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Old 02-04-2012, 05:51 PM
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
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Originally Posted by lema56 View Post
Yes, i have tried the TENS unit. i actually have one of my own. ( excuse the lower case letters, typing is difficult since i only have use of my right hand). i cannot use my Tens unit on my hand because, it is just too painful. i am already in enough pain, and evenjust the little things make the pain worst. anyone else with rsd, sensitive to the wind, hair touching you, or even the sun and heat? i know everyone is different, but rsd is SUPER hypersensitive. i do however, have some lidocaine but not in patch for, so the rubbing is too much. i usually only put that on my shoulder and back, or upper arm, where my rsd is not so bad yet. maybe i should invest in the patch kind? heat definately does not help. it just shifts the pain to being an intense burning pain for hours on end. what are some anti- inflammitory meds? i actually have none of those. and yes, vicodin and gabapentin and cymbalta do nothing for the pain, but i do have to admit that cymbalta helps with my anxiety and depression, and they all get me to sleep, and that's about it.

thank you alt and catra so much in helping me through this long and tough time.
The anti-inflammatory meds that I have been on are meloxicam and celebrex...meloxicam worked best for me. I think the brand name of that one is called mobic...both are perscription meds. There are over the counter ones though like aleve that you might be able to try too...but I don't know if that would be strong enough or not. Everyone is different so trying different ones may be worth a shot. There's also an anti-inflammatory cream that I have called Voltaren Gel. It doesn't help a lot with the pain unfortunately but when my hands swell up really bad I will use it after I soak them in warm water for a time (I have different routines depending on what sort of flare and how bad of one I am having).

I would also recommend trying Lyrica in place of the gabapentin. If it's not helping anyway then you may as well try something else in place of one that you are on. Eventually you may be able to find a combinations of meds that works much better for you. Just don't let the docs put you on a bunch at once or change more than one at a time. If you do that you will never know which ones really help, which ones don't, which ones cause side effects, etc. And as I said before...the tramadol in place of the vicodin might also be a good place to start.

I know it can be hard to go in to the doctor and suggest changing meds...but I would make it clear to them that you are just not getting the relief that you need from your current meds. Let them know about some of the recommendations you have gotten here, discuss it with the doctor (as opposed to demanding you be put on these other meds) and come up with a plan together.

Yes...air movement of any kind sends me into a really bad flare...cold air being the worst. For this reason I have sort of forced myself to wear clothing over my RSD areas. The clothes themselves hurt but the pain is less from that than if even the slightest breeze or anything touches me. The pain you get from heat is what happens to me with cold...the heat for me thankfully provides some small amount of relief. Have you and your physical therapist tried any desensitization therapy? It took me a long time to tolerate having things like clothes touch my RSD areas and I still can't handle much, but I have slowly been able to build up a tolerance to things touching my skin which is great prevention from things like cold air and stuff like that which makes my pain SO bad no matter what I do.

Nothing with RSD is fast...seems like everything just takes time and enough stubborness to push through and commit to the different treatments. Immobilization is one of the worst things you can do with RSD so it's important to keep moving your RSD areas. I know it hurts more to do the physical therapy (that's why it's important to try to get at least enough pain relief to function) but if you do it every day then eventually it does help the pain. When I got the RSD in my hands and arms (both of them) my physical therapist said that it would be good for me to really push myself to do activities with my hands like puzzles and (this was my main hobby prior to getting the RSD in my hands) cross stitching. It took a long time before I was able to do either of these activities for even a short amount of time...but the more I use my hands the better the function.

Unfortunately a lot of it is learning how to cope with the pain. I hate to admit it but a lot of the things that I have been able to do are the result of learning to cope with the pain better as opposed to it going away. It's always there and it is brutal...but that is now my "norm" so to speak. I feel much better mentally now that I can walk again (I was stuck in a wheelchair for MONTHS not able to stand or walk at all) and that I can use my hands. That I can do things for myself again instead of having to rely on everyone else.

But the best thing you can do for yourself is to not give up and to do the physical therapy EVERY day, thoughout the day. I don't know what sort of exercises you have for physical therapy but even something as simple as just flexing your hand to keep it moving. Start with just doing a couple and as you progress work up to doing longer sets, more difficult things, etc. I know how much it hurts, but when it would get bad I would just remind myself that I was fighting this things and it was not going to win. I will not let RSD take my life away from me.

If there's anything you can find to help distract you from the pain...that's always good to help me cope. The pain never goes away of course...but sometimes listening to music or listening to a good audiobook...these things help when the pain is really bad. Someone on here recommended using headphones, especially when there are noises or vibrations that are causing my flare and this has been helpful. A little thing...but having the headphones in my ears helps me cope better because other things do not get in. Not sure if I am explaining that well...but even just laying down with the headphones in and trying to lose myself in either the book or the music, focusing on that instead of the pain, can help me get through some of the really bad moments. It's so easy to get you thoughts stuck in a vicious circle where all you think it, "The pain...why is there so much pain? This isn't fair. Why do I hurt so much?" Etc. Just breaking the cylce of those thoughts can help sometimes.

I really am so sorry that you are having such a hard time. I got RSD when I was 25 (now 28) and it started in my left ankle and has now spread to my upper body. Don't be discouraged if you try something and it doesn't work...we are all different...but if you keep trying you will find something that works for you. There are so many members on here and I have been able to piece together little tricks and treatments and stuff from many of them to find things that work best for me. You'll be able to do the same...just gotta get that pain under control to make it possible for you to do the physical therapy and stuff that can be so crucial for going into remission and getting back to a "normal" life.
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