I will have to try that on my hand but the worst part of the itching is on my head and face. That makes it really really hard to lay down on you head and sleep. Have you ever tried hydroxyzine generic name they use it for anxiety. I found that pain and anxiety feed each other so that one has help me out. I do not know if you are on any regular pain meds or not. I take hydroxyzine and pain pill middle of night when I wake up hoping to gain another one to two hours of sleep. To bad you can not get different insurance that will help pay for this. Makes person wonder what happened to affordable health Care act. Do you live in Minnesota or Wisconsin because Wisconsin you can get state insurance depends on your income.

@Hello daybyday! So sorry to read about your awful pain; I can empathize 100% and then some. I have suffered severe chronic pain my whole life, (I am 67) and most of those years were spent frantically searching for some relief. It was fruitless until a pain management specialist joined my rheumatologist's office. He changed my life. Fast forward a few years--I had a spinal neurostimulator implanted about 4 years ago. Prior to that, the pain doctor tried me on all the opiods without much success. The neurostimulator was implanted after 3 epidurals failed to help the pain very long. Getting a spinal stimulator is a drawn--out process. First you have to have to get a temporary one implanted for a few days. If it helps, you get the permanent one. Was it worth it? Sometimes it helps, sometimes it doesn't. I use a Fentanyl patch and take Neurontin, Tylenol and Requip for Restless Legs Syndrome. Our pain sources are different, daybyday, but pain is pain. Getting a neurostimulator implanted is certainly worth a shot for you. But I can honestly say I don't know if this implant really helped me. I don't think I helped you very much, but I had to share my experience with this gadget. Good luck with whatever you choose! Have a good week! Sincerely, Peggy

@daybyday, thanks for your response. I am quite sure that the knee that has been replaced just hurts because of other factors, as I said in my original posting. I discovered that the surgeon had used the same knee he has been using for 30 years! I am quite sure that in that amount of time there have been advances. The knee just hurts, pretty much always, but it is not excruciating. Its flexibility is really poor too.
I was just curious about RSD because I will be having the other knee replaced, probably within the next six months. It was scheduled for May but I postponed it because that knee has become bearable most of the time, thanks to exercise, and I just could not think of another lengthy period of inactivity again, so soon after my liver transplant.
JK

@bear420, you could try Cere Ve lotion on your face for the itching if the skin is rough and dry. If it's not, it probably won't help. I don't know what you could use on the scalp. Maybe aloe Vera? I did not know about Hydroxyzine. I have taken some other anti-anxiety drug, but it didn't help much, so I'll have to ask. Do you feel groggy the next day? I already feel foggy with Topamax. I wish there were drugs for pain that didn't make you feel that way. About insurance, I have it, it's just the deductibles are so high I can't use it. We just barely don't qualify for the state plan in MN. It is frustrating. By next year, we should either qualify or hopefully I'll get better and can handle FT work with benefits. CRPS can go into remission--fingers crossed that it happens for all of us!

With the topmax I feel pretty groggy in morning and sometimes I have to lay down take nap. I tried kidney beans and marbles and dry rice in bowl for therapy. That did not work out to good but I will keep trying. I do not have much of grip at all in that hand I have to use my elbow for getting in and out of certain furniture. Right hand most of time pretty much useless along with my left leg. Hydroxyzine also known as Atarax they use it for itching but also for anxiety. I do not have any side effects from that one and you can take up to four times a day.

Hi @peggyj4411 - thanks for the good wishes! I was sorry to read you've had severe chronic pain for your whole life. So glad you finally have a pain specialist now. I was lucky to be referred to one pretty quickly, and treating this disease (CRPS) early meant that I have more mobility than I would have otherwise (my hand is stiff but no longer a claw), plus I learned pain coping techniques along with getting medications, nerve blocks, PT & OT. I'm glad to get your input on getting an implant. I know two other people who have had mixed results - one gets relief but still needs medication, like you report, and the other didn't find it helpful. I'm not sure what will be next for me but I am a little nervous about an implant. I know I won't be having one this year due to my insurance (high deductible). I'm grateful for the ultra-cheap Costco pharmacy - they are much less expensive than the others. I learned that at the pain clinic. I hope you have a good week, too!

@contentandwell, I'm sorry I didn't see the earlier post. Yes, you'd of think there would be some advancement in knee technology in the past three decades!!! Maybe you have already discussed this, but have you seen a pain specialist about your knee? (Just a thought.) They see people for any kind of chronic pain. Maybe it would help you. I'm glad you can postpone the second knee surgery. I'd guess that relying more on the knee that bothers you now would lead to worse pain. I can't imagine what it is like to recuperate after a liver transplant. Just needing one must have been scary. I hope that is going well for you.

@bear420, I still drop things. Broke two glasses this weekend, in fact! Dropped one with each hand - the dominant hand is worse now, too. But I had no grip really until I worked with the rice/beans/marbles. It also helps to make my skin less sensitive. For pushing out of chairs, which I'm still working on, the OT had me push against the countertop, walls, etc. My doctor told me that it's kind of like when people have a stroke, all the things your hand won't do any more and you need to relearn. I'll have to ask about hydroxizine. I like that it's not giving you side effects. Thanks for that info!

I have pretty much have gone to none breakable dishes in my house. Dishes and glasses were getting a little to expensive. I am pretty much unable to do any exercise do to the losses of function in my ankle and foot. I have a pretty good limp when I walk do to that leg that throws me off balance alot. I have tried PT twice that has not helped at all. Can not use cane do to my right hand and wrist that has very limited function. These are part of the reason I joined the chat to see what is out there for our condition and what has worked.

@daybyday Thanks. It never occurred to see a pain specialist, I would not have thought they would deal with that type of pain. Most of the time it is bearable but it does hurt more than the knee that needs a replacement so when I finally do go I think I will talk to the orthopedist about a revision on that knee prior to replacing the other knee.

For me, the recuperation from the liver transplant was not that bad. I was pretty much 100% at two months and then gradually worked back into exercising. I do a lot of water exercise because it is so low impact and of course if I have a knee done I am land-bound again for a while due to the incision.

Needing the liver transplant definitely was scary but thankfully I felt better most of the time than many people do so I was able to put it out of mind most days and continue on normally. When I felt miserable though it was tough, and when that happened the statistic would be there in the back of my mind of how many people do not make it to transplant. That's what's really scary.
JK