Reflex Sympathetic dystrophy

[05survivor]

Hi, Wondering if anyone has any experience, suggestions for individuals suffering from this neuro prob. My 14 year old cousin was just diagnosed. Not much info out there that I can find. He is being seen at Kennedy Krieger for management. Wondered if any one knew of any treatments for symptoms? Thanks

[metronycguy]

rsd or crps is a wide range of pain syndromes.
i have been diagnosed with it, the spinal injections helped a lot with me. where are the symptoms and what are they ?
with me it was like a loop that never stopped until i had the injections.

[shelley]

If you look back in the pain forum, I started a thread called hand pain. My husband has rsd. There were lots of good suggestions in there.

I'm sorry, but I don't know how to link it.

It won't be hard to find though.

Shelley

[firesmurf]

so sorry to hear about your young cousin having to deal with this crappy syndrome.,i have it too in my knee and lower leg.what was the type of injury that caused this,or was it a surgery that damaged his sympathetic nervous system?

there is alot that is and is not known about this syndrome,but there are treatments availiable for some of the symptoms of it at least.i too would be interested in knowing just what area/s he has affected with this,this just kind of makes a difference in the types of treatments he can have and where they need to be done in order to obtain the best possible benefit from them.i too get sympathetic injections among other things.is he going to an actual pain clinic for his pain issues or seeing some other type of doc at this point?an actual pain clinic would really be the best possible place for treatment.they can just offer so many more options for pain control that most other types of specialists just cannot offer him.i try an rely,myself on mostly topical type treatments only because i seem to have developed some bizarre sensitivity to like all and every anti siezure med i have tried after lyrica.tho lyrica did actually relieve alot of symptoms i was having,it gave me(i am assuming part of this reaction was just me and my specific types of damage)some rather awful side effects,but it was the only med i ever tried that actually even touched my RSD pain/symptoms and the central pain syndrome that i now have in one arm and over both shulder blades.lyrica should be something to try anyways,just to see how it would work for him.everyone is just different in how they will react to any given med,thats all.what works or dosen't work for one may work the opposite in someone else.

just how was his actual Dx made?what symptoms?you came to a great site for support and info,let us know more about him and his overall medical history and current status,it will help alot in giving the best advice to you.Marcia

[05survivor]

Went through 4 months of appoitments, mri's etc. before getting to Kennedy Krieger to find out WTF was going on. Finally determined through docs. He has burning up and down the arms and the right leg. Walking getting progressively worse and fatigue is an ongoing problem. He sees the pain management doc at the end of April.

[firesmurf]

i am just wondering,does he have the swelling in these areas or the color changes,and temp/skin changes too?or does he just have the horrid burning in these areas?i am not doubting he was Dxed with this i just am wondering if he has the characheteristic symptoms as this can also be central pain syndrome,or other possible neuropathies too.there are alot of things that are the same but also alot that is different between central pain and RSD syndromes,thats why i am asking.

what precipitated the 'onset" of the burning?was he injured(in the neck area thru the lumbar?cord injury?) some how or have a surgery?there is just usually some sort of 'trigger/event that brings out RSD.i am just wondering because RSD tends to start out in a bit smaller scale than the huge covered area he has(tho anything IS possible,it is just more likely in a smaller area to begin with).now central pain,and other neuropathic pain syndromes can and do appear over a much larger area in some cases,and in alot of cases,tends to follow dermatomes,where the RSD crap can pop up anywhere along the sympathetic innervated areas.so tho it is indeed possible for him to have RSD in all of the areas you mentioned(poor kid) in someone this young,it usually takes more time to spread,espescially on the very large scale he now has,if it decideds to.his parents just need to make sure he does indeed have the right Dx.if you could just provide a bit more info,that would help alot in giving the best possible advice.i really DO feel for him,no one,espescially anyones child should have to go thru this nasty stuff.I wish him and his parents and you luck in hopes they can find something to calm this all down for him.soon.please keep us posted on how he is doing?marcia