I'm New Here

[Guest guest]

Hello all,

I'm new here and sure could use some help and information. I have a

17 year old son that has been in horrible pain for 3 years now. He

has Ehlers Danlos Syndrome (EDS) and Chiari. But these two DX do

not explain his extreme pain. His Right knee has hurt terribly. It

has kept him in bed for 3 years. He had been a high school athlete,

and good student, then one day, for no reason the R knee pain began.

Nothing has been found wrong with the knee. He is on high dose

narcotics, which barely take the edge off the pain. 2 Doctors have

recently said they believe he has RSD. From what I have read on it,

I'm not sure I agree. His pain is not burning, the joint does not

swell, it is cool to the touch at all times, The skin can be

touched, but a gentle examination is painful. The pain follows an

exact crescent shape line on the outside of the knee cap. It is

there 24 hours aday. The rest of his body is a bit sensitive to

touch. I'm a massage therapist and I can no longer give him

massages, but he can be touched gently without pain. Does this sound

like it could be RSD?

He has an electric wheel chair now in hopes that he can attend

school. But his sleep issues and exhaustion, memory problems, and

feeling like caca , has stopped him from attending for 3 years now.

Some of these things sound like it could be RSD, but some don't.

Plus many of these symptoms can be attributed to his Ehlers Danlos

Syndrome. An implant has been talked about to help stop this pain,

but that seems so drastic, permanent. But all these narcotics can't

be good for him either.

I could really use so help trying to make since out of all this.

Thanks,

Cindy