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Old 11-04-2009, 01:34 AM
loretta loretta is offline
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Join Date: Feb 2007
Posts: 1,090
15 yr Member
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
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Quote:
Originally Posted by gitte74 View Post
Hi everyone

Iīm so glad to have found this forum, I havenīt been able to find anything on the danish sites. Anyway it makes me sad to read all your stories .

Itīs actually my son who is suffering the RSD. The short story: Over a year ago after playing badminton, Oliver symptoms started in the right foot spreading to belov the knee, not beeing able to stand on the leg, having to use cruthes. After 3-4 months, a physical therapist, who was trying desperatly to relieve his pain, did something to his back (not normally painfull) and had him doing some ”bend-back” exercises every hour. Later that evening I had to take Oliver to the ER because of servere backpain. A week later he was admitted to the hospital and was diagnosed RSD in the leg and send to a Psyciatrist because of his back because the scan said nothing and he was able to move relative freely when lying in the bed (I have chronic backpain and I can do that too). Because of the back pain he is having trouble sitting, standing, walking, activity more than a shorter period.
Olivers leg has gotten better on Lyrica and PT, actually also the back a bit. In June the Lyrica is decreased from 200 mg daily to 150 mg daily, but since then his back has been worse again.
The psyciatrist canīt seem to find a reason why the back should be a psycological problem, they think of him as a normal boy in pain. Another PT that we have seen, thinks that the back pain is for sure related to the RSD, he also discovered a sensitivity in his sculp, wich he also is having on his back, not quite like the leg was at first, but itīs there. There is nothing else to see on his back (I think).

Iīd like to hear your opinion and maybe some advice. Is it possible the back pain is all in his head?? We as parents are having a hard time beliving it, not because itīs in life impossible but more that we know our boy and he is normally a happy wellfunktional boy.
Is it possible to have a ”lighter” version of RSD, without all of the symptoms ,the doctor said that his leg was one of the milder cases. I know that children can have more mild RSD and there is a lot of differnt pain feeling but is there a difference in the intensity of the pain.
I have also read about RSD patient could have up to 20 times decreased ”normal” painfeeling what is your experience?
Oliver had, a year before this, an episode with the left foot painfull and swollen for 3-4 week with no diagnose despite of blodwork and X-ray, could this have anything to do with this??

Maybe this is to much to ask and I know that you can not tell me anything for sure but we are desperate parents not being able to help our son and it is affecting him very much also psykological not being in school for such a long time and not being able to do like his friend, also not knowing anything for sure.

I hope you can understand my writing, grammar and spelling itīs a long time since I have written in english (and it took me a very long time)

the best wishes
Olivers mum
Hi Olivers Mum and welcome to Neurotalk,
RSD is truly a very difficult disorder to have or for family members and friends to watch a loved one suffer from this disorder. I would encourage you to research as much as you can to learn about the disorder. It is not unusual for RSD to spread from original site to other parts of the body. I went from frozen shoulder to full body RSD and also have it internally. There is a informative site: rsdrx Dr. Hooshmand is now retired, but left his website up. Under puzzles list: is 146 questions from RSD patients and his answers. It's very good. Also the national organization for RSD is RSDSA- it also is very informative. Read read read on this site. RSD affects the Limbic part of the brain, causing depression, short term memory loss, a grasping for words while talking. forgetting what we want to say. I am 62, married and have a daughter-age 30 and son in law, they are very supportive and it means soo much to me. RSD is an autonomic disorder , which means it affects our organs that are involuntary. Like blood pressure, circulation, body temperature both hot and cold. Sweating is common among us. skin rashes , itching, Ice is not recommended. Desensitization is important. Physical therapy needs to be done by someone who is skilled to not overdue or injure the patient. Densensitization is where we get our limbs used to different fabrics, textures.
Does your son use a computer.? There are other young people on here with RSD that could be a great encouragement for your son. He won't be so isolated.
RSD is rated 42 on the McGill Pain Index of 1-50. It's above amputation, and terminal cancer. Ask as many questions as you want, this is a very kind, compassionate group of people. Take care, and give Oliver a soft hugs from us, loretta
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