odd diagnosis

[sofa weight]

I have had 2 rheumatologists diagnose me with fibromyalgia, and I have a question for any of you who actually have fibromyalgia. do you have pain in areas that are not where your muscles connect to your bones? I guess that would be joints. I have chronic tendinopathy in both shoulders and both elbows and sacroiliitis. The sacroiliitis just makes it so that I can't straighten up once I have been in a bent bent position. It also causes me a lot of pain with walking. However, I don't have pain in tender points unless that joint is currently misbehaving. prednisone makes me feel tons better, but it makes my tendons even weaker. So, I had to go off of them and then I coudln't even use my hands and I could barely walk. Then I was put on methotrexate and then between 4-6 weeks, my hands were fine and so were my ankles and feet. between going off of prednisone and going on methotrexate, I got trigger finger in a bunch of fingers and had to have surgery to fix one of them. The other trigger fingers resolved with the methotrexate and celebrex. However, my shoulders and elbows still don't move very well. I don't have any problems at all with sleeping, except when I am awakened with pain and need to move my joints into different positions. Then I fall right back to sleep.
Now, after having been on methotrexate for a few months, my hands are still fine and my feet are still fine, but my shoulders and elbows still get very painful if I use them to any kind of a degree. Just doing laundry will cause me to have severe pain and stiffness in my elbows and shoulders for many days afterwards. Thesacroiliitis acts up whenever it wants to, but I always have a certain degree of pain and stiffness in my SI joint. In addition to the joints, I have a problem with the nerve in my leg and that causes more pain and problems than anything, but isn't as limiting as not being able to use my arms.
I don't have any pain at all in any areas other than my leg (like constant sciatica pain) and my shoulders and elbows and those only hurt if I move them or lay on them. And aside from the sciatic like pain in my leg, I dn't have any pain in any areas that are not joints.
I do have peripheral neuropathy which results in burning in my toes and some loss of sensation in my hands and feet.

I am wondering, does what I have described sound like what any of you have experienced with fibromyalgia? Does fibromyalgia hurt without you moving your joints? I don't think that what I have is fibromyalgia, but I can't really know unless I know what fibromyalgia feels like.
Does methotrexate or prednisone make fibromyalgia better? From whatI have read, I haven't found anything that says that either of those provide significant relief. But, I don't know for sure.

[WarKitten2008]

Hi Sofa

Sorry it take so long to write back but so busy here.
I would love to see the article about associations between eds and ms. I will do a search on it and see if I can find it.

Yes you are right, lyrica and nurontin for fibro, but 15 years ago
when I first got dx's it was all anti imflammatories. I dont even
think lyrica or neurontin was out there then.

funny thing tho, when I was dx's with fibro back then, I had terrible
tenndonitis in wrists and elbows almost 2 years of it. so I guess they
felt justified with anti- immflamatories.  

I was on a smaller dose of lyrica several months ago and it did help
abit with tingling burning and itching sensations, but it did not
help at all with the tendon pain.  I may be going back on it at my
MS docs request and bummping up the doses.

I hate the 40.00 monthly co pay for it. as I have other meds to pay
for as well.
I do have a great orthopedic surgon that did my knee surgery, torn
minuscus.  they were trying very hard to figure out what was wrong
in hip and joints did angiogram/MRI ect and did find imflamation in
tendon in hip, and also bursitus they did cortisone shots ect but
really felt that I should be check further by the rumey and the MS
doc, also told me they would do my cortisone shots ect if I wanted
them too.  
I was going to get a new rumey and just found out that my med ins
only have three in the network. OMG!!!  the other two are over an
hour away form me one way. And the thrid one is the one Im using.

Yeeeeeesh.     So crazy, I will just have to find a creative way to
deal with this.
                                     Take Care   Warkitten2008

[sofa weight]

I'm glad you checked into it with another doctor.
I actually was just cheking in here because I found a few articles talking abou associations between eds and ms.
as for being bendy. I only thought that I was bendy because I compared myself with my rubbery pretzel sister. I actually am quite bendy and stretchy; much more so than is normal, just not as much as my sister. :)
what all kind sof drugs for fibro were making you have an ulcer? I thought that actual fibro didn't respond much to anti inflammatories.
I take neurontin (because my copay for lyrica is too expensive). It helps with my neuropathy pain. Those are supposed to be the main drugs for fibro, I thought.
Perhaps an orthopedic doctor would be a good person to see for your tendons if they really are inflamed and the problem with them shows up on MRI.

[WarKitten2008]

Hi, Thank you so much for the reply.   I saw my MS specialist yesterday, and he
did an exam ect...  What ever is going on in the tendons, he believes it is more due
to a rumeotology issue. He did say he wasnt to sure he thought it was due to the
fibro and is writting to my ruemy doc about some further work up.  

lol I can see the ruemy getting itchy about that one. So I will go back to the ruemy
and persist.

I have been checking my joints to see if they are bendy, but like you, they seem
more stiff, like trying to move rock into a different posistion, not to mention the
tendon pain that goes along with it.
once again thanks for the post and reply, I sure hope you will find relief.
PS  I do understand about your feelings on past docs sending you to pt without
knowing what was really wrong, its the same thing they do with meds now days
they just give you meds and they dont even know what they are treatting you for.

pretty scary stuff.  This is part of the reason, im not so compliant with the ruemy
giving me meds, as I tend to get alot of side affects from anti imflamatory meds.
If I  could be checked further and have a solid dx on somthing then I wouldnt
have a problem taking the meds for it.
Other than that they just ruined my stomach with ulcers years ago when they
dx the fibro.   Grrrrr

                                           Take care         Warkitten

[sofa weight]

I went for 8 years with a dr appointment on average every other week trying to get someone to figure out what was wrong with me so that I get perhaps get back to an almost normal level of functioning. During that whole time, aside from when I was getting tests run, I never had anyone check anyting on me in the office other than reflexes or the swelling in my fingers.
as Dnmh said, I actually did have a rheumatologist who I just saw for a quick second opinion, tell me that if they have a patient come in with pain and if they don't see anyting wrong on the blood tests, they usually diagnose the person with fibromyalgia.
I was only diagnosed after my PCP sent me to the cleveland clinic to get checked out. That is where I was diagnosed. Those doctor appointments were so long that I wanted to call timeout to try to get a nap a few times. I'd never had a 2 hours office visit before. I don't know where you live, but i'd recommend going there if you want to get checked out for real. It's a 3 hours trip for me each way, so it's no quick trip, but at least I know that i'll get more than a 5 minute office visit. I also didn't have to tell the dr on subsequent visits what happened in the previous visit.
I sure wish that I had known years ago what was going on because then I probably wouldn't have gotten so many injuries from the physical therapy that my previous PCP kept sending me to in order to make it seem like I was getting some treatment. I also wouldn't have done so many other things with the expecation that my joints would heal themselves up. Even my orthopedic doctor agreed that physical therapy wouldn't do me any good because my tendons were degenerating. Now my tendons are just garbage. I'm in PT again, but it is aquatic PT and also now some non weight bearing kinds of isometric stabilizing PT in hopes that I can get some stability in my joints and my back and will get less nerve compression pain.
As for whether you might have ehlers danlos, I think that you can maybe get some idea of whether you have it or not by seeing how bendy or stretchy you are. I never knew that I was bendy or stretchy because my sister is so much more bendy and stretchy than I am, I thought I was overly stiff. Apparently, I'm not stiff at all, but abnormally bendy. that's the problem with conditions that are autosomal dominant (especially if most of the family happens to have it.) How can you tell what is normal if everyone is abnormal. If your sibling can pull their skin away from their arm like 4-5 inches away, then you think that the 2 inches that your skin pulls away means your skin is really tight. If your sibling can bend up like a pretzel and do the splits and pull their legs up in the air off of the ground, then if you can bend up like a pretzel, but cannot do the splits like that, you think that you aren't bendy. I have 2 sisters and we all have it. The only person in my family who doesn't have it is my mother.
Long ago in gym class and then later when working out with friends, I wondered why others were doing so much stretching but not getting very far when I could just sort of flop around without trying and bend as far as the floor would let me.
But, if you want to maybe see if it is possible that you have hypermobility or something, there are plenty of sites that talk about the criteria n such. I can't overextend my elbows anymore because of so much damage to my tendons and so much pain when I move my elbows at all, but I meet all of the other criteria. Then, if you think it is a possibility, you can always ask your doctor. I think that often times doctors just don't think it is likely that a person would have it so they don't even think about it as a possiblity. I am trying to not be mad at my prior doctors by using that rationale. I'm still not very happy that it took 8 years and at least half a million dollars of medical bills before finding out why my tendons and ligaments are garbage.
Have you asked about joint or tendon pain in MS the discussions?

[WarKitten2008]

Hi Sofa, Nice to meet you, But Im sorry to hear what you are going threw. I do see
you have a dx at this point and I sure hope you can get some proper treatment now.

I write this to you, as I can completley understand your pain. I have been dealing
with what sounds like the very same symptoms as you have described above, its
sooo awful. Its been going on almost 2 years now.
I have a horrible rumey.

I was dx's eons ago with fibro. then 2 years ago was dx's with Multiple sclerosis.
I never put much stock in the fibro dx either.
Any way  the rumey keeps telling me the joint pain, tendonitis is from my fibro,
on my last appt. they pressed on my tendon and it hurt like heck. and he said
well thats your fibro.  and maybe some due to MS.

Grrrrr,  I dont think so, lol anyone who has tendonitis if you press on the tendon
while its imflamed is going to tell ya that hurts like heck. lol  OH and like you
I dont have the trigger points either, after they pressed the tendon, they tried some
trigger points and I didnt feel a thing, I just wanted to spit that right in their face,
but said nothing instead.

The rumey wont take the fibro dx away even knowing about the MS.

Like you, I have not just the tendonitis in the elbow, but both hips both elbow,and
left knee is acting up and fingers on right hand.
Also dealing with bursitius in both of the out sides of my hips.  Elbows getting
stuck in posistion, and left hip. its horrible,
The rumey will not test further, once he heard fibro, then MS I guess he is just
leaving me for dead.
I know I have to get a new ruemy, I just dont know what to tell the new one Im so
afraid that once they hear my Dx's they wont look further.
Now you are the second person (another on the MS form has this too) I have come across that has all these joint problems
the same as myself, but you have gotten an actual dx for yours.
I was glad to see your post on this, I would sure love to know how to get a rumey
to give me a full work up as Im not convinced on the fibro. I do have the MS for sure
but it dosnt mean, I couldnt have ehlers danlos or somthing other that fibro.
Any pointers on how to get my rumey to start testing, or how to get a new ruemy
to start testing.  I just want to get out of this pain.
Thanks again for posting and hope your on your way to some sort of recovery.
                                                    Warkitten

[sofa weight]

thanks. I should have updated this posting. I got my 11th opinion, and the latest diagnosis, which I'm pretty sure is correct is ehlers danlos hypermobile type. reading through what all is involved with it pretty much has explained my whole lifetime of problems. perhaps I should have told my previous doctors about my joints going out in elementary school and high school and my 2 frozen shoulders from jr high. How was I to know those things would be relevant? I guess, I could explain my exression of the condition as being fibromyalgia where it all shows up on mri and it sometimes requires corrective surgery. ;) However, I still don't have muscle pain. I just have tendonitis, tenosynovitis, and bursitis all over that will not heal up.  (well, not all over, just in most of my joints)
My sister has the same condition but she doesn't have as much pain as I do.She was other, probably equally debilitating problems from the condition. It's autosomal dominant, so that is why I am pretty sure that this diagnosis is the correct one.

[Dnmh]

I don't have fibro, but maybe someone else here can answer that. My understanding though, is that if the doctor can't find an answer - they slap the old fibro diagnosis on it, which does nothing for those that actually have it! You may want to consider getting yet another opinion, and keep looking for answers until you do get a firm diagnosis!