Hello everyone my husband was rsd from the top of his head to the tips of his toes on tje roght side . Besides the chronic pain which no pain medication or managmemt has helped , he even has gone as far as to self medicate . He is havong seizures now and in the blink of an eye goes into theses horrible cold sells where he sjovers and bundles him self up and screams if you try to uncover him . Sometimes he will spike a fever but not everytime . Please can anyone give me any info he has onlY been diagonised for treche last two years. any information would be much apreciated .
Thanks ,
A very worried and tired wife

Welcome to Neuro Talk. I am so sorry your husband has to go through this. I also understand you are tired. There are infusions that can help, from what I have understood about this disease. I have RSD just in foot, and ankle.
Please seek a doctor who specializes in RSD. This site may be able to direct you to someone in your area. A physiatrist also may be of value. they don't just treat for pain, but at a cellular level. This isn't a branch of medicine I knew about before I found my current doctor. There are medications that can help, and some lotions including Ketamine, that cut down on the burning. The physician has to be awhere of all that is available to a person in cronic pain. You will get support right here. Hope you get a lot of responses, so you can help your husband. Please take care of yourself too, this is very hard on a family who deals with this. I will keep you and your husband in my thoughts and prayers. ginnie

Welcome to Neurotalk, first I want to tell you how dangerous it is to self medicate. Overdose, braindamage, stroke, Heart attack, etc. 2nd I can only tell you that warmth feels good to us with rsd. I have to say that I recommend calling his dr.'s for some external help would probably be best.

Is he on an antidepressent? This will usually help with the depression part of the disease.

dear poodlemommy:
RE: He is havong seizures now and in the blink of an eye goes into theses horrible cold sells where he sjovers and bundles him self up and screams if you try to uncover him .
This sort of sounds like when I had a panic attack before in ER - related to this horrible condition.

Hello,
My 14 yo daughter has RSD also and has had most of the symptoms your husband is experiencing. The “seizures” he is having is due to the pain and the nerve impulses that don’t stop going “hay wire” in the brain. My daughter was hooked up to a 24hour EEG and they found the “seizure” activity was exactly that….NERVE activity. It is so scary to see this disease take a toll on not just the patient but the whole family. I would find a good neurologist and then one of the big university hospitals that have a pain management program. Narcotics do not work on this type of pain. My daughter has been in 6 Ketamine comas and had multiple other procedures, the last one a lumbar plexus sympathetic nerve injection. RSD works on the sympathetic nervous system, so something needs to be done to halt the nerve impulses. Also psychotherapy is really important. RSD only improves if you move around, staying in bed is not an option. I force my daughter to go to school and distract herself. The more she is out moving around the better she feels, although always in crazy pain!!!

This may help with the Pain.

http://www.openfocustraining.co.uk/exercise.html

I can't help smiling over FIIKS. any smiles with this awful condition are good. I have it in just my foot and ankle. I feel for those is such terrible pain. I saw my dad seizure from pain. Awful to see anothers suffering, and to be the one experiening it. I so hope in the future there will be an answer for all of us. ginnie