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Re: Reflex Sympathetic disorder

Re: Reflex Sympathetic disorder

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Posted by Lee Ann on August 03, 2000 at 10:53:57:

In Reply to: Reflex Sympathetic disorder posted by ccharleyrider on August 02, 2000 at 20:29:26:

: I am trying to find as much help as possible for my son who has RSD. He is 21 yrs.old,6'5" tall, and was diaganosed May of l999. His life has not gone well with this and we have heard of a doctor who does surgery on the bad nerves. He has it in his right knee and he cannot get thru college or work. I am very worried for him, there is depression and he has been typed as "A-typical", any type of treatment works in reverse ,increases pain, nothing will help, and we have tried various medications,but to no avail. If anyone has heard of this doctor or knows of anything that can help us, please E-mail. He was suppose to be married,but we have put all plans on hold until we can get him back up on his goals for school, etc. No matter how hard we try to inform his friends, etc., on this and why it is important to be carefull of the leg, not much success here. I don't have a printer yet to get copies of articles, but read my E-mail and save important items. We have insurance,but they don't seem to have a specialist to help us. What they have done, hasn't helped. Anything sent will be greatly appreciated!! I do talk to some people who have this too, but my work hours prevent me from being on the computer alot,so it is frustratingly slow. Thank you, and I wish everyone with RSD the best life can bring to you! Sincerely, Ccharleyrider(Connie)

Connie,
Hi. It is always hard to respond to these e-mails because you don't know exactly what the other person has done as far as treatment. As for pain specialists,
it is usually a neurologist or anesthesiologist who has a good background in RSD who treats us. If your son has not seen either of these, he needs to. If you have a
general practicioner that you see have him start checking out docs for you. Or you can call various pain clinics in your area (usually in the larger cities) and just ask
them about the doctors experience with RSD. You insurance will have to cover and I am sure already does a neurologist to treat your son and from there the neurologist
can help you find a good anesthesiologist for blocks, etc. I recommend that you go to the website of the Reflex Sympathetic Dystrophy Association of America at
http://www.rsds.org Read their info on the Clinical Guidelines for diagnosis, treatment, and management of RSD. This will give you an idea if your son has been
recieving the type of treatment that is standard for RSD. Not all treatments are there but it provides the basic guidelines and the best order for the treatments. RSD
is so different in all of us, some respond to one treatment or med but not to another. And some of us respond to almost nothing. You do know that physical therapy
is very important in your son's treatment right? One of the most important things he can do is keep moving to try and keep as much mobility in his knee as possible.
Since the RSD is in his leg-Aqua Therapy would probably be good for him. It will get him moving but reduce the weight beaing on his leg. Also, watch his depression
for us RSDers (or any chronic pain patient) this can be a serious problem. If you can, stop putting off his life until he gets better because that may not happen. I have
had RSD for 8 1/2 years now and know people who have had it 15 even 18 years. That is hard to face, but it is a very real possibility he (and you) may have to deal with.
I am sure you have also been told it can spread to other parts of his body. I understand how your son feels, my RSD is pretty much non-responsive to meds, with the
exception of narcotic pain killers. This is something your son may have to consider and you need to find a doctor who understands the proper way to administer them
and at the right doses to help his pain. I too go to college and am a landscape architect student (an old one!). I was only able to go back to school after I started taking
percocet. I took it for 4 years until six months ago I started having other health problems and had to take myself off of it in order to determine what was wrong. If your afraid
of the addiction issue (and we all are) I went off this narcotic after 4 years with no withdrawl symptoms except lack of sleep which we suffer anyway and I have no "cravings"
for the drug. It is understood that our bodies process the drugs in different ways than does the bodies of people using the drugs for a high. I found that to be very true for myself.
Just telling you this incase narcotic pain meds need to be considered to help your son. Sometimes helping the pain helps the other RSD symptoms, it did in my case. If I can
provide more assistance, please post your questions and I will try to help, even if it means making some calls in your area etc. to help find a doctor for your son. I will be thinking of
you both and praying for you. Lee Ann


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