Ok, I will say first off that I really did think I had FMS going on, I do have the tender points and the fatigue and a little sleep disruption now and then when I get stressed but with my multiple joint findings I really didn't think this would be my end-all diagnosis (more a concurrent finding instead). Well my new rheumy seems to disagree. I do not present with the "classic" RA symptoms nor do my blood tests support his definition of an inflammatory arthritis (so what if my CR-P is mildly elevated...) and I guess his knowledge is greater than mine regarding the almost complete lack of literature linking bursitis, tendonitis, synovitis with FMS out there... So I’ve gotten trashcanned into FMS as the only problem. When I questioned him about how I could have so many joints involved without a systemic process at work I got the “mechanic’s shrug” and a somewhat vague explanation that I have a “musculo-skeletal disorder” . Ugh.

Double Ugh.

Needless to say I'm just mildly disappointed with this dx. However, in the spirit of being a good sport (mostly for my husband’s sake, he is very tired of the endless “quest for diagnosis” and I can hardly blame him) I will go along with the recommended treatment protocol and see if it helps me to be able to walk again. I just downed my first Cymbalta (probably a good thing, since I’m pretty depressed right now) and once we get back from vacation I’ll go do everything the physical therapist tells me to do. If these therapies make it so my joints get all better again then I’ll stand corrected. ...If I'm still standing that is.

Sometimes this whole thing just makes me so very tired.

Well I am learning a lot about this.

I just found there is a syndrome called "multiple bursitis-tendonitis syndrome" which is part of the generalized pain syndromes such as fibromyalgia (or considered by some a subset of FMS). These are all considered "nonarticular rheumatic pain syndromes” (or “nonarticular rheumatism"). Of course these seem to me to be pretty much descriptive titles like, "you've got a pain in your joints syndrome"

After reading up in Wiki and Emedicine about FMS I am pretty convinced that, given my obvious tender points, fibromyalgia is a very good call for many of my ANS dysfunction problems as well as the fatigue, brain fog, IBS and stress intolerance.

But it is still a very big question in my mind as to whether or not it is co-morbid with an autoimmune rheumatic disease (as it often tends to be). All I find in the literature about my kind of joint problems say that multiple bursitis and tendonitis can be caused by systemic rheumatic disease-- the other reasons just don't apply in my case, i.e. huge athlete (overuse), infection, metabolic disorders like pseudogout or Fluoroquinolone antibiotic use, etc.

But I have found the reading fascinating and am reacquainting myself with all the complexities of FMS as well as all the hypothesizing that goes with it. But the more I read the more convinced I am that this is a large player in my symptomology.

So you can color me convinced on FMS but not on the other joint stuff.

Some reading I found good:

Nonarticular Rheumatism/Regional Pain Syndrome

emedicine: Fibromyalgia

Wikipedia Fibromyalgia

mcaimless - i don't know enough about your symptoms, etc., but i'm going to toss an idea out there.

my daughter was 13 and went from a normal active, athletic child on sunday to an old woman who could not walk on monday. seriously overnight she could not use her knees from the pain. long 8 month story short - it was drug induced lupus causing arthritis in her knees. this was caused by tetracycline that she was using for acne. she had been on the tetracycline for 2 years before the body started attacking itself. we took her off the tetracycline (and all the other meds they put her on to 'fix' it) and voila, she could walk again without meds.

she is also the same daughter that i wonder if she has oi/pots because she gets some odd symptoms of dizziness and fatigue and headaches for the past 3 years. but she is 19 now and i can't drag her to the doc. she is doing well, just has periods where she is exhausted in the fatigue way, headaches, etc.

during that 8 months, the rheum we saw told me that we'll figure it out eventually and to stay off the internet. it was an orthopedic surgeon who figured it out, not the rheum (useless).

anyways, my point is maybe there is something you are taking which is causing this? just a thought....

I am a very serious "non-taker" of medicines but thanks for the thought. I only take a small amount of estrogen now since my hysterectomy and these symptoms came on long before I started that med.

I would like to know if anyone here is taking Cymbalta and how they are handling it. I'm starting on a 30mg dose right now.

mcaimless - thanks for filling us in on your diagnosis.
i know nothing about fibromyalgia, but i do remember an old friend who said she had it, but never appeared to have joint issues. she only complained of tender points, and gave off the impression that fibro did not involve inflammation or bursitis. but it does? why then is fibro so controversial and unaccepted in the medical community if it can demonstrate such obvious symptoms, as in yourself?
just curious. i sure do hope the treatment helps you out. i think you have the right attitude, and one i wish i could have more of - to accept a diagnosis, be willing to give it a try, and then pursue otherwise if treatment proves uneffective.
keep us posted!

Well Gracie, I SORT OF have accepted the dx, I do agree I have FMS but I don't agree that my joint problems are FMS. I think FMS is co-mingling with another inflammatory joint process yet unnamed (FMS is not an inflammatory syndrome).

When I first got sick I was told I had CFS/FMS and I immediately read up on both of the syndromes. I ruled out FMS at the time because I was experiencing NO pain in my joints, muscles or anywhere (I blew off CFS because my fatigue wasn't that great and I didn't have the sore throat, lymphadnopathy, and other symptoms). This slowly changed over the following year and a half when I developed hip pain, then shoulder pain, and then I noticed the tender points. It's almost as though the FMS developed as a result of whatever inflammatory things were going on in my joints. I also had developed myofascial pain in my shoulders as well and had some trigger points injected. So it seems to be like a cascading pain syndrome that seems to have its origins in the inflamed bursia in my hips.

It's all very confusing and puzzling but if the meds help break the cycle of pain then I'm all for it. At least I'll be able to get more active again.

Re your cymbalta question: I took it for a few months. I believe I started at 20mg and stayed at that for a couple of months. I couldn't tell ANY difference, so pcp increased the dosage to 40mg, which made me suddenly start to jerk in my sleep. My pharmacist said it could possibly cause seizures so pcp dc'd it. I did not taper off and had a bad fall as a result. It was not the right drug for me! Hope you have better success with it, as I understand many have been treated successfully with Cymbalta.

Thanks Mollie, I've read that it is drug that definitely needs to be tapered if you go off it. I had troubles with Fluoxatine with my dysautonomia (lots of tremor) so I'm cautious about this one. The reason I chose it over the Lyrica is my signs of depression and anxiety that seem to be getting worse. I was hoping to kill two birds with one stone. My rheumy told me that it is also a drug to increase very slowly so I think the bump from 20 mg to 40 mg may have been too much in your case. But again, we tend to have a lot of tolerance issues with meds that affect the ANS in any way.

SIGH! is about all I can do. I know how you feel.

One word of caution...don't forget to follow your gut. That doesn't mean you have to stay on a mad hunt for answers. But if you are like most, your gut instincts will usually steer you in the right direction. Your illness may evolve, may not. Hopefully not for you!!!

Maybe Fibro is the end all diagnosis, maybe not. Luckily you can try treatment that is protocol for Fibro and see how you feel. I know it's all wishy-washy, but I've learned during my own journey and quest that there is so so much that is still unknown in medicine sometimes we have to proceed with what we know and realize it is not an exact science and we don't always get exact answers.

I'm writing this to remind my self, too. Like you, I want answers and have an incredible need to know.

Good luck with the Cymbalta. I know many people have been helped by that drug.

Let us know how you do.

Sorry about all your frustration mcaimless. I was diagnosed with fibromyalgia about ten years ago due to widespread awful pain (to the point I couldn't hold anything in my hand). I had all the tender points but I didn't really have joint pain. This was at the time when fibro was still a "catch-all" diagnosis. My POTS symptoms started about that time too although I hadn't been diagnosed with that yet. I was diagnosed with fibro by a rhematoid Dr. who put me on amitriptyline. It did help some but what really helped was yoga. I started doing it and was in remission within a week (I kid you not and it really hasn't come back since. I'm not sure if what I had was true fibro or not. I understand it can go into remission for years but is never really gone. I've often wondered if that was the trigger for my POTS. I hope it doesn't come back.......
I am truly hoping that you have good results with the new drug and are feeling better. I know how frustrating this journey of diagnosis can be.....

Thanks guys, I was up in the middle of the night last night just furious about all this. I'm feeling a lot calmer this morning though.

All I can do is shrug my damaged shoulders and go on from here. If and when something changes (as they tend to do, I find) I'll look at it again. In the meantime I'll take a nice gentle swim in the pool...

Yes Rosie, I do intend to have a sleep study in the not-too-distant future. I think it's entirely possible that apnea may be at play (though my medically trained husband has never seen me be apneac while I'm sleeping) but more interesting and what seems more likely to me is the Alpha EEG Anomaly and I know I suffer from Periodic Limb Movement Disorder (PLMD)since my husband has woken me on numerous occasions for thrashing and kicking. I also had restless legs for a number of years but I had stopped having the symptoms once I stopped my SSRI.

So once I get back from my well-deserved vacation this summer I plan to get my PCP to order up a sleep study for me.

I found this to be a nice article on FMS and sleep:http://www.fibromyalgia-symptoms.org/fibromyalgia_sleep_disorders.html

mcaimless - I almost got chills as I read your posting! It sounds SO much like what happened with me. It started with the pain of hip bursitis. Next was a "locked" SI joint followed by a "frozen" shoulder. Then the more flu-like pain started. Although the Lyrica keeps this flu-like pain under control as long as I don't over do, it is not controlling this bursitis and tendonitis pain that will crop up just when I starting feeling like I have the Fibromyalgia under control. It was hot and humid here (Iowa)yesterday for the first time all summer. I had some things that I thought I had to take care of and was out in the heat. By evening, I was hurting from the Fibro and what ever this other pain is that centers around my left hip and left shoulder. Then I didn't sleep and felt like death warmed over this morning. Next I'm going to do a search on the terms you related above.

I do question the statement in the article that you listed and Rosie has listed, about 80% of people with Fibro having sleep Apnea. I tried to see what organization sponsors that site, but it had minimal information in the "About Us" section. I didn't see a citation, which I would like to see for a study that shows the data for the 80% number they use. I have read quite a few books and web sites since my diagnosis, and though many of them mention sleep apnea as one of the possible causes of sleep disruption with Fibro, I have not seen that number in any other information. My training is as a medical librarian so I was taught to question broad statements made in books and information found on the Web, that does not have a citation or the information is not provided by a trusted resource like Mayo Clinic. I do sometimes find very interesting information on sites like Wikipedia, but try to find back up data elsewhere on sites I was taught to trust like Medline Plus. I posted a link to an article today that was from About.com but did relate that this is not always a source I trust. - Kay

My ME specialist is also a specialist in Fibro and is sending all of his patients for sleep studies. I asked him about sleep apnea in this patients and he has found only 15-20% of them have apnea and added 'modest only'.

My cousin has bad fibro but very minor sleep disturbance. In fact I made her get tested for D3 and she found out it was incredibly abnormally low. After being on a prescription of it for a couple of months, I slept in the same room with her at the time while visitng the east coast, and I gotta say, even I could hear her breathing better. And if she got up in the night it was because she had to pee really badly! (if it's not one thing it's another right?)

Also---
There was a study where Fibro patients were given 4 to 5 grams of D-Ribose daily. After a month they had significantly reduced pain.

I haven't been diagnosed with fibro, but I have two cousins and an aunt with it. I have all the tender points.

Anyway, I've been on 4 to 5 grams of D-Ribose for a couple of months now and it's worked for me. Funny thing is with less pain, I feel like I actually want to exercise, so I do (and I'm not dieing in pain later by the way). Which further induces the cycle of getting better.