Re: Daisy, may I ask you a few questions?

[Guest guest]

Hi Lori,

I am happy to share about my son. was diagnosed with CRPS the

first part of 2008. October of 2007 had hamstring lengthening

surgery to straighten his legs because he has cerebral palsy.

had always had a few pain outbreaks due to spasticity. While he was

in the casts, his pain was unmanageable. He came out of the casts

with a 20% total body weight loss, tachycardia, and hypertension. I

got him back home and started with the local doctors ( the ortho was

out of state), and he was referred to a pain clinic by the

neurologist after the neurotonin wasn't working.

He was literally screaming in pain, couldn't stand to be touched and praying to

die. April 23 he had his first epidural and the pain was relieved for the first

time. Oral meds just weren't working. So, on May 18 had a medtronic

intrathecal pain pump put in.

He now receives morphine daily, as well as taking lyrica, valium, and lidoderm

patches. His CRPS is in stage 2 and is in the right foot, and left leg. He also

has the allodyina, (really painful to be touched) The toes now have started to

" perch " , and we are working with phenol and botox to relieve that. The CRPS

also has affected 's bladder, and colon.

In September, had his colon bypassed and now has an ostomy bag

because of so many blockages this year. will use a wheelchair

probably for the rest of his life. The leg surgery was supposed to

help him get out of it. I think CRPS is the worst kind of pain that

someone could experience. So many doctors are still completely

uninformed of how pain can damage the body, and damage it

permanently.

As far as talking to some doctors about RSD/CRPS they

will acknowledge it, and then say they think it truly doesn't

spread. When I point out my son, then they grudgingly admit perhaps

it could happen on a freak occasion. I have dismissed a few doctors

until they get better informed.

The weather absolutely plays havoc with 's pain. As far as I can figure

out, may have had some neuropathy in his feet before the surgery. The

surgery caused the peroneal nerve to be damaged, and that is what caused

everything to avalanche in such chronic pain.

The children's hospital that we use here said they had never seen a child as

sick as my son. They have gotten him a lot better. I am not giving up, until

he is comfortable, and stronger. He is much better than he was last year.

We take him to lots of physical therapy, and are tring to get him

into a good aquatic program. He tires very easily now, but is

getting back on track. How did your RSD/CRPS start?

Daisy

>My name is Lori & I have been diagnosed with RSDS/CRPS I for a year

& a

> half now.

>

>

[Guest guest]

" Daisy " wrote:

>

>

> We take him to lots of physical therapy, and are tring to get him

> into a good aquatic program. He tires very easily now, but is

> getting back on track.

Daisy-

Please find the nearest warm water pool for your son. I couldn't

believe how much a difference it made in my pain level to be able to

do physical therapy in one. It got me from being horizontal in bed in

pain 24/7 to being up and moving around and having a life. THAT's what

a difference warm water therapy made.

in Oregon

[Guest guest]

Daisy,

First, I would like to apologize for not getting back to you sooner.

I was out of town for a conference.

My RSD actually became noticable after I had my second arthroscopy on

my right knee. The doctor had to do a lot of work in my knee to make

it functional again. Or so we thought.

I was in the same shape as your son after I came home and began trying to deal

with the pain. I cried, moaned, and clinched my jaw so terribly that I thought I

was going to break it or all of my teeth. My orthopedist has been the most

helpful doctor I've had throughout this process.

We are worried about what can happen with my RSD when I have my right

knee replaced next month. I am excited about getting it done because

the pain is becoming totally unbearable since it is completely bone

on bone.

My pain specialist and orthopedist are working together to make sure

that my RSD is kept under control as well as possible.

Lori

>Daisy wrote:

>Hi Lori,

>How did your RSD/CRPS start?