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Reflex Sympathetic Dystrophy Syndrome - what are best meds for rsd and is pain pump good road to?
- Posted:
- 5 Aug 2009 by *bella*
- Topics:
- pain, reflex sympathetic dystrophy syndrome
Details:
Answers (5)
mpvt6 Aug 2009
Pain pumps are generally used as a last resort for a chronic pain patient or terminally ill patients. I would try morphine if you can and try and stay away from benzodiazapines like xanax, klonopin, valium ect. These drugs tend to be a very big problem when used chronically. They were never meant to be used for more than a couple weeks and somewere down the line doctors started ordering them for chronically ill patients. Anyway, enough of the benzo's, whatever works best is the way to go and you may have to try a few different opiates before you find one that works well... Good luck... Dave
Steelersf...15 Aug 2009
Hi! I have personally taken everything from Tyleol w/codeine to morphine and methadone. Also Neurontin, Amitriptaline, Noratriptaline, the whole medicine chest of pain killers. Sadly nothing has helped. Currently on the Fentanyl patch and it's not helping either. I think once the disease progresses it's very hard to take oral medication to take the edge off the pain. I have never been offered a pain pump but am having a spinal cord stimulator implanted in the near future. It's a 50/50 shot at helping but what have you got to lose? Possibly consult with your doc on this procedure. Good Luck, Christine
RsdGary
3 Sep 2009
Please check this out carefully. I used to run a RSD support group. There were people who had the SCS implanted and had to have multiple surgeries to reset the leads. There were a few who had surgeries to take it out after 3 years as it stopped working and the unit was causing them more pain. When I had an EMG done ( not recommended for RSD ) the Dr who did the test had her doubts about it working as the leads break due to the body's natural moments.
Darling Di
3 days ago
I hope you might take time to look at my profile & see the super long comment I wrote yesterday about my experience with Fentynyl patches & mainly my Spinal Cord Stimulator experience. As far as Fentynyl, I kept starting to go into pain after the 2nd day of each new patch, told my doc who said I could be a "fast metabolizer" & prescribed them for me to use 1 patch (75mcg) every 48 hours & it made all the difference in the world for awhile until sadly they just were not helping & I got to a breaking point & went into the hospital to detox off of almost all my meds except Lyrica & then started at scratch again. When you get to the top of the pain killers at max doses nothing seems to work anymore & that put me in more pain & it was a vicious cycle.
Lifewrsd3 Jul 2010
If you are one of the few that they work on ... they only work for short time.I run RSD group and most have to have them removed aftera short amount of time because they don't work or they have many ,many other problems with them. As far as meds it take more then one to handel the pain in most of the pple that I talk to ..would be glad to help I f can anwer any more questions.
29 Mar 2011
It took me 3 yrs to find the right combo (Dilaudid & Methadone, Soma, Neurontin, Cymbalta, & Amitriptyline) to keep my pain at a manageable 6/10. Also VERY aggressive pain management; Bio Feedback, Relaxation, self-hypnosis, therapy, and A LOT of FAITH.
I had an implantation of an Advanced Bionics SCS '06 and subsequently an explantation in '09. It worked well during the time my brachial nerve was healing, and actually "trained" that nerve to transmit a "non-pain" sensation to my left hand. I had the SCS explanted because 8 of the 10 leads were "compromised" and I needed multiple MRI's, CT Scans, and Nuclear Imaging for diagnosis/ruling out other conditions.
God Bless!
meyati4 Jun 2011
I found that neurontin is very good for RSD. I started with stellate gangellion shots in the neck.
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But if you are intolerant to the opioids, as I am. They cause a very increased burning. Not like I want more, you know. What is there for us for pain? As for Benzos' what do you recommend for the constant aggitation of your surroundings and the constant pain. I can not tolerate people talking and absolutely any type of vibration. So my doc thought he was doing me a favor changing Xanax to Klonipin! BTW... Thanks for all your help here.
I was told "I was rewriting the medical text books" at a famous University/Hospital, back in 1988, when a somewhat simple diagnostic test went terribly wrong. While first being hospitalized for nearly 2 months, I was given IM shots of Demerol every 4 hours, but once being sent back home, with the fear & thoughts of over-prescribing narcotics & addiction put ahead of my constant pain, I was then released to the care of my PCP, who told me straight out, I was an addict & the narcotics had to be stopped.
Over the next couple of years, I was routinely hospitalized on a short term basis & given IV Morphine for the pain, sent back home maybe with 30 tablets of Darvon, once they would run out, it was the same routine over & over again.
Expand this post...
I lost nearly 40 lbs., my wife left me, friends began to disappear, my insurance premiums went from $200.00 to $770.00 a month, then began to think maybe suicide was my best option, with nearly no one believing me about the pain & it's severity.
I was then lucky enough 10 to 15 doctors & 10 years later, to find a chiropractor who knew of a young neurologist, who was aware of my symptoms, was prescribed some narcotics & benzo's, plus having me sent to a new Pain Management Clinic for a 45 day stay, where after trial & error, was eventually given & sent home with, 200 mg's of Morphine ER, 3x's a day, 8 mg's of Hydromorphone up to 3x's a day for "breakthrough pain," 1 mg of Klonopin 2x's a day, various anti-depression meds, constant physical therapy & nearly 15 years later, I've been able to lower the dosage of all my meds, am disabled, but remain as active as possible, care for myself as well as my kids, with most people having no idea of my health problems, except for family & friends who have stood by me. I now have a PCP who cares for me & understands my situation, prescribes the meds I need & haven't been hospitalized for over 10 years now.
I guess my advice would be, if diagnosed with RSDS/CRPS, be as patient as you can be & hopefully find a physician who understands & is able & willing to treat the disorder.