin D production in the body by exposure to sunlight is partially dependent on skin shade.

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30 Dec 11 - 09:20 AM (#3281924)
Subject: RE: BS: So that's why I feel like crap!
From: Jack the Sailor

The Newfoundland solution.

Seriously. If I were you VT, I'd add beef liver n onions and chicken livers and green peppers as regular meals. And yogurt and cottage cheese, etc etc.

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30 Dec 11 - 09:35 AM (#3281929)
Subject: RE: BS: So that's why I feel like crap!
From: Richard Bridge

Salmon yummy! Can you get oysters on the NHS?

Wikipedia says:

"Dietary sources
In some countries, staple foods are artificially fortified with vitamin D.[108] Dietary sources of vitamin D include:[1]
Fatty fish species, such as:
Catfish, 85 g (3 oz) provides 425 IU (5 IU/g)
Salmon, cooked, 100 g (3.5 oz) provides 360 IU (3.6 IU/g)
Mackerel, cooked, 100 g (3.5 oz), 345 IU (3.45 IU/g)
Sardines, canned in oil, drained, 50 g (1.75 oz), 250 IU (5 IU/g)
Tuna, canned in oil, 100 g (3.5 oz), 235 IU (2.35 IU/g)
Eel, cooked, 100 g (3.5 oz), 200 IU (2.00 IU/g)
A whole egg provides 20 IU if egg weighs 60 g (3 IU/g)
Beef liver, cooked, 100 g (3.5 oz), provides 15 IU (0.15 IU/g)
Fish liver oils, such as cod liver oil, 1 Tbs. (15 ml) provides 1360 IU (90.6 IU/ml)
UV-irradiated mushrooms and yeast are the only known vegan significant sources of vitamin D from food sources.[109][110] Exposure of portabella mushrooms to UV provides an increase of vitamin D content in an 100-g portion (grilled) from about 14 IU (0.14 IU/g non-exposed) to about 500 IU (5 IU/g exposed to UV light).[111]"

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30 Dec 11 - 09:55 AM (#3281936)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,leeneia

VTam - 20,000 units? Are you SURE?

I too was low on vitamin D, even though I was taking a multivitamin everyday. The doctor prescribed more, 2000 units daily.

(To tell you the truth, I don't think it's making much difference.)

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30 Dec 11 - 10:37 AM (#3281953)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,crazy little woman

"Just received letter and scrip from the rheumatologist that vitamin D is very low and been prescribed 20,000 units 3 times a week for 8 weeks.   Her letter stated that this could account for some of my symptoms.

WHAT????

What a convoluted way to find out that pain, fatigue, depression, obesity, etc. may be due to vitamin D deficiency and not rheumatoid arthritis.........."
===============
VTam, climb down, chill, take a deep breath. What you just posted there is a masterwork of jumping to a conclusion.

Stop tearing yourself up and stop hating your doctor. You are filling your whole body with stress chemicals.

For one thing, this Vitamin D stuff is new. She didn't know anything about it six years ago.

And beware of people on the Internet who use your suffering to further their social-political agendas.

For another, all she said is the deficiency could account for some of your symptoms. Not all of them, and not for sure.

There are thousands of people walking around who are short of vitamin D and who do not have the serious symptoms you listed.

Adopt a 'let's see' attitude, take the Vitamin D, and see what happens.

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30 Dec 11 - 11:11 AM (#3281970)
Subject: RE: BS: So that's why I feel like crap!
From: bobad

Finally, a voice of reason -- crazy little woman not so crazy.

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30 Dec 11 - 11:43 AM (#3281984)
Subject: RE: BS: So that's why I feel like crap!
From: Stilly River Sage

VT, you need to join our De-clutter and Exercise threads. We covered this earlier in the year. I'll go back later to look for the hour-long video, originally posted by Dr. Christiane Northrup, that talks about this. It's well worth the listen.

SRS

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30 Dec 11 - 11:58 AM (#3281996)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Thanks I am calming. I do know that I have been treated for RA because RA consultant ruled out Lupus (she mentioned that she is specialist in Lupus). I have been told my symptoms are atypical and bloods inconclusive. For 6 years I have been taking various dosings of methotrexate in order to suppress my immune system which it is believed is causing the RA-esque symptoms.

Consultant had the gall at last appointment (which was first time I saw her in over 3 years) that I should never have come off the metho the last 2 times I did. My records show the first time her registrar (temp consultant) took me off because my liver enzymes had increased. The last time was due to really high blood pressure and inability to mix BP and angina meds with metho. It was noted by GP that my BP returns to normal when I come off Metho. So rheumatologist is not even bothering to look at my medical notes.

She and her nurse "advised" me several times early in my care that I should see them privately. That I would get more time with them and potentially better care. That galled too.

The first consultant who saw me (specialist in Juvenile RA) gave me an injection in wrist where I had ganglion and proceded to stridently massage the area so had that it brought me to tears and prevented me playing guitar (or doing any needle craft) for over a year.

I have lost all confidence in the Mid Essex RA team.

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30 Dec 11 - 12:02 PM (#3281998)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

definitely 20,000 units 3 times a week for 8 weeks.


From NHS

Deficiency (25(OH)D less than 25nmol/L) will require high dose colecalciferol;
• First line: 60,000units (3 x 20,000unit capsule) colecalciferol orally once a week for 12 weeks.
• Second line: two intramuscular (IM) injections of 300,000units colecalciferol given 3 months apart
(use this option if malabsorption present or compliance is problematic).
• Third line: 150,000units (50mL of 3,000units/mL liquid or equivalent) colecalciferol once a day for 2
days (use oral liquid option only if capsules or injection are not suitable).

Insufficiency (25(OH)D 25 to 50nmol/L) should be treated with oral supplementation of 1,000 to
2,000units of colecalciferol taken daily for 12 weeks.


Maintenance therapy at a dose of 800 to 1,000units of colecalciferol daily may be required once
deficiency has been corrected for those patients who were severely deficient and are still considered to
be at risk. In some cases this may be lifelong therapy.
• First line: one tablet twice a day of a calcium carbonate 1.5g & colecalciferol 400units (10mcg)
combined preparation (essential for all institutionalised patients over 65 years).
• Second line: 1,000units colecalciferol taken orally once a day (only if patients have adequate dietary
calcium intake or are at risk of hypercalcaemia).

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30 Dec 11 - 12:15 PM (#3282002)
Subject: RE: BS: So that's why I feel like crap!
From: Richard Bridge

The standard UK NHS leaflet about vitamin D deficiency -

here - http://www.patient.co.uk/health/Vitamin-D-Deficiency.htm

lists publications from 2006.

A summary of history from the 1800s to date here - http://www.ncbi.nlm.nih.gov/pubmed/19185802

I note a reference to rickets, and I was under the impression that UK white flour had at least one additive to reduce incidence of rickets and had done for decades.


It seems open to question therefore whether " this Vitamin D stuff is new. She didn't know anything about it six years ago"

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30 Dec 11 - 12:22 PM (#3282004)
Subject: RE: BS: So that's why I feel like crap!
From: Ebbie

In southeastern Alaska with all its rain and cloudy skies we too don't get a great many sunny days. Doctors here advise us to take vitamin D routinely- my doctor told me that she even gives it to her 18-month old.


In Oregon back in the 70s I too was treated for rheumatoid arthritis because the blood tests didn't come up with a clear diagnosis, and my arthritic symptoms were much the same as those of lupus which was suspected.

That year we started testing for lupus in February and it didn't test positive until June.

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30 Dec 11 - 02:38 PM (#3282062)
Subject: RE: BS: So that's why I feel like crap!
From: gnu

Interesting comments and suggestions. Ebbie, I would like to hear more of the reasons (symptoms) you were tested for lupus. I have a maternal cousin who has lupus and and I am somewhat concerend about my "symptoms". Also, I would like to learn about the treatments... and anything else. Web searches are okay, but talking with someone you trust about their experience is far more reliable and believable.

By PM, or by a new thread (preferred, as that would be of benefit to far more people)... if you have the time and wish to do so, of course. Of course, if you can direct us to a site which you know of, and you trust will garner us the info we seek, perhaps that is a better way to go.

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30 Dec 11 - 03:12 PM (#3282070)
Subject: RE: BS: So that's why I feel like crap!
From: Ebbie

Interesting, gnu. I'll start a thread on it, thanks.

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30 Dec 11 - 06:27 PM (#3282170)
Subject: RE: BS: So that's why I feel like crap!
From: gnu

Ebbie.... THANK YOU!

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31 Dec 11 - 06:23 AM (#3282337)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Excellent! Because Lupus and RA are both autoimmune related conditions. The list is huge and surprising. I have posted some info about and link to AARDA (see below) on the Lupus thread.

The American Autoimmune Related Diseases Association, Inc. (AARDA), was founded in 1991. AARDA's mission is the eradication of autoimmune diseases and the alleviation of the suffering and socioeconomic impact of autoimmunity through initiating, fostering, and facilitating collaboration in research, education, advocacy and patient services in an effective, ethical, and efficient manner.

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31 Dec 11 - 09:33 AM (#3282386)
Subject: RE: BS: So that's why I feel like crap!
From: foggers

Hi VT - I am so sorry to read about the twists n turns in your health and the inconsistency of advice and treatment. I think crazy little woman is right to sound a note of caution about concluding that mainstream or "allopathic" medicine is useless.

I think there is a place for complementary approaches to health; nutritional knowledge and use of nature's pharmacy makes absolute sense, I think an intelligent and questionning approach towards anyone offering diagnoses and treatments is wise (whether GP, Consultant or alternative practitioner). I want to know the reliable scientific evidence for any claims made.

I do hope you soon find some improvements in your health.

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31 Dec 11 - 10:32 AM (#3282419)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Don't worry. I will continue the methotrexate and any other medicines as prescribed. Just annoyed that this problem wasn't considered before.

But I am beginning to believe my colleagues (all women between 45 and 62) who say that women who are past shelf life are invisible to the NHS.

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31 Dec 11 - 10:44 AM (#3282427)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,crazy little woman

Actually, what I meant was to watch out for people with hidden agendas. People who are looking for someone to blame or someone to feel superior to. Such people are legion.

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31 Dec 11 - 11:30 AM (#3282457)
Subject: RE: BS: So that's why I feel like crap!
From: katlaughing

VTam, I hope you get more answers and assistance. IMO, it is always good to learn more.

I agree with clw and fogger and would just like to say that if it were not for medications, I would be dead, as would several other people I know. I do NOT agree with the way drug companies push their agenda of more and more and something for everything, as well as the dangerousness of what they push, but I am glad we no longer live without antibacterial meds and others which help millions to stay alive and, perhaps, in a better way.

kat

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31 Dec 11 - 11:16 PM (#3282792)
Subject: RE: BS: So that's why I feel like crap!
From: YorkshireYankee

VTam, ~20 years ago (back when I lived in the US), after a series of alarming mistakes and misread test results by my GP & co, I came up with a little slogan to sort of remind myself that I can't count on any health professional 100%: "Nobody cares like I do."

(BTW, am not saying this to imply that you've been trusting yours too much -- I just hope that sharing it may bring you some comfort.)

Here's hoping that things now (finally!) start going your way and that this is the start of a much better, healthier and happier period of your life.

Meanwhile, hugs to you -- and your family.

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01 Jan 12 - 02:27 AM (#3282839)
Subject: RE: BS: So that's why I feel like crap!
From: JohnInKansas

I don't know about shark liver oil or how much it contains.

In a medicinal preparation, shark liver oil should be as good as any other, since the dosage will be adjusted within expected limits.

"Survival Manuals," both military and popular, nearly always warn that you should NEVER eat the liver of sharks or polar bears because both live in low sunlight environments, and "store" Vitamin D mainly in the liver, and the dose from eating that particular part can be rapidly lethal.

If it comes in a pill or in a bottle, reading the ingredients and dosages and buying whatever's cheapest for the dose you need is probably the best way to go.

I don't think polar bear liver oil has ever been a commercial product, although people in North polar regions have recognised the liver as a "therapeutic" for treating the symptoms of low D for more than a few hundred years. (As anyone would know if they'd read the narrative reports by 19th century explorers(?).) Nearly all shark species are within the "threatened" category and most that are "easy to catch" are on endangered listings, so if you want to be "really green" something else might be a better choice.

I've taken Vitamin D tablets/capsules occasionally since ca 1952 or so, when symptoms suggested the need. The symptoms suggesting low levels in normal people with mild deficiencies were well enough known long before that, by my childhood "country doc," although the use for symptoms emulating arthritic or rheumatoid conditions possible wasn't well developed until somewhat later(?).

While living in Seattle (90s) and Boston (50s - 60s) for a few years I used supplemental Vit D fairly often but not regularly. I don't think I felt the need for any, for any reason, during my couple of years in Yuma AZ (mid 60s).

Even though I don't get outdoors as much as I'd like, they're seldom necessary in my present Kansas locale - for me, for the symptoms I had in the past; but I have been taking a low dose regularly for some time because it is reported as facilitating the absorption and maintenance of appropriate levels for a couple of other "supplemental medicines" that I use. (This kind of use does require some "extra care" in determining proper dosage, since excessive Vit D can interfere with a couple of other nutrients, and it can accumulate if even slightly more than is needed is taken for a long enough time.)

John

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01 Jan 12 - 05:16 AM (#3282862)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

ugghhh... nausea is not fun

One dose taken Friday night
Next one tonight.

I want to go walking in Scotland next summer. Come on vitamin D!

Thanks all above for advice and care. You are a lovely bunch of folks.

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02 Jan 12 - 12:24 PM (#3283485)
Subject: RE: BS: So that's why I feel like crap!
From: foggers

VTi good luck with reaching your goal of being fit enough to be walking in Scotland. I quite agree with the point you make that women over 45 feel like a low priority for the NHS; that's why we need to look after ourselves!

We bought this book for Xmas "Medicinal Cookery" by Dale Pinnock; he is a nutritional expert and the book has great advice and recipes for optimum health. I don't do NY resolutions as such, but I think the book will help to guide us in making some changes in eating habits (once we have finished off the remaining festive goodies!).

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03 Jan 12 - 07:33 AM (#3283968)
Subject: RE: BS: So that's why I feel like crap!
From: Black belt caterpillar wrestler

And if you are going walking in Scotland in the summer make it Early Summer, before the midges really get biting!
Who knows what effects you could develop when the combination of midge bite and anti-midge bite treatments hit your system if it is out of balance to start with.

Best wishes

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03 Jan 12 - 11:21 AM (#3284104)
Subject: RE: BS: So that's why I feel like crap!
From: Dorothy Parshall

Once again I realize how fortunate I am to have a friend to consult who knows. I call her my health consultant. Without her I would still be spending most of my life on the couch - or worse. She has kept me going (since 2000) through environmental poisoning with formaldehyde, round-up and an organophosphate. She clues me into the best supplements for me. When ever I feel something is going on, for which I don't have the answer, I call and get help.

In early September, I realized the pain in right hip and knee were getting so bad I could hardly walk and felt 150 years old, and I had high BP. (Mine is usually about 114/70.) I called, told her my symptoms and she immediately suggested magnesium deficiency. HUH! Never heard of... I googled it, took the quiz and confirmed - after I started taking the mag that was on the kitchen table. I was making sure my partner took some 2X/day to calm the brain and gut but never thought to take any myself.

Within a week, most of pain was gone. In October we took a long walk in the woods and only a couple mis-steps. Now I am free of pain and discomfort and can even kneel without a screaming, or even complaining, knee. As long as I keep taking a couple hundred mg a day. I feel the difference, feel the need.

If I had gone to a GP, what would have happened? The last one I visited told me point blank, "I don't know anything about vitamins."

And people wonder why I have contempt for mainstream medicine. It is useful for broken bones and major injuries but for day to day health.... It has been of no value to me.

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03 Jan 12 - 02:04 PM (#3284214)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Eliza

Do you know what I think it is, Dorothy? The doctors just don't know very much apart from the main, obvious stuff, and also, they don't have the time or energy to be bothered with us older women. If my GP were to actually admit "Well, I'm afraid I'm stumped, and I'm so sorry you're feeling like this. I'll send you to a diagnostician to see if somebody can sort you out." I'd be well pleased. But instead, he would say, "Er... try this and if it doesn't help, er... try that..." (gazing at his computer monitor and hardly glancing at me!) And the things he'd be prescribing aren't funny, they're major stuff which have BIG side effects, and all without a proper diagnosis. It's just to get rid of you. My motto is "It's MY BODY, not yours!" Unless my leg falls off, I'm staying away!

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04 Jan 12 - 07:27 PM (#3285001)
Subject: RE: BS: So that's why I feel like crap!
From: Dorothy Parshall

I'm with you, Eliza. However, rest assured, it is not just women or even those of a certain age. My sweet GP in PA, a brilliant man and very caring physician, did not know how to properly diagnose environmental issues. He listened intently when another woman and I gave a dual "dissertation" on environmental "illness" around a picnic table at social event. He had no idea.

It is the lack of belief and the lack of training, the fact that MDs are as brainwashed as the rest as to environmentally caused physiological problems, about nutrition, about vitamins and other supplements. I read a book about 4 years ago in which an MD declared most of our "illnesses" as being caused by environmental factors - all autoimmune "diseases". It is finally become accepted that cardiovascular, cancers, obesity, asthma, and more are environmental.

But recognizing it and being able to do something for those so afflicted is still beyond most so-called health practitioners. So my consultant and I keep me going - distilled water, pretty good food, lots of de-toxing and carefully chosen supplements.

If the money spent looking for "cures" were spent cleaning up the environment and insisting the corporations do the right thing, THEN everyone (almost) could be cured. And, NO, that is not an over-simplification. The research is growing into mountains.

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06 Jan 12 - 04:33 PM (#3286163)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Sending you Garg dear, a very happy New Year and hoping you receive patience, compassion and empathy from your fellow man. Perhaps you should look at the D word re your own posts aimed to hurt others who have done nothing to you.

Eliza And Dorothy - I was born and raised in the Chemical Capitol of the South, Hopewell Virginia. I thought autoimmune problems were just in my family but having reconnected with so many old school friends (facebook) I discovered so many of them and their kids and grands riddled with disease. Lots of school mates succumbed early to cancer and other diseases. Frightening. So yeah many people cannot cope with the poisons they are exposed to. It gets worse with each generation.

Anyway back to Vitamin D. The day after 3rd dose I noticed the throbbing in my bones had become a slight background pain. Only really bothers when I go to bed as there is nothing to distract me from it, until I fall asleep. So thankful for lovely hubby who reads me to sleep.

I am very hopeful this Vitamin D replacement is going to work.

---

06 Jan 12 - 05:59 PM (#3286210)
Subject: RE: BS: So that's why I feel like crap!
From: Donuel

Virginia tam

The title is a great punchline.


Hey I make cartoons, what am I to think.


I took vitamin D and came down with the worst hip pain in my life.
It was sheer coincidence. The acute infarction and necrotization of the hip joint was most likely due to tennis exertion.

Two years later I have escaped hip replacement, have full range of motion and only have joint weakness in the morning.

The crutches and canes last winter are all behind me.

The last therapeutic step was a Chiropractor who tore all the scar tissue apart in the hip joint.

All the Rheumatologists and Orthopedist people were worthless. They just wanted to put me on the artificial hip assembly line. The MRI pictures did help me get a handle on self awareness and healing.

Bottom line; I must have grown or opened a blood vessel to the hip joint and facillitated healing.

---

14 Jan 12 - 05:31 AM (#3290436)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Donuel - I am happy you found a solution. In UK hip replacements are not usually offered for RA damaged joints. I wouldn't want them in any case.
My pain is everywhere. Fingers, hands ,wrists, fore arms, shoulders and neck. Toes, feet, heels, ankles knees. lower leg bones and hips. If the wrists, outside and heels of hands and little fingers are particularly achy then typically the same areas on my feet will be. That is the bilateral effect of RA. The long bone ache is probably do to the vitamin D deficiency.

I may have been a bit premature about feeling better with vitamin D, but it is early days. Much of what I have read indicates it can be 6 months to a year before you start noticing improvement. I've only been on replacement therapy for a couple of weeks.

One good thing. First acupuncture appointment yesterday. Last night I woke once at 4.20am for bathroom break. Not 3 or more times for the typical throbbing in shoulders, arms and hands. Straight back to bed without the usual wandering around shaking and massaging the pain away. I have not had that long a sleep in months.

:~)

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14 Jan 12 - 07:18 AM (#3290476)
Subject: RE: BS: So that's why I feel like crap!
From: fat B****rd

Good to hear something positive from you VT. Take care and best from Charlie.

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14 Jan 12 - 12:05 PM (#3290580)
Subject: RE: BS: So that's why I feel like crap!
From: Stringsinger

Vitamins, for the most part, make expensive urine.

---

14 Jan 12 - 01:52 PM (#3290629)
Subject: RE: BS: So that's why I feel like crap!
From: gnu

Well, that depends. If you can't get outside to get some sun, taking D is a good idea. There are other examples.

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14 Jan 12 - 05:12 PM (#3290685)
Subject: RE: BS: So that's why I feel like crap!
From: ranger1

Oh, good. I'm glad to hear you're getting acupuncture. When I first met my neighbor Kathy, she was suffering from fibromyalgia. Her doctor suggested acupuncture and gave her a referral, and now she is symptom free.

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15 Jan 12 - 08:35 AM (#3290870)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

I slept really well last night too. Wheee!

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15 Jan 12 - 08:38 AM (#3290872)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

wheee and whoopie!

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15 Jan 12 - 10:16 AM (#3290901)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,A folk singing Dr

Medicines can be over subscribed and the pharmaceutical industry does, on an international scale, find symptoms to match their products which is much cheaper than researching products to match symptoms.

That said, under the other guest title I use, which if Joe Offer will indulge me, I would rather it not be known I am a doctor,as I love the freedom to say things such ast above,...

I sometimes portray all uk folk enthusiasts, self included, as weird beards and ethnic skirt merchants. Many point out thy are not and I am being offensive. Maybe, so I don't parody myself and others like tht now.

But people on this thread seem happy not to challenge the outrageous crap such as "NHS doctors kill thousands.". "The NHS aren't interested in women over 45.".

Utter bollocks and shame on you. The fat majority of patients are elderly ladies and diet, lifestyle and sheer mortality kill you, despie the best efforts of doctors.

Richard Bridge is right. Find a competent legal firm if you feel that strongly. He may advise it objectively, but I advise it in a put up or shut up sense.

Perpetuating myths over doctors is ok but pointing ours stereotypes that haunt folk clubs isn't ?

Out of interest, vitamin deficiencies do affect your general well being but healthy diets that contain myriad vitamins ensure more metabolic absorption than a tablet product aimed at the worried well.

---

15 Jan 12 - 10:18 AM (#3290902)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Folk singing Dr

Sorry, iPad keyboard autocorrect crap and it posted without preview edit due to fat thumbs.

---

15 Jan 12 - 10:38 AM (#3290910)
Subject: RE: BS: So that's why I feel like crap!
From: Jeri

If you take a statin medication for cholesterol, you should be taking CoenzymeQ10 (CoQ10)

I think if a doctor has read available studies on it, he'd agree.

I felt miserable, had I had weakness and muscle cramps, and starting CoQ10 was like a miracle.

I also take vitamin D. Even if I were to spend the needed amount of time in the sun, I'd need sunscreen, and I don't eat/drink enough vitamin D rich foods.

---

15 Jan 12 - 11:14 AM (#3290931)
Subject: RE: BS: So that's why I feel like crap!
From: bobad

I take statins and my Doc told me that the evidence on CoQ10 is not definitive and since I don't have identifiable side effects I don't take it, chiefly because of cost - it's not inexpensive.

This from the Mayo Clinic site:

Can coenzyme Q10 reduce the risk of serious side effects from statin medications?
Answer
from Thomas Behrenbeck, M.D., Ph.D.

At this time, coenzyme Q10 is not universally recommended for preventing statin side effects.

Coenzyme Q10 is a substance made naturally by your body. As a supplement, it's usually sold as a capsule and is marketed under brand names such as Co-Q10, Coenzyme Q10, LiQsorb, Liquid Co-Q10 and Q-Gel.

Some researchers think that taking a coenzyme Q10 supplement may reduce the risk of serious muscle damage (rhabdomyolysis). And some small reports suggest that troubling side effects — muscle and joint aches — from statins might be reduced if you take coenzyme Q10 along with a statin. However, no large studies have confirmed this theory, so current guidelines don't recommend routine use of coenzyme Q10 in people taking statins.

Coenzyme Q10 doesn't cause side effects for most people. However, as with other herbal and dietary supplements, it's not regulated by the Food and Drug Administration.

If you have muscle aches or other troubling symptoms after starting statin medications, talk to your doctor as soon as possible. Statins are effective cholesterol-lowering medications for many people, and it's important to do everything possible to continue taking them as directed.

---

15 Jan 12 - 01:42 PM (#3290974)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Eliza

WELL! Folk singing Doctor, you sound JUST like my bossy arrogant sister, (a doctor in Scotland). I've never yet been privileged to experience "the best efforts of doctors", the ones I've come across in my long life have all been like you, ie dismissive, critical and unsympathetic. How many ordinary folk have a "healthy diets that contain myriad vitamins"? Put up or shut up indeed! That is exactly the kind of utterance I'd expect from a doctor. Utter bollocks and shame on YOU!

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15 Jan 12 - 08:40 PM (#3291185)
Subject: RE: BS: So that's why I feel like crap!
From: andrew e

I like this website.

Natural Health News

http://www.naturalnews.com/

---

16 Jan 12 - 05:23 AM (#3291290)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

I am not on statins. My cholesterol is not terrible given my age, weight and general unfitness. I was told the best treatment for it is exercise. I am not on blood pressure meds. Last 2 checks of blood pressure were good. Best treatment to keep it that way, again exercise. Told to come back in 6 months for another check, unless I started feeling bad again, which I am because the methotrexate dosage has been increased and it is building up toxicity again.

My diet is pretty damned healthy since the variety of fruit and veg is so good and available in UK. It was not so good in the US as supermarket fare was pretty crap and expensive compared to the income I had to spend on food.

Breakfast is either muesli or cornflakes with skim milk and fruit. About once a month I have whole meal toast with teaspoon of organic peanut butter. Cooked breakfast (eggs, mushrooms, toast) never happens more than twice a month, weekend treat. Bacon or sausage is a once or twice a year treat.

Weekday lunch is 2 raw carrots, 2 celery stalks, 4 inches of cucumber, 5 cherry tomatoes and a handful of grapes every day supplemented with other fruit in season and either light soft cheese on Oat Nairns (no more than 4) or a bit of roast chicken or turkey. Unless I have made homemade chicken veg soup. Then it is only the fruit that supplements. I usually miss lunch on the weekends because I have breakfast late.

I live with a vegetarian so weekday dinners are typically vegetarian. I am not big on cheese but do like Quorn products. Use extra virgin olive oil or cholesterol busting spreads. Rarely have butter in or on anything.

My favourite drink is ice water (lots of ice). One coffee per day. 0 to 2 cups of pepperment tea per day. Red wine or real ale about once a month. Occasional juice. No soda. No squash.

My partner likes chocolate so the rule is he can only have Cadbury Turkish Delight or Cream Eggs in the house, both of which I find vile. He buys crisps for lunch. I am not big on salty snacks so this is no temptation for me.

My diet is pretty good quality and quantity wise.

I do have sensitivity to sun thanks to all the meds I have been on. I get blistery hives, so when I am out, I must cover up.

I am sedentary because well to put it bluntly it hurts to move. My feet and ankles feel fused, locked in position. My hips seize up within in 5 minutes of walking. I have a walker which when I use causes pain in the shoulders and wrists. Also being in constant pain, I usually don't feel like doing much of anything. The simplest tasks exhaust me. As a doctor I am sure you understand fatigue and its relationship to rheumatoid arthritis?

I was told by my RA nurse that joint replacements are an unlikely option because the disease would just attack the tissue around replaced joints. Though I have heard of others getting joint replacements with RA.

My RA consultant doesn't see me for a couple of years and then tells me off for taking a break from the methotrexate when it clearly shows in my records why I was taken off. Increased liver enzymes (her own colleage told me to stop taking it) and high blood pressure, angina and palpitations which (3 times now) gets unmanageable as the metho builds up in my system. Symptoms which magically fade when I am not taking it.

Am I missing something here or are the professionals, monitoring my care, missing something? Sorry to be such pill, but then I am full up with them.

---

16 Jan 12 - 06:17 AM (#3291306)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Patsy

I thought that the put up and shut up attitude was a thing of the not so distant past. Sometimes I think that some doctors (not all) are on a planet of their own and that we really haven't got anything better to do in our day than trying to find a proper answer or diagnosis to our problems. They seem to forget that people have individual lives and have all sorts of different situations like mobility, family worries or finance to fit around their illnesses. My reaction sometimes is to just not bother to go to a doctor at all but then if something cropped up my family would not be very pleased with me for not going.

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16 Jan 12 - 12:32 PM (#3291453)
Subject: RE: BS: So that's why I feel like crap!
From: Musket

What have I learned from this thread? Possibly that some people reckon all doctors are bossy and arrogant. I'm married to one and she is bossy, but instead of being arrogant, I would say she is infuriatingly correct, even though at times I might not wish to hear it.

Doctors do have the problem of not always being heard or their evidence based advice being compared to an airhead in a beauty magazine who says something different. I don't blame the vast majority for not wanting to debate nonsense. Either something works for you or it doesn't. Ben Goldacre in his many newspaper articles and his excellent book Bad Science points out that placebo effect is about 20% Which means even if something that is moonshine such as homeopathy, one in five people will get a positive effect from it.

If Patsy feels not going to see a doctor is the answer, I would agree. After all, a doctor is interested in your healthcare needs, not your unfulfilled aspirations.

I drink more than I should, eat a little more than I should, and not always of the healthiest items, and exercise? Well, I could do better. I feel OK. I really do. But, and this is the important bit; the advice a doctor would give me to change my lifestyle is still good objective advice, even if I might not want to heed it.

---

16 Jan 12 - 01:29 PM (#3291479)
Subject: RE: BS: So that's why I feel like crap!
From: foggers

I would be the first to defend the NHS in UK; our own recent experience of serious illness led to a procession of health professionals in our lives, ALL of whom were great. I say that in the context of understanding the pressures and limitations faced by health practitioners from paramedics, hospital based staff, our GP and practice nurse.

We have free health care for major conditions and free advice on other health issues such as smoking and weight loss. Compared to other parts of the world we are most fortunate and we should be fighting to keep our NHS a public service, rather than criticising NHS staff who maybe don't know everything we believe they should, or who may occasionally present as inattentive\arrogant. (In the same way that some folkies live up to the stereotype by having long hair and ethnic fair trade clothes!). The NHS is not perfect (nothing is) but I'd far rather have it than not.

And I don't interpret VT's experience as a critique of the whole NHS; it is one person's narrative of their health issues; and I am glad to hear of some early signs of improvement!

---

16 Jan 12 - 01:57 PM (#3291500)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

I still have hope I am going to beat this disease. But I do feel my care has been a bit uncoordinated.

I have had seriously high blood pressure events. One that landed me in hospital observation for 6 hours and got me referred to a cardiologist. Discovered angina and palpitations and tiny bit of sluggishness in lower left quadrant of heart. The high BP, angina and palpitations cleared up after coming off methotrexate, twice now. I have been tried on about 4 different BP meds which caused reactions the worst being raised liver enzymes. Starting to get the palpitations again as I have been back on metho and increased dosage for about 8 weeks.

I guess I find it a bit annoying that my consultant (who tried to get me to see her privately, implying I would get better care) didn't bother to check my notes to see why I had come off the methotrexate, before she started fussing at me for it. It doesn't exactly fill me with confidence.

Today I had pain clinic review with nurse who after seeing results of my vitamin D test asked me to wait to see clinic doctor. I have been informed that I will have to take daily vitamin D supplement for the rest of my life, different dosages and have regular blood tests. He will send letter to my GP and warned me that the GP probably will not pay for the supplement, so I will have to. No problem. I can do that.

He also prescribed something called Lyrica pregabalin for neuropathic pain. One in the morning and one in the evening. Oh goody. Yet another pill.

---

16 Jan 12 - 02:37 PM (#3291527)
Subject: RE: BS: So that's why I feel like crap!
From: foggers

Yes I think the biggest problem people experience with health services comes down to the issue of coordination between different departments etc. I hope that someone in the team around you takes hold of the situation, looks at your history, the interactions between your health needs and the various treatment options, VT. Fingers crossed for you!

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16 Jan 12 - 02:52 PM (#3291531)
Subject: RE: BS: So that's why I feel like crap!
From: katlaughing

Vtam, I haven't been in here for awhile, but have read your last two detailed postings. As you may know I have had a ton of health challenges over the years which have made it very difficult for me to get up and move because it hurts too much. That's the least of it, but does have a profound effect on everything else which needs mending.

One day I was really scared and down about what was going on with pulmonary hypertension and chronic nocturnal hypoventialation (not breathing in and out deeply enough and filling up with CO2.) That's being addressed and getting better, BUT one real change which had to happen for me was to figure out a way to lose weight.

That day I was so down, I went to Netflix to watch something just to get my mind off of things for a bit. One of the first random suggestions to come up was a docu made by an Australian called "Fat, Sick, And Nearly Dead." It felt as though the Cosmic were sending me a message, so I watched it. It was inspiring, full of important nutritional information AND,, most importantly for me, it made it easy to change my diet for the better. I lost 3.5 lbs the first week, safely, still eating regular meals. All I added was up to 32 ounces of juice extract from fresh fruits and vegetables. He had one visual which really worked for me: a large platter filled with the recommended daily intake of fruits and veggies. It was huge. Like you, I thought I was being so good eating celery, carrots, etc., but, as the docs and nutritionists in his film show, that is not nearly enough to get the micronutrients our bodies need. When he showed that platter, he laughed and said there was no way he could eat all of that in a day, nor could I, BUT by getting a juice extractor, it becomes a fairly easy and healthy task.

Since I started, I have had more energy than I've had in years and I *crave* the juice instead of the bit of chocolate or whatever I used to. My docs are amazed at how much better my colour is and I continue to lose weight which can only help everything else.

IMO, every health professional and anyone who is interested in good nutrition, skinny, fat or in-between, should watch it. It is highly entertaining and fun as well as very informative.

One woman who might have needed to lose 10 lbs at the most, said she felt 21 again. A trucker who started out at 439 lbs and on scads of meds lost 202lbs, got off the meds, and is now helping others to turn their lives around with good nutrition through juicing. They have a free website with recipes for soups, smoothies, and juices, at www.ReBootYourLife.com. I hope this is helpful and you get a chance to watch the documentary.

With all good wishes,

kat

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17 Jan 12 - 05:14 PM (#3291741)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

Kat, have you been to that website lately? I just tried and apparently that site "may be for sale."

VTam. I've been following this thread but not known what to write. I have no advice to offer. I hope you find a solution to your health care and health problems.

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17 Jan 12 - 08:47 PM (#3291861)
Subject: RE: BS: So that's why I feel like crap!
From: Donuel

the wierdest most perplexing and profound thing happened nine days ago. I woke up with no headaches, neck aches, arthritis, sore hip, ultra frequent having to go or severe chronic fatigue. Its like I have instantly returned to the state of health I had over 10 years ago.

If I could bottle whatever happened, I would give you the first drink.

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17 Jan 12 - 09:04 PM (#3291869)
Subject: RE: BS: So that's why I feel like crap!
From: Bobert

Aging sucks... Most of us are into the last half of our lives and, hey, in the words of Buddy Miller "No one told us about this part"... But then I talk with my 92 year old mother and go, "Hey, I'm not so bad after all"...

I haste it that any on my friends here are going thru anything... All ya' can do is be smart, be informed, eat right and get in as much exercise as you can...

Sorry, Tam... And Kat... If I could take it off ya'll I would...

"Put the load right on me"...

B~

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17 Jan 12 - 10:08 PM (#3291900)
Subject: RE: BS: So that's why I feel like crap!
From: Donuel

The most amazing thing of all is that even my vision has improved by a good 50% over the last week.

The change is staggering. Perhaps its tmi but even the big O went from 70 to 100.

The only thing I can think is that some kind of auto immune disorder has disappeared or gone into remission or maybe an undiagnosed type 2 diabetes has come under control.

I am truly not bragging, I only want to impart that such rapid change is obviously possible. At first I was holding my breath that the improvements would pass. So far so good.

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17 Jan 12 - 10:23 PM (#3291908)
Subject: RE: BS: So that's why I feel like crap!
From: Bobert

Hey, Donuel... 3 months ago my mom was blind and now she can read a newspaper without glasses!!! Just a matter about the correct eye drops...

B~

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18 Jan 12 - 03:02 PM (#3292307)
Subject: RE: BS: So that's why I feel like crap!
From: katlaughing

ChanteyLass, that would be because I put the wrong name up for the website. Duh! *shakes head at self* Here is the Australian site which leads to others, I think, if not it's still got all the recipes, etc.: Join the ReBoot.

Donuel, that is wonderful! Reminds me of a church marquee sign I saw this morning: "God can make anything new, including you." (Of course, the deity of one's choice or not can be substituted.)

Bobert, you are a darlin'. Thanks, but I really am doing fantastic and losing. It feels so good!

VTam, hope you are doing better.

kat

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18 Jan 12 - 04:54 PM (#3292388)
Subject: RE: BS: So that's why I feel like crap!
From: Crowhugger

»But I do feel my care has been a bit uncoordinated«

Lately I take a "human resources" approach to my health care:

I consider my General Practitioner, an M.D., to be my Vice-President of Health Management. My husband is sort of a co-CEO with me, although I am the senior partner of the two of us as far as my own health is concerned. I serve the same junior-CEO role for him. We both have chronic illnesses that can incapacitate, so it can easily happen that when we need to be our own advocate, we haven't the energy for it. Enter the junior-CEO.

Even though I respect my GP, he is only my VP--the buck does not stop in his lap, it stops in my life and to a great extent also my husband's, since he picks up the slack when I'm unwell (and vice versa). As CEO of my health I am the top dog, fully entitled to bring in whatever other consultants I deem appropriate, from various health professionals to Mudcat. That also means it is my responsibility to help them understand (even if they won't totally accept) each other's presence on my team, not always easy to do!

A GP probably should be quite on top of things--in the strictly medical world he is as much a general manager as anything, the one medical person who gets copies of all the specialists' reports. However I have had enough experience with the medical establishment to know full well that these people are just human beings. A family squabble at breakfast or a dying patient can mean mean bad note-taking for that day. So I always remind him of whatever I think is relevant to a given visit, even if he doesn't happen to ask me. Just in case he didn't read or didn't keep quite good enough notes. Fortunately, he is not one who resorts to blaming the victim.

As far as medical types understanding fatigue or pain or anything else, again, they are human--by which I mean: If they haven't felt it or at least lived in very close quarters with it, no they probably don't understand it. And I don't expect them to. But I DO expect them to BELIEVE me and RESPECT me. Unfortunately that can be scarce when it comes to non-cancer pain. Fortunately, I have a great pain specialist on my team.

Years ago my husband and I had the the same specialist, a jackass IMO whom I soon dropped like a hot potato because I found him to be a "medical chauvinist pig" -- he was inadvertently disrepectful of women in his practice. I know this because a volunteer position I held made me privy to a lot of talk that would never be repeated in public or in writing. Men found him to be a perfectly fine doctor. He was of a generation where many considered women to be 2nd class citizens who may speak only when spoken to.

Eventually due to some sort of illness this doc had to take prednisone and some serious time off work. When my husband saw him after that experience, the doc was a whole new empathetic individual! He had a whole new appreciation for both fatigue and the crazy side-effects of the wicked but sometimes necessary drug, prednisone. They ARE human. We all only know what we know, including health professionals.

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18 Jan 12 - 10:14 PM (#3292548)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

Kat, thanks, that works, and I can understand they mix-up.

Everyone, reading the health threads has made me aware that Mudcat is a community. I love the way people support each other here. I continue to wish for healing for all of you.

Right now I'm pretty good--chronic conditions are "under control" and I have no new complaints. When I see a doctor (and I have many), I always hold my breath while he goes over test results, takes my blood pressure, etc. But once in a while a doctor asks me how I feel and I say fine. Then he tells me that my tests show a new problem! A hypochondriac complains when nothing is wrong. I must be the opposite of a hypochondriac!

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19 Jan 12 - 12:02 AM (#3292597)
Subject: RE: BS: So that's why I feel like crap!
From: Crowhugger

Mathematically (and maybe metaphorically) you're 1 over a hypochondriac, ChanteyLass!

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19 Jan 12 - 12:27 AM (#3292601)
Subject: RE: BS: So that's why I feel like crap!
From: katlaughing

ChanteyLass, thanks, glad it works this time.:-) I have already seen the effect juicing has had on me, besides losing weight. I had a wonderful visit with the kidney specialist, today. Posted about it in the decluttering thread. Really good news!

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19 Jan 12 - 05:14 PM (#3293052)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Thanks Kat and others.

I will be looking at that juice diet thing this weekend.

Been sleeping very well the several nights. Yesterday evening spent singing (and little guitar playing as much as hands let me). I was just so up. Felt good.

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19 Jan 12 - 05:42 PM (#3293064)
Subject: RE: BS: So that's why I feel like crap!
From: Raptor

Doctors brought me back from the DEAD this past year. I trust them more than the bitching old malcontent folkies slagging them around here.

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30 Jan 12 - 03:05 PM (#3299229)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Raptor I am happy for your successful and productive experience with doctors.

I have been suffering and getting more and more ill for 6 years with a possible under / mis- diagnoses.

I am almost a month into the Vitamin D supplement and 2 weeks into the Lyrica meds and I am sleeping great and feeling much much better. My long bones are no longer throbbing with pain, though they are still tender if I press.   I was nearly jogging around work today. It is just wonderful to be able to move like this.

I still get very stiff after periods of sitting but it quickly dissipates upon movement. I do not wake feeling like I am coming down with the flu.

It will be interesting to see if the my blood results show any changes. They have changed little since first diagnoses of RA regardless of the dosage of the methotrexate to suppress my immune system.   

Hoping this is not a temporary remission and that the vitamin D is really working. Long may it reign.

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30 Jan 12 - 03:25 PM (#3299236)
Subject: RE: BS: So that's why I feel like crap!
From: fat B****rd

I'm so pleased you're beginning to feel better VT. Long may it continue.
Charlie

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30 Jan 12 - 04:48 PM (#3299263)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

is it premature to change the thread title to

So that's why I am feeling better?

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30 Jan 12 - 05:05 PM (#3299274)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,999

Good news, VT. I'm happy for you.

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06 Feb 12 - 04:36 PM (#3303265)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Discovered on Friday and Saturday my joints can still predict snow. :(

6+ inches of snow on Saturday night :)

I couldn't go play in it on Sunday. :(

Friday used walker/wheelchair thingie to get around to hospital appointments and to town for eye appointment :)

Annoyed some people on the buses who were sitting in the designated wheel chair area. I got angry stares. :(

Even though today is National call in sick day and even though I was in lots of pain, I slogged through snow and slush (not really as TSO literally drove me door to door) to get into work today and got a lot of backlogged work done. :)

All in all, either the Vitamin D or the Lyrica is working (or maybe both together) as I rarely have the constant throbbing ache and I can now even press on the long bone areas with only a little pain. :)

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07 Feb 12 - 01:57 AM (#3303515)
Subject: RE: BS: So that's why I feel like crap!
From: Crowhugger

Hey that's wonderful news, VTam! I'm so glad I checked into this thread. Fingers crossed it lasts and lasts and lasts...
:-)

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07 Feb 12 - 02:26 AM (#3303522)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Iona

You guys ever hear about adrenal failure? My mother has it baaad. But she's followed the instructions of the folks on this site , and she's on the road to recovery, and now can leave the house without crashing afterwards!! Hurrah!

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07 Feb 12 - 02:38 AM (#3303526)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Iona

My 23 year old daughter died of adrenal failure in 2005. 6 months later I started getting sick.

Forgot to add I am sleeping for longer periods with fewer wakings. Amazing how much difference sleep makes. :)

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07 Feb 12 - 05:45 PM (#3303977)
Subject: RE: BS: So that's why I feel like crap!
From: YorkshireYankee

So glad to hear your pain is diminishing and your health is improving! May this improved state of affairs continue!

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15 Feb 12 - 05:01 PM (#3309105)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Appointment with GP today. My vitamin D blood serum level is the lowest seen in his surgery to date. Normal is 50-140 nmol/L. Mine is 19.

It is true that Vitamin D deficiency just recently has been linked to so many problems. So no reason for me to be going off about poor care. This is a new thing.

My fear is that I may already have osteomalacia (bone deformity). I am finding rising from sitting and stairs very very difficult. My walk is much altered over the years.

On the upside treatment is simple and once we get Vit D serum level to normal range maintenance is easy. Though it can take months to get it up to normal and longer for the bone pain to diminish.

Pain was much less for a time but seems to be creeping up again. I am waking several times a night again. I think perhaps it was the Lyrica that was masking it well and now is not so much anymore. If this continues, I will talk to pain clinic doc. He seemed to think that I will need the Lyrica increased gradually until the Vitamin D is sorted.

As an aside the near loss of job just before Christmas, which turned into having 2 jobs in 2 venues has been putting more stress on me. 4 colleagues down (2 resignations, 1 carer for member of family and 1 going part time for 6 months until retirement) means there is more workload on me. This may be contributing to my wakefulness and increased pain.

To end with a bit more good news. I was worried that the methotrexate was causing my BP to go up again.   Mainly the edema is back in the right foot, but some other familiar symptoms associated with high BP thought not terrible. Doc took my BP today. 135 over 85. Brilliant!

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15 Feb 12 - 05:40 PM (#3309115)
Subject: RE: BS: So that's why I feel like crap!
From: gnu

"Mainly the edema is back in the right foot, but some other familiar symptoms associated with high BP thought not terrible."

Is edema in the feet associated with high blood pressure?

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15 Feb 12 - 08:45 PM (#3309207)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,999

"Is edema in the feet associated with high blood pressure?"

It can be, but there are many other causes of edema. For that condition one should seek a doctor's advice because narrowing down the cause involves blood tests, medical histories, etc. It ain't a yes-no answer.

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15 Feb 12 - 08:54 PM (#3309215)
Subject: RE: BS: So that's why I feel like crap!
From: Bobert

The P-Vine has been stuffing me with Vitamin D because I wear sun-block...

B~

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16 Feb 12 - 03:43 AM (#3309308)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Historically for me swelling of the feet and ankles accompanied by occasional strobing vision and sparks and waking a couple of times a night with a painful and audible blood throbbing in my head have been associated with high blood pressure events. These are the symptoms led me to A&E a couple of years ago which then landed me in observation ward for a BP that was alarmingly high. Something like 214 /96.

This morning the headache was so bad TSO wanted to take me to A&E. Instead I had him brush my hair, I took all my meds and vitamins with fresh squeezed juice and then wrapped a frozen buckwheat neck wrap around my head. I feel quite a bit better.

Got online to find out if it is safe to take pain killers with Lyrica and found out that Lyrica can cause edema in hands and feet. Ahhhh! Perhaps that swelling is also in skull causing same feeling I had with high BP events.

Still going to do what Doc said and get a BP gauge to measure these weird events.

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16 Feb 12 - 04:04 PM (#3309700)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Iona

VirginiaTam:
Oh, that's awful, I'm so sorry! My mom almost died of it several times, too. :( You're right, sleep has a LOT to do with it.

Got adrenal failure? Sleep all you can, it will help them to heal .

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16 Apr 12 - 06:59 AM (#3338978)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Well I have been devout about all the meds and vitamins supplements. Only missed one dose of lyrica (pregabalon) but my RA inflammation has gone higher so dosage of methotrexate has been increased.

Still waking 3 to 5 times a night with pain. My hands and feet hurt terribly. Walking is stilted, hips still seize up. Using walker helps with feet and hips but kills my hands wrists and shoulders. Started wearing writs braces again.

Still no DLA. I think they forgot. Have Access to Work (fares to works for taxis if needed) and disabled bus pass.

I think perhaps the stress of Hilary's illness has exacerbated my illness. That and I am currently covering for 4 colleagues at 2 different sites at work. Go home every day worried about what did not get done. This is unsustainable.

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17 Apr 12 - 01:44 AM (#3339380)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity

Jeez!..With all those nasty tasting 'remedies' god only knows how her stomach, and the rest of her will feel like!

GfS

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17 Apr 12 - 02:04 PM (#3339611)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Christ almighty I am so tired. Damned bosses at work won't provide taxi fare for me to get from compulsory meeting at one site in the morning to work at another site which needs cover in the afternoon.

Why can't you walk?
Because I have a disability which won't let me walk more than 40 metres. The 2 sites are more than 700 metres from each other.

Why can't you use bus?
Because the bus stops are more than 600 metres from each site. My line manager knows all this. She would normally provide the lift.

She is not available due to compassionate leave.
You have been dumping all her work down onto me for the last 3 weeks. Didn't you think I knew that?

Why can't you ask one of your colleagues to give you a lift?
Why should they pay (their time and petrol) to transport me from one site to another?

Why can't you provide the lift if you don't want to pay taxi fare out your budget? You are supposed to be at the meeting. Because I am going to your line manager's family member's funeral.

I am not paying out of my pocket to go from meeting at one site to the site(my normal workplace) where they need cover.

STRESS!

Hilary's sugar is going up again now she is out of hospital and her PCP is being a bitch about prescribing long acting insulin.

SSSSSSTTTTTTREEEEEEESSSSSSSSS!

My inflammation is on the rise. Range of motion in hips almost nil. Hands and wrists throbbing. Feet too. Can't get my bones warm. Can't sleep.

ARRRGHHH.

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17 Apr 12 - 03:16 PM (#3339642)
Subject: RE: BS: So that's why I feel like crap!
From: Jack the Sailor

700 meters is not that far to walk. Its is a very short taxi ride. Perhaps there is an alternative. Here in the US, Medicare provides electric scooters to people with mobility problems. Is there a similar plan in the UK?

Medicare scooter

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17 Apr 12 - 03:38 PM (#3339652)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

JackTheSailor

There is Shop Mobility which you can rent scooter to help you get around the shopping centres and the High Street. Nothing else, unles I hire for myself. The council for which I work will not bear the cost. Oddly enough if I was on benefit I could probably get one through the council. But I can't store it in our 1st floor flat and already asked at my primary work place if I could store there. No room and would not be permitted to charge battery there.

So much for Access to Work.

In other STRESS worthy news

Paypal account hacked yesterday. Bank of Scotland account added, security questions and password changed, 4 payments (each for £121.00) made to different Easter European names and emails.
Called paypal, very helpful on the phone. Walked me through changing my security information. Stopped all transactions there but can't guaranty they won't come out of bank account yet. If they do they will refund. Sending 4 emails with case number one for each transaction. Use as proof to my bank if I become overdrawn as a result.
Bloody annoying and very stressful and is this a result of having new BT Infinity installed? Rep at Paypal said I should check to make certain that there are not others in our flats or near neighbours on the same IP address. Even more annoyance?
Hackers changed contact phone number on my account too by switching a few of the last 6 digits around.

Should I report this to police?

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18 Apr 12 - 01:56 PM (#3339981)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

ugghhh

ATOS medical assessment is on Monday 23 April.


ugghhh again

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21 May 12 - 01:35 PM (#3353886)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

So I failed the ATOS assessment. Unfortunately in the interim between date of assessment and today, my pain and inflammation has increased.

Pain clinic doc and nurse today said I must reduce the stress as it is contributing to increased inflammation and pain.

How?

Nothing I can do about my daughter's situation accept to keep sending her money.

Nothing I can do about the work situation but grin and nod and work my ass off to keep managers happy.

The last 4 months I have been covering for up to 4 colleagues including my line manager when she was out on leave for 3 weeks. Last week I got reamed in supervision for not prioritising tasks effectively. Some of my work got put on hold to deal with her work while she was on leave.

Scared shitless that if I miss work because of the pain then the hubs won't be covered. If the hubs aren't covered they will shut some of them down and make some of us redundant. My absence (even though disability related) almost lost me the job in December. Who do you think they will let go first?

I need the job to buy my daughter's medicines and help pay her medical bills. More stress.

I am trapped. I just want to go home to Virginia to die now. That is all I want. I can't do this anymore.

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21 May 12 - 02:41 PM (#3353909)
Subject: RE: BS: So that's why I feel like crap!
From: Q (Frank Staplin)

A sensible doctor, and there are many, does not prescribe dangerous drugs unless normal procedures fail (and the patient referred to specialists).

Leg cramps are common, not all treatments work of a specific individual. RLS (restless leg syndrome) often accompanies. Simple actions, such as more fluids, flexing muscles by walking or riding a bike, etc.- but they might be symptoms of something more serious. Sometimes Tylenol helps, but too large use of this over-the-counter drug can lead to severe liver problems. Good medical advice and follow-through are essential if cramps are seere or cause change in your activities or lack of sleep.

In our area of lack of effective sunlight (Canada), most general practicioners recommend that all patients take vitamin D supplement at the rate of about 1000 units per day.
Diets are often low in potassium, and supplements (bananas, sea salt, pickling brines utilizing potassium, etc.) are simple.

Methotrexate (for rheumatoid arthritis) has side effects, including nausea, loss of appetite (and in extreme cases loss of hair), bodily discomfort including leg pain, are warning signs that should cause the doctor to rethink his prescription of this drug. It has its uses, but side effects should be watched for. A good article is put out by the U. S. NIH- http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html

Also see Mayo Clinic summary, http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020/tab=InDepth
The Mayo Clinic has published a good book on arthritis and treatments (many depend on your life style, not drugs).

(Cortisone shots have helped my hips, but could be useless for someone else, do not take my experience as applicable to you).

Lots of good data on the net about drugs and their side effects, from National Institute of Health, Mayo Clinic, etc.
But your doctor should have carefully instructed his patients about side effects of drugs that he prescribes.

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21 May 12 - 05:19 PM (#3353978)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

Virginia, I can't offer any advice, but I'll continue praying.

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21 May 12 - 05:41 PM (#3353982)
Subject: RE: BS: So that's why I feel like crap!
From: Richard Bridge

100. Where woz you Terry?

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21 May 12 - 05:46 PM (#3353983)
Subject: RE: BS: So that's why I feel like crap!
From: Richard Bridge

More seriously, is there no-one any use in your union who can take on your bullying management?

Is there no local contingency layer to sue your bullying employer?

Are you at least suing those French bastards who run the government's plan to drive all those disabled to suicide?

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22 May 12 - 10:41 AM (#3354297)
Subject: RE: BS: So that's why I feel like crap!
From: YorkshireYankee

Wish I could do or suggest something that would help...
The misery of your situation(s) makes my heart just ache for you.
Oh, for a magic wand...

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22 May 12 - 10:47 AM (#3354301)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,CS

" in the interim between date of assessment and today, my pain and inflammation has increased. "

That's a legitimate reason to reapply.

"I am trapped. I just want to go home to Virginia to die now. That is all I want. I can't do this anymore."

STOP IT! Life can be difficult sometimes T, you've just got to suck it up sometimes. Indulging in death fantasies won't help, you, your daughter, or your husband, who loves you to bits!

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22 May 12 - 10:55 AM (#3354306)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,CS

And now that you hate me, do you still want to get together this weekend? ;-)

Not quite sure where you were talking about though. I'd had a few birthday shandies..

Focus on the upcoming folk season, Pigs in a fortnight. There will be fun and friends and a break from the stress. Hopefully a space to stop freaking for a few days!

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22 May 12 - 11:06 AM (#3354313)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,CS

A thought, Yvie might be a good source of advice where stress relief techniques are concerned. Might be worth having a chat with her when we see her?

It's also worth remembering that the nervous system can be like a strained muscle that needs proper soothing to recover proper functioning. Implementing stress reduction techniques can take practice and patience, just like the healing of a muscle sprain with massage and so-on.


http://www.livestrong.com/article/372808-guide-to-breathing-exercises/

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22 May 12 - 12:47 PM (#3354355)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

well that was interesting... NOT

100 mg of pregabalin last night and 50 this morning and spent the first 3 hours at work weeping uncontrollably. It was embarrassing that I could not get it under control. Not done that since Andie died. Not only was it embarrassing, it was scary. I felt afraid mainly of not being able to cope.

Around lunchtime was even weirder. Went all manic. Unable to sit still or stop talking at hyper speed. Calmed by 2 and then 4pm came the email from line manager. Report from my supervision last week. Advised that I take a course called Working Under Pressure. Now I am just fire breathing angry. I cope beautifully under pressure. It is one of my strengths. always remarked upon with admiration by previous managers. Called me unflappable and phlegmatic in the face of enormous stress.

This is utter shit! Well. I am just going to take my meds as prescribed and if this emo roller coaster happens again, I am going home and going to bed. I don't effin care if the hub is left uncovered.


Thanks for good thoughts.

CS Not suicidal. Just ready to give up, go home and carry on as long without medical care as my body will.
It is Jubilee Monday or Tuesday we are supposed to meet up. We are in Swansea this weekend with TSO's daughter. BTW... Yvie and Mike have pulled out of Piggies. Thank you for the breathing link. Saved to favorites and will send link to work.

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22 May 12 - 12:59 PM (#3354361)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,CS

*and breath out*

Thankyou for clearing that up.. For the record, people with my own illness have a high incidence of suicide. I've been at high risk myself. It's something I'm somewhat sensitised too. Apologies if I took your post the wrong way.. Words can mean different things to different people.
Bummer about Yvie & Mike btw - was looking fwd to catching up! Tsk.
See you Mon or Tues x

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23 May 12 - 01:51 PM (#3354815)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Sorted things out with the line manager. We are friends again. I am not to worry about losing my job due to sick/disability absence. I am doing a fabulous job. Lyrica (prgabalin) defo making paranoid. She completely understood. Said not to worry about making certain the hubs are covered. No one will be penalised if a hub is not covered due to extraordinary circumstances such as illness.

Had terrible terrible nightmare early last night while dozing on the sofa. Lost my daughters. Lost both of them and was frantically looking for them. Andie (young adult) had not been in contact for weeks and weeks and I didn't know where she was and had no way of contacting her. Leaving messages with her friends.

Hilary (about 5 or 6 - which is weird because the girls were only 3 years apart) was missing from the house which was a cobbled together mish mash of the house they grew up in and the hose I grew up in. The house was in my old neighbourhood. Knocking on doors, checking back yards and old scummy pond/pool.

Utter terror. Couldn't find them, woke up gasping and shouting. Then reality hit me and it was in some ways worse than the dream. There is no finding Andie. She is not ever coming home. Shaken and sobbing for several hours after that. So did not properly go to bed until around 2am. Thank you sudoku.
Still sleeping very poorly with lots of waking up in pain.

Spent this morning shaking, crying, feeling unsettled, unable to focus on anything.

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23 May 12 - 05:56 PM (#3354895)
Subject: RE: BS: So that's why I feel like crap!
From: Bat Goddess

Those of us who live in northern climes find we usually need to take vitamin D supplements as we age. My doctor (on the basis of blood work) recommended them about 5 years ago and I've been taking them since.

Recent studies have shown (as I have suspected for a loooooong time) that full fat cheese and full fat dairy is not the problem to cholesterol levels they once thought it was and has other health benefits:

"Studies at the Centers for Disease Control and Prevention (CDC) suggest that 79 million Americans are on the brink of developing diabetes. Here's the good news for cheese lovers: Harvard researchers have discovered a natural compound in full-fat dairy that could substantially lower your risk of blood sugar snafus and even full-blown diabetes. It's called trans-palmitoleic acid, and Harvard's 20-year study shows that folks with the highest levels of this fatty acid in their bloodstreams have a 60 percent lower risk of developing diabetes, possibly because this compound helps muscles burn blood sugar more effectively. To do: Enjoy eight ounces of full-fat milk or yogurt, or one ounce of full-fat cheese daily. Bonus: In the same Harvard study, people who enjoyed a serving or two of full-fat dairy daily also had less body fat and healthier cholesterol levels."

Despite being from Wisconsin, I'm not particularly crazy about milk. (Although I've discovered a commercial organic full fat brand that tastes GREAT and isn't much more expensive than usual supermarket milk.) But there is NO life without cheese...and I eat it multiple times a day. (Multiple varieties, too.)

Linn

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23 May 12 - 07:19 PM (#3354914)
Subject: RE: BS: So that's why I feel like crap!
From: YorkshireYankee

What a dreamnightmare! And it's obvious how waking up from it would feel even worse... Here's hoping you sleep better tonight.

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27 Jun 12 - 06:57 AM (#3368565)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

Tamara, we haven't heard from you for a while. How's it going? Fire off a PM to someone here if we can offer support, eh?

Maeve

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27 Jun 12 - 08:19 PM (#3368881)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

Yes, that would be good, either on this thread or the one about your daughter.

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27 Jun 12 - 08:26 PM (#3368883)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

Well sure- Tamara might want to post here or in the other thread, but she may also not wish to post...she hasn't done so, thus I imagine there's enough going on she may prefer to send a PM, or for that matter an email, to anyone she wants to contact.

I just want her to remember there are many folks here who can offer a listening ear, in private, should she want such a thing.

Got that, Tam?

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28 Jun 12 - 02:59 PM (#3369176)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

Refreshhhhhh

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29 Jun 12 - 08:18 PM (#3369850)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

Once more for this week...refresh.

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30 Jun 12 - 06:13 PM (#3370080)
Subject: RE: BS: So that's why I feel like crap!
From: Ebbie

And again...

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01 Jul 12 - 01:53 PM (#3370338)
Subject: RE: BS: So that's why I feel like crap!
From: gnu

Yeah... ?

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01 Jul 12 - 09:28 PM (#3370499)
Subject: RE: BS: So that's why I feel like crap!
From: katlaughing

I've just sent her an email. Hope we hear something.

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01 Jul 12 - 11:10 PM (#3370532)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

I also emailed her several days ago, kat. Don't wish to nag Tam but do wish to keep in touch if we can be helpful.

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02 Jul 12 - 02:31 PM (#3370840)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

You guys are lovely.

I've had a n email prompt that peeps were asking about me.

Sorry I have not been much online. A little facebooking early and late in day and then drug drowsing in between. On synthetic opiate based pain patch medium dose fentanyl and 2 different doses of pregabalin am and pm.

I am afraid I've been really out of it. missed two weeks of work. Returned today and was promptly sent back home as I am "not fit."

Hil and Galen have moved in with his parents in the midst of the terrible storms this past weekend. SHe had to give up her job and cannot cobra her insurance as she has moved to another state. I think this effects her ability to apply for food stamps and unemployment too.   

All her bloods and sugar are much better but she is still in a lot of pain and spleen is still very large.   She is scheduled to have a scan of hyper portal vein to see if there is a blockage. I don't know what after that.

I will be going home to US next week (provided I am well enough). Will see her then.

thank you all for your continued good thoughts.

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02 Jul 12 - 03:17 PM (#3370870)
Subject: RE: BS: So that's why I feel like crap!
From: gnu

Good thoughts... good luck.

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02 Jul 12 - 07:03 PM (#3371000)
Subject: RE: BS: So that's why I feel like crap!
From: Gurney

Strictly from memory: Was not Vitamin D routinely added to margarine in the UK since WWII to prevent rickets?
I seem to remember that immigrants from India were getting rickets due to using ghee rather than margarine, as their pigmentation did not allow their skin to manufacture enough D.

My information may be nearly 40 years out of date, but may be worth checking.

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02 Jul 12 - 07:51 PM (#3371025)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

Thanks, Tamara.

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09 Jul 12 - 04:45 PM (#3374124)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

3 steroid injections, 3 durogesic pain patches, lyrica 2x daily and still no relief.
One thing I can say about the pain patch is maybe it is not dealing with the pain but it's put me into the "Do I really care?" frame of mind about it.

Signed off work for another week.

Going to update the Hilary thread now.

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09 Jul 12 - 06:31 PM (#3374164)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

Thank you for the update here. In a few minutes I will check the other thread.

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09 Jul 12 - 07:38 PM (#3374186)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity

"So that's why I feel like crap!"


.....not only that...you're standing in a puddle of piss.

GfS

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10 Jul 12 - 12:09 PM (#3374451)
Subject: RE: BS: So that's why I feel like crap!
From: Ebbie

Your sense of humor lacks something, GfS.

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10 Jul 12 - 12:16 PM (#3374465)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity

Ebbie: "Your sense of humor lacks something, GfS"

The weak accuse others of their own weaknesses....'But You Can Leave Your Hat On'!

GfS

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10 Jul 12 - 03:07 PM (#3374566)
Subject: RE: BS: So that's why I feel like crap!
From: Ebbie

That's another way where we differ: You see it as humor. I see it as crude.

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10 Jul 12 - 03:11 PM (#3374570)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity

You see humor as crude?

GfS

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10 Jul 12 - 03:17 PM (#3374572)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Funnily enough all the pain meds are causing an unpleasant side effect, urgent bladder. So GfS is very near the mark. :)

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10 Jul 12 - 03:22 PM (#3374579)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity

Ahhh..The truth hurts!!....lol!

gfS

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10 Jul 12 - 03:50 PM (#3374593)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity

Well Ebbie might have a point as well...laughing at humor and satire can make your bladder a little bit more 'active' in an 'uncontrollable way'.

Ever head the expression, " I laughed so hard, I almost peed my pants!"
or, " I laughed so hard...it was the shits!"

GfS

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10 Jul 12 - 03:55 PM (#3374598)
Subject: RE: BS: So that's why I feel like crap!
From: gnu

Your posts speak volumes, GfnS. Well, the ones I actually read. Crawl back under your bridge.

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10 Jul 12 - 09:54 PM (#3374724)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Gust from Sanity

gnu: "Your posts speak volumes, GfnS. Well, the ones I actually read. Crawl back under your bridge."

We read the last few in the, 'delusional american politics' thread, and consider maybe pulling your head out...from under your 'bridge'!

GfS

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30 Oct 12 - 02:37 PM (#3428459)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

bleagh

Been too messed up to wrap my brain around Mudcat much. Hope peeps are all ok. Sorry if I am missing things. I am not fit for human interaction.

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30 Oct 12 - 05:51 PM (#3428559)
Subject: RE: BS: So that's why I feel like crap!
From: Sandra in Sydney

sending a big hug & lots of love

sandra

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30 Oct 12 - 06:25 PM (#3428574)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST

Have been wondering how you - and your daughter - are doing these days... and hoping things have maybe improved a little bit? Sounds like prolly not, though. So sorry!

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30 Oct 12 - 09:06 PM (#3428631)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

Hugs from me, too.

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31 Oct 12 - 03:23 AM (#3428715)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,VaTam on her Tab

I am hoping why I feel so horrible is that I am in withdrawal from the patches and lyrica. I can take the pain which at times is pretty bad. I can deal with the creepy cannot stand being inside my legs feeling, by taking half a co-codamol at night and going short walks during day. But the feeling like I am constantly swimming through mud is exhausting. Going on 3 weeks without the heavy pain meds. Determined to be free of them.

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31 Oct 12 - 06:56 PM (#3429068)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

More well-wishes!

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01 Nov 12 - 01:52 AM (#3429193)
Subject: RE: BS: So that's why I feel like crap!
From: YorkshireYankee

Oops, just realised I should have logged in yesterday, as I'm not currently posting from my home computer (am in the US, visiting family); in other words, "Guest, 30 Oct 12 - 06:25 PM" was me.

"Going on 3 weeks without the heavy pain meds. Determined to be free of them."

Wow, that's a helluva project/accomplishment! You have my deep respect and admiration, as well as my wishes that it will start to get easier very, very soon.

Fingers crossed for you...

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01 Nov 12 - 02:52 PM (#3429468)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Stopped the pain meds because I wanted my brain back (feeble as it is). At least when the zombie apocalypse starts I will have some useful function as diversionary bait.

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03 Nov 12 - 02:35 PM (#3430483)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

4 rice cakes some Healthy Choice low fat humus and glass of ginger ale and I DON'T feel like I have been punched in the stomach. Most I've eaten in one sitting for 4+ days. Maybe i have turned a corner on the pain killer withdrawal thing.

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03 Nov 12 - 03:46 PM (#3430515)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

Rooting for you from Maine, Tamara.

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03 Nov 12 - 07:11 PM (#3430592)
Subject: RE: BS: So that's why I feel like crap!
From: gnu

Me too.

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03 Nov 12 - 09:28 PM (#3430633)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

And me!

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04 Nov 12 - 05:36 AM (#3430733)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Thanks so much to each of you. Pretty damn miserable day out today, yet I feel enough better physically that I don't mind it.

Managed a little food last night. A toddler portion of steamed carrots and angel hair pasta tossed with Vitallife spread and Zesty Blend herb mix from Kroger. I really love Zesty Blend. Makes food taste wonderful without chemicals or salt.

This morning one slice oat toast and one scrambled free range egg. I even drank a little bit of coffee. Naughty, I know, but it was so good.

Instruments have been put away for nearly a year. Couldn't stand seeing them when it was too painful to play them. In the last few months I have also packed away my voice, pretty much. One song is about all I can manage due to the Sjogrens. Singing was my last bastion of creative expression so I got very low.

I was referred for some counselling in August to help me with pain and depression which ultimately led me to Expert Patient Programme. EPP is a group therapy course that lasts 6 weeks with 2 leaders who are people also dealing with the effects of long term illness. They have been trained to help others cope with pain, illness and the depression associated with illness.

My EPP action plan for the week was to get the little guitar out and try to play and sing some. I managed to play through one and half songs, singing along before my wrist said "NO MORE!" But even better, I pulled out shruti box and learned Let No Man Steal Your Time. WooHooT! I sang through 3 songs Wednesday and repeated this on Thursday.

Friday and Saturday too ill with the stomach thing to do anything but be a miserable sod.

Today the music making resumes. :)

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04 Nov 12 - 06:35 AM (#3430750)
Subject: RE: BS: So that's why I feel like crap!
From: Sandra in Sydney

well done, every day a bit more food & few more notes ...

The EPP programme sounds excellent, best wishes & a gentle hug

sandra

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04 Nov 12 - 06:36 AM (#3430751)
Subject: RE: BS: So that's why I feel like crap!
From: maeve

Oh, that's lovely news, Tamara! Thank you for letting us in on the music-making.

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04 Nov 12 - 11:50 AM (#3430852)
Subject: RE: BS: So that's why I feel like crap!
From: Rumncoke

I get told that the Atkins diet is bad for me, so I do the carb diet instead, feel dreadful, ache and sleep until I get fed up of near death experiences, start back on the salads, veges, fish eggs meat, feel great and go out to jump on the trampoline or ride my bike after two or three days depending on the weather. The best thing is that my fingers stop feeling like a bunch of bananas and become deft and supple again - it creeps up slowly when I eat complex carbs.

I think that Vitamin D is a fat soluble one, it is very important as we age. A portion of liver once a week is no bad thing, I would say.   

I don't use salt - when I do get cramp, which is not often, I find that I can get rid of it in a few minutes by drinking a pint or two of water.

Maybe I just work the wrong way round, but I suspect that it is the medics' understanding which is faulty.

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04 Nov 12 - 11:18 PM (#3431145)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity

Because you were wiped out??

GfS

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05 Nov 12 - 07:21 AM (#3431224)
Subject: RE: BS: So that's why I feel like crap!
From: saulgoldie

Best wishes, Virginia.

Saul

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05 Nov 12 - 05:50 PM (#3431544)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

VTam, I wish you continuing progress.

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24 Nov 12 - 08:48 AM (#3441424)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

I really hate rain and it does not like me. Someone cut my legs off please.

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24 Nov 12 - 11:37 AM (#3441522)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

Oh, dear. I'm so sorry.

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25 Nov 12 - 04:22 AM (#3441841)
Subject: RE: BS: So that's why I feel like crap!
From: Sandra in Sydney

sending hugs & hopes the weather improves

sandra

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22 Jan 13 - 01:09 PM (#3470012)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

New diagnosis. After being treated for rheumatoid arthritis since 2005 which never presented with typical symptoms, it has been determined I must have polymyagia rheumatica. So now on steroids until forever I guess. Also calcium/vitamin D supplement to protect my bones from the prednisolone.

I hate this body. Can I have a replacement please? At my age I am not fussed about what it looks like (except having hair in the correct places for a lady) just that it is mostly pain free and capable of long walks and hill climbing.

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22 Jan 13 - 05:36 PM (#3470126)
Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass

Another reason for me to wave the magic wand I don't have! I wish I could help. I hope the new meds help since I can't.

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23 Jan 13 - 03:26 AM (#3470249)
Subject: RE: BS: So that's why I feel like crap!
From: Sandra in Sydney

best wishes with your new diagnosis & medication

sandra

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23 Jan 13 - 03:51 AM (#3470254)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,CS

If that's what you got T, it's probably not surprising it wasn't diagnosed sooner, typical age of onset is 70! Still, I had a look at what they had to say on an arthritis site, and the prognosis looks pretty good actually, they say this kind of arthritis responds well to treatment with "low dose costicosteroids" which will last for about a year (up to two or three years for a few) after which treatment is concluded and the body should be back to normal, including being able to exercise etc. Fingers crossed the treatment gets it under control then!

BTW - hows Hilary doing? Any progress with her applications?

See you Sunday for Sea Lioning etc. Which reminds me *must sort out words to songs* I've also got to be extra strict, as we both cut out booze for the new year.... x

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23 Jan 13 - 05:00 AM (#3470275)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Hil is experiencing lots of physical arthritic like pain especially in hips. The way she describes it is totally new and most unpleasant phenomenon. She is losing weight quite quickly, due to lack of appetite. Hoping she adjusts to the meds soon and soon feels some pain relief. She has decided to come off all pain killers stronger than ibuprofen. Admirable.

Hope it's true that I will be feeling much better. Reading the prednisolone side effects. Damned scary. Start tomorrow morning with breakfast and move the hydroxychloroquine to evening meal.

I'm not drinking either with all these drugs. So we will have to be lemonade / ginger ale buddies.

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23 Jan 13 - 05:21 AM (#3470284)
Subject: RE: BS: So that's why I feel like crap!
From: GUEST,CS

Poor Hil, it sucks that she's got so little support from those in positions of power over her body.

"Reading the prednisolone side effects. Damned scary."

Yeah, they always are! I'm on a small cocktail of five different drugs at present, I make a point of not reading the reams of side effects for each one - there are just too many to choose from! o.O

Ginger ale it is, pinch me if I'm tempted to stray - hard!

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23 Jan 13 - 07:15 AM (#3470322)
Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam

Forgot to mention that RA consultant is going to refer me to surgeon to get tendon released in right wrist. Hope it can be done quite quickly and doesn't keep getting cancelled. Heard stories of people waiting for years for simple procedures that could make a huge difference in their lives.

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