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Lainy

Fibromyalsia -OR- Connective Tissue Disorder

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I've been limping through a ton of joint pain for the past couple months and finally got in to see my PCP about it. We ruled out anything rheumatological or inflammatory and now we're looking at the possibility of fibromyalgia or a connective tissue disorder to explain the pain. For those with either, what is your experience? How did you get diagnosed? How did your doctor know which one to pursue? What's helped you most?

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How did your PCP rule out Rheumatological diseases? Do they know how to **** sero-negative lupus and sero-negative Rheumatoid arthritis? Did they just see your bloodwork wasn't positive so you don't have it?

As someone who was sero-negative RA for years, undiagnosed, undertreated and consequently has lung damage, I will tell you that no one but a board certified Rheumatologist should make that assessment. And to be honest, it may take a couple before you find one that can treat these nebulous autoimmune diseases. Some doctors don't even believe in the concept of sero-negative rheumatological diseases. A lot of research is being done in this area. There is also something called Mixed Connective Tissue Disease and Undifferentiated Connective Tissue Disease. Both need to be diagnosed and treated by a board certified Rheumatologist and some doctors dismiss them as not real, but they do irreversible damage to your body.

I don't mean to sound harsh, but it really bothers me when PCPs try to diagnose and treat Connective Tissue Diseases. It is such a complex area of medicine that is evolving every day. All it tends to do is deny patients pain relieving treatment that ultimately results in a decreased quality of life now, and permanent disability in the future.

I hope you find a doctor that can help you and you find answers.

Kim

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A rheumatologist is who can diagnosis fibromyalgia and/or connective disease disease. Fibromyalgia is usually tested for by pressing the trigger spots. There are 22 of them I think and if you have at least 10 then they diagnosis you. Finding a good rheumatologist can be hard though. My mom had RA for years and they kept saying she didn't. Even though she was sero-positive. With severe symptoms. Personally I think she has other things going on as well, but she is having a hard time finding a good doctor where she moved. 

Personally I have had joint pain since I was a teenager and the few doctors I have mentioned it to just threw NSAIDs at me. I get the most relief from a good chiropractor. I am thinking it actually may have something to do with my underlying cause for my POTS but I am showing nothing in my blood work. I have plans to see a new set of doctors in a nearby city to investigate underlying causes before the end of the year. 

I hope you get some relief soon.

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