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Aug 21, 2015 1:31 PM

Update. Finally after begging for a year my new pcp got me set up with rhematoid doc. I seen yesterday and thank god cause night before was one of worst nights ever. My entire body flared up to point I was unable to move or walk without gut wrenching pain. Head to toe. Only one other time that has happened which was few months ago and I ended up in er. So specialist said he thinks could be either fibromyalgia or possibly psoriasic arthritis. Did more blood work and ordered xrays of hands. Every single day the pain is in my hands. Diff sports throughout the day and by evening time it's unbearable. Huge symptom also have is unbelievable fatigue and I think chronic fatigue syndrome goes hand in hand with fibromyalgia? I was told to follow up in Teo weeks he gave me literature on fibromyalgia and wants me to indicate when I see him next if this sounds like what I have he also said to follow up with my primary care doctor regarding treating the pain which I thought was interesting but I guess the specialist cannot treat me and so is a hundred percent certain what I have. My question is what do others on the sites that have these conditions treated with for pain? I've read that dr tend not to treat with pain meds which blows my mind because only way I can function at all is with hydros from my pcp. Alot is said online and scared me reading thst fibromyalgia has such a negative stigma. Like its "not a real condition" doesn't help that I work in disability and fmla and in thst world no one I work with takes fibro seriously. I wouldn't feel comfortable telling anyone I work with that I may have this because I will be labeled. It's horrible to already be dealing with so much then on top to be treated like a joke in medical community, like a drug seeker, then also in general because the stigma. Anyone else deal with this? What meds have worked/not worked? Thanks to you all in this community everytime I post I feel great knowing not alone.

Aug 21, 2015 5:32 PM

Your definitely not alone kat. Since your new to the specialist he will try to find ways to treat your pain without pain medications since you are already getting them from your PC. Its good hes running tests for other things. I was originally sent to a rheumatologist because the only thing all the other docs could come up with was fibro. Best thing that happened to me because it turned out that I had Rheumatoid Arthritis. I had been tested by my PC via rheumatoid factor test several times always coming back negative so I had suffered quite a bit of joint damage by the time I was sent to a rheumatologist for the fibro.

Chronic fatigue from my experience does go hand in hand with fibro but it also goes hand in hand with many other diseases especially auto immune diseases. Everyone I know who have fibro including myself have issues with chronic fatigue.

Before being sent to a rheumatologist i was put several different fibro drugs but had allergic reactions to all of them so I gave up on trying them. My PC put me on a muscle relaxer that really helped my fibro pain. I didnt understand why it would help so much until i did some research and learned that this particular muscle relaxer works through the nerves and since fibro pain is closely linked with the nerves it made sense that it helped.

Being treated for the RA has really eased up the fibro to. I got really lucky getting a wonderful rheumatologist first time around. When pain goes on for long periods of time it gets to the point where its really hard to reign in. At least that has been my experience.

If you dont mind me asking kat.. your hand pain .. do your hands ever swell? Fibro doesn't cause swelling so if you get swelling and pain make sure to mention that to the specialist. Swelling can happen without it being particular obvious. Your hands and/or finger (s) would feel tight and bending them would hurt.. burning feeling .. like a finger might pop or split right open at the seems.

Also have you ever been tested for MS? Some neurological issues can cause severe hand pain.. dropping things, strength loss.

Anyway, just a couple of things to keep in mind that might be helpful determining whats causing some of your pain.

Best wishes

Aug 21, 2015 6:08 PM

Kat79, I also started with fibro, but after 2-3 years knowing something else was up, I found out this year I have hypothyroidism and sjogrens (both autoimmune diseases). For my fibro I've only been using Tylenol Arthritis or Aleve. I was on gabapentin for 2-3 months when they took me off to see if it was responsible for tremors I'm having. It wasn't and Mayo is trying to find out. I do have muscle relaxers that help with the tense cramping muscles from fibro; Parafon forte. I also have Tramadol for really bad days. But after my sjogrens diagnosis the rheumy doc put me on Plaquenil and its even helped the fibro pain.

Aug 21, 2015 10:08 PM

I'm on plaquinel too. Dr thinks I'll eventually fully developed a lupus dx but right now won't make that call. Undifferentiated Connective tissue disease and fibro and CFS are current dxs

Aug 21, 2015 10:19 PM

It's taken a long time md a dr I really respect and like to be content that my diagnoses may be wrong or change but I have meds that have help and a dr willing to try different options based on me feelin better and my systems and not a solid diagnosis.

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