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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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Junior Member
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Hi im flora99 --a new member.
I have had rsd since autumn 2002. I need to talk with other members to get their feedback . Its pretty lonely here on the west coast of scotland .no one here has heard of rsd That included most of the doctors who have never seen a case in our area.! Its taken me 10 years to get to a good place.i count myself as one of the lucky ones.i got diagnosed within 5 months of developing rsd in my right arm From tennis elbow and tendonitous. After 2nerve blocks the pain dropped dramatically and i got almost full range of movement back after physio.i managed to work through my depression without any drug therapy once the pain levels had dropped. 2yrs later i had a gyneacological op and had a canula put in my good arm.,which became swollen at the elbow and v painfull.The doctors would not give me another nerve block as said it was too dangerous.i narrowly missed being paralised again as i could not take antinflamitories as they had ulcerated my stomach.This flare up took months to subside.,i went to hell and back. In 2005 i needed an endoscopy with a sedation and would not let them put a canula in my arms ,so they put one in my foot which was ok with no flare up of RSD but i had no symptoms in my feet then,now i do (painfully cold feet and knees ) I urgently need another endoscopy to investigate my gastric problems and throat since i have had GORD for over 10 years now and the PPI is not controlling my gastric reflux etc.i cant face the proceedure and biopsey / and possible polypectomy without a sedation my doc wants to also take blood as i have not had blood taken since ive had rsd. because i feared a flareup. Has anyone out there had a flareup after blood was taken? Last time i had my endoscopy i was not taking amitripilyn will that protect me from a flare up?,i dont know if the low dose im on now will protect me? What do you think? im on a low dose as im trying to get as low as possible as its eroding my stomach and blurring my vision etc!!so if i need to up it again it will be hell. I dont know what to do wether i should have the endoscopy and sedation. If they find cancer i know my body would not tolerate chemo or radio therapy, So could have to face cancer and an RSD flareup. On a positive note,if they find early barretts oesophagus they can prevent it developing if caught early. What should i do?? Im in remission with my RSD most of the time and have a good quality of life. I fear the dragon on my shoulder will bite me again if let them do the tests. The pressure is unbearable. Ive had councelling and my councellor says i need more information before i decide.its so hard to get information.The doctors all think im over reacting My fears are real.i fear the RSD as much as the possibility of cancer. What should i do? Please if you have any relavent info write to me . Big gentle hug to all of you out there wrestling with the firey dragon RSD. Thanks for reading my first post. Flora99 |
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