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Do I have some kind of a rare disorder?

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Old 10-19-2010, 02:52 AM   #1
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Madeofglass HB User
Do I have some kind of a rare disorder?

I was diagnosed with fibromyalgia 3 years back at age 19. I still can't help wondering if I actually have something else... first of all, the standard fibro drugs like Lyrica, Elavil, Cymbalta etc don't work for me. Second of all, I have heart issues... such as heart palpitations and irregular heartbeat.. Sometimes I feel like my joints are loose and they make weird clicking sounds, and doctors seem to have different opinions regarding whether I'm hypermobile or not... One physiatrist claimed that I was, but only slightly, then one regular doctor told me that I was "extremely hypermobile"... whereas the second physiatrist I saw said that there's no hypermobility whatsoever. I don't know what to believe, cause I'm also very stiff.

Don't usually people in their 40s or 50s get fibromyalgia? And shouldn't there be some kind of family history? I still haven't even figured out what it means to have fibromyalgia.. to me it's such a fake diagnosis..

If anyone has any ideas about what I could have, please contact me..

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Old 10-27-2010, 03:42 PM   #2
Join Date: Oct 2010
Location: ON, Canada
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dlahaie HB User
Re: Do I have some kind of a rare disorder?

Hello. I have had fibromyalgia, and I can assure you it's not a fake diagnosis. There are plenty of websites out there in which to research this terrible condition. No one knows for certain what causes it, but there are some theories out there. One is that FM (Fibromyalgia) is directly linked to P.T.S.D. (Post Traumatic Stress Disorder). I also have P.T.S.D.
I have had FM since my mid-twenties and I'm 43 years old now. It has only gotten progressively worse for me. I do know that it does run in families, but it is only a rule of thumb. There's always the exception to the rule, and this may be your case. Or perhaps you have family members who also suffer/suffered from FM but just were not diagnosed with it. It has only recently become an accepted and acknowledged condition/illness amongst most in the medical field.
I am wondering what, if anything, your doctor has given you for pain. How much pain are you in?
I'm new to this site, and this is my very first post. I read yours and thought I should respond as I do suffer from this cursed illness (FM). I deal with so much pain, as so many at this site do. The one great thing about reading about the others who suffer here, is the fact that I know I am NOT alone! I am very isolated in "real life", being on disability, and because of my lifestyle (dealing with so much pain all the time, I am aways at home alone).
I just wanted to let you know a bit of what I have experienced, and to let you know you are not alone either. I wish you all the best, and will be thinking about you. Take care!


Old 10-27-2010, 04:06 PM   #3
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Madeofglass HB User
Re: Do I have some kind of a rare disorder?

My father has similar symptoms, but then again this seems to be more of a women's issue. I've also read about Chronic Fatigue Syndrome and I don't really see the difference between these two conditions. Like how can you know for sure that it's FM and not CFS when there's no blood test out there? And if you're hypermobile, why can't it be Ehlers-Danlos? Or if you experience dry eyes and mouth, Sjogren's? Perhaps it's MS? I'm just saying that this diagnosis gives a lot of room for all kinds of speculations. It's really hard to get any kind of strong pain meds cause they're terrified that I'll get addicted. So all I can do is stretch, move around, rest, and perhaps take something mild in large doses and pray that eventually the pain will ease up.

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