What is Fibromyalgia?

[Mom_4kids]

I am trying to understand more. I have had several doctor friends (one a DO, an orthopidist and even the nuero I have seen) tell me that Fibromyalgia is not a diagnoses. Because there is no test that proves that that is what you have or even tells you what the cause is from. And that after that diagnoses is made other doctors will not treat pain as any thing other than that when it could be something, but they just tend not to look.

I have had symptoms of pain and stiffness and weakness in my muscles with what should be normal activity, but I cannot do the same things I use to with out a heavy feeling and an inability to move my legs or arms and even my jaw get stiff and weak. Generally I have very little pain. And yet my pcp doctor says I have Fibromyalgia.

I only want to understand better these conflicting views. Can any one help?

mom_4kids

[lilmex]

Hi, I was 'diagnosed' with Fibromyalgia by a doctor who I went to because I thought I had Arthritis. This was about 10 years ago. After many tests to see if it wasn't other things, he said "I know exactly what you have, its Fibromyalgia!' Of course I had never heard the word, so it was all new to me. My symptoms were fatique, brain fog and no concentration along with the soreness on my chest along the sides of my ribcage and down my spine. Then when I pressesd on the inside of elbows and knees it felt like they were bruised.  I was anemic and had sleep apnea.But even after he told me about "fibromyalgia' he still cloncluded that perhaps my tossing and turning in my sleep (from trying to wake and take a breath) was making my body sore. The anemia I know for a fact was from having heavy periods. He was surprised when I told him my periods lasted almost 2 weeks.He said he had never heard of a period lasting two weeks.(?) A doctor! Anyway, spring forward 10 years....I've been on bio-identical hormone therapy. I think its helped the brain fog, but sometimes I'm just not with it. If I'm really sore I take a nice hot bath and Ibuprophen 800. My husband stretches the muscles in my back gently in the morning so I'm not so tight. Once I start walking around and moving the pain either goes away or I'm just not thinking of it anymore....that is until I sit down for a whle then get up. IWhen no one is here I try to dance around and just shake my body in places to work out the soreness and this helps. I've seen people that can hardly walk like they are crippled with Fibro but I'm lucky , it just hurts when I get out of the car, out of bed or up off a chair or couch.

[futuredoctor101]

I would read the book ' The complete Idiot's guide to Fibromyalgia.'
This book explains fibromyalgia and what I can only assume is a vast majority, if not all, of conflicting conditions and symptoms of other diseases. It has three pages listed of sypmtoms that you can check off if you have them, and then you can bring them to your doctor. You can also further read about conflicting conditions. Overall, the book is very helpful!
If you have fibromyalgia after all, I would pick up the book 'From Fatigued to Fantastic.'
It's a great self-help book!!

[julia111]

I was diagnosed w/ fibromyalgia 12 years ago at the Mayo Clinic - and recently returned with more - what I thought were serious - problems.  

Doctors there still attribute these all to the FM.  They recognise it as a real illness, and admit they don't know what causes it and that it can be quite awful at times.  They also believe that it often occurs along side of other autoimmune illness.  

So what it's worth - Mayo is pretty well respected in the medical community - and they are on board w/ FM.

[snapteach]

I wish you were my doctor!! Your understanding and compassion are to be commended.  It is too bad that many of our doctors can't comprehend this.  I wish you would read my post I just put in about my concerns with Fibro and give me a boost like you have these people.  Posters like you really help others!  Thanks!

[Lanaiwahine]

Hi There,
I too have Fibro, I just left a post in the pain management forum where High Noon told a Fibro patient that they would be better off posting her question under the Fibro forum.  She was asking if anyone in the Pain Management Forum used a Pain Management Specialist for Fibro.  High Noon was the only responder and he told her to post under Fibro.  I dont really understand where he gets off telling others where they should post their questions and obviously doesnt believe that Fibro patients are in enough pain to even post in the pain management forum.  Excuse me, but I didn know that he was the expert on which diseases were eligible for discussion under the pain management forum. His post above confirms to me his lack of knowledge if he believes that the facts arent there to support that Fibro is really a debiltating ,painful disease.  I was flabbergasted to see his response to this woman asking if anyone with Fibro was seeing a pain management specialist and him telling her that she should post only in the Fibro forum, Not in the pain management site.
The fact he believes that there are conflicting viewpoints and to read the NY times piece is testimony to his belief that this is a psychosomatic disorder.  If you have Fibro, you know how frustrating it is to have such an ignoramus butting in when he doesnt even have the correct info.  Fibro have been around for more than a century, it was not just discovered in 1990 , it may have been coined Fibromyalgia then but it was considered a severe arthritic condition for at least a century now.  High Noon is way off base to and does have the "blame the patient" attitude as well, especially after reading this post, he clearly is uneducated.  Thanks Curls for the response to him as he seems to be a negative, blame the patient kind of guy.  I think he must have some orthopedic problem and cant concieve of the neurological pain category.  If he did, he would not come off looking the fool in every post I have read of his.  Blame the patient so much that the Fibro patient is not allowed to ask questions under the Pain Management Forum , according to him.  I guess he knows best and we are all crazy and not deserving of pain management or even the discussion of it.  How sad, that there will be such uneducated individuals giving advise to Fibro patients and trying to tell them that they dont deserve to post in different forums that are quite relevant to their conditions.  I have Fibro, Chronic Pelvic Pain Syndrome involving multiple organs, IBS, Interstitial Cystitis, and have had numerous pelvic/abdominal surgeries with organ removals.  I guess I am not sick enough to post in the pain management forum either?   Only High Noon can decide that, I guess.  It would be interesting to see which medical school he graduated from and if so, how many decades ago(because he clearly is not up to date on Fibro) or if he is an orthopedic pain patient with no understanding for neurological pain.  Seeing the pics of my bladder put to rest the question of whether my pain was real,  my only option for IC is bladder removal.  I am not ready at 40 to have a bag for urination.  I just wanted those of us with Fibro to know that High Noon is not here to help but to blame the patient, even blame us to the point of not letting us post in the pain management forum.  Come on, give us a break.  Like you said, Curls, there have been 4,000 studies done and accepted by the CDC.  Some people hurt others and dont even care.  Compassion and empathy are what we need, not denial of our symptoms and pain being real.  To all my fellow Fibro patients, I wish you the warmest regards and hope that today is a good day and not a bad one for you.  Yours in seeking better health, Lanaiwahine

[Curls]

The moment at which i realized this wasn't in my head, or depression, and that any doctor who couldn't get it could get their head examined...was...

Early in this, I went for my daily 2 min walk (I was working my way up gradually to something less comical).  Down the long block from my house I essentially collapsed onto the sidewalk.  My legs weren't going to hold me up.  About 1/2 hour later, I'd inched my way home resting on every tree in between.  As I sat on the couch with my body in a flare of muscular fatigue that I knew would soon turn to intense pain, I thought...

I'd have to be a nutcase, to think this was all in my head.  Just like they say I am.  

That was the last time I put up with anyone making me crazy or doubting me.  (I'm not good at talking back, but I didn't doubt myself the same way again.)

That article really made me lose respect for the NY Times.  We do need to bombard them.  I hope I'm not the only one on the forum who wrote to them.  (Anyone else have trouble keeping track of loose, lose, lost, loss?  I knew them when I was 8 but I can't seem to get them settled back into my head again.)  I'm also thinking we need to stop saying brain fog to the rest of the world and use stroke-like cognitive changes.  The stories people have to tell are something else.

[sfbaygirl]

Yep,  some docs just don't believe it. I wish they felt like we do and they sure would change their tune. So if it is a non disease, how do they explain all the symptoms we suffer from?  All in our head. Sorry there is no way my head could make up the 12 on the pain scale sometimes. It is ridiculous. Just b/c there is no test for it doesn't mean it doesn't exist. Grrrrrrr. really makes me mad. Some of my dr's didn't respond when I mentioned I had it, including my PCP. He KNOWS how much pain I get.  That article really is a thorn in our sides. Maybe we need to bombard the author with stories of our pain and ask him how he explains it.

I need to join and so should all that have FM/CFS

[PlateletGal]

I've been concerned about the way the medical community is handling fibromyalgia and CFS patients. I used to work in the healthcare field and still have many friends who are still in the field. One of my friends works for a physician and she still doesn't believe that fibro is real ! She thinks that CFS is real, but still dismisses fibro. Even though I don't have fibro myself (at least not primary fibro), I told her that she was wrong. I even worked with three nurses who have had fibro and were too embarrassed to tell the physicians they worked with. Of course they were afraid of the response they would get that they normally get from other physicians they have seen.

This all needs to change and I hope that every person here who reads this will join these non-profit groups like the CFIDS Association of America so that we will have strengh in numbers and make our voices heard !

[sfbaygirl]

Thanks for your comments. I didn't read that article but my husband did. Did you get your letter published? Drives me crazy that they don't think this is a real illness. I waited a year before my Dr. said I had fibro.  Now on Lyrica that is working I forgot my pills for the whole day and asked Dr. what the half life was. he said sure I could forget the doses, but I would feel it. Sure enough I was hurting like a big dog. I wouldn't have believed it either if I didn't have it myself. It is sure hard to see pain in a person and believe it is FM. As for CFS I am sure it is even more difficult. I have had common migraines and cluster my whole life. Just because you can't see it or have a test for it doesn't mean it doesn't exist. Pisses me off.  

[PlateletGal]

Hi Mom_4kids,

I post the LATEST research in my community on both CFS and fibro. I have CFS and I know that what has helped me the most is keeping up on the research and the latest treatments.

http://groups.msn.com/Neuro-ImmuneSupport/messages.msnw

[Mom_4kids]

Thanks for your information and opinion. I will have to look farther into the subject.

[Curls]

typo correction (It drives me nuts that what I type no longer matches the words in my head - part of the cfs brain stuff I guess).  Anyway, the correction

"As for the doctor who coined FM, a several doctors who started researching CFS/FM, thought they'd make their career on it. "...

Also, uclers are caused by a bacteria, not virus.  Doctors kept saying it was stress, even after the AMA accepted the bacterial research.

[Curls]

I just noticed your comment about not having much pain.  Check out CFS.  The two are very similar so it would make sense your doctor would diagnosis FM.  However, CFS involves less pain, but has the heaviness and difficulty moving and fatigue is not a requirement in other country's definitions such as UK.  It's common for people to have some symptoms of both at the same time.

[Curls]

You may want to tell those other doctors that you appreciate their help, but they aren't up to date with the lastest research and maybe if you provided some they could help you better.  There are over 4000 studies accepted by the Centers for Disease Control showing physical changes in the CFS (& FM) body.  Many, many can not be attributed to resulting from pain.

The NY Times article had a lot of bias and outdated information.  As for the coined of FM, a several doctors who started researching CFS/FM, thought they'd make their career on it.  When they didn't find the answers they reverted to calling the patients the problem.  Dr. Strauss (who's since passed away) was famous for this.  You can look at this articles and track his career and see it happening.  I have CFS, so I haven't as much info on Dr. Wolfe, but that should be checked out before taking his word for anything.  Some place earlier I posted my comment about the article that I sent to the Times.

The article was written in a clear 'blame the patient' tone with a lot of factual inaccuracies, so i wouldn't take a blessed thing out of it.  (For instance CFS and FM patient's complaints aren't 'vague' - they are very identifiable and recognizable and distingishable from other illnesses, with the exception that sometimes other autoimmune illnesses can have cross over symptoms.)

Only around 15% of CFS patients are diagnosed according to recent CDC sponsored research.  The doctors you met are an obvious indicator of why.  

Even so, my phillosphsohy is to take what is useful from a doctor and leave the rest.  If you go to the CFIDS Asssociation of America's and the CDC's website and print off information - maybe one of these doctor's will be interested enough to look at the information.

There's something in human or our culture to reject illness and dismiss them.  We just have to fight past it.  At one point diabetes was considered a whiner's all-in-the-head illness!  Then there's that ulcers are caused by stress - and it took over 20 years for some doctors to accept prescribing anti-biotics for them even after research accepted the heloicopter (spelling?) viral cause.

Hopefully as you learn more about FM, you'll decide if it's a pattern of illness that you have, and more importantly, find treatments that help you!  Good luck!

[High Noon]

There are many conflicting views regarding Fibromyalgia.
You might want to start with an interesting article which appeared in the New york Times on January 14th regarding Lyrica, Fibromyalgia, and current "views" on the subject(s). Especially interesting are the comments of Dr. Frederick Wolfe who came up with the original dignostic tools and coined Fibromyalgia in 1990.