Fibromyalgia Misdiagnosis

[dustybrown]

I think I have been misdiagnosed with Fibromyalgia. And I feel as though I am getting weaker and weaker lately. I need some opinions from the group because my doctor doesn't seem to want to help me.

First, I have a strong family history of autoimmune disease including RA, Reactive Arthritis (my father), thyroid and diabetes. I have been diagnosed with DDD, degenerative facet disease, and facet osteoarthritis. I had a shoulder spur that was removed through surgery as well and I suffer from tendinitis in my shoulder and arm. In the past I have had tendinitis in my knees. I also seem to have something going on with my kidneys, but that hasn't been figured out yet either.  

I was diagnosed with TMJ, BUT my teeth grew in incorrectly and one of my wisdom teeth was missing on one side and the other tooth on the other side grew in with double the roots. It was almost as if the bones grew asymmetrical. I used a dental guard for a year without any relief of the migraines I suffer from. I don't grind my teeth. I am certain of it.

I had a ANA screening performed that came up positive for antibodies, but my doctor refused to do any further testing. My RA factor and SED rate was normal. In my CBC, my red blood count was low and my ferritin was low, but everything else was fairly normal. Any ideas???  

[Kevnhall82]

Thanks for your suggestion given to Dusty, your suggestion will benefit me also, as I searching for this question only on tmj remedy advice.

[Agnese]

Hi Dusty,

You should really follow up on the ANA test, if you must, with another doctor. You could have a condition that will progressively get worse if it's ignored.  It will also be harder to treat and possibly more expensive.

http://arthritis.about.com/od/diagnostic/a/ana.htm

GL.
Agnese

[opus88]

to Txsilver and dustybrown
sometimes I think maybe we have to many specialties that overlap too many conditions...we get all these referrals and each 'specialty' disagrees with the other...leaves us needing the medical degree!
Dusty..yes DO get another opinion and I don't think Rheumatology is the right route to go. I would suggest a Neurologist at least for the back/sciatica/nerve damage.
You need someone to look beyond FMS...not saying that you don't have this as well but there are many other things going on with you, perhaps also an Internist?
Txsilver..You are so right...too many are dx'd with FMS too easily and it begins to lack credibility when handed out like popcorn..than the true sufferers begin to get labelled and than is very unfortunate for them. As my PMP told me their pain is widespread not localized as in my condition. they really need to come up with a better formula than a point and poke approach...my first rheumy 10 yrs ago asked me abt 10 questions abt pain and sleep problems than stood me up and poked 18 spots on my body...many of which hurt sure but NOT SEVERELY..than labeled me FM,.she completely neglected the pain I came to her abt in the first place which was more back/leg ....soon as they hear pain and sleep issues together a light goes on in their heads and awwww must be FM.
forgive my ranting...I get so disgusted with doctors sometimes its a raw subject with me! there are many very good ones out there with very good reps, but there are a few who were in the bottom percentile of the class too.
Oh got carried away there..my medications as you have asked for:
20 mg oxycontin..which does take the edge off the back pain so I do NOT wish to increase as ordered.
200mg celebrex for inflamation
10-20 mg flexeril for muscle relaxant
2700 mg gabapentin for sciatica/neuropathy...this was raised to this dose 3 weeks ago, I had been on 1800 mg for previous 5 years....it helped alot for the previous 5 years, however even at this higher dose it has lost its effectiveness, will trial for abit longer than I may as well taper back down, I don't like to take any more meds than are absolutely necessary, that said I sure don't want to live in misery either and will willingly take even narcotics IF they work...
Thank God for you that your tests for scleraderma did eventually come up negative!!
What all meds do you use and are they effective?
In my own humble opinion we sometimes learn more of the effectiveness of medications for users vs. doctors....also by trial and error too of course.
you both have a good day and good luck in your quest dusty

[dustybrown]

Oh I have all of those other conditions too, the sciatica, DDD, degenerative facet disease, osteoarthritis in my back and shoulder, nerve damage in my back and scoliosis, but I have still been labeled by my current Rheumatologist as having Fibromyalgia. As I mentioned before I have the positive ANA screen too. I am not sure why she hasn't looked into any other arthritic conditions that could be causing my body to deteriorate???

I just saw an endocrinologist for the 2nd time. He claims their is nothing wrong with me. According to one of the tests it does look like I've got a bit of an adrenal problem, but I guess I am not the doctor, so oh well, I guess I need to drop that one. He suggested I find a new Rheumatologist for a second opinion though. He thought what's happening to my body is more rheumatological than anything. I guess now I am back to square one.  

[txsilver]

Shift work sleep disorder!  I have that too.  My "when to sleep" and "when to wake" are completely broken from all the time I spend on call.  I really do love my career, though, so I use Ambien when I am not on call to get back on schedule.  
I have DDD, stenosis, minor scoliosis too.  Nevermind the arthritis!  Opus, what have you tried besides oxycontin to cope with the pain?  
I do believe FMS is real and a horribly debilitating condition, but with it becoming such a convenient dumping ground of diagnosis, it detracts the credibility of those truly suffering it.  We have to fight to be certain we are accurately diagnosed for the good of everyone.  Hang in there!

[opus88]

dusty and tx...
I too was dx'd with FM 12 yrs ago and it wasn't until I had an MRI 21/2 yrs ago that the true culpret of my back pain was found...again same as you DDD and facet osteo, the sleep problems at the time were more caused by the shift work I was doing and not due to FM.
Tx is right FM is a disease of exclusion and sometimes just an easy dx for doctors when they don't know any different and don't refer you to specialist.
Are you in alot of pain? if so I'm interested to know what ur using.
I'm currently on 20mg of oxycontin...it gives me some relief but certainly not totally.
I get severe siciatic which is the result of DDD and nerve impingement.
Good luck with you're other issues I hope you get some answers, its always like digging for gold isn't it.

[txsilver]

My story is similar to yours in many ways.  I spent over a year with a dx of FMS and depression.  Finally I got to a doctor who would run the tests needed and thoroughly explore my symptoms and history.  I was dx'd with RA and many other things.  Because of my expereince and what you have written, I can emphatically state that you need to see another doctor.  If your insurance is an issue, complain loudly until they let you see another doctor.  With your family history, a positive ANA and all of your symptoms, to not explore things further and dx you with FMS is laziness on the part of the doc.  FMS is a diagnosis of exclusion.  It should never be the dx until everything else is ruled out.  
It is possible to be negative for RA and SED and still have something AI going on.  Blood work provides docs indicators, but they do not provide a dx.  Example, I am high positive for the antibodies for scleraderma but I do not have it.  My test result is a fluke.  
Please keep us posted on how you are doing and we will be here to support you as you go through this.