[qtkatie013]

ive been diagnosed with rsd since december.. in my left leg. and now i'm getting the same feelings in my arm. had an emg done because they thought it was carpal tunnel. tests came back normal so i'm guessing rsd might have traveled to my arm now? ive been on a total of 6 medications including neurontin, keppra, and now lyrica and none of them have worked. in fact, the pain is just getting worse every day. ive been on the full dose of lyrica (i believe it's 600mg) that my doctor will prescribe. i've been reading these posts and see that some of you are on lyrica (or other medications) and either opiates or anti-depressants at the same time. what exactly does mixing these do? i'm wondering if my doctor will ever suggest doing that for me? im kinda confused about all of this. he tried a nerve block but it didnt work.. he suggested a few months that i had some kind of epideral catheter put in me but he never brought it up again. i also see some posts about spinal cord stimulation and other things that doctors try. how come mine wont try any of these other options?? im new to all of this and it's scary and confusing and i am willing to try anything..

[Debby]

Hi,
Have had RSD in both feet since 2003. I use 1200 mgs of Neurontin every 8 hrs & 50 mgs of Lyrica every 8 hrs also. Lyrica knocks me out....all I did was sleep on any higher dose of it. Being on 600 mgs of it would have made me comatose. And I gained weight...that I really hate. I have found that Neurontin works the best for the burning & numbness I have. It took about 3 to 5 months to build up to that dose. I sometimes take a bit more when the burn is really bad. I also know alot of people can not tolerage Neurontin & prefer Topamax. Has he tried this medication??? I also take MS Contin for the pain. It also helps with the burn but mostly for the pain. I also take Baclofen (a muscle relaxant), & Trental (to help with blood flow). I myself cannot take antidepressants but most people here are on one or another of them for depression, to help them sleep &/or for pain.

Sometimes a series of Nerve Blocks is what helps the most. Some people have better luck with a series. It may or may not stop what you already have going on, BUT it might stop or atleast slow down anything spread. Also it is probably way too soon to think of getting an SCS. Doesn't sound like your doctor has tried enough of anything to actually determine if anything will help you or not. Seems to me he/she hasn't given any med time to actually work. I could be way off base here also. I have assumed this from what you told us. You have only been into this approx 5 to 6 months. He might not have found the right combination of meds that will work for you. He also might want to try a series of nerve blocks.

My PM Doc told me to run like hell if anyone ever mentioned doing an EMG on me. It is one of the worst things you can have done to an RSD limb. I know alot of people here has had EMG's done but I also think most are sorry they did this.

I could be way off base here so I apologize if I have offended anyone with my opinions here.

DebbyV

[lostmary]

Debbie,
what is an EMG? After having about 8 surgeries in the last 3 1/2 years both my pod surgeon and my primary internest feel that I have RSD. I go to see a PM on the 14th of this month. I was going to go on May 1st, but my insurance has to authorize this PM for out of network coverage. there isn't anyone even remotely close to me. I have the RSD in the left foot that had all the surgeries, and now the right one is starting to ache. not sure why.
Mary

[Vicc]

Hi Katie,

As I recall, you have been seeing Stanton-Hicks, who you describe as a rude old man, rude is a good enough reason to dump him, but there are a myriad of others. He isn't working with you because he is a rude old man. Find another doc.

I'm not a physician, much less a diagnostician, but have researched this disease extensively. It begins with inflammation then transitions into the cold skin - blue skin color of stage II. It usually takes a few months from the time of injury to the second stage, and during this period, some research suggests that taking an antioxidant can result in less severe symptoms.

Antioxidants can also delay the onset of symptom migration (new RSD in another limb). I have been taking 200mg of the antioxidant grape seed extract every day for the past ten years, and since I began this regimen have not had any new symptoms everywhere.

I strongly urger both of you, and everyone else, to begin taking an antioxidant today. It is cheap (about $10.00 per month) and has been reported to have significant benefits for everyone.

A few Forum members have reported starting to take grape seed extract, and thus far not one has reported new symptom migration...Vic

[Sydney]

I too have been on the higest doses of about 35 pain meds, muscle relaxants, anti dep. None ever worked. I also was on 600 lyrica - didn't even know I was taking it. I have no reactions to high doses. My body metabolizes them very quickly so they are ineffective. I believe we would be considered "polymorphic". I read that somewhere.
I am back on lyrica again and going to go up to 900mg. or more. I know it is scarey but I am desperate and my Dr. is willing to try it as my metabolism is so unusual. Of course I have gained weight in the past 2 weeks and eat almost nothing.
Re: an EMG. I refused one at the Mayo Clinic and also at the local (supposedly expert) pain mang. Dr. They stick needles in you and then they give you elecric shocks. It is something like that. Goggle it and see more about it. With RSD you must be so careful not to allow invasive type procedures like that to be done.
Best wishes. I wish I could be more helpful but unfortunately I am "in the same boat" with pain meds. Nothing ever helps. I just take sleeping pill and go to bed to get away from the pain.
Good luck,
Sydney

[Desi]

Sydney, My Dr. has me on 100 mg. neurotin in the afternoon.. percocetts, as needed and vicodin es.. then at night 200 mg. of neurotin. (the Neurotin helps me sleep like a baby) I hope this medicine still works. don't be afraid to ask for something more stronger for the pain, you shouldn't have to suffer needlessly! Love, Desi

[JOAN_M]

I had a partial emg years ago and that was enough for me. it is needles and it records the nerve activity as a sound. if you hear all static you know the nerve conduction is like a radio ... no longer conducting the music from here to there ... mine was all static. it verified that my nerve activity was not going to return and that was what i wanted to know. so it was worth it to gain that information.
only do what tests you want. do your research. only take what meds work for you ... doctors often think they know best, they don't. you are your own best judge. joan