Diagnosed Fibro by Rheumatologist

[luvnGod]

Hi there...

Long story short, I saw the rheumy last week and he actually cared about what was going on.  His first thought was MS but said since the MRIs were coming back basically negative we needed to look into Connective Tissue Disorders.  He talked to me a lot about Fibromyalgia and pressed on areas that should be tender.  There were several areas that were tender,  but he said I definitely wasn't a "slam dunk" case of Fibro.  He requested blood work to rule out Lupus and Sjorgens syndrome.  I was really hoping they would test for other MS mimics.  He said if blood work came back normal then it was safe to say I most likely have Fibro.

I spoke with him on Friday and he officially diagnosed me with Fibro. The only medicine I am on is Neurontin for the numbness and tingling and it has helped a bit.  He would rather me try to control the Fibro through diet, exercise, rest, avoiding stressful situations, etc.  

I still can't help but feel uneasy about chalking all of my symptoms up to Fibro.  He did say that he felt there were a couple of things going on, but until lab work and imaging proves otherwise there's really not a lot we can do.

Anyone else have an original diagnosis of Fibro and then down the road MS?

Love to all
Stacie

[luvnGod]

Thanks ladies!  I really appreciate the feedback.  I feel so uneasy about the Fibro diagnosis.  I do have several of the symptoms of Fibro, which by the way are the same symptoms of MS, but there are some that just don't fit.  I know to have a fibro diagnosis you are supposed to have 11 of 18 tender spots or trigger points and I know I didn't have 11.  I think I had maybe 5.

I'm also wondering if that's why he hasn't put me on anything like Lyrica and wants me to control it with lifestyle changes....because again, I'm not a slam dunk case of Fibro.  I woke up this morning with my left leg and left arm feeling like lead and not wanting to move.  I keep getting these shock sensations through that arm down to my fingertips.  

I am going to give this diagnosis my attention and take the rheumy's advice, and in the meantime journal what I'm experiencing so I'll be prepared for my "second opinion" appt with a new neuro.

Again thank you for your feedback.  If there's anyone who has a similar expereince with being diagnosed Fibro and you don't "fit the bill" please message me I would love to chat.

Blessings
Stacie

[SarahL2491]

I agree with drsdon't help.........Fibro is a really easy "catch all" dx that docs put people in when they don't have a place to put them.........funny how that title came up so suddenly and now half the country has it???  Makes ya think........if MS is so d hard to put a label on, why is newly found fibro so EASY to put people into.

Tread lightly with this rheumo,   But make sure he is dxing you with good back up reasons.

[sadie405]

The thing that sticks out most to me is that you said the rheumatologist REALLY CARED. I would say STAY with this doc, and give what they suggest an honest try, and when/if you have further symptoms, they'll be able to go to bat for you. Did you voice your nervousness about not testing for other MS mimics?

[drsdonthelp]

Hi Stacie,
I am probably not one to answer this at all, but I can understand why you would feel uneasy with the Fibro. dx. I am certainly NO DOCTOR, but, I have done sooooo much research because of my many issues. The thing that I have noticed is the hand out dx.

This is what I think, and I may be completely wrong, some may not agree, or some may agree, but .... when the MRI's are clear, and other bloodwork and tests are not giving solid proof of any specific disease or condition, doc's put a label on you. The label's that I have noticed are, " Fibro, Chronic Fatigue Syndrome, and ANXIETY lol, Oh yeah, TIA is also handed out even when heart doctor does a battery of tests and nothing proves it, but its a simple medication.. a blood thinner.

I know  sometimes we are willing to just take it and move on, even though we know that it just doesn't fit. Right now, my dx is Epilepsy.. I never had a seizure in my life, but my doc. says with  my abnormal EEG's and slurred speech for two weeks that my brain is getting stuck when it is misfiring and I have simple partial seizures.. Do I believe that,,, ???  Not really.. LOL

I totally get what you are going through
Pam