I am new here - have a friend who had RSD in R knee since 2006 - SCS trial worked but in OR when the perm one was truned on the RSD went to both feet (they could not keep him under) - it appears that is has now gone to his upper body (head/face/neck/shoulder/back and chest)

He had this incrediable heat/redness/burning/sweating and itching.
Had a gabapent cream compounded but he gets like acid trips from it.
Currnetly on 600 mg of Lyrica, cmbalta, celebrex, trasadone, atavin.

DOES ANYONE HAVE A IDEA ON HOW TO STOP THE ITCHING. He has been getting sympathic lumbar block every two months that help with the feet - but his doctor is 150 miles away and will not be here till Nov 13.

Bad part is that he is 6'4" and must travel with his legs extended and does not have a vehicle. OH! and it is a worker comp injury.
THANK all of you for any help.

He really needs to talk to his doctor, it also could be a side effect from one of his meds. CALL the doctor. There should be someone at the office that can answer the questions. You never know if it is a side effect from meds.

I'm sorry he is in so much pain, I will keep him in my prayers.

Sandy

Welcome to NeuroTalk Sailmaker! You're a good friend. I hope your friend will call the doctor about this. He could also ask the pharmacist, since they know about side effects from the different meds. Let us know what he finds out. Take care.

Terrible itching can be a side effect from liver disease. (and gall bladder disease).


I see he takes Cymbalta, and this drug has caused liver damage
in some people. Use of Cymbalta with alcohol will accelerate this problem if it occurs.

If the itching is due to pain meds (opiates) Atarax (hydroxyzine) is usually used. Or the pain meds can be changed.
Some people get the itching from synthetic opioids and do better on Morphine. And there are some who have the reverse experience.

The itching should be evaluated by a doctor. It could mean several things.

Hello and welcome to NT.

Do call the doctor it could be a reaction to medications.

However, I have full body RSD. 7 years into life with RSD my body would itch where ever pressure was applied. It drove me crazy the itching was never ending. There was no rash or redness just uncontrolable itching. I called my PM doctor who though it was my RSD but wasn't sure. He sent me to a allergist who understands RSD and said. The communication between the nerves and the small part of the brain they communicate with when telling the skin to itch was messed us. The brain was getting signals to itch and there we no real reason to itch. I take 2 mg of Periactin 2 x day if I'm flared and once a day if my pain is under control. I have tried to stop the medication all together and a couple weeks without any Periactin and the itching returns.

Keep in mind RSD/CRPS has different affects on all of us. What works for me may or may not work for anyone else. I wish you the best of luck in helping your friend. Being a good friend is so important.

Take care,
Sherrie

I've had itching for years now. I try to ignore it like the pain but it's much less effective. Believe it or not I keep a bread knife at hand when I'm at home. A few passes with it and it can be gone for hours.

Thank all of you for your help.

We spent the day in ER yesterday. All blood work can back in normal ranges. Three dr's (two of his and the ER doc) put there heads together and decided to give him IV tordal, ativan and a little morphine. If nothing else, got him home and to bed and he did sleep. We be getting home nurse today to continue this at least one or two days. His PM doctor is out of town, of course when he is needed most.

Pain meds never seem to work for him, he has RX for percet ?? but last time it was taken was in Aug. THE good and the bad is we live in Alaska, there is really not a good RSD dr here. His records were reviewed by mayo clinic, Uof Calif head neuro, and a couple of other places and all say there is nothing they can do to help. So the best I can do is turn to others that have this terrrible condition to get suggestions to give his doctors.

He is in good health otherwise, does not drink, smoke, do drugs (is 62) does try to do water PT three times a week. He is bound and determined to get better but only seems to get worse. He was at the end of the rope yesterday and his phystrist, myself and the ER doctor are concerrned that he may try and harm himself.
Again, thank all of you for you help. With treatment it is all trial and error but at least I have a few more suggestions to look at.

Thank you
carrol

Dear Carrol,

Please take care. It's not good when you write that you are concerned that your friend may harm himself. I hope that today is a better day.

With all of the meds that are out there, it seems that perhaps there MIGHT be a combo that will work for him with the burn and the itch? And please consider, as others have mentioned above, that there could be a reaction to meds going on.

Please do not EVER EVER EVER give up. BTW, Neurontin is often used for burn pain in really high doses. Even though Neurontin and Lyrica are in the "family," he may find that one is very different for him than the other.

Keep in touch and let us know how you are doing.

XOXOX Sandy

I believe there are medications to relieve itching.

He might consider an emergency visit in a phychiatric hospital. It might be hell in his condition but I believe the success rate at getting people stabilized is pretty good. I would consider plan A to be finding the right mix of medications.

I think I was able to do better when I finally accepted the idea that I might never get rid of this thing. I still fight it tooth and nail but acceptance is important.

If he has a computer you might encourage him to come here.

Well it was back to the ER yesterday as the home health IV did not get it together to bring out IV meds for pain control.

ER doctor did write new RX for itching - will try it. No new meds have been added lately (he seems to get this itch with a flare - and this one has been major - going to the head/face/chest/neck/back).

Yesterday it looks like it has now flared in the left lower leg and foot. It is bright red/hot - with small and large water blisters. The R leg and foot have little swelling and all the great CRPS colors.

The ER dr and wound clinic had no clue as to what to do for the left leg/foot. I could wrap the lower leg - but no way can touch his feet or wrap them (and doing the leg would only make the foot worse).

I guess I am just venting - this is such a puzzle and I feel like there is not much I can do to help. The only good thing is that all the Dr's, nurses, medics and PT/OT therpaist are getting some good training on RSD/CRPS.
He is going throught the acceptance process with the help of a phycarist and a clinical psychologist.

Again, thank all of you for your help.