Question:
I have had RSD 11 yrs. For those of you looking for treatment options or drs or for that matter to find an RSD support group, try www.rsdhope.org www.rsd.org www.rsdhelp.com (if I’m wrong, its org ) www.rsdcoalition.org Surgery or sympathectomy tend to excerbate RSD and cause it to spread (I’m a good example I now have it full body) Sympathectormy may sometimes alleviate the pain for a few months, but the burning tends to comeback and spread. The only way I was able to gain any control of the relentless burning was thru clonidine, SSRIs, and an intrathecal pump. Life is not good, but it is better. Feel free to email me if I can be of help.
Response:
I apologize for not knowing how to respond to an individual. Am a newbie so please bear with me. It appears that no one wants to say those words. You know, uh-oh, shouldn’t have cut this nerve or we messed up. Lots of suppressed anger. Gosh, 11 years? I don’t know if I can stand it. Would you kindly spell out your abbreviations for me? My brain just does not work as good as it used to. Thanks so much and I will certainly look at the sites you forwarded to me.
Response:
SSRIs are selective serotonin reuptake inhibitors a type of antidepressant which has been shown to help with chronic neuropathic paini such as effexor, luvox,paxil
Response:
Hi…. I posted these sites too…from what I remember, they are really the best on the internet. >www.rsd.org
This should read: http://www.rsdsa.org. Without the "sa" in rsdsa, you won’t get to the correct site. www.rsd.org is for a french renovation type site. Hope this helps…. Robin – Hide quoted text — Show quoted text – >I have had RSD 11 yrs. For those of you looking for treatment options >or drs or for that matter to find an RSD support group, try >www.rsdhope.org >www.rsd.org >www.rsdhelp.com (if I’m wrong, its org ) >www.rsdcoalition.org >Surgery or sympathectomy tend to excerbate RSD and cause it to spread >(I’m a good example I now have it full body) >Sympathectormy may sometimes alleviate the pain for a few months, but >the burning tends to comeback and spread. >The only way I was able to gain any control of the relentless burning >was thru clonidine, SSRIs, and an intrathecal pump. Life is not good, >but it is better. >Feel free to email me if I can be of help.
I am in no way a physician or any other type of medical professional. I am just speaking from personal experience or information gained during my treatment or research ;o). Remove NOSPAM from the above email address to contact me.
Response:
Gottcha. On those too. I know that the benzodiazapines make me behave down right mental. Even my mother was crying when I would talk to her on the phone because she said I sounded like I was drunk or on something all the time. Ah, 26 pills a day. Get a clue docs. I also wanted to thank you for turning me onto Angel. I feel like I am truly not unique! I really appreciate everything. Red
Response:
listings of support groups for rsd may be found at www.rsdcoalition.com www.rsdhope.org www.rsdsa.org for those of you looking for a dr. who specializes in treating rsd , try contacting the support groups nearest you for suggestions
Response:
I was diagnosed 3 yrs ago with RSD (SMP/SIP). I have been homebound for 2-1/2 years. I am trying to find support groups to attend and most importantly — alternative pain control. I currently take medications such as methadone (just started as a replacement for oxycotin), neurontin, soma, flexeril, desipramine, ambien, depakote, and a couple more I can’t think of right now. I feel like a guinea pig. I have also had a thoracic sympathectomy. I would most certainly have to die to feel better. I also have myofacial pain syndrome secondary to 6 surgeries. As of 4 days ago, I lost the use of 3 more fingers. I need to know if there is anything else left to try or doI decide to accept this horrible disability and just try to get through each day. Will try anything; afterall, what have I to lose?
Response:
Jana, I have severe rsd all over , but am only 18 months in. Every where on my body is affected. After 17 months of steady increases in narcotic meds, we have found that 48mg of dialaudid, 480 mg oxycontin and 6 squirts of oxy-fast finally has produced a good enough remission to allow me to sit with no pain. Because it works so well, my doc is putting in a med- pump to supply the dilaudid continuously. I also have both kneecaps rubbing on my femurs which is what triggered the rsd. After all the reading and asking I have done, it is obvious that the pain has to be stopped, even at the risk of all those meds. The addition of the dilaudid was what finally tipped the scales. For comparison I weigh 200 lbs. Peace, Richard Sullivan I am not a doctor nor have I ever read a magazine in their office. I speak only from my personal experience with RSD