I have had RSD that is located in my right lower abdominal area that spreads around to my back, down my buttocks and sometimes to my right leg. I have heard that RSD may be treatable if caught in its first stage. Unfortuantely, it took over five years to find out I had RSD.
I also have Picks disease which is a fatal degenerative brain disease that causes many strange neurological symptoms. Last week, I had a terrible itching spell. We tried many ointments and sprays but it didn't go away until I took some Keppra and Namenda which are used for my pain condition and neurological problems. Well I scratched with my fingernails under my left breast. One of my fingernaials had a jagged edge and it caused s superficial scrape about 4 inches long. Within two days, I started having pain in my entire breast, left shoulder and part of my right arm.
There is no signs of injury except for a reddish mark where I scraped the skin. I am going to my PCP on monday so he can do a work up to see if there is no infection. I have had so many episodes of pain that no one can figure out the cause of.
Because of my history, I am worried that I could possbily be developing RSD in that area. We had to move for my husband to get another job and we have to fly to see my pain doctor. I talked to him on the phone and he said to have a work up done by my PCP which I am going today as I said above. He told me also that I could be developoing singles. He said if the work up is negative, then I should fly out to see him.
I am so worried. Unfortunately, especially in my nipple area there are a lot of nerve endings so this pain is terrible. I have throbbing and stabing pain in that area as I do with my original RSD location but I also have this really uncomfortable burning stinging sensation.
Has anyone had a similar experience? Could this actually be RSD?
Thanks
My experiences with RSD lead me to believe that if the pain feels the same then it is RSD and has spread. I think the scratch was just a coincidence though. RSD can spread in your body without having another injury to a separate part of your body. My RSD spread to my legs without them having any sort of minor injury, except perhaps a whole lot of walking but no ankle sprains or anything.
It took them two years to diagnose me and I was almost a fullbody case at that point, so of course it was no longer treatable by the methods available where I live. No matter what the new pain is though I recommend looking into the ketamine infusion treatments. They've helped a lot of people and while it's not a fun procedure if you have pain in your arms (the IV and the constant blood pressure taking), it can be worth it. I just got through my first one and even though it was dreadful I can't wait to try it again (for longer term cases it takes longer to break the broken nerve cycle, so I expect at least two or three more treatments before it has a longer lasting effect, though I did have a glorious few hours of highly reduced leg pain.
be as well as can be,
meredith
where did you have the ketamine infusion performed? I'm assuming that you are talking about the two hour procedure? Also, did your insurance cover it. The pain management group I go to, had tried it for awhile and they stopped doing it. My doctor said they weren't getting enough results and all the insurance companies were starting to not pay for it. I am sorry that you are suffering so much. I just started Bacolfen which is prescribed to prevent contractures. My doctor is worried that I am getting to the stage I might start developing them. Also, the doctor that runs the clinic was involved in trials that showed this drug was one of three drugs that stimulated the pitutary gland to produce more growth hormone which apparently helps with pain.
Take care,
Mersikee
I had a four hour procedure for three days in a row from Dr. Chin at GWU in Washington DC. I'm not surprised there weren't results with only a two hour session. New reports are showing that it's more about the length of time the ketamine is in your system as opposed to the dose, which makes sense given it's all about breaking the screwed up brain/nerve cycles. I'm on Medicare and it seems to have covered the procedure. There's a good doctor in Kentucky doing infusions and they're doing them in Baltimore at Johns Hopkins too (I'm not sure where you live) -- which is where I got diagnosed and I trust the guy who was the main RSD/pain guy there, Dr. Raja.
I tried baclofen but had a really poor reaction. Flexeril works better for me. I started it because my back pain keeps those muscles so tense all the time that I was having spasms. I take it just at night to ease the day's tenseness while I sleep or when I have to be in my wheelchair or sitting upright at all for more than an hour or so.
Thanks for the info. My husband has just been offered a job in the one of the areas you mentioned so if we end up moving there, I will check it out. Do they put you in the coma or not? Do you go home the same day after the procedure? I am glad you are getting some relief. I also have a terminal degenerative brain disease so things are tough. Thanks again.
Mersilkee
No, this is still the awake treatment not the coma method and you do go home the same day. You spend about six hours there all together. Other than the awfulness of having an IV and blood pressure cuff on RSD affected arms I didn't have any bad side effects or hallucinations or anything. It's a long process though, for me at least because I've been sick so long and it's so widespread. So I won't feel any real relief until the 3rd or 4th infusion probably. I'm trying to get insurance to pay to do it inpatient because then they keep you on it longer since they don't have to make sure you can walk home at the end of the day, in the studies I've seen it's been much more effective through longer inpatient sessions.
meredith
Ok I am not sure if I have RSD but I have all the symptoms. I go for lidocane infusions every other week and I got 4 days relief this time. I had a hernia repair with mesh and it turned out to be a night mare. I started the infusions for the nerve pain in my groin but my pain seems to be spreading, I also injured my back neck and shoulder, elbow and another hernia in my abdomine. I have started to get burning pains from just about anywhere from the abdomine down, swelling in my thighs and calfs, chronic headaches, and pain in some areas from the slightest touch. I am on meds long acting pain and many others plus others. Does any of this sound familiar with anyone else? Thanks Debbie NY
yes Debbie,
it sounds like RSD to me. I suggest you see a pain management doctor if you are not already seeing one.