hmm.. I find this a tough question... my grandfather on my mothers side was born with one arm.. he built a house and drove stick. my other grandfather lost his leg in the military. he still walked every where and climbed trees and telephone poles. and each male in my family (self included) were born with a rare lower sacral spine disorder that created the opportunity for herniated discs. and up until RSD all males in my family worked harder than most... so I lay asking myself that question on a regular basis..here it is though . my grand dads did not suffer pain... the men in my family suffer and bear a lot of pain as we have a high tolerance for it. and we evolved past it to work through it. this is a pain I can not seem to find a way around and when I try to push through it it pushes back times ten. I try my best with what I have but yes unfortunately I am disabled. and even more so by comp. as if I try to do something a little extra on the better days I am held back in fear of the camera that might catch one percent of what my life has become and try to say I am faking.. if you as me its criminal , they steel any chance of a moment of normalcy. and live in fear. yes I am disabled and I hate it!!!!!

Probably most with RSD have an impaired enough level of function to loosely be labeled disabled. SS has very specific criteria, and so some will qualify for benefits and others won't. I take advantage of the opportunity to board early when I fly (I also wait until everyone exits the plane) since being jostled and touched is very difficult (and especially so when I'm already flared.) I've only had a few occasions where I've been asked to justify why I'm doing so.

This is one of those issues that it can be helpful to discuss with a therapist. I believe I delayed getting SSDI approval because I wasn't very realistic about my prognosis. It's hard to stay positive about working towards the goal of remission while simultaneously fighting for permanent disability. I tried to adapt, so that I could even work PT, but my reality is that I'm not able and haven't been in several years.

For painman regarding WC, I've never been particularly worried. There is nothing that I will attempt that is inconsistent with my claims. When in doubt, discuss activities with your doc. I'm sure I've been filmed over the years, but I've never had a problem. I don't know why anyone would bother with WC fraud, but then I made good money before being injured and had lots of opportunities ahead of me. Lots of people do exaggerate their injuries... Don't get overly paranoid. Don't ride a motorcycle or a jet ski (too dangerous with RSD anyway), don't go on jarring rides at an amusement parks or enter the mosh pit at a concert. And if your doc ok's certain activities and you're still worried, ask your attorney's opinion (I think you have one, right?)

I was always sort of creeped out my the idea of someone watching/filming me. Not because I ever did anything that I said I couldn't do (because I couldn't) but just that ick factor of someone watching you without you knowing. I always kept all the blinds closed in the house just in case because I will admit that I was a bit paranoid about this. But if you asked me whether I thought someone actually was watching I would say that yes...someone did watch and film...they just never got anything on tape worth using because I wasn't lying. But in terms of recovery, I made sure that all the therapy I did was always in line with what the physical therapist was having me do and I kept any activities at home in line with that. This not only took care of any work comp concerns but also my worries about suffering a major setback.

Your lawyer will probably tell you to be very careful and overly cautious about the idea of someone watching you...and my experience with doctors was usually that they usually said that if you CAN do something then do it but if it's too painful then don't...which is frustrating because it's painful all the time. I found that working with my physical therapist (the one who came to the house) was the best because she was monitoring my physical progress and could see how quickly I fatigued, the tremors, monitor my heart rate and BP, etc. I felt very safe that she was making sure I wasn't physically causing myself additional damage by pushing too far too fast while it was on me to monitor the pain levels and know when enough was enough. It's a delicate balance but I really highly recommend at home physical therapy because it didn't require any additional equipment and it was easy for me to do all my therapy on days when the therapist wasn't there (she would always tell me what activities I should only do when someone else was home with me).

WC does enough to hold us back with recovery (at least in my experience with delaying approvals and treatments)...don't let them hold you back with one of the few things that we can control (the using it or losing it). I agree with LitLove in that as long as you are doing activities with the full knowledge of your physicians and they still are providing the same restrictions to work then you will be fine. Don't blame you for being paranoid though...it does happen. Work comp can stop your benefits and even if several months later a judge orders them to pay up...that's still several months without benefits and how are we supposed to survive without them? WC did this to me several times (though each time without ANY reason) and the weeks or months I went without benefits were incredibly stressful and what do you think happened to my RSD during those times? Yeah...not good. So do what you have to to protect yourself from WC but also don't let them hold you back from doing everything you can to regain that function and improve on the medical front.

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?

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.

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.

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.