... travel down?
6 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
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
3 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.
4 Jun 2011
I found that neurontin is very good for RSD. I started with stellate gangellion shots in the neck.
My right hand had 2 black fingers that flopped, and the middle finger was half black. I asked a doctor to surgically remove them. He didn't, and I was in a rage. Then I had stellate gangellions. They had given me everything-opiods-whatever. Since they did not begin to work, I quit taking them after trying for 6 weeks on each thing. After I was functional-I went swimming and playing in water-then spent 3 hours driving home. It set the RSD off again. The VA gave me neurontin for temporary relief. It worked so well, that I didn't need more pain therapy. Then I backed off the med. I've had to take it 3 other times. The civilian and military pain doctors have told me to avoid all pain killers as much as possible. I don't take aspirin, tylenol, advil, etc. because too many doctors have told me that somehow, this will open my nervous system to pain-and when I need a pain killer-it might not work. I try to stay physically active-I lifted little dumbells, because it forced my fingers to curl on demand and grip. Part of my right fore arm was shriveled up, but it's nicely muscled now.
Some friends with pain pumps have their own set of problems, especially if the person is thin. RSD is the second condition that was approved by the FDA for pain pump therapy, cancer was the first medical condition.
5 Oct 2012
I do not have RSD, but do have a Spinal Cord Stimulator and know of many people that do, and none of us are having any problems with leads breaking or it not working, etc. Not that problems don't ever happen, but they don't as a regular thing. A good site to go to is raceagainstpain.com - look under Experience with Treatments. Another group is neurotalk.psychcentral.com/forum118. There are a lot of experienced patients on these sites who can help you. Take care - ElizaJane23
2 Jan 2013
I've had a SCS implant since 2005 and it was a good match for me at the time and for many years. Unfortunately, my RSD has progressed & I have had some recent falls that have compromised its effectiveness. Yes, I have had many surgeries to set the leads back in position, but that was from falls that I had. I had a new model placed last year. I've not heard of the leads breaking, per se, as they are very flexible. But I guess anything is possible. I had a SCS trial to see if it was an option for me. Unfortunately, I may have it removed since my RSD has progressed beyond its effectiveness. I wish you all the best. Research everything & be informed!!! God bless m
21 Apr 2013
I don't have a pain pump, but I have had a spinal cord stimulator since 2000, and it has given me much relief! Thanks to the SCS SYSTEM, I am able to take LESS pain med, and not deal with the side effects. Also, research has shown that it can halt the spread of RSD AS well. My lead broke once, my fault, doing too much at work. Best wishes in your quest to reduce your pain. The best meds are opiate analgesics, antidepressants, seizure meds, and any med that is for neuropathic pain, I.e., Lyrica.
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