I see a huge gap in actual postings here. May I ask for a who's who posting with a little information about how you came to have RSD, the treatment you have received and the treatment you are currently receiving?
My name is LaShonna. I have RSD/CRPS in my left arm, has spread to my entire arm, left back, chest, neck and is mirroring in my right arm. I have had RSD/CRPS for 20 months. In was as a result of a car accident in 07/00. I was officially diagnosed in 10/01 and currently am on 120 mg of Oxycontin, 4 to 6 capsules of 5mg Oxycodone for breakthrough pain. 300 mg of Effexor, 100mg of wellbutrin, 600 mg of Zonegran, Baclefen as needed.
I have had 2 EMG's, 2 MRI's, prior to diagnosis I had sought chiropractic care on 2 occasions.
I have had 4 cervical epiderals, 22 Stellate Ganglion Blocks. None offered more than a few hour of relief.
I have a list of websites with lots of information about RSD. Blessing to you all
[Please do not discuss other message boards or post e-mail addresses. Thanks. Moderator3]
[This message has been edited by moderator3 (edited 04-03-2002).]
The following user gives a hug of support to lcheyne: betchworth (04-27-2011)
Hi, I also was diagnosed with RSD. It was officially diagnosed by a pain management doctor after months of obvious symptoms that the orthopedic doctor chose to ignore. It started in my right foot/ankle and has since spread to my left foot, right calf, right hand/arm and shoulder, and low and mid-back. I am currently taking Ultracet, Norco, Baclofen, Elavil and Lidocaine patches. I am taking pills all day and all night with no relief. Sleep is non-existent for days at a time; I finally crash for 13-14 hours every 4-5 days. I cannot lie down because of severe back spasms; also, I cannot put any pressure at all on my right arm. It is very hot here and just having the fan on to circulate the air is like torture on me. I used to be a workaholic; I worked very hard and was very good at my job in a hospital. Now I have to sit home and try and get through the days and nights without having serious thoughts of ending this whole mess. I have always been a very very strong individual but this has pushed me way over the edge. I have had a series of 6 lumbar epidural nerve blocks, which only stopped the coldness in my right foot. They did nothing to stop the pain. My doctor changed my meds every week to try and find some that would give me some relief and that I could tolerate, as I have some severe drug allergies. My ex-husband had a back injury and got addicted to pain medicines and it turned him into a monster-so I informed my pain management doctor from the start that I didn't want the "big guns" as far as pain meds were concered. However, I have not had a working vehicle in over a month and cannot get to my appointments(he is 3 hours' drive from here). But when I do get to get a car and resume treatments, I am asking for whatever meds he will give me to make this STOP. I used to say that "I have RSD, it doesn't have me." Well, now I am of the conclusion that RSD does have me. I am sick of not being able to do anything anymore. I want my life back. The other night, I had dinner with my boyfriend. I had loaded up on pain meds and muscle relaxers so I could have dinner in a minimal of pain; yet when I tried to cut my steak, I kept dropping the knife. My arm was in spasm and I had no control over it; I had to ask him to cut my meat like a little child. Talk about embarrassing! I was totally mortified. If this is the best quality of life that I can have, I don't think I want it.
I also have rsd in my left jaw, neck, shoulder, breast, back and now is moving down to knee and ankle. I began having pain 4 years ago and started having seizures 3 years ago. The doctors were stuck on finding a reason for my seizures so would not listen to me about my pain and now it's gotten really bad. I'm not sure what trauma caused the rsd. I've seen so many different doctors from neurologists to psychologists. I finally was diagnosed (tentatively) a few months ago with rsd but we are still searching for another possibility as I have non-epileptic seizures along with the pain. I'm able to get through most days with oxycontin, vicodin, neurontin and elavil. The neurontin has helped tremendously. It puts me to sleep too so I am able to get a great night's sleep. I receive social security and medicare but no other insurance so paying for all my meds plus $250 per month for the 60mg oxy a day is breaking us. I have a wonderful, supportive husband and 2 precious daughters. The Lord and my family is the only thing that keeps me going. God bless to all of you.
K
Hi, I read your post, and have to tell you: you need to get a pain management doctor, one who specializes in PAIN. He/She will work as part of your care-giver team to ensure that you are getting the treatment you need to have a reasonable quality of life.
I finally have a good doctor, and he has just taken me off all meds and started me on 2 new ones-Clonazepam for the nerve pain and Percocet 10/325 for the other severe pain. There was only one pharmacy in this entire town that would order the Percocet for me, as it is a brand-new dose(double the previous strength), and according to the pharmacist, they are nervous about filling an RX for a schedule II drug from an out-of-town doctor. (Mine is 333 miles away). He said drug addicts would kill for that bottle of pills-which is why normal, non-addicted people who suffer from unrelenting pain are often not able to get the meds they need.
Anyways, I hope that you will look into getting a pain management doctor. He/she can also inform you of some of the drug manufacturer's websites so that you may be able to get some of your meds very cheaply or free. A lot of the big drug companies do pro bono (free) on some necessary drugs. Unfortunately, they won't on the schedule II narcotics, as they are government regulated.
I hope this information helps. Keep your chin up(or down, whichever way doesn't hurt!) LOL.
Hi... I was I guess unofficially diagnosed with RSD this afternoon by my podiatrist. I underwent 2 surgeries. 1 in Sept that got rid of a bunion, 2 neuromas, an unknown mass and a shattered bone.. the 2nd one was to remove the sesmoid (sp) bone. This was all done to my right foot. I experienced extreme pain after the first surgery and it was decided that I had what is called drop foot. But extreme burning and tingling didn't go away and we finally decided that we shouldn't wait to do the other surgery and I went ahead with it. Since that time I am still experiencing extreme pain but not at all times, and the constant tingling in my foot when I try and do anything. It swells if I'm even try and do housework... I can't drive anymore because of the pain, and at times I can't sleep.
The doctor has asked me to start swimming in my pool again and to also start walking 5 minutes a day to start every morning. So we shall see what happens. I truely hope he is wrong in the diagnosis, as I lead a normally very active life and can't see staying this way forever.
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Of all the things I've lost I miss my mind the most... if you find it, please return it to me.
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Of all the things I've lost I miss my mind the most... if you find it, please return it to me.
RSD / CRPS I or CRPS II 
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