Complex regional pain syndrome or reflex sympathetic dystrophy

@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.

Hi @jacquelinedei, thanks for the tip about the book - I hadn't heard of it before. I'm sorry to hear how much pain CRPS is causing you. I have it, too. Can you get nerve blocks, acupuncture, biofeedback, or a pain psychologist, covered? Those are things I could recommend. Above, we were discussing neurostimulator implants, too. I haven't tried that myself. I find some relief wearing a $20 Isotoner compression glove (CRPS is in my hand & arm), and when my arm gets too cold I use an inexpensive electric throw - it was a lifesaver this winter! I hope between all of us, somebody has an idea that will help 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

<br><br><br><br><br><br><br>Dear daybyday: Thanks so much for the quick response about our battles with pain, pain, and more pain. There is a website you can go to for information (and also get a DVD  ) about neurostimulators. It is Medtronic.com, the name of the company, of course.<br> My implant is a Medtronic, and they offer a lot of information on neurostimulators, including info on self-help groups. For more information, go to tamethepain.com/help or call 888--430--7246. I am sure you will be one of the lucky ones, daybyday, to get great<br> relief from spinal cord stimulation. The surgery itself is done under local anesthesia with heavy sedation (at least in my case) and it isn't bad at all. Pain is torture and can truly ruin your life. Here's hoping you find the pain relief you deserve so badly.<br> Please let me know how you make out! My co--pays were pretty stiff for the entire process, so I also had to delay having the permanent implant put in. Anyway, I think you are on the right track, so thumbs up on your crusade to get help!  Best Wishes, Peggy <br> P.S. I love your user--name!<br><br><br><br><br>

@JustinMcClanahan Have you heard of any one having it in there face and both eyes. The doctors do not know what they can do for me right now. I just like some relief from buring in my eyes. I also settled in my lower right rib cage. Really hard to do anything because some part of your body hurting bad.

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