Quote:
Originally Posted by flora99
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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Flora, I too had huge reflux problems. Honestly when I quit taking the anti inflammatory meds, that helped immensely. Because when my RSD started it started in my stomach as well and within a short period of time I was diabetic, from being 99.99% sedentary. I had had a number of tests done by my gastroenterologist early on , but in was about 3 years in, after my RSD had spread to my upper left. I would not allow the I've in my arms because of the RSD and the Dr. Refused to put it in my feet because of the diabetics. He asked me how I felt about not using the anesthesia and walked me through the process. He planned on doing a biopsy of the stomach lining but explained that there would be no pain felt because of the location.
So I did it. I seriously am a ganger. I will throw up if I even attempt to swallow bitter things or liquid medicine, smell bad stuff, etc. it was a little hard at first, but mind over matter, I kept calm and tried to help swallow the tube along. I also got to watch the process, see the inside of my stomach, etc. as the doctor did the endoscopy and the biopsy. The scope showed visible inflammation but the biopsy showed nothing at all. 4 years later I did another endoscopy again, with no anesthesia. Dr. wanted to make sure that he hadn't missed anything at the first scope, that might take a long time to manifest. Nothing discernible, only pain. Knowing that didn't help the pain, but it sure told us nothing else was going on.
So it is entirely possible to do the scope with no anesthesia, ask your doctor about it. It does feel like you are beginning to choke, for a split second, but your air way is in no way blocked, it's just that you feel the tube in your throat. Just relax and focus and if the dr. Let's you watch the screen with him, that is a good distraction. How many people get to see that? AND!!! The really big bonus for skipping the anesthesia is not having the anesthesia in your system, which I HATE and you get to jump off the table and leave when the scope is done, instead of laying in a recovery room for two hours and having to feel the effects of those nasty drugs in your body.
I would recommend to everyone, RSD or no RSD, diabetes, what ever, skip the anesthesia. Feels odd for those few seconds but after that it's easy and it's a gas leaving and not having to join the row of anesthesia Leiden patients required to stay and wait to be released when you can walk again, etc. You can do it!!! I will certainly cheer you on!!!
Hugs, Sylvia