What is Fibromyalgia?

[lib2DaBone]

I just started dating a wonderful lady that has Fibromyalgia. She is smart, witty and attractive.

I have googled the topic.. but I still don't understand what it is? I am trying to understand.

Everytime I do some research I come to a dead end.. that being that they really do not know what it is? I can't believe that in this day and age... with all the research.. we really can't define this disease?

I realize that this topic is much too involved for GD, but maybe someone can post a link?

[mdmc]

1. either an excuse to smoke pot

or a painful disease that can be managed through diet, drugs, and exercise.

[bobbolink]

48. Clearly, you've never dealt with it.

geeeeez....

[butterfly77]

131. Why do people need an excuse to smoke pot...

do people need one to drink alcohol or pop pills...

[taterguy]

2. Ask a librarian. That's what they're paid for

:eyes:

[lib2DaBone]

7. Thanks. I will do that.

[JanMichael]

42. my wife is a librarian

and she said, "there is nothing wrong with asking on an internet forum, and maybe that tater guy is in a bad mood."

Actually, she said something else that was uglier after the comma...but, hey.

[Shell Beau]

45. I think that is just his kind of sense of humor. I could so be wrong,

but he seems the sarcastic type. And from time to time, he cracks me up.

[Political Heretic]

100. No, he's just a dick.

:)

[roguevalley]

157. my cousin has it. its a painful thing and really tough to have as bad

as her.

[Name removed]

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[Name removed]

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[Ian David]

3. My guess is someday they'll realize it's actually three or more different disorders...

... that have all been mistakenly categorized as one illness.

[surrealAmerican]

17. Could be. Right now it's just a set of symptoms ...

... with no known cause.

[gkhouston]

36. +1. n/t

[Hekate]

116. Actually approximately a dozen --> see link

http://www.fmnetnews.com/basics-overlap.php

[H2O Man]

128. Very likely .....

It appears to be a cluster of symptoms, which could be two or more disorders with overlap. Of course, those disorders could be related.

[tonysam]

4. Try this.

Mayo Clinic

[virgogal]

5. Some MDs say it doesn't exist,some do. I had a friend diagnosed

with it but now it has gone away.

A mystery disease------and I have no opinion on it personally.

[tonysam]

10. I have heard the same thing. I have also heard that it is very difficult

for those who have it to get permanent disability because Social Security often doesn't take it seriously.

[DURHAM D]

57. My niece has it. She applied for disability (twice) but didn't get it.

The third time she applied the case worker noticed in the file that she had recently been diagnosed bi-polar. So, she got disability. Go figure...

[lazarus]

103. I have it

and am on disability. Then again, I've got other issues, too, but my disability lawyer said that judges are ordered to consider fibro a legitimate disabling disease.

[rocktivity]

27. I can remember when doctors said the exact same thing

about menstrual cramps.

:eyes:
rocktivity

[tavalon]

104. Yeah, funny that

When doctors can't see it, they don't believe it exists. It's quite the pattern. You would think they would be embarrassed after repeating that pattern so many times.

[ProfessorGAC]

121. Don't Know About That Tav

Doctors don't refute the existence of MS (which i've had for >15 years) and there really is nothing to see there either.

So, i'm not sure there is that clear a pattern.
GAC

[tavalon]

123. You're male

As a trend, doctors try harder with men. I'm talking a trend of hundreds of years here. Women are often dismissed as being "hysterical" (look up the origin of the word).

[ProfessorGAC]

125. I Don't Need To Look It Up

And you don't need to be angry with me. I didn't cause any of this.
GAC

[tavalon]

126. I'm not angry but I was being a smartass

My bad. I'm sorry.

[Lorien]

168. If there are MDs left who still claim that it doesn't exist

they should have their licenses taken away.

[Name removed]

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[LeftyMom]

9. I'll let my mother know she's not really in pain.

I'm sure she'll be glad to hear it.

[Name removed]

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[CountAllVotes]

19. my late mother was told she had fibromyalgia

however, after she had passed away I found an unpaid bill for an MRI scan of her brain. Said MRI scan showed multiple sclerosis lesions in her brain.

I think that fibromyalgia may be multiple sclerosis in disguise. :think:

[LeftyMom]

21. My mom's got a lot of things.

I tell her that everybody else gets a medical file and she gets a file cabinet.

[pipi_k]

26. Wow...now that's really odd!

because my younger sister who has Fibromyalgia also has MS. She's also been told she has brain lesions...found during an MRI

verrry verrry strange!

[lib2DaBone]

37. Yes.. I fear that. I have heard that Fibro is very close to MS....I pray not...

[bobbolink]

52. Some doctors have said its the 7th form of MS.

[lib2DaBone]

38. I think you have a point there... dont let it go..

[CountAllVotes]

46. I will add however ....

that my primary care physician does not believe that fibromyalgia is a "for real" illness.

As for myself, I have very serious problems yes but I won't say anything more than I believe it is condition deemed to be "auto-immune" but in fact it is also hereditary. Lots of misdiagnosis' going around. Don't let them run an MRI scan of your brain. If it shows multiple sclerosis lesions, you are very screwed, believe me on that one. :(

:dem:

[TicketyBoo]

106. Could you please clarify?

Don't let them run an MRI scan of your brain. If it shows multiple sclerosis lesions, you are very screwed, believe me on that one.

Are you saying that it's better to NOT know if you have MS?

I don't understand that line of reasoning?

[CountAllVotes]

142. well, I rather think so

you'll find out eventually anyway if you have it if the symptoms become pronounced enough (in my mother's case she was 76 years old when she found out but she kept it her secret). She'd had numerous failed surgeries on her feet, legs, knees, and other body parts (including the eyes which MS can also effect) throughout her life.

However, she managed to keep going and hold down and job and was never fired due to her health problems. If you have MS you are automatically medically un-insurable, you cannot buy life insurance, you may find yourself without a job and cannot work. No one really wants to hire a person with MS when you boil it all down - no employer wants to hire a "sick" person.

You may then find yourself trying to get on SSI or SSDI, if you have worked long enough to qualify for SSDI benefits. This grueling process may take years to get through if you are fortunate enough to qualify for any of it.

It is a high price to pay for a disease for which there is no known cause nor cure. They have plenty of toxic shots they'll sell you, one of them, Tysabri, is known to have a fatal side-effect (PML) but people still opt to use it anyway; cost is $8,000.00 a month. Why, I'll never know unless some people simply become so desperate with the MS that they don't care about fatal side effects nor cost.

To me, learning that you have MS is like opening up a can of worms that might have been well enough left closed (as in my own mother's case). She was able to go on and live her life. She died of cancer, not MS btw. :(

Of course on the flip side of the coin is the person that goes along for years suffering and not knowing what is wrong. They are accused of being "lazy", "on drugs", etc. This is a horrible way to live no doubt but I guess one must weigh whether a diagnosis of MS is better than not having it. Without the diagnosis, you can go on, albeit perhaps a very difficult life.

Is it worth it becomes the question. Obviously my own mother did not think so. Her secret went to the grave with her or so she thought. So to answer your question, part of me says no, I don't want to know so I can go on with my life whatever it may hold for me, or, yes, I want to know I have MS so I can try to learn to live with it and the consequences of knowing that I have it.

This also opens up the door for hope - hope for a cure to this brutal affliction known as multiple sclerosis. One must carefully weigh their options before pursuing such a diagnosis, that is all I am really trying to say I guess. :shrug:

[aquart]

66. No. My family is real clear on the difference.

The latest thing I hear is that fibromyalgia is really celiac disease.

But what it IS is extreme sensitivity to heat, and constant pain. My sister gets to write off her air conditioning as a medical necessity.

[tavalon]

107. See my other post

I was about to get a diagnosis of fibromyalgia when we figured out I had celiac. I used to take huge amounts of ibuprofen daily for the chronic joint pain I had and I had severe anemia and I wasn't able to carry a pregnancy and my thyroid was slowly destroying itself- none of which said gut disease. Now I only have joint pain if I've had a gluten accident, I don't have anemia anymore and I'm too old to find out if the uterus would work better but I bet it would. Thyroids don't fix themselves so I'm stuck with that problem.

As I tried to say in my other post, I think auto-immune issues are too amorphous to be neatly boxed into diagnoses and I think doctors are making the same old mistake they always seem to make in trying to put symptoms into neat little boxes called ____________ disease. I think when a body turns on itself, it does it in a uniquely personal way with each of us. When the symptoms overlap for enough of us, they find a label but I'm not sure that's all that helpful. Especially when they can't put it in a neat box and so they say it's all in our heads.

[laughingliberal]

68. It is important that MS be ruled out before a FMG diagnosis

However, I have had this almost since before it had a name. I was seeing rheumatologist for years who was convinced I had MS but I did not. Some years later a doctor from England where fibromyalgia was better known diagnosed me.

[tavalon]

105. I think the big problem is that the human organism is quite complex

and not very amenable to reductionist theories of disease. I'm actually surprised there are so many diseases that can be identified. And I find it to be great hubris on the part of doctors to assume if it can't be reduced to something concrete, it doesn't exist.

Autoimmune diseases are especially not easily put into their boxes. I'm only half joking when I say my body has been trying to reject itself since I was 2 years old (my first asthma attack). I was well on my way to a diagnosis of fibromyalgia when my celiac disease was found accidentally. I don't think my autoimmune issues are limited to my lungs and my gut, but since doctors are such reductionists, those are the only two they believe exist in me(and goodness knows, their "belief" means everything to me. Not). I just think they don't know how to categorize autoimmune issues and frankly, I have no interest in playing "name that disease" anymore. Little that any of those doctors did throughout my life helped as much as me learning how to handle my issues (that, and staying the fuck away from gluten). Actually, the internet has been far more helpful to me in managing my issues than any of the doctor's ever were.

I hope you didn't pay for that MRI - it sounds like somebody wasn't very good at their job, ya know?

[bobbolink]

51. Exactly. Just when you think you've heard all the heartlessness "progressives" are capable of,

along comes another brand of it.

My sympathies to your mother.... it is a miserable existence for many.

[pipi_k]

20. Yeah, that's what I thought when my sister got it

And now myself.


I'm in constant pain all day, every day...although some days are better than others. And some days it's so bad I cry. It hurts just to be hugged. I feel like shit. Tired to the point of exhaustion. Every single bone and muscle in my body aches. It's like having a case of the flu. A good day is when the pain is tolerable.

But I get up and move around anyway even though it hurts because it hurts more NOT to move.

It would be real easy to just discount it as being "all in my head" if it weren't for the fact that Mr Pip says I sometimes whimper or groan in pain in my sleep. Which is a whole 'nother adventure entirely when one can't even find a spot on the body that doesn't hurt from the pressure of lying on six inches of foam and an air mattress.

My family has a history of neurological/autoimmune disorders.

[alfredo]

30. Is the pain something like the burning pain of Shingles?

[shireen]

76. it's possible

Fibromyalgia is a central nervous system disorder. Like peripheral neuropathy. That's why the drug Lyrica is prescribed for both conditions.

Shingles can cause severe peripheral neuropathy, which manifests as burning, prickling, stabbing pain. And itchiness.

If you have it, please see a doctor. There are different causes for peripheral neuropathy pain, including shingles. There are medications that can help with the symptoms. I take lyrica for peripheral neuropathy caused by auto-immune issues. It's been very effective.

[alfredo]

95. flkne,ns;oe screwed it up. Reply below

[alfredo]

96. I had shingles. Fun Fun Fun.

It's like a jellyfish sting.

[Name removed]

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[TicketyBoo]

109. I've had a doctor tell me

that it's something like arthritis of the muscles (instead of the joints).

I don't believe it's the nerves as much as it is the muscles (at least, in my case).

My muscles get huge knots in them. They cramp up. The pain can be excruciating, like a sudden charley horse or foot cramp, or it can be a severe ache, like the flu. Sometimes it feels like someone has beaten me with a two-by-four. And the aches and pains are like phantoms, coming and going in any and every part of your body: your hands, fingers, arms, back, shoulder, ribs, hips, knees, calves, thighs, ankles, the tops of your feet. It is entirely unpredictable, and makes it so you really can't plan on doing anything. It's hard to volunteer for church or school functions. You really can't plan a vacation or travel. You can't plan on doing anything a week or two ahead because you never know whether you'll be up to doing it once the day is in front of you.

My husband massages my muscles, and he says it feels like there are crystals in them. He calls them "crinklies." He can massage these out of my muscles, and the pain eases. Nobody can tell me this is all in my head. The physical manifestations are very apparent.

It's the pits.

[pipi_k]

136. Massages...oh my!

Doesn't it hurt like hell to have someone massage you?


I often think I'd like to get a massage (from a human), but I'm afraid it would hurt too much.


We have one of those full body massage chairs, and there are times when it really hurts. I can't even use the lower arm massager on the lightest pressure because it's so painful.

[Hekate]

156. Occasionally I go to the local school of massage; you can instruct the person how much pressure...

... works for you. Let them know if they hit a trigger point so they can avoid it.

If the program at the school is worth anything they should be teaching their students how to handle all kinds of conditions from injuries to athletes, from young to old. Call in advance and ask about it. Stay away from anyone who does Rolfing or the like -- that will indeed hurt like blazes.

You want someone sympathetic and gentle that you can relax with; if you have a gender preference, make it known when you make your appointment. If you have a good experience and want to do it again, see if you can make a repeat appointment with the same student. They'll get to know your body and you'll get to know their hands.

If it's not a good experience for you -- at least you will have tried.

Forgot to mention: It's really inexpensive. Only $35 instead of $65-$125 in my area. Wear sweats and plan to go home afterward -- you'll be oily when you're done. ;-)

I forget to go for many months at a time, but I am always glad when I go back.

Hekate

[Name removed]

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[pipi_k]

135. It feels like a lot of different pains, really

Sometimes it burns. Other times it's a dull ache. Or acute sharp pains. Mostly generalized, you know? When it's real bad, I tell Mr Pip that I feel like even my hair hurts.

[JustAnotherGen]

32. A very gentle hug

Many people who have ONE condition - also have another. I.E. I have the HLA-B27 gene AND high R.A. factor.

I don't have FM - but I do get the 'excruciating' pain - since the B27 presentation of A.S. goes after my spine - which goes after every nerve in my body.

Don't know if you have looked into nutrition at all - but look for some books on Eating Away Inflammation. Granted, I give myself a shot of Enbrel once a week - but that's really just stopping the 'Hunch back' syndrome. Just check it out and give it a try. ;-) It sucks not eating bread, chocolate, etc. etc. - but I DO drink a lot of greek yogurt/berries/acai or cherry juice smoothies! :-)

See my post a bit further down and PM me if you want some book titles. My R.A. truly believes in a course of solid raw organic foods, blockers, and good sleep. Very down on the methros, nanoproxens, iboprofen, etc. etc. since they make his patients' stomaches bleed. Which just makes those of us with these conditions 'sicker'.

[lib2DaBone]

39. PIPI.... [[HUGS}} thanks for checking in....

[bobbolink]

54. I'm so sorry, pipi_k.....it is such a miserable way to live.

What courage it takes to make it through days like yours.

Then have the ignorance aimed at you on top of all of that.

:hug:

I was very fortunate.....I'm one of the ones for whom MSM was very effective. I can't tell you how grateful I am for that!

I hope there is an end to your pain very soon!

[shireen]

70. i'm so sorry to hear that ...

i have auto-immune issues and take three different prescription drugs to deal with the pain. So I can relate to your situation. Please don't give up looking for the right combination of pain meds. Send me a PM if you want to talk.

[Hekate]

94. Are you getting any treatment at all for it? Treating it as a sleep disorder HELPS...

I complain now because the low dose of tricyclic I was put on some 23 years ago caused weight gain (I took it for 20 years), but in fact it helped me get deeper sleep and the pain and exhaustion were mitigated quite a lot. Before that I, also, couldn't find anyplace on my body that didn't hut to lie down on.

I am now also being treated for my sleep apnea, and that helps the quality of my sleep as well.

I am now seeing a neurologist -- if you have the insurance for it, try to find one who "believes in" fibromyalgia and Dysregulation Spectrum Syndrome (the link is in 2 of my other posts in this thread) and see what s/he can do for you.

My dear, it can be better. :hug:

Hekate

[pipi_k]

140. Not really, except for

prescription strength Ibuprofen when the pain gets to be too much. That at least takes the pain down to tolerable levels.

Otherwise, I've been dealing with this so long that it's become a part of daily life for me.


One complicating factor is that I also have a host of anxiety disorders (plus panic disorder) and a HUGE phobia of meds. So even taking the Ibuprofen is a big step for me....

I've tried doing the healthy foods thing, and while it didn't improve things significantly, I do know that just giving up the sweets did help. If I stay away from them for a while, it's OK, but they're an addiction, so one little jelly bean and....well...it's not pretty...


:cry:

[JustAnotherGen]

153. I'm so very sorry

A gentle hug for you too. If cutting sweets helped a little - next try giving up the night shades. I love tomatos - but I know I simply can't eat them anymore. One step at a time.

[tango-tee]

102. So sorry about the pain you're enduring!

I have rheumatoid arthritis - actually, at the moment this is my first go-around with the illness - and I never before thought anything could hurt so much. The helplessness gets to me, since the joints in my hands are swollen and I have no strength in my wrists. The right foot hurts as well and now the left foot is showing tell-tale signs.

My husband's leg was amputated last year and he depends on me. He is 13 years older than I am and already retired. I work full-time and can't afford to retire just yet. I hope my body won't give out for another couple of years.

Despite it all, sending you a very gentle hug, hoping your situation will improve. Don't let the ignorance and cruelty some folks exhibit get to you.

PS: Glad I can still type and stay in touch with my friends here at DU at night when I can't sleep.

[pipi_k]

137. I'm sorry to hear about the RA...

My son, who is 39, has it also. He's on Enbrel and Methotrexate, and has the same problems you do with the swelling in his hands. It got so he couldn't do his regular job anymore (carpet and flooring installation) and has to work in the office now. Sometimes he can't even take care of certain personal hygiene issues because of the pain and swelling. Stress seems to exacerbate the symptoms.

He's not generally a complainer, so when he does complain of the pain, I know it's really hurting.

Are you on any kind of medication?

Hugs back, and I hope you can find something that works...

[Warpy]

31. No, dear, you would be wrong about that.

What current research is showing is that it's a brain disease, not a muscle disease as was previously thought. There has also been news that a retrovirus has been isolated as the cause, although I've read little about it since the first announcement.

What you need to know is that it is a real disease and that people who have it feel like they have a bad case of the flu every hour of every day. The muscle aching is intense and sleep patterns are destroyed. It is a miserable way to live.

While there are treatments aimed at restoring sleep patterns and relieving pain, they're inadequate at this point and people with this disease are living in misery.

Instead of popping off about conspiracy theories, why didn't you educate yourself?

[lib2DaBone]

40. Who Do You mean? Popping Off? Me? I am trying to understand because I love this woman...

[Warpy]

49. Not you, chum

The author of the subthread I replied to who said it was a made up disease to generate more money for eeeevvulll big pill.

You have to admit he was dying for a slapped face.

[laughingliberal]

71. I once had a website and I traced the entire history of fibromyalgia theories

and it is quite lengthy. But you are correct. A retrovirus, xmrv, has now been found to be present in CFS and, possibly, fibromyalgia patients in higher concentrations than in the general population. There are several other diseases in which this virus is implicated, prostate cancer being one of them. The research is very new on this but there was a recent local news story here that University of Reno is conducting trials and was asking for volunteers who have been diagnosed with CFS or fibromyalgia. After all these years, it would be nice if causation could be proven. A cure would be nice, too, but probably won't be seen in my lifetime.

[Warpy]

79. Cures for viral illnesses don't happen often

but once the cause and true pathway of the illness are established, treatments can be developed.

In the meantime we wait and suffer. God, do we suffer.

[laughingliberal]

87. Yes, the only good news about a viral connection is we may, finally, have an explanation

The bad news is there probably won't be a cure. I posted, downthread, an interesting article I read where some are hypothesizing this retrovirus may reactivate dormant viruses, specifically Epstein Barr. This was ironic as EBV was, at one time, thought to be a possible cause of CFS/Fibromyalgia but was dropped as they found EBV present in the general population in the same percentages as those of us who were sick. So, it's possible EBV is behind it and the xmrv was the missing link.

I had some fair years after the first 4 years when I was acutely ill. Never really felt good but managed to drag myself through the days and make a living. Past 2 years, though, I've just collapsed with it. I can take on some short term work, at times, for a few weeks. In fact, I seem to work best in highly intense, stressful situations for a few weeks and then I'm down again for months. I don't even have the energy to care anymore. Perhaps something will be found.

[knitter4democracy]

41. We'll see what happens when you get it.

The severe pain isn't made up. There are no good prescriptions for Fibro at all, and a lot of patients are left with lifestyle modifications to manage their disease.

I had severe, wretched pain for years that was misdiagnosed, and let me tell ya, it got old being told repeatedly that my disease wasn't real, that my pain was all in my head. Nope--it was in my appendix and a massive kidney tumor. Just because the doctors can't figure it out doesn't mean it isn't real.

[Dappleganger]

47. You're kidding, right?

Fibro is definitely real and treatable! Our daughter's piano teacher has it and she has to work out every day to keep moving through the pain. She does take meds and the disease has taken a real toll on her family life and their finances.

I hate it when people play doctor and second-guess other people's illnesses!x(

[bobbolink]

50. I hope you end up having to deal with it, and the ignorance of others.

That seems to be the only way some of you are capable of learning compassion.

[midnight armadillo]

56. Go FUCK your ignorant self.

My wife has it, and it's sure as shit not made up by the pharmaceutical industry, nor is it a product of any of the other various ridiculous claims made by some MDs. My friend's daughter suffers from it and can't hold down a steady job due to pain.

Chronic fatigure syndrome was recently linked to a virus. That was something was often attributed to victims being lazy, or unable to handle modern life, in a similar way that fibromyalgia patients are often dismissed as being hysterical or full of crap.

[laughingliberal]

74. University of Reno is undertaking a study of the connection between CFS and the

xmrv retrovirus. They called for volunteers who have a diagnosis of either CFS or fibromyalgia.

[tavalon]

111. I would just like to say

that people like you are a treasure. I've learned so much that's been so helpful from fellow sufferers of auto immune issues. Far more help than I've ever gotten from any doctor, really.

[Odin2005]

65. Look, an asshole

:puke:

[sandnsea]

8. Chronic Health Conditions forum

You could ask over there, or read what some folks have already posted. All I know is that pain is pain, whether doctors understand exactly what causes it or not.

http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=317

[Obamanaut]

11. Here's a link to National Fibromyalgia Association

http://www.fmaware.org/site/PageServer

I think it can be summed up thusly: widespread pain with sore and aching muscles, and the disturbed sleep that accompanies those symptoms. This is my definition, not a professional one.

[lib2DaBone]

14. Thanks Obamanaut... I'm checking out the link..

This does fit the profile exactly. I'm just trying to understand...

[ohheckyeah]

88. It's wonderful that you are trying to understand.

I was diagnosed with it before it was called Fibromyalgia. It was called fibrositis. It is painful and weather changes make it worse (at least for me). Too much activity makes it worse and too little activity makes it worse. The one thing that I can personally recommend to help with the pain is a spa. I love my jacuzzi and it helps the pain more than anything else I've tried. A massage every now and then can be a great help for me if it is done by someone who knows how to massage someone with fibromyalgia. When my husband notices I'm in pain he insists I go for a massage and it means a lot to me that he understands and wants to do something to help.

[vadawg]

12. its kinda like lycanthropy, dont take her out at night just in case

funnily for some reason i thought lupus was to do with werewolves.. :shrug:

[EmeraldCityGrl]

13. Some believe it's an auto-immune disease

like Lupus or Chronic Fatigue Syndrome. If you've received a diagnosis, that in itself is huge part of the battle.
Look for an on-line support site. Patients with the disease will offer alot more information and direct you to
medical sites offering the best information.

[lib2DaBone]

18. Thanks Emerald. Yes.. I thought that it had someting to do with

.. with Auto Immune? I.m just trying to get a baseline handle on the cause and effect.. but it's not like the Flu or Mono Nucleosus?

[laughingliberal]

75. It may be but years of being treated by one of the best rheumatologists in Houston failed to turn up

evidence of autoimmunity. He really struggled with it as it just seemed to fit so completely with my symptoms. But no tests ever found any connection. Recently, they have identified, as I've commented upthread, a high percentage of CFS/Fibromyalgia patients positive for the retrovirus xmrv. Studies are underway now.

[hyphenate]

16. Depends on who you talk to

Up until fairly recently, Fibro was considered just a make-believe illness, which resembled nothing more than just a bunch of symptoms with no physical basis. Many doctors, including my cardiologist 11 years ago, didn't believe in it.

Since then, it's been recognized as a legitimate condition, and there is a greater focus on fining out exactly what causes it. It's also considered an auto-immune disorder, and some researchers point to either a bacterial infection or a viral infection at some point in a patient's life that sets it off.

Some other researchers believe it is part of the same condition known as "Chronic Fatigue Disorder" (a misnomer), just an aggravation of different elements.

There is no test yet available for it, though upon physical examiniation, there are 18 pressure points (bi-lateral) that can elicit pain, and help determine if Fibro is the cause.

WebMD link for you: http://www.webmd.com/fibromyalgia/default.htm

[phillysuse]

22. Fibromyalgia is a central pain sensitization and amplification

syndrome.
Imagine a television with its volume turned up as high as it can go. The television is loud, not because it has multiple electric cords going into it or because it gets more sound waves coming into its antenna but because the sound is amplified.

In fibromyalgia, normal electrical impulses from areas where muscles and tendons insert are amplified in the spinal cord and the brain. The patient's mechanism for inhibiting these signals from pouring in is deficient. Patients show different processing of pain on brain SPECT and functional MRI studies. The pain the patients feel is real but the muscle structures that are causing them are normal. It's the signal amplication that makes the pain.
The medications used for this all affect neuro transmission - so gabapentin and Lyrica affect the inhibitory pathays in the spinal cord; duloxetine, savella and other "antidepressants" actually affect neurotransmitters serontonin and norepinephrine. Dopamine may also be involved.

Many patients have a sleep disorder as well and restless leg syndrome can co-exist.

Some patients have another disease such as lupus, rheumatoid athritis, HIV, hepatitis C, Sjogren's syndrome and then we say the fibromyalgia is secondary. If there is no evidence of any other disease, then it is said to be primary fibromyalgia.

Aquatic Therapy is quite helpful. Many patients benefit from cognitive behavioral therapy. Narcotics are not of much use and may actually cause increased pain.

There is data that many patients will have family members with fibromyalgia or depression suggesting a genetic susceptibility but the gene or genes have not yet been identified.

How's that for short and sweet.

[pipi_k]

29. Yep...restless legs syndrome...

that's actually what appeared before any of the other symptoms, which came on gradually, oh, about nine or ten years ago.

The RLS started in 1990.

[lib2DaBone]

34. Yes..EXACTLY... thanks for posting,,,,

I am going to pursue thses cures...

[arthritisR_US]

35. one of the best responses I have ever seen on the subject and I work with that population. n/t

[lib2DaBone]

44. Thanks Philly Suse... the best I have heard...

I understand... It's lkie the nerve endings have been turned up to maximum pain....

Also.. you are SO CORRECT on the sleep disorder part of the disease.

Thanks for your understanding...

[laughingliberal]

77. The first doctor who ever told me I had fibromyalgia was from England and not many here had ever

heard the term. The studies he had been involved with in England, at that time, did point to a sleep disorder. It does seem to be one component among many. Other theories over the years have suggested metabolic disorders (subclinical hypothyroidism), and a narrowing of the opening through which the brain stem connects to the spinal chord. It is also of note that Gulf War Syndrome involves many of the same symptoms.

[Hekate]

63. It's part of the Dysregulation Spectrum Syndrome -- link

http://www.fmnetnews.com/basics-overlap.php

I posted to you because you might find this link helpful, but I will post a longer reply to the OP.

I'm 62 and have probably had fibromyalgia half my life. I'm not sure how long I've had sleep apnea, but some believe it's in the spectrum. Basically, of the dozen overlapping syndromes I probably have at least half of them.

From the time I was diagnosed with FMS 23 years ago until less than a year ago, I never knew there was a connection -- in fact I had almost no information at all that whole time, because initially so little was known about it.

Hekate

[TicketyBoo]

114. A sleep lab technician

told me that obstructive sleep apnea, hypothyroidism, and diabetes are a commonly seen triumvirate. I have all three which coexist with the fibromyalgia.

[skorpo]

89. Good definition--many patients present with tendonitis

[TicketyBoo]

112. That doesn't describe my problem.

The pain the patients feel is real but the muscle structures that are causing them are normal.

As I explained above, my muscles are often in spasm, cramped so hard you can feel it with your hand. Now, maybe it is signal amplification doing this to my muscles, that I don't know. But my muscles are physically involved, certainly.

[Name removed]

175. Deleted message

Message removed by moderator. Click here to review the message board rules.

[tavalon]

113. That is the best, geared for the layman,

explanation I've ever seen. Sadly, people will see the cognitive behavioral therapy mentioned by you and say, "see, it is all in their heads!" which is completely untrue (and I can see from your post that you know that completely) but for the rest - the reason CBT and hypnotherapy and other mind based things work is because despite doctors not "believing" in it, there is a powerful connection between mind and body and in fact, the mind is in no way separate from the body. It's training the mind to help the body.

And boy, are you right about the narcotics!

[H2O Man]

127. Good answer.

Thank you. I would also add an environmental factor: the exposure to certain chemicals, either in diet or in the living environment, may play a more important role in increasing the genetic predisposition, than is currently understood.

[Lorien]

169. Which I have, and which I've recently discovered is caused by a thyroid/ adrenal/ hormonal imbalance

which is undetected, undiagnosed, or under treated in at least 33 million Americans. Check it out:
http://www.stopthethyroidmadness.com/recent-new-diseases/

Since starting on medications for all three my fibromyalgia symptoms are gradually fading. 30 years of hell because they changed the diagnosis protocols in 1970. :grr:

[Posteritatis]

23. A real enough disease whose self-diagnosis has suddenly become popular. (nt)

[Rabrrrrrr]

24. It's a kind of made-up catch-all phrase for a bunch of stuff that they don't know what it is.

There are the sensations of pain, but the docs don't know yet what is actually causing the pain, so it goes under the rubric "fibromyalgia".

Hopefully, someday they'll figure out where the pain is coming from, and most likely realize that what is called fibromyalgia now is really a whole bunch of separate diseases.

[JustAnotherGen]

25. My Rheumy

Considers it a "Series of Symptoms of underlying conditions". That's the last thing he will diagnose a woman with because like the one poster said: An MRI can determine MS, a test for the HLA-B27 gene can determine Ankylosing Spondylosis (I have this one), several positive RA factor tests can diagnose Rheumatoid Arthritis, leaky gut syndrome can cause inflammation in one's whole body. His point? It's a real condition that he's certain (kind of a liberal lefty doc I have :-) ) if men got it from holding fishing poles there'd be a task force and a whole lot of money thrown at it. :rofl: Love that guy!

Anywhooooo - She's probably in a lot of pain. People that have A.S. experience the same extreme muscle pain and weakness that women with Fibromyalgia experience. So I can relate to that. Remember, when she's tired, she's tired. When she hurts, she really means she 'hurts'. I don't think women with Fibro get the creaky joints that people with R.A. and A.S. get - but the cold probably makes the muscle pain/weakness worse. Oh 'Flare' means something entirely different to people that have Auto Immune diseases than it does in the movie Office Space. It's when the symptons/pain from 5%-10% to 90-100%. I know a woman who has FM and when she 'flares' she'll have the same day to day living experience I will have - holding my tooth brush is a 'two handed' task.

Just remember - she can't go out carousing 4 nights in a row and she should be AOK. Even 2 nights in a row can cause a severe deterioration in health and mobility.

Is she on disability? I'm not doing that unless I hunchback over. But if she is and it's severe - compassion is probably a very nice thing to offer. ;-)

[tavalon]

115. Damn, I wish you lived in Seattle

or at least your doctor! Lol

There is only one game I hate worse than the Doctor-Nurse game and that's the Doctor-Patient game. They really are quite similar, actually. In each one, the doctor plays the all knowing God character and the other person pretends to be stupid, while knowing full well they know more than the person playing God. These days, I just stay away from doctors as much as I possibly can, both in my personal and professional life.

[JustAnotherGen]

152. He's awsome

My GP is an Osteopath and a big proponent of natural remedies. She recommended him - and she only recommends other physicians that take her whole body approach. I'm never 'in and out' of his office. It's a minimum half an hour - and he really takes the time to look at the entire situation.

Every doctor should be like this!

[Mari333]

28. my 59 yr old friend has it

she wakes up some mornings and can hardly get out of bed. other days shes somewhat okay.
I didnt realize how devastated the pain was for her til one day she asked me to open a plastic tin of tomatoes. she didnt even have the strength to pop a box of plastic!!
she has used morphine patches, she has no health insurance, and she basically just gets thru it as best she can (thanks america)

and she IS IN A LOT OF PAIN.

I am sure someday someone will know what causes it.

its real. I dont know what it is, tho.

[tiptoe]

177. "...some people who appear to have fibromyalgia...may in fact have vitamin D deficiency..." (Holick)

"...
Vitamin D has been identified as a significant factor for incidence of several autoimmune illnesses such as multiple sclerosis, rheumatoid arthritis, insulin-dependent diabetes mellitus, and inflammatory bowel disease<5>. Significant improve from taking vitamin D has been reported for several autoimmune illnesses, for example rheumatoid arthritis<6> and lupus. Studies of fibromyalgia and persistent, nonspecific musculoskeletal pain have found that a low level of vitamin D is common. ⁷ The literature strongly suggests vitamin D supplementation.

A review of Co-Cure “MED” resources<8> found only a few resources suggesting Vitamin D has considerable merit for CFIDS/FM.

"Vitamin D deficiency is a major unrecognized epidemic in the adult population," Holick said. As many as 40% to 50% of adults older than 50 may be deficient in the vitamin, according to the researcher. He noted that some people who appear to have fibromyalgia, a syndrome marked by chronic muscle and joint pain, may in fact have vitamin D deficiency.<9>

The remaining information from co-cure is summarized below.

· Reduced Vitamin D levels are seen in both CFS and FM, correlating with increased musculoskeletal pain and lower bone density<10>.

One of the few studies dealing with fatigue found 97.8% (493/504) patients had a vitamin D deficiency<11>. Patients with a small deficiency responded very well and the fatigue was greatly reduced or eliminated. Those with very low levels had a very variable outcome to vitamin D. This parallels the report for sarcoidosis patients where some could not tolerate any exogenous Vitamin D at all, and that those patients who were most sensitive to Vitamin D were less likely to achieve remission.<12>
..."


http://www.lassesen.com/cfids/recommended_levels.htm

50 to 60 ng/ml == 125 to 150 nMol/L (recommended level for CFSM/FM)

Safety & two MD's general recommendations: "How Much Vitamin D Should I Take?"

[Terra Alta]

33. it is very real

and very painful. A co-worker of mine has it.. she works two jobs and sometimes can hardly even get out of bed due to the pain.. but she is a very pleasant, hard-working woman who somehow manages to deal with the pain. I hope one day they can find out what causes it and how to cure it.

[skepticscott]

43. It is a marketed label

trying to assign a disease name to a wide variety of pain symptoms that may or may not have a common cause. "Fibromyalgia" is a term under which drug companies try to group as many women as possible (and yes, the "disease" is marketed only to women), in order to foster support groups and, ultimately, sell drugs.

[laughingliberal]

80. Well, there were no drugs for it 20 + years ago when I was first diagnosed

So, I'm not buying that. I also have a stepson, 38 years old who has been diagnosed with it. But, yes, it does seem to affect more women than men. There is still only one drug with FDA approval for the diagnosis and it was just approved a few years ago.

[shireen]

81. a bit cynical?

See phillysuse's post #22. A good description.

Fibromyalgia may be considered a catch-all term for unexplained pain, but in many cases, the mechanisms causing the pain originate in the nervous system. What makes the nervous system act that way is not well-understood. But I can vouch for one of the drugs marketed for fibromyalgia and peripheral neuropathy. It works. My life would be a living hell without it.

[skepticscott]

129. Yes, I am a bit cynical

I've seen how drug companies market diseases just as aggressively as they market drugs. I've seen how they promote support groups, for no other reason than to draw more and more people into the diagnosis (which may or may not be appropriate). I've seen how they try to get people to shop around for a doctor who will give them the diagnosis they want, and I've seen how they pressure doctors into prescribing their drug for the newly defined "illness". A new use for a drug that may have been supplanted by better alternatives for its original purpose is a huge boon for a drug company.

[JustAnotherGen]

154. Not every doctor

Throws drugs at their patients. Some are also involved in medical research that has nothing to do with the drug companies. They work with doctors around the world to try to find cures and help people.

And I will state this and stand in my truth: Enbrel has literally stopped my 'hunch back' and completely halted my rib cage from continuing to fuse together. Not EVERY drug is just something someone somewhere is trying to make money off of.

I have one of the autoimmune diseases (not fibro) - until you have to HOLD your toothbrush with both hands - you really don't know what it's like to live with an autoimmune disease. And it's very easy to dismiss those of us as 'mental' and looking for a support group.

Guess what! When your body is in full flare mode? You can't GO to a support group. You can barely tie your shoes let alone get in your car on a cold, wet day to commiserate with other people.

[Warpy]

165. What a stinking load of bull dung

The symptom cluster was first noticed around the early 80s. Tests at the time failed to disclose the cause of what seemed at first like a muscular inflammatory disease. They realized it was real in the mid 90s when spinal fluid of patients showed extremely high levels of pain neurotransmitters.

Since then PET scans and F-MRI scans have confirmed the origin of the illness is within the brain, that pain impulses are greatly amplified and that, yes, it's a real disease and people are miserable with it.

There is also a strong correlation between FMS and a cluster of serious autoimmune diseases like rheumatoid arthritis and lupus.

As for "marketed to women," you've ignorantly put the cart before the horse here. Most patients are women, as most sufferers from older autoimmune disorders have been female, but there is a significant percentage of patients who are male.

If you ever take those conspiracy theory blinders off, you might start to read and discover a lot of things you so arrogantly dismissed as drug company hype are in fact real illnesses that affect real people.

Hell, you might be one of them some day.

[Lorien]

170. Bullshit. Plenty of men have it too. And it does, in fact, have a cause:

http://www.stopthethyroidmadness.com/recent-new-diseases/

[PDJane]

53. I have fibromyalgia.

Yes, I have some brain lesions; they're from an accident in my early twenties. I was dragged...um. 62.5 feet? Something like that....by a cab.

There are no real answers for you, because I've been looking for them. Generally, it seems that trauma has something to do with the triggering mechanism, and diet, exercise, sleep and meditation can control it, but not get rid of it.

Fibro is a handful of symptoms starting with chronic pain; IBS, sometimes migraines, sensory overload more often than not, chronic insomnia, more pain, sweating, rapid weight gain or loss, carbohydrate cravings, especially sweets and chocolate, tinnitus, twitchy muscles, crying, moaning, groaning in one's sleep, pelvic pain, dysphasia, poor balance or coordination, parasthesias, especially in the extremities or around the tongue and mouth, impairment in determining shades of colours, confusion, a difficulty recognizing familiar surroundings, sensitivity to odors (the guy next door smokes cigars and they smell like burning wiring to me), sensitivity to light and/or noise and/or atmospheric changes (the pressure bounce gives me a headache every time), panic attacks, depression (well, there's a surprise, eh?), mood swings, irritability, costochondritis, nail ridges, nails that turn under, mottled skin, a tendency to bruise or scar easily, temporary hair loss, tissue overgrowth, hemorrhoids, allergies (especially to mould, for some reason or another), a tendency to sarcoidosis (yeah, got that one too), etc., etc., etc.. For some reason, temperature control seems to go nuts too....from night sweats to freezing in 0.6 seconds. I've found that repeat insult allergies are common, and women and men seem to be equally affected. As far as I can tell, it's a sister to chronic fatigue syndrome, with a lot of the same symptoms.

Things that can help: mindfulness meditation (check out Dr. Gardner-Nix and Pain Speaking), mild exercise for at least 1/2 hour per day, gentle massage, anything that will help sleep (eight hours at a minimum for fibro sufferers, I swear), moist heat, swimming, gentle movements at a gentle pace, cymbalta and lyrica have excellent records. I don't recommend narcotic pain killers; they don't work well. One too often ends up addicted, and the neurological component of the pain leads too often to rebound pain, which is of no help whatever. Yes, been there, done that, don't care for it. Neurological pain killers, like pot, and the techniques that can help a person live with it work better.

Eat well; try to live without processed food. In my case, corn products are a trigger, as are some sugars and all fake sugar except Stevia. That cuts out a LOT of pre-packaged stuff and all soda. I will tell you right now that your grocery bill will go up, and eating out becomes a challenge. Drink water. Lots of it. If you can drink herbal teas, some of those help......specifically, chamomile, ginger, and fruit teas. I find that fruit and veggies, and lots of them, help, as do tree nuts (NOT peanuts), and breads and crispbreads with a mix of grains. Use olive oil. Learn to cook. Cooked tomatoes help....there's something in the cooking that makes them more useful. Make sure, if you do eat meat and eggs and cheese, that you eat meat that is from free range animals and has a minimum of fat. Know where your food comes from. If the closest acquaintance you have with whole grain is a product that comes from a box with a brand name on it, I suggest education is in order. Get acquainted with oatmeal and cream of wheat and Red River cereal. Learn to make your own granola, and cut out half the sugar and salt you're used to. Learn to use honey and maple syrup and cane sugar, and make sure that you are eating those kinds of sugar! READ THE LABELS. Oh, yeah.....look for sea salt, and I don't mean the white kind. It comes in all kinds of colours and all kinds of flavours; the white stuff is processed sea salt, which kind of negates the whole point of making sure that you eat sea salt, no?

Learn what those little sticky labels on your fruit and veggies mean. If it's a four digit number that starts with three or four? It's a standard agricultural product...chemical fertilizer and pesticides, imported bees, etc.. If it's an organic product, grown without chemical fertilizers and pesticides, it will have a five digit number beginning with 9. If it's a five digit number beginning with 8, it's a genetically modified product.

If I remember something I forgot, I'll come back! (That forgetting thing is another symptom, by the way.) Oh, yeah......irritability is another symptom. Of course, I'm not guilty of that (she says, tongue jammed firmly in cheek.)

[Mopar151]

73. You are pretty much on the money

Mrs. Mopar has fibro - and several of the posters here with similar posts on this are pretty good too. Near as I can tell, it's kind of a "smorgasboard" thing - not everyone has every symptom, and people's reaction to meds and foods vary a LOT.
One thing I haven't seen on here - insect attraction! I know a couple other people with it, and the Mrs. and they are magnets for mosquitos and biting flies.
As to the original poster - you will become an expert leg masseuse! Your cooking skills will go to the next level, and it really helps to have a memory for detail.

[pipi_k]

138. Mosquito smorgasbord...

YES!!!

If there are 20 people around me, guess who gets bitten the most?

[PDJane]

155. Yeah, that's one of my problems too......

and for some reason, fungus gnats and fruit flies will pick my vicinity too, which is merely annoying.

[bobbolink]

58. I had a long discussion with a doctor a couple of years ago, and she is a firm believer that it stem

ffrom sleep issues. That certainly fits for me.

I also agree with the poster who said it is triggered by trauma.

So, TLC is definitely in order, and as you can see from some of the very insensitive responses on this thread, that TLC is hard to come by.

My sympathies for your girlfriend. Its a real bitch of a disease. :hug:

[laughingliberal]

82. The sleep disorder component is one of the first that was noted by those who took it seriously

The doctor from England who first told me of it had been involved in studies in England where they did conclude that fibromyalgia patients did not sleep through the night and that if they woke normal people every couple of hours throughout the night (a controlled study he was involved in) they would, within 2 weeks develop all the same symptoms we have. It was still not known and is not known now what causes the sleep disorder. Some, but not all, suffer from sleep apnea. And it is a real bitch.

[bobbolink]

148. You know, I think the doctor I spoke with mentioned this study.

Thank you for posting this!

If you come across a link for that study, I would appreciate it. (And please, don't respond with the DU "google is your friend" slapdown.... I have limited computer time, and have priorities of my own. If you find it, great, if not, I appreciate this info.)

I have wondered about the apnea thing for myself, too.

What I know is that I was one of the lucky ones for whom MSM helped tremendously.

[boppers]

60. This thread has a great cross section of the issue.

There isn't yet a known root cause, there are a group of symptoms. Since the symptoms aren't universally identical, treatment also isn't universally identical. Some people swear by diet, others by vitamins, others by massage, acupuncture, hypnosis, "healing touch", CBT, etc. etc. etc.

I go to wikipedia for balanced discussions on heated topics, where they attempt to cover the debate/discussion with some degree of calm moderation:
http://en.wikipedia.org/wiki/Fibromyalgia

[Madame DuFuey]

61. That pretty much sums it up

Hi,
I'm new here (long time lurker/first time poster). Nine years ago I was diagnosed with the symptoms of fibromyalgia, which began with ruling out lupus, rheumatoid arthritis, and MS. Following those tests, a pain chart was used that identifies 18-20 pain points common to those with fibro.

Previously, I experienced a very bad case of mono. It took me months to recover to the point of any semblance of my former life, but I never felt completely well. My doctor, after trying everything, finally referred me to a rhemumatologist. I lucked out with a rheumatologist who said that brain scans can show that people with this disease process pain differently, and that it is not in a person's head. It was a blessing to find a doctor who didn't try to tell me it was all in my head.

The genetic question is quite interesting. My mother also has fibromyalgia, and she experienced a bad case of mono at the same age I did. For years she went undiagnosed with fibromyalgia; in fact, her Dr. thought was sure she had lupus until those test came back with negative results. I'm almost a carbon copy of her medically. The downside is that whatever she gets will probably come may way. The upside is that we can talk to each other about symptoms and research things together. No one else in our family really understands, although they try. How could they, though?

I had a lot of friends who did not understand why I went from going out whenever asked to skipping almost ever get together. Just getting out of bed was a struggle. It's hard to explain to people what is going on when every part of your body hurts, and like someone mentioned, hugs even hurt.

My treatment over the years has consisted of antidepressants and a low dose of trazadone at night to help me sleep. Otherwise, I can't sleep and am a zombie the next day. When I was first diagnosed, Bextra was on the market and helped tremendously.

I hope your friend either has a good rheumatologist or finds one. Also, if she says she feels bad, believe her. A fibro patient can go from feeling ok to being worn out or run down in no time at all.

Hope this helps.

[shireen]

83. welcome to DU, Madame DuFuey

i am so sorry to hear about your condition. I have chronic pain too, with many common fibro features. But i'm one of the lucky ones because i'm able to control most of it with a combination of prescription pain-killers
:hug:

[laughingliberal]

86. Interestingly, I had a very bad case of mono at 14 and was never quite as energetic after that

having easy fatigue but quite manageable. In the days, years ago, when I became acutely ill (4 years of mostly lying in bed) they were looking at Epstein Barr Virus as the possible cause of CFS and Fibromyalgia. However, they found the general population had EBV in around the same percentages as those who were sick and ruled it out as the cause. A recent discovery of the xmrv retrovirus in a much higher percentage of CFS/Fibromyalgia patients than the general population is looking into this as a possible cause. I was very interested to see in one article that some researchers believe xmrv may reactivate some dormant viruses like EBV. I don't know what they will find but this was compelling given the early thinking that EBV was involved.

I find a good day is one where I wake feeling 'normal' and have about 4 hours of energy. A bad day is one where I wake feeling awful and it goes downhill from there.

[closeupready]

62. It's a progressive, degenerative disease of the lungs, I believe, or

perhaps the nervous system? I'm not exactly sure, but I once worked with a woman whose husband died of fibromyalgia at the age of 35 or so.

[shireen]

84. i think you mean cystic fibrosis?

http://en.wikipedia.org/wiki/Cystic_fibrosis

[closeupready]

133. Oh, right!

That's what it was that killed him. (Mexing my missages. ;) )

[Captain Hilts]

64. Folks have tried to explain it to me using BBC 'special' English, to no avail. nt

[PDJane]

67. I tend to use medical jargon.........

I spend too much time with doctors.

[Captain Hilts]

69. My friend who has it has a phd in theoretical physics, so she's not much help either!

[HiFructosePronSyrup]

72. It means, literally, pain of muscles and fibrous connective tissues.

And that's pretty much it.

Many doctors and scientists don't think it's a real disease, and I tend to agree with them.

That said, when we say it's not a real disease that doesn't mean that patients don't actually suffer. What that means is it appears there's no set, proper way to diagnose the condition. There's no apparent single cause for the condition. There's little similarity in symptoms between patient and patient. There's no single treatment that applies to the patients. And so on. So rather than being it's own discrete disease, it's more like a catch all phrase for muscle pains that could have any number of causes and complications. Onr person's diagnosis of fibromyalgia might be undiagnosed MS (as mentioned above), another could be an old forgotten sport injury complicated by aging, it could be some mysterious previously unrecognized genetic defect, etc.

Like somebody else mentioned, the wikipedia article has a rather good discussion of both the condition and the controversy.

[mopinko]

146. little similarity in symptoms between patient and patient.- wrong, actually.

the characteristic symptom is pain in many or all of 16 tender points on the body. fatigue and brian fog overlap with other illnesses. pain can be more widespread than the 16 points. but those tender points are diagnostic.
i have doctors poke and squeeze me many, many times, trying to find the source of my pain, to no avail. when one finally poked the fibro tender points i nearly went through the ceiling.

[Hekate]

147. Amazing what knowing exactly where to touch will do. I was so grateful to the doc who did....

It only took about 7 years for a doc to actually do that-- and once she peeled me off the ceiling (like you) she gave me an actual diagnosis and an actual treatment. The low dose of tricyclic antidepressant (now some people are just calling that class of drugs "tricyclics" because they are used for so much more than depression) at bedtime improved my sleep and my pain and utter exhaustion also improved. Didn't go away -- but at that point I was so damn grateful for the improvement....

When I saw a chart of trigger points I was able to identify that I have nearly all of them.

Hekate

[mopinko]

150. i didn't even realize how much my feet hurt.

when she hit the ones on the ankles, i nearly cried.

yeah, it is amazing to have a doc actually confirm that there is something wrong. i never did the elavil, but i have been taking ambien at bedtime for a while and looking for something else. i love it, but the docs want me to move on. or something. i need something that lasts all night, anyway.
sleep is all.

[Hekate]

151. Elavil was the first and gave me dry mouth. I didn't complain but a subsequent doc noticed ...

... and prescribed generic for Sinequan --> doxepin HCl. It worked well at 50 mg, but one time I had a bad flare-up and was told to double my dose by yet a 3rd doc (the one I have now, Dr. B)-- however I wasn't told to go back to the original dose so I kept taking 100 mg for about a year. When it was time to have my annual physical my hubby gave me the following instructions: Ask about your libido, would you? :blush: Sorry to say, but it had disappeared as though it had never been, and :blush: I hadn't noticed. But Mr. H certainly had. And that was entirely due to too much doxepin.

The other thing was this: It's known for causing weight gain, but since I didn't gain weight for several years I didn't think to look at the medicine as a cause when I did; I simply didn't know what hit me. I eventually put on over 50 pounds, with my doc telling me I really had to do something about it and my personal critical judge telling me I was a terrible person and my really insane cravings just overriding everything. It wasn't until I went on Wellbutrin for my depression and anxiety and Dr. B said I could probably go off the doxepin -- well, once the doxepin had cleared my system the insane cravings disappeared as though they had never been. :grr: Too bad the 50 pounds didn't. And the pre-diabetes.

I have lost weight, but it is a struggle because I am older now and my body has changed in every way. I still periodically binge on sugar, just not all the time. I may have a new "set point" for weight, and it's about 30 pounds too high.

We run on too little information, and that includes our doctors. My internist Dr. B is great at what he does, but he doesn't know everything. He didn't believe I needed an antidepressant and I finally had to go to a psychiatrist (a guy with an MD, in other words; my therapist only had an MA) for a few sessions to get the initial Rx, which my internist has since signed off on for refills. I had a nightmarish episode when Medco, our Rx supplier, switched me to generic for 3 months, but that resolved as soon as I went back on the brand name.

I think he's wrong about Wellbutrin being sufficient to make my sleep better. I came to him nearly 20 years ago already having the diagnosis of fibromyalgia, and although he may have learned more about it since then, it is not his specialty, just as depression itself is not. Or maybe it's because I smile a lot and don't "look" depressed.

As far as sleep goes, I do have a CPAP. Hubby and I read an article about sleep apnea in the LA Times and he said, "That's what you do, and it's really scary." So 5 years ago I went to Dr. B and told him what Mr. H had observed -- voila, a night at a Sleep Disorders center and I was diagnosed with really severe apnea.

The CPAP helps a lot, but it is not the whole story in terms of sleep. I have to do my own behavior modification -- as the sleep specialist told me: When no matter what time you go to bed you get up feeling like crap, you lose the feedback mechanism that tells you 8 hours of sleep is better than 4. A person has to relearn that, and what I started doing was setting my alarm clock for the same time every day and (mostly) arising then. By midnight or so I am ready to go to bed, and I try to pay attention to that and actually do it. There are fewer 3 am bedtimes for me, but sometimes I relapse for several nights at a time.

We needed a new mattress, and decided to try a Tempur-Pedic. Those things are extremely expensive, so I did a lot of research, tried mattresses in stores all over town, discovered that if we bought one online or from a magazine or television ad, we could have several months to try it out without penalty. So we went that route, fully assured that if we didn't like it (some people find them intolerable) they would come and pick it up and refund our money.

I love the thing. It is a godsend for me. But it is still not the not the whole story on sleep.

Two years ago I went to a free lecture on fibromyalgia given by a youngish neurologist and was absolutely blown away with the flood of new information. That's where I learned about Dysregulation Spectrum Syndrome. It took me a good 6 months to get an appointment with Dr. R, but for the first time since the diagnosis some 23 years ago I am seeing a doctor who actually "believes in" fibromyalgia.

If you are okay with over the counter supplements (as opposed to , you can try the ones he's currently having me try: L-5-HTP (or 5-HTP) one pill at bedtime and Magnesium Malate (Magnesium with Malic Acid) three times a day. I found them both at a health food store. Costco now carries Natrol 5-HTP Mood Enhancer 100 mg and the label says you can take it up to 3 times a day. The other is Source Naturals Magnesium Malate yielding 833 mg Malic Acid 1,250 Mg.

Trigger points: Still there, but not spreading the pain out so much I can't lie down.

Stress: I am feeling better now that my stress level is reduced. I had more years than I care to think about of over-the-top stress. My kids are grown now and stopped being teenagers ago, Mr. H has settled down a lot, and 3 years ago my mom passed away and stopped emotionally bludgeoning me every chance she got. What a surprise that my stress level has gone down!

Comfort measures: When I remember to do so, I make an appointment at the local massage school. For only $35 I get more than an hour's massage. The students are very good, and I have learned that I can ask for a woman, since I'm more comfortable that way; I've also learned to tell them up front I have fibromyalgia and need gentle work.

Ambien: Some of the potential side effects sound more scary to me than weight gain, which might be why your doc wants to try something else.

Hekate

[donx]

78. What is Fibromyalgia....

Fibromyalgia (new lat., fibro-, fibrous tissue, Gk. myo-, muscle, Gk. algos-, pain, meaning muscle and connective tissue pain)

Meaning.. Pain on fibrous tissues like muscles....




http://en.wikipedia.org/wiki/Fibromyalgia">Fibromyalgia


http://www.learningonlineprogram.com/">iLearningglobal

[shireen]

85. welcome to DU, Donx.

thanks for the graphical description ...

[Name removed]

91. Deleted sub-thread

Sub-thread removed by moderator. Click here to review the message board rules.

[ChicagoSuz219]

90. I've got it, too...

...basically, it's 24/7 pain, swollen painful joints - everywhere. It's aggravated by cold, rain & stress. Sleep comes rarely & for short periods of time. Hard to concentrate. Reading a book that used to take a few days now takes months. Need to use a/c even when it's snowing outside. Most meds are useless... cause weight gain which only makes it worse. It's not fatal... just really obnoxious.

It's hard to bend, reach, pick up things. There's usually a few hours late afternoon, early evening where I feel a little better. That's when I run errands, make appointments, etc. Even that's exhausting.

I take ibuprofen & methocarbomal when it's really bad. It basically takes the edge off, there's almost always some level of pain. I take scads of vitamins, homeopathic remedies. I do what I need to do. Hard to get psyched up to go out and socialize like I used to. I miss it.

Inside I feel 16... it feels like I'm trapped in the wrong body. It sucks!

If you don't have experience with it, be grateful. If you know someone who has it, be sweet to them - offer to help, if/when you can. I'm sure they'll appreciate it.

Thanks for letting me vent... hope it helps you understand your girlfriend.

[laughingliberal]

93. Sums up my pretty well

Although some days I wake feeling well and can function for 4 hours or so before collapsing.

[Hekate]

92. Link here -- It's part of the Dysregulation Spectrum Syndrome

http://www.fmnetnews.com/basics-overlap.php

I'm 62 and have probably had fibromyalgia half my life. I'm not sure how long I've had sleep apnea, but some believe it's in the spectrum.

Basically, of the dozen overlapping syndromes I probably have at least half of them. From the time I was diagnosed with FMS 23 years ago until less than 2 years ago, I never knew there was a connection -- in fact I had almost no information at all that whole time, because initially so little was known about it.

A lot more is known now.

I see some posters here are saying things like it's a made-up disease, but I guarantee they don't suffer from it. It's as real as rheumatoid arthritis.

Hekate

[greenbird]

124. Your link is fascinating; thanks.

About twenty years ago I began exhibiting symptoms of CFS and MCS. I was diagnosed with moderate to severe sleep apnea and given a CPAP machine. My migraines, which had been going on since I was in my twenties, occurred daily. I couldn't finish a grocery shopping outing without sitting down in the aisle and resting. I couldn't walk into the entrance of a department store, where the perfume counters are, without getting an instant migraine. I had a constant, dull ache in my muscles.

I'm still not sure exactly what happened. I started taking supplements and gradually withdrew from the migraine pain meds and antidepressants that were prescribed for me, but I know people who've done a lot more than that and still suffer greatly. The fatigue went away, the migraines diminished to a few times a year, my sleep apnea disappeared (I haven't needed a machine in a few years). I hesitate to even tell this story because most of it is so mysterious to me. I wouldn't dream of telling someone else what they should do based on my experience. I'm not even sure that my "cure" was a result of anything I did!

As far as diet is concerned, I've always avoided things like aspartame, HFCS, MSG, etc. I was one of the few 50s kids to be raised on healthy, unprocessed foods - whole grains, raw milk and lots of veggies. My recovery (I feel absolutely fine now) is pretty much a mystery to me. The only thing I know for sure is that there are no simple answers! Any one who suggests one is an immediate red flag for me . . .

[zalinda]

97. I have fibro and here is what you can expect

She will have good days and bad days, even good years and bad years, there is absolutely no way of telling. The truth is that it hits women more than men, and doctors have been patting women on the head and telling them it's all in their heads and they should exercise, find a husband, have more sex, see a shrink or whatever is the current fashion.

Yes, fibro usually starts with a trauma, either physical or mental. Some people with fibro can function quite well 90% of the time, and some can't hardly function at all. One guy in our group was a pharmacist and when he had finally been diagnosed with fibro, his memory was so bad that he had to carry around a notebook, so he could remember why he was going into a room. Because body chemistry is so different, everyone finds that not all symptoms apply to them. Or some are very severe while others are barely noticeable.

I have gone years with being able to work, only taking flexerill on weekends and sort of sleeping through the weekend, getting ready for the next weeks work. And I've gone months with thinking that I could go back to work because I'm not feeling too bad, and then the weather drastically changes and I can hardly get out of bed.

People with fibro generally don't look sick because we try not to see anyone when we are not at our best. We tend to hid the fact that we have a muscle twitching in our arm that is driving us crazy, because we can't stop it. Of course, that insistent muscle twitch doesn't hurt, but a charley horse in your thigh will bring you to your knees in a heart beat. The constant muscle aches can be dealt with, it's the searing pain that will get to you. And unlike most other diseases, fibro doesn't necessarily get worse, some have actually gotten better to the point that they think that they've beaten it.

And what is the best way to deal with fibro? Being as happy as possible. And being loved is the best medicine. If she is smart, witty and attractive, she will still be that, except for sometimes when she won't. Snuggling up on the couch, and watching a silly comedy will help bring that smart, witty and attractive woman back. Laughter is the best medicine.

zalinda

[gleaner]

98. I was evaluated by a Rheumatologist for ....

Fibromyalgia. I have MS but there was something else wrong that was causing intense pain that my doctor felt the MS could not account for.

The Rheumatologist explained that Fibromyalgia is an autoimmune disease which causes pain centers deep in the brain to misfire for an unknown reason, just like the immune system attacks the nerves and myalin in people who have MS in response to some unknown trigger.

Fibromyalgia can also cause extreme fatigue that gets so intense that the patient can barely move. I understand that well because MS does the same thing. It is hard to describe how devastating it can be to function always beyond the level of exhaustion and never be able to rest enough to have energy.

There is no real treatment for Fibromyalgia. The doctors can offer medications to help control the pain, but finding the cause remains as elusive as find a cause for MS, ALS, Lupus, Rhumatoid Arthritis or any other autoimmune disease. It is very frustrating that no one can find a cause much less a cure.

https://health.google.com/health/ref/Fibromyalgia This is a link I pulled off of Google that you may find informative. It will link you to other sources of information as well. I hope it helps, and the best of luck to you and your lady.

[Political Heretic]

99. After reading this thread full of assholes, here's all I can tell you about my Mom:

(the assholes being the heartless "its all bullshit, its a cheap excuse to smoke pot, its made up by fakers" people..)

1. My mom is in an extreme, debilitating amount of pain. Multiple doctors all agree pain is genuine and not psychosomatic

2. Doctors told my mom that one part of her problem was fibermyalgia. Whether the doctors were right or not, I don't know and I don't care. All I know is that my mom is in extreme amounts of pain that she isn't faking, whatever is wrong with her. And medications that they chose in response to thinking it is fibermyalgia help her.

Everything else, to me, is pretty irrelevant.

[tavalon]

117. This thread only has a couple of assholes

Everyone else has been helpful, empathetic and just overall great. Of course your mother has pain and yes, it isn't in her head. I hope that we get a lot further on figuring out how to help all of the people who aren't being helped now.

[laughingliberal]

118. +1 nt

[tavalon]

101. It's a diagnosis of exclusion

which means, yeah, they have no clue what causes it. And because they can't diagnose it, the medical establishment, as is usual for them, still makes the assumption it's psychosomatic. They are getting better slowly and eventually, that will not be the base assumption, especially if big pharma figures out how to cash in.

[laughingliberal]

108. Oh, trust me, it's getting better. 20 years ago no one listened to us to speak of

Now, most acknowledge it's real and some are even pretty good at treating it.

[TicketyBoo]

119. A rheumatologist

CAN diagnose it.

When I was first diagnosed, the rheumatologist started prodding the eighteen trigger points of fibromyalgia, and I had no idea what she was doing. I was trying not to exhibit the pain she was causing me, and I thought, "She must know some exotic oriental torture technique."

I finally told her, "That really hurts. Am I supposed to tell you when it hurts?" And she said, "Yes, absolutely!"

And, there it was. Fibromyalgia. Diagnosed. About 15 years ago.

[tavalon]

122. Okay

That wasn't my experience but then, my experience throughout my life with regards to doctors and auto-immune diseases hasn't been very good.

[struggle4progress]

110. ... Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical

with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause ... http://www.fmaware.org/site/PageServer?pagename=fibromyalgia

Chronic widespread body pain is the primary symptom of fibromyalgia. Most people with fibromyalgia also experience moderate to extreme fatigue, sleep disturbances, sensitivity to touch, light, and sound, and cognitive difficulties. Many individuals also experience a number of other symptoms and overlapping conditions, such as irritable bowel syndrome, lupus and arthritis ... The pain of fibromyalgia is profound, chronic and widespread ... Symptoms include profound exhaustion and poor stamina ... Many fibromyalgia patients have an associated sleep disorder that prevents them from getting deep, restful, restorative sleep ... Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination. http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_symptoms

To receive a diagnosis of FM, the patient must meet the following diagnostic criteria:
* Widespread pain in all four quadrants of the body for a minimum duration of three months
* Tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied
http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_diagnosed

[skepticscott]

130. Does any of this take into account

or explain why the vast majority of those who are diagnosed (by a doctor or by themselves) with this syndrome/disease/condition seem to be women? I didn't check them all, but every one of the people on this thread that I did check who identify as having fibromyalgia was female. If there is some specific underlying cause to at least some of the cases, that would seem to be medically significant, but it would also be explained by the disease being marketed much more aggressively to women (this sort of syndrome being much more difficult to get men to embrace).

[Mamacrat]

134. Maybe the way we handle health problems?

Many men won't seek out medical help for anything. It's probably likely that there are men out there with this syndrome who just suffer along like the women, but with no diagnosis (e.g. depression, anxiety) at all. And while men are less likely to seek out help they are more likely to commit suicide. Maybe there is a man reading this thread who has been maybe at least diagnosed with depression or anxiety and has the pain (and other symptoms) who will realize there might be something more to his condition.

[skepticscott]

171. I expect you're largely right

although I did see a fibromyalgia commercial (or, more accurately, a pharmaceutical for fibromyalgia commercial) last night that had a man in it (briefly).

[struggle4progress]

143. dunno. feel free to do some research

[mopinko]

145. actually the recognition came about because of men who had it.

viet nam vets, i am told.

[ChicagoSuz219]

158. Really? That's very interesting...

I've never heard that. That makes them around my age. Now, I'm wondering what else we all may have had in common. Polio shots, smallpox vaccines, flouride in the drinking water/toothpaste, mercury in silver fillings, childhood diseases, DDT on fruits, veggies, etc.

I wonder if there's any research going on re: this.

[mopinko]

161. i just heard it from someone whose father was a shrink.

she told me that the name was coined by docs that were working on agent orange issues. iirc, her dad was on the dsm committee, which is where the stuff was being discussed.

sorry i don't have more info about that.

[ChicagoSuz219]

164. Maybe symptoms are the same/similar...

...different origins. Who knows?

Now all we can do is treat the symptoms. It would be nice to know if there was a way to avoid it in the first place...

[mopinko]

166. i do think it is a cluster of symptoms that can be caused by many things.

i am told that apnea can cause the same syndrome, which is reversed with successful treatment for the apnea.

[ChicagoSuz219]

167. I've never been tested for apnea...

...although sleep (or rather, the lack of it) is a HUGE issue for me.

[Hekate]

149. Maybe because women have a different physiology and body chemistry?

And awful lot of Western medicine was/has been/still is being developed with the idea that the default patient is an adult male -- which merrily excludes most of the population -- i.e. all women and children. Women don't have the same heart attack symptoms as men, but for most of the 20th century the entire research about heart disease, heart attacks, and heart attack warning signs was organized around men.

Just a theory.

As to specific underlying causes -- mental and physical trauma seem to be a trigger. A staggering number of fibromyalgic women were sexually abused at some point, yet the first doctor who ever included that question in his list of potentials (Did you ever have a major car accident, etc etc etc) was the neurologist I saw at the age of 60. His comment to me was that trauma, even mental, literally changes the physical brain, and that researchers know this now. That would go far to explaining post-combat PTSD, wouldn't it?

Hekate

[Lorien]

163. See post #162. nt

[cornermouse]

120. emedicine.com - search for fibromyalgia

Note: You may need to do a free sign up and log in to get the info.

http://emedicine.medscape.com/article/312778-overview

"Fibromyalgia, a common disorder, is a syndrome composed of a specific set of signs and symptoms. Fibromyalgia has long been considered a "wastebasket" diagnosis. However, in 1987, the American Medical Association (AMA) acknowledged fibromyalgia as a true illness and a potential cause of disability. Many well-respected organizations, such as the AMA, the National Institutes of Health (NIH), and the World Health Organization (WHO), have accepted fibromyalgia as a legitimate clinical entity.1 Fibromyalgia is now recognized as one of many central pain-related syndromes that are common in the general population. Research advances have lead to the conclusion that disturbances within the central nervous system (CNS) known as central sensitization represent the most likely source.2

Patients with fibromyalgia generally see many physicians before receiving a correct diagnosis. Patients may seek medical advice for more than 5 years before a correct diagnosis is made, and more than 50% of patients receive a misdiagnosis and may undergo unnecessary surgery."

Possibilities include but are not limited to low serotonin levels, high levels of neuropeptide in spinal fluid, or low ATP.

[Mamacrat]

132. Great information here!

I'm so glad I caught this thread. I had no idea that the symptoms of Fibromyalgia Syndrome could be from a sensitivity to gluten. My young son recently had a inconclusive result on a blood test for gluten sensitivity; he will now have to have a biopsy. I had a close relative who has something similar, so I thought I'd get tested, too. Wow, what if that's what has caused my Fibromyalgia!

I fit into other categories, so to speak, that people have mentioned here. I had mono at 13 or 14. I had a trauma right before the worst symptoms started, but had others before that. Whatever the underlying cause it does not surprise me that it could be aggravated by stress. Speaking of which, I saw John Stossel scoffing at this syndrome, saying it was only stress. And I also saw him scoff at chemical sensitivities. I'd take him on any day about the chemicals. I have smelled gas leaks long before anyone else could (I definitely had more fatigue after my parents got those gas logs in the fireplace years ago) and can sniff out many a newspaper without even knowing it's there. (For some reason the New York Times doesn't bother me.)

I'll add here the definition of a syndrome for some who need to read it:

In medicine and psychology, the term syndrome refers to the association of several clinically recognizable features, signs (observed by a physician), symptoms (reported by the patient), phenomena or characteristics that often occur together, so that the presence of one feature alerts the physician to the presence of the others. In recent decades the term has been used outside of medicine to refer to a combination of phenomena seen in association.

The term syndrome derives from its Greek roots and means literally "run together", as the features do. It is most often used to refer to the set of detectable characteristics when the reason that they occur together (the pathophysiology of the syndrome) has not yet been discovered.

ETA: I forgot to mention the RLS. They drive me crazy! I think the theory about sleep is plausible, too. If you have RLS and don't get the deep, restorative delta sleep then everything is thrown off. As someone else mentioned, if they woke a healthy person they would get similar symptoms. In fact, they can induce diabetes in someone by disrupting their sleep. And you don't have to wake fully to not get deep sleep. You can sleep all night and never get it. I've read that some medications (e.g. Klonopin) can disrupt the delta sleep even though it otherwise can help people sleep. Has anyone found any good sleep aids that lead to deep delta sleep?

[pipi_k]

139. About the RLS....

Mine isn't severe, but it is very annoying when I do get it, which is probably a few days each month. Although there are months when I don't get it at all, but whatever...

Have you ever tried tonic water with quinine?

I keep a supply of the stuff on hand because it does stop the symptoms. A small glass...maybe 5 or 6 ounces...is enough to stop the creepy crawlies and the involuntary jerking I get.

One rather odd thing, though, which I've never seen anyone else with RLS mention...I can often tell just before an "attack" comes on because I'll get these strange twinges in my lower spine. None of it is actually painful, just real annoying. Oh, and I've gotten it in my arms a couple of times...that's really weird.

anyway, try the tonic water with quinine and see if it helps. :)

[ChicagoSuz219]

160. Be careful w/quinine...

...it make some people suicidal.

[ChicagoSuz219]

159. Weird...

...I had mono in the 4th grade. Hmmmmm....

[HuckleB]

141. One link that might help.

http://www.ohsu.edu/xd/health/health-information/getcontentbykeywords.cfm?keyword=Fibromyalgia

Also, why should this topic be pushed off GD and into the health forum, where it is going to get much less of a response? Why can't health issues be discussed in GD? It simply seems like DU should just get rid of GD, since it's clearly inappropriately titled.

Best of luck to you in your search for information.

[mopinko]

144. because someone alerted.

why, i don't know. but that is how threads get moved.

[Lorien]

162. As someone who was diagnosed in 1986, I have only recently found out:

I always thought that my fibromyalgia was due in part to environmental toxins. In part, that's true, but now I see that the "body burden" of toxins (heavy mercury poisoning and loads of industrial chemicals) lead me to this, that caused the fibromyalgia:

Since the 1970’s several new health issues and diseases have been “discovered”. In 1980, Chronic Fatigue Syndrome and Fibromyalgia were first noted. High cholesterol wasn’t considered a widespread health problem until the 1970’s, and Depression has become an epidemic. In 1982, Osteoporosis also became a health issue.

In fact, all these health issues have become closely related to undiagnosed or undertreated hypothyroidism.

The TSH (thyroid stimulating hormone) test was created in 1973. It is used to diagnose thyroid problems, but it measures a hormone from the pituitary gland, not the thyroid. A feedback loop exists in your body where the pituitary gland produces more or less thyroid stimulating hormone in response to the level of thyroid hormones in the bloodstream, and the thyroid produces more or less hormone based on the level of TSH. The normal range for the TSH test has been lowered several times, (the AACE, American Association of Clinical Endocrinologists, now recommends a range from 0.3 to 3.0), yet patients are not diagnosed until the TSH is much higher than the 3.3. In the case of autoimmune thyroid problems, the TSH can be within the normal range, yet antibodies are attacking the thyroid. Even the AACE estimates that as many as 1 in 5 Americans suffers from hypothyroidism.

A human thyroid produces T4, T3, T2, T1 and calcitonin. For nearly 100 years, hypothyroid patients were given desiccated porcine thyroid (dried thyroid gland from pigs), and doses were increased until all symptoms were gone. Synthroid became the treatment of choice for hypothyroidism by the 1970s. This new drug contains only the storage thyroid hormone known as T4, leaving patients undertreated.

Cholesterol is essential to your body. It is the precursor of pregnenolone, which Dr. Peatfield called “grandmother of the adrenal hormones”. It is needed for development of the brain and nervous system, and for fertilization and fetal health. In the skin, under sunlight, cholesterol produces vitamin D. In the 1960’s, Dr. Broda Barnes proved that when thyroid function is low, the cholesterol level in the blood rises, and when thyroid hormone is administered, the level drops again. Yet, according to Dr. Joseph Mercola, at least 12 million Americans take cholesterol-lowering drugs, mostly statins.

Dr. John C. Lowe, has documented clear relationships between fibromyalgia and thyroid function. In fact, fibromyalgia patients benefit from thyroid treatment that includes the T3 hormone. Similarly, in the magazine “Alternative Medicine”, Dr. Raphael Kellman indicated that an underactive thyroid may be the cause of Chronic Fatigue.

From an article by Irene Aleger, “ The myth of osteoporosis began with the selling of hormone replacement therapy (HRT). With no evidence that HRT would even prevent or treat osteoporosis, a major promotional campaign in 1982 by the pharmaceutical company producing the synthetic hormone, suggested that it could prevent this disfiguring and disabling disease. Most disturbing, was the idea promulgated that all women are at risk for osteoporosis, after menopause.” And as for depression, is there a woman with hypothyroid symptoms who has not at least been offered an anti-depressant by her doctor?

The truth is that when hypothyroid patients are not diagnosed, or are inadequately treated with T4-only medications, the pharmaceutical companies make a fortune from the drugs prescribed to treat what are essentially hypothyroid symptoms. Abbott Labs made $541.3 million in 2000 on Synthroid alone. SSRIs are widely prescribed for depression; add in the profit the drug companies make from statins for cholesterol, pain medications for fibromyalgia, sleep aids for CFS and Fosamax for osteoporosis and the amount is staggering.

http://www.stopthethyroidmadness.com/recent-new-diseases/

[Name removed]

172. Deleted message

Message removed by moderator. Click here to review the message board rules.

[4dsc]

176. Fibromyalgia myths: The truth about 9 common myths

http://www.mayoclinic.com/health/fibromyalgia/AR00056

Get the fact people before posting..