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02/03/2012 01:47 PM

Hello

Kerrie1989
Kerrie1989  
Posts: 104
Member

Hello everyone. I am newly diagnosed with Hypermobility syndrome. I've experienced moderate to severe pain everyday of my life for the last 2 and a half years. My symptoms kicked into overdrive when I was pregnant with my now 2 year old son. Then they were just kinda passed off as sciatic nerve pain since it was mainly in my back. Shortly after his first birthday it became nearly every joint in my body my fingers, wrists, ankles, knees, back, and even my hips.

I have had the worst luck with doctors. I was passed around to so many specialists that I lost count. Most treated me as a drug seeker making up my symptoms despite my pleas that I would take anything and wasn't looking for narcotics. After waiting 7 months for an appointment with a Rhumatologist, I was in the room no more than 15 minutes before he knew what was wrong. I have been diagnosed with Joint hypermobility syndrome and Fibromyalgia. My blood work hasn't come back yet so I don't know if I have anything more serious that is associate with hypermobility.

I've only been on Neurotin for two weeks but still no relief from the pain and from what I read I don't think I can expect any.

I'm a little depressed that this isn't something that's going to go away but it feels good knowing what is wrong and that it isn't in my head. Another downside though is I've been trying to lose weight I've gained since pain has decreased my activity level. My doctor told me the exercises I've been doing could make things worse. I've been trying to focus on strength training with a stability ball. Does anyone know of any other exercises that would be on the safer side? (I slipped on the stability ball the other day and injured my wrist.)

So that's my story. I'd be very interested in seeing others and getting to know other people with this disorder.

Kerrie

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02/08/2012 06:30 PM
SSLMD
Posts: 1023
Member

Hypermobility is not widely appreciated in the US. It seems much better established in the United Kingdom. You may need to train you own GP. In any case, with any chronic illness, it is wise to become the world's expert on your own condition.

02/15/2012 03:49 PM
Kerrie1989
Kerrie1989  
Posts: 104
Member

I agree. I've been doing as much research as I can. My rhumatologist only said I had hypermobility and grazed the basics. Now I am learning that many doctors consider hypermobility and Ehlers-Danlos III to be the same thing. I plan on asking about this when I see him next on the 22nd. I know he ran some blood tests and seemed very interested in a spider like brown black spider bruise looking thing on my leg that I've had for a long time. I'm not sure why and not sure what the blood tests were about either. I also now know that having fibromyagia can aggravate the pain symptoms as well.

02/18/2012 05:02 PM
SSLMD
Posts: 1023
Member

It may be that EDS III that hypermobility are not the same, merely that we have no way of telling them apart. My own theory, which has no standing at all, is that EDS III itself is a collection of several different genetic conditions.

02/18/2012 07:15 PM
hatbox121
hatbox121  
Posts: 11022
VIP Member

Hey there. A lot of drs are considering EDS and HMS the same thing, just different "levels" of it. HMS being milder. However, since they haven't figured out the gene for either it's hard to be for absolute sure. Dr. Tinkle, one of the leading EDS drs in the US, considers them to be the same. HEDS does have certain symptoms/signs though that I'm not certain sits on the HMS criteria(like high palete, crowded teeth, etc). If you don't find answers with the rheumy, consider speaking with a genetics doc.

02/19/2012 10:43 AM
SSLMD
Posts: 1023
Member

High or narrow palate, conjoined earlobes, and bluish sclerae are non-specific signs of a variety of collagen disorders. It's fun to look for them when you are out in public, then see if you can spot genu recurvatum and hyperextensable fingers or elbows.

03/25/2012 01:09 PM
Kerrie1989
Kerrie1989  
Posts: 104
Member

It's definitely interesting to discover how many people don't have hyperextensable fingers like I do. I had no clue that I was doing something that others couldn't do.
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