View Single Post
Old 01-10-2016, 04:25 PM
RSD ME RSD ME is offline
Senior Member
 
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
Default

i am not a dr but if i were you i would find another pm dr and get a second opinion from a neurologist. my pm dr is my main dr because he prescribes my pain meds to help manage my rsd pain. some drs don't know alot about rsd so they either tell you to see someone else or give you the wrong info about rsd like by saying rsd can't spread and that more nerve blocks would have helped and that getting a scs (spinal cord stimulator) is the next option for you. from my experience with rsd (going on five years this february and from what my pm dr has told me and from learning from others on this great forum, i do know that rsd can spread, that nerveblocks don't always help and that a spinal cord stimulator is not the only option left. there are pain medications and meds like gabapentin that can help manage rsd pain that a good pm dr can prescribe to you.

i was offered the scs but after researching it, talking to mulitiple drs and listening to peoples experiences on this forum, i decided not to get it (at least for now). i also have scoliosis so messing with my spine because of that scares me too. i prefer the meds instead. if there comes a time that the meds don't help anymore i may consider the scs in the future (at least the five day trial one). but the thought of having major surgery near my spine scares the heck out of me, plus the chance of infection scare me and the other risks involved like more rsd spread, batteries dying, twisted leads and the pain it causes to have this surgery. but it is a very personal decision. you have to decide on your own and make the best informed decision you can. also rsd is a recognized disability under SSDI and if i were you i would research that, print out info about it and also about rsd which you can find on this forum and online and give it to all of you drs, family and friends. then i would find a new pm dr and give them that info too and see if they can write you a letter (if you feel you can't work because of your constant rsd pain and spread and then maybe try applying for SSDI if you want to.

as for the eyes and blurry vision and dryness, rsd can be the reason for that as well as meds like gabapentin. rsd also affects the teeth by attacking the bones making them more brittle and causing frequent infections. rsd can spread to any part of the body externally and internally too (like the organs and heart). it can also go into remission sometimes when caught early on and with younger people. but everyone who has may have different symptoms and needs different ways to help manage the pain. there are many other treatments for rsd like ketamine, accupunture (thought that cause spread for me), hbot, calmare and there are also trail tests being done like for neridrondate (sp?). i know it's difficult to have to keep looking for new drs to help you. being in constant pain with rsd is hard enough to deal with, but unfortunately we have to be our own advocate and do our research and find the right drs. i have some drs who didn't understand rsd, but there are alot of good drs out there who do understand rsd and can help you. just keep trying and know that you are not alone. the people on this forum offer great support and kindness. sending comforting thoughts your way.

p.s. and don't ever let a dr tell you its all in your head because that isn't true either. rsd has external as well as internal symptoms i.e. shiny skin, sweating, excessive hair growth, muscle atrophy, bone thinning, swelling, burning pain, cold rsd, rapid heartbeat, and a weakened immune system which causes more infections and health problems because of rsd. also constant horrible pain that is listed on the mcgill pain index as one of the most painful chronic illnesses next to terminal cancer.
__________________
RSD ME
.
RSD ME is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
CRPSsongbird (01-11-2016), IamJenn (01-11-2016), Littlepaw (01-11-2016), PurpleFoot721 (01-10-2016)