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 07-05-2012, 10:31 AM #1
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Post do you consider yourself disabled with rsd?

I have been having a rough time. I have rsd in my left hand, which has spread quite quickly up near my shoulder. My pain has been persistent, with very little help from meds. and pm treatments. And, because of the pain, stiffness, etc, I can't/don't use my left hand for anything other than stretching and therapy in order to minimize flares and gain my ROM, etc.. So, I consider myself in a way disabled. Do you? Let me know your thoughts.
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Old 07-05-2012, 11:25 AM #2
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I do. I don't let that hold me back from doing as much as I can...though I often have to go about things in very different ways than I used to in order to accomplish the same task. Everything requires so much effort and seems like such a grand process to do even the most simple tasts. There are, however, things that I just cannot do. It's frustrating sometimes (okay...ALL the time) because I can literally picture in my head the old (ie easy) process for doing things before and now I just can't do those things so easily. It hits me hardest now that I have returned to work and while I have so far been able to do everything that I used to do...it takes longer, is harder, and hurts like all get out. I find that I need help to do many things that I never would have asked for help fo before.

So yes...I would definitely classify myself as disabled. I have a disability...simple as that. It doesn't define who I am and I don't let that word get me down. Disabled doesn't mean dead. Everyone with this condition has different levels of disability based on what they can and cannot do...so we're all a little different. I personally believe in accepting the way that things are and working through it to figure out how to survive and make the quality of life as good as possible for myself. I have to use a walker...sucks...but there it is. I don't let that stop me from doing as much as possible. It's just a tool that helps me live my life better.

I'm sorry that things have been going rough for you lately. RSD is such a terrible monster. I hope you find some relief soon.
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Old 07-05-2012, 03:27 PM #3
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I would consider it a disabilty. With no use of any limb its hard!
i have it in my right hand (which was my dominant hand) and i cant use it for anything anymore. MY therapy has been so slow. Most focus on ROM which is decreasing, and trying to desensitize it some..

i know my left hand is pretty useless still, i am still learning how to do everything, like a baby all over again. not to mention how tiring being in pain is. Plus i cant drive very much anymore.

I am pretty good at handling pain, and not showing it all the time (fortunantly my family is at school or work all day) but the atrophy and the disabling side is so hard
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Old 07-05-2012, 06:34 PM #4
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I agree. I used to walk three times a week, do water aerobics, step aerobics, etc. and now can hardly walk across the floor. Mine started in my rt arm, went to my left arm and is now in my rt hip. When storms approach, I feel like someone has shackled me with lead weights. I have come back from no mobility in my rt arm (lost use of it for 8 months) and it felt like a hot iron when material would go across my hand. It takes time and endurance, but it is possible to learn to live with it. Keep working and trying and use what you can regain in mobility. It is difficult, I understand, but keep going. The thing that has kept me pushing forward is this: "Use it, or lose it." Take care. Prayers.
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Old 07-05-2012, 08:52 PM #5
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Yes, I am disabled. I don't like it, don't want to admit it. But yep! there it is.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 07-05-2012, 10:54 PM #6
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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!!!!!
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Old 07-06-2012, 12:50 AM #7
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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?)
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Old 07-06-2012, 09:41 AM #8
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Quote:
Originally Posted by painman2009 View Post
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!!!!!
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.
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Old 07-06-2012, 11:53 AM #9
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Thank you so much for all the replies. I just wanted to make sure that I was thinking on the right path about disability or not. I wanted to make sure that I wasn't being irrational, or if other people were right that I can do more. But, I feel I am thinking right.

I also wanted to know if you guys go to psychotherapy? If so, how is it working for you?
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Old 07-07-2012, 01:46 AM #10
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Quote:
Originally Posted by catra121 View Post
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...
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