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Apr 17, 2017 · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

@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!

Apr 17, 2017 · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

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.

Apr 17, 2017 · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

@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.

Apr 17, 2017 · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

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!

Apr 17, 2017 · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

@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!

Apr 15, 2017 · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

Hi @contentandwell – RSD or CRPS (same thing) is considered a rare disease, so it’s not common to develop it. The most common trauma associated with it is a wrist fracture immobilized in a cast (although people do develop it following other injuries – mine was the wrist scenario, but with others it could be a leg injury). Still, it’s a rare disease. RSD/CRPS symptoms & signs are typically: pain out of proportion to the injury, that doesn’t go away as the injury heals, as well as hypersensitivity (some patients can’t tolerate a breeze on their skin), swelling, lack of mobility near the site of injury (my hand froze into a claw at first), muscle and bone loss, and noticeable differences between the affected limb and the healthy limb in skin color, temperature, sweating, hair and nails. If you are having persistent pain in the knee you had replaced, but it’s not severe and you don’t have some other symptoms, chances are it’s not RSD/CRPS. If you do have a lot of the symptoms, ask an orthopedic surgeon you trust (maybe not the one who did the knee replacement that hurts) – an ortho should know what to look for. Re: medications, so true, we all do react differently. Interesting that you had such different reactions to the same drugs! I hope your second knee replacement goes well.

Apr 14, 2017 · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

Yes! I also got tiny white dots on my hands sometimes – do you? Really itchy. Thankfully itching is a lot better but the skin still gets rough. Although, my skin is usually very smooth & shiny on the palm now, very weird-looking. I use a lotion called Cera Ve – it’s at Target, Walgreens, CVS, etc. It’s not cheap but you don’t need much so a bottle lasts a long time (I only use it on hands). It helps with the roughness, not so much with the itching. Putting the hand on something cool, or in cool water, helped me with the itching.

Apr 14, 2017 · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

If I go ahead with Cymbalta I’ll let you know how it works. Still deciding. Wouldn’t it be great to find a drug that would get rid of the pain & stiffness?? It’s good you’re getting OT, my doctor says it’s the most important thing for treating CRPS. I can’t go to OT right now but still do the exercises, if I don’t my hand stiffens up. The fine motor problem is still hard for me, I practice picking dry kidney beans and marbles out of a bowl of dry rice.