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Originally Posted by Kheldar
Baclofen and Carbamazepine combo not working... Gods the meds we have tried over the past 25 months, wow. At least this neurologist has stuck with me, ONLY doctor that hasn't dropped me after 3 months or at knowing my diagnosis... Going to also check into long-term pool therapy, that water contact i can handle. Gets now to the point i don't even change my shirts often or remove jackets both for pain from contact and the needed warmth.
gave up on my tens units totally now, can't handle the various modes still. and they don't do squat for spasms in the places i can handle. my heat packs, i have to boil then wrap before i use, the weight gets to be unbearable.
Fun thing, we automatically reach for and try to protect our injured areas, i am getting to the point a lot where i can't even handle the lightest touches there. Sometimes i can, most times i can't. Is this also normal?
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Unfortunately it is normal...sorry. For me I have had to learn to tolerate the pain of things touching my RSD areas (I can't very well walk around topless all the time...lol) and for me it is about the lesser of 2 evils. Yes...the clothes hurt but on the flip side the pain of even a slight breeze of cool air sets off a flare that is so bad I cannot stand it...EVERY time it happens. So I stay covered up on top and if I need to go outside I will put a scarf around my neck to keep that covered (I have RSD in my neck really bad too). If it's really cold out and I will be out for longer than just taking my dog out in the yard I will also put a Lidoderm patch on my neck with a disposable heating patch (the kind you can get at the pharmacy OTC) on top of that with the scarf over.
So much is about the lesser of two evils. But the disposable heating pads are nice because they are much lighter than the microwave kind and don't hurt to wear. Thermacare ones are pretty expensive but there are generic stick on versions that are much cheaper.
Just be careful of over protecting your RSD areas...the more you immobilize and protect the worse things get. There are desensitization therapies out there that can help with the sensitivity. For me...I just made myself get used to things by forcing myself to get used to the contact and slowly increased the amount of contact until I was tolerating fairly normal things. The pain is still there but I guess I have just learned to cope with it better...sort of created a new sense of "normal" so that I can still function despite that pain. This took about 6 months or so and is still something I work on every day...always trying to push that limit just a little further. It's slow progress but RSD is a use it or lose it sort of thing and the more we protect and immobilze the worse things get.
Have you tried (I'm sure you have but it doesn't hurt to ask) just putting the TENS on a constant setting as opposed to one of the different pulsing or burst modes? I can't handle the ones that pulse or burst but I find if I set it to a constant setting and then just turn it up if I start to get used to the setting...that works best for me. For some reason when it pulses or bursts at all that just aggravates the pain instead of helping. Crazy...you'd think it would help regardless of the setting type but I guess it does really make a difference.