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Old 10-02-2013, 08:35 PM
RSD ME RSD ME is offline
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Join Date: Sep 2013
Posts: 1,500
10 yr Member
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
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Originally Posted by flora99 View Post
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
Welcome Flora,
I'm sorry you have rsd and all of these other problems.
I would get more drs to give you pros and cons. A neurologist may be able to help you with that.
Also rsdhope.org may have a group that can help.
As for flare ups after injections, I has a slight burning flare up in my neck, after a nerveblock once, but it didn't last for more than a day.
I don't let anyone touch my rsd arm though. No injections or even bloodpressure. Well, good luck with your search for the correct answer and I hope you find one soon and feel better.
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"Thanks for this!" says:
flora99 (10-03-2013)