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so confusied

Mar 13, 2016 4:29 AM

Last year i went to see my gp as was in a lot of pain didnt know if it was to do with the 2 old i had in 05 & 06 i was told i had fibromyalgia he didnt do any test to rule and other conditins out so i dont know Where i stand with this i have just changed gp surgarys so i hope these my shed a light on my problem

Mar 13, 2016 8:31 AM

Sorry you are going through so much confusion! That certainly does not help control the pain, as I'm sure you have found out. Hopefully your new gp will shed some light on it for you! Good luck, we're all here for you. :)

Mar 13, 2016 9:24 AM

I really hope so scaryann my new guy hes with the same gp and they have done so much for him saved his life 5 times could i ask you what they did to find out about your condition if thats alright for me to ask you

Mar 13, 2016 9:51 AM

shirl70, well, it's a long story that spans 40+ years! I have been diagnosed with Ehlers-Danlos Syndrome hypermobility type. When I was a baby learning how to walk, my shoulders would dislocate anytime someone raised my arms too high or tried to pick me up by my arms. The doctors would tell my Mom that it was all in her head because by the time she could get me to the doctor my shoulder would be back where it was supped to be.

When I got older, I think around 8 years old, I fell and broke my arm, then a year later, I broke my leg. After I broke my leg, I would sprain my ankle monthly for several years. The year I turned 16 I had a psydotumor cerebra, the first six doctors told my Mom that it was "all in my head" and "she sounds like a whiner to me." It wasn't until I was sleeping 20 hours a day and started to lose my vision that a doctor listened to us.

I've always been able to do weird things with my hands. Like pulling my thumb back and touching the top side of my arm with it. Twisting my thumb around under the knuckle of my index finger. Things like that. No one ever told me it wasn't normal, after all every one in my family could do it. I could even put my foot behind my head! Again, no one ever told me it wasn't normal.

I had a heart attack at the age of 36. No one knew why, they just assumed it was because I'm overweight. It was the same thing when I started complaining of joint pain. I was told just lose weight and all your problems will disappear. I got to the point I was only eating 800 calories a day and not even every day. I got up to 305 pounds eating like this.

Then the real fun began. My cousin''s son was diagnosed with EDS 3 (Ehlers-Danlos Syndrome hypermobility type). I shared a lot of his symptoms, that I didn't even know were symptoms! Just before being diagnosed with the same thing, I reached out to shut the car door and felt something in my shoulder tear. It was so painful that I cried. Once again I went to a doctor only for him to tell me I was over reacting and that he couldn't find anything wrong.

Later that year, I was referred to a geneticist and got the diagnosis of EDS 3. A couple of months after that I was putting cinnamon rolls in the oven and dislocated my knee when it bent backwards. Two months later, I dislocated my ankle walking down the hallway.

I'm still fighting with the medical field for help, no doctors near me have even heard EDS.

I hope I didn't bore you with all this. LOL

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