Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-07-2012, 09:54 AM #11
reluctant@thetable reluctant@thetable is offline
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Quote:
Originally Posted by painman2009 View Post
I had a hearing to try to get PT and john hopkins approved and this was just a cple of weak ago. NT THEY DID APPROVE IT now the carrier is requesting a hearing stating they have some evidence that will change my benefits.. the only thing I did was a little painting of my house. (It was a good day. pain levels around 7 but in lesser parts of my legs and feet. I suffered pain afterwards as Im sure you all understand y. Now my dr )neurologist) said to keep trying to do the maximum I can do and try to work through the pain. and this is what I do, my atty would prefer I do nothing all the time. If I do that then you might as well just shoot me in the back of the head now and put me out of my misery.. Im nervous now, and stressed. ever since I opened that letter from comp about the hearing my hearts in my throat and my pain levels in every part is escalating. its seems like a now win situation for me . top it off is I cannot sw my atty until monday so now Im stuck with this hovering over me like a lead cloud ready to crash down and burst my head open. My wife kept telling me to go inside, ( I should have listened then I wouldn't be stressing...
I can't imagine feeling like big brother is looking over you all the time. I think I would make a couple of points at the hearing-

RSD/CRPS is a disease that requires a "use it or lose it" mentality. My doctor said the most important thing is that I keep mobile. I have to push myself as part of keeping the disease from immobilizing me. One has to be careful to walk a fine line between doing too little or too much to avoid the spread of this disease. Does that mean I am "faking it" if I'm outside TRYING to do what I can to keep my life as normal as possible? No. It means that I haven't given into this terrible disease. Trying to paint my house falls under this category.

Additionally, just because you don't see my face grimacing with pain does not mean that I'm not in pain. Don't make assumptions.

Stress adds to the progression of the disease. The stress of worrying if your attempts at keeping mobile are going to be recorded by someone working for wc will only aid in the disease progressing in your body. Will wc take responsibility for that?

I would stress that the goal is to IMPROVE your health status. If wc recorded you painting your house and is trying to deny or decrease your benefits, I would point out that their actions are only working to DIMINISH your health status.

I would have a letter in hand from your medical doctor explaining that you need to do the activities that you can, when you can, for as long as you can to avoid further loss of function. With the letter, I would have your attorney point out that the letter came from a HIGHLY TRAINED, LICENSED medical specialist and not from a voyeur who recorded a brief moment of your attempt to keep from losing more of your mobility.

Can you tell by my caps that I am not happy with big brother?
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Old 07-07-2012, 10:44 AM #12
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catra121 catra121 is offline
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Quote:
Originally Posted by painman2009 View Post
I had a hearing to try to get PT and john hopkins approved and this was just a cple of weak ago. NT THEY DID APPROVE IT now the carrier is requesting a hearing stating they have some evidence that will change my benefits.. the only thing I did was a little painting of my house. (It was a good day. pain levels around 7 but in lesser parts of my legs and feet. I suffered pain afterwards as Im sure you all understand y. Now my dr )neurologist) said to keep trying to do the maximum I can do and try to work through the pain. and this is what I do, my atty would prefer I do nothing all the time. If I do that then you might as well just shoot me in the back of the head now and put me out of my misery.. Im nervous now, and stressed. ever since I opened that letter from comp about the hearing my hearts in my throat and my pain levels in every part is escalating. its seems like a now win situation for me . top it off is I cannot sw my atty until monday so now Im stuck with this hovering over me like a lead cloud ready to crash down and burst my head open. My wife kept telling me to go inside, ( I should have listened then I wouldn't be stressing...
How awful for you! I'm so sorry. It will be best to be prepared for the worst but you don't actually know what they have yet. It might be a video of you painting...or it might be that they had some specialist review your records and make an opinion about the need for physical therapy. I think reluctant has it right...see if you can get a written opinion from your doctor about the nature of the condition and the need for using it as much as possible to prevent further damage. Especially if you are being DENIED physical therapy by WC...you need to get that activity SOMEHOW. Better that it was in a physical therapy routine under the direction of a physical therapist...but without activity of SOME sort you will completely lose all use of your RSD areas so you do what you can when you can.

Well...reluctant went over it all really so I won't rehash it all. But please take care of yourself and keep fighting for your benefits. I have been in your situation where they deny treatments or put off providing benefits and it is INCREDIBLY stressful. In my case though they never sent letters advising me of termination of benefits...they would just stop providing them for no reason. Trying to get my lawyer to do anything was almost as stressful as having no benefits. Such a crummy situation. And then I started gettng collection notices from doctors they never paid...ugh...talk about stressful! But you do need to try and stay as calm as possible. Stressing won't make the situation any better so if there's anything you can do to try and keep your mind off all of this until Monday when you can see your lawyer then that would be best. I know...eaiser said than done...but try.
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Old 07-14-2012, 10:18 PM #13
Imahotep Imahotep is offline
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I can still do a lot and try to do what I can everyday. It's not much sometimes but if you concentrate on efficiency and get a little help for things that can trigger a flare you can still accomplish quite a bit. I try to get out everyday and when I can't, I still try to do at least one thing even if it's just the dishes. At the end of the week the list of accomplished tasks can still be pretty impressive.

I just try to stay focused on what I can do and avoid the things and situations that will lead to pain.
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Old 07-16-2012, 09:29 PM #14
painman2009 painman2009 is offline
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I want to thank you all. I feel a little better.(I never got the letter ) but my doctor called the carrier directly and said my situation is rapidly deteriorating . he is a good man my neurologist. I showed him all effected areas as he usually just does a quick exam and tries to get a quick ru;ing to have me go to a better qualified Dr. than he. and as he saw he had a couple of descriptive words fly out of his mouth. he documented what he saw and dx,d other areas. he is trying to get all my dr,s to call comp carrier. and the WCB workers comp board to get the appeal xnclld. It won't xncll but it makes me feel better knowing a doctor is trying his best to be on my side!. I will let you all know what happens. thank you all so much again.
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