I saw my doctor today due to a burning pain in my stomach and also acidy reflux. He thinks that I'm starting to get an ulcar in my stomach :-/ any who I complained to him about the problems I'm having with my rhuematologist and my doc actually sat there and listened to me. He did a few clinical tests and came to the conclusion that I am showing all the signs of having fibromyalgia. I was gobsmacked as only last week I was sitting in the rhuemys office and asked if he could look at fibromyalgia been part of the problem only to be cut off and told "we are not heading down that path, we only diagnose people with fibromyalgia when they dont have the HLA-b27 gene. And since We have diagnosed u with AS there's no point looking" I didn't know what to think as theres alot of people on this forum that suffer AS and fibromyalgia. But I'm confused how can I tell on days when the AS is flaring or if it's just fibromyalgia? And how do I cope with the fatigue with a one year old wanting all my attention?? I'm just lost I don't know who to talk to as no one I know is going through this.

In some ways your rheumatologist is probably a lot better than many in that he wants to deal with the AS as the primary disorder. My understanding of secondary fibromyalgia (when it is the result of or goes alongside another rheumatic condition) is that it should be less of a problem if the primary disorder is treated well. I think if I was in your shoes I'd concentrate on using the rheumy for that (the AS), but if fatigue etc was making things too hard, then use your GP to additionally prescribe one or more of the drugs that are more likely to be used for fibromyalgia, though I don't know of any that work amazingly well for it. Fatigue is a big part of AS too, as are the tender pressure points (over entheses) so it could well all be AS anyway, and difficult as AS is, the treatment options are a lot clearer than for fibro.

I have posted a lot on here about my Fibro Sarah, as other's have. I will send you a PM. Just look up at the top of this page and beside my stuff you will see a flashing flag, click on it and it will take you to my private message.

Hi, SaRaH_27:


This is the SMARTEST GUY IN THE ROOM:



FORGET fibromyalgia!

TREAT AS (or it will MIS-treat You).

NSAIDs caused ulcers for me (and MYRIAD -itises). You are not still taking these terrible and dangerous drugs...are You?

HEALTH,
John

while you could have both, i tend to agree with cemc.

i do not have fibro, yet i definitely have enthesitis; that was one of my biggest problems until i started the LDN.

i also have extreme fatigue / tiredness when i'm flaring. i know its the spondy because 1) its only when i flare and 2) prednisone gave me boundless energy within the same day of starting it. so while fibro definitely causes fatigue so does autoimmune / autoinflammatory diseases as well.

what i did regarding fibro, since it was always brought up by each new doctor, but then also ruled out, til one rheumy who misdx'ed it, was to read a lot about fibro. i just didn't see myself in the dx, didn't relate to the people on the fibro forums, it just didn't fit for me. i think when we read its either "no, i can't relate." or "OMG, that's me!" (that second response was me here)

if after reading all you can, you do think you also have fibro, there are drugs that can help. can't hurt to give them a try. if they don't work or the side effects are bad, they can be stopped. cymbalta, lyrica, etc. even without fibro, they had me try lyrica for the nerve pain due to the cervical bone spurs pressing on the nerves; it gave me migraines at such a low dose, i couldn't take enough to see if it would have worked against the nerve pain.

yes, when different doctors want to do different things, it makes me feel like a ping pong ball being batted back and forth. but give it a few days and you'll know which person you want to work with most closely.....maybe. things do get clearer with time, and a lot less overwhelming.

Wow Dragonslayer, forget Fibromyalgia! Really? Why can't you have both?

Sarah,

I agree with John (Dragonslayer) - your rheumatologist is the smartest guy in the room.

I don't know why a family physician would feel that your AS diagnosis does not adequately explain all of your pain, and then feel the need to diagnose you with an additional 'syndrome'.

I am sure that my rheumatologist would have responded exactly as yours did. I have quizzed mine about the confusing fibro diagnoses that I read of so many women with AS being tagged with, and he just shakes his head in dismay.

Pain and fatigue, by the way, are both major symptoms of AS. Fatigue is a tough one to cope with for sure. All I can offer is that if you can get the AS disease activity under better control, then that should help with both pain and fatigue.