View Single Post
Old 05-09-2013, 05:23 PM
alaska49 alaska49 is offline
Member
 
Join Date: May 2009
Location: Pennsylvania
Posts: 221
10 yr Member
alaska49 alaska49 is offline
Member
 
Join Date: May 2009
Location: Pennsylvania
Posts: 221
10 yr Member
Default

I know finding my mix of meds that work for me giving me a life out of a bed and wheelchair took lots of time and many doctors. I was with one doctor for 3 years who I was doing the ketemamine infusions with which those helped but he just couldnt get the right coctail for me at home to keep me out of the hospitals and wheelchair or crutches. It wasnt untill I met a doctor at a hospital closer to home who is head of pallitive care who worked with me and after a year trying meds at different doses and adding things and removing others he finally found all what Iam on now which thanks to him being understanding and listening I no longer am hospitalized every 2 weeks, I can walk now and have more of a life. I know we are all different and what works for one doesnt work for the other. i think that what make treating RSD so hard is not one person responds to the same treatments. I doubt there are anyone with RSD where they are on the exact same meds, and amounts down to a t.
This is my list its long and some doctors look at it and think my pain doctor is nuts for giving me all of it but its what works and if it means I can have more of a life I will go with it.

Morphine oral
morphine liquid I get both morphines for when I am in more pain and need the med to get in my system faster or i cant swallow the pills.

Prilosec, for stomach pain
Mexilitine its meant for skipping heart buts its also has a use with nerve pain
Meclizine for virdigo
Keppra for nerve pain
Lidoderm Patches
Ketamine nassal spray
Ketamine lossanges
Baclofen muscle relaxer
Fentanyl Patches
Valium
Reglan for my stomach
Dicyclomine for spasms in my stomach
Erythromycin its an antibiotic but its again for my stomach, my rsd in the stomach is bad and ended up with Gastropresis.
Very high doses of vitamine D as no matter how much I take Iam always very low
When I do go into flares they then hospitalize me and give me the ketamine infusions until I feel I can go home.
Like I said it took me years going through so many meds and many bad reactions to lots of them, I never new I was allergic to anything until I got sick and I had to take meds, it was hard for my doctors as many of the meds they would normally give I ended up being allergic many giving me seizures which really scared me. I even reacted to the morphine on first hand so we didnt think I could have it. after lots of reactions I just gave up trying and meds they had me down that I could have demerol but was too afraid to try but after 2 weeks crying in the hospital I though I would give it a try and finally after months of torcher that was the first med that worked. The hospital I am at now though stopped giving so my doctor had to find a new drug, and this now was 4 years after reacting to the morphine. My new doctor thought I should try it again and this time it worked and I didnt react. They just think that I reacted to the first because they gave a high dose by IV and pushed it to hard that it just put me into cardic arrest.
Hopefully other have other meds to share and how they help, just never know which will be that miracle one that drops the pain.

Sam
alaska49 is offline   Reply With QuoteReply With Quote