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 07-11-2009, 02:13 PM #1
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Default Are you working despite your RSD?

My doctor doesnt believe I can resume my career, in fact, he thinks I could probably only work sparingly- and at something I enjoy.

I want to know if others manage to work despite the pain and poor sleep we endure. I am basically ruined financially as a consequence of my RSD, lost my career, home, etc. And have been contemplating trying to work despite my doc's opinion.
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Old 07-11-2009, 03:15 PM #2
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Hi Steve
So sorry to hear about your misfortune,,I know that ive got to keep moving,,thats a big help on remission and success rate,,and it also keeps my mind of of it,,,do what you can ,but dont over do it,,I;m no dr by far,but ive seen people recover and live long active lives when they were told they wouldnt ever walk again,,,live another year,,,ect,,ect,,God is the one who is in charge,,stay in prayer,,what he says goes,,,i will lift you up in prayer,,,,,with God,,its a "pan out" system,,,believin Christ Jesus and everthing things seems to pan out,, proverbs 3:5-6
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Old 07-11-2009, 03:21 PM #3
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i've been on disability for the past 3-4 years, it took me about 2 years to get it. being denied like 3 times till having to go in front of a judge. last fall i just started going back to school. then after my infusions i've been in remission, so i was full time in school spring semester, and at the 2nd half of it began working a low key job at a hotel to see if i can handle it. so far so good.

if i wasn't in remission however, and not off all the drugs, there's no way i'd be able to work almost full time and be in school full time. being in school part time was hard enough.
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Old 07-12-2009, 12:19 PM #4
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Thanks for the replies. Not having a job to go to- and not having money has been really hard. It doesn't help that some family and friends doubt my diagnosis or feel I am being lazy.
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Old 07-12-2009, 02:06 PM #5
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I have been out of work for almost 2 years now, have been told that I should not go back to work yet. My Doctor at the pain clinic is hopeful that someday I will be able to return to work. One thing I would suggest is even if you can't work volunteer some where. It gets you out of the house moving and for a great cause. Make you feel useful and give you something to look forward to. It does not help financially but mentally and emotionally very helpful! Best wishes for a pain free day!
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Old 07-12-2009, 02:08 PM #6
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I don't know if this will help, but this is my work story...

Pain meds didn't really help me... So I don't take a pain med daily. I do take topamax, norvasc, namenda, and use lidocain patches. I have tramadol, vicoden, vicuprophen, tylenol 3, duragesic patches if I feel I need it. But, they don't help that much so I usually don't use them.

I hurt if I am at home, or at work.

I have not stopped working. I have not missed any work due to RSD. I work 2nd shift, so even days I had Stellate Ganglion blocks, I had them early in the morning, and went to work that night. Working 2nd, I can go to doctors, therapy, massage, etc. in the mornings - even make the 3 hour drive to the Cleveland Clinic and get back before work. It amazes me I have had this crud since 2001 and not missed work because of it. Well... I guess I did miss a few weeks years ago, when I broke my foot and was on crutches and couldn't work... but as soon as I could I was right back at it.

I won't say it's easy. I might be better if I didn't work. But, I am a single person, and my elderly Mom lives with me. I don't have any other income. I don't know how I would get by if I didn't work, or how I would get the meds I need. I have been terrified in this economy that I would lose my job, because I don't think I could get another one doing what I do.

I work at a printing company, and I do computer graphics. It's creative, although deadlines can be very stressful. I've been in the printing industry for 30 years.

I have RSD in one calf, both feet, pretty bad in my left shoulder and upper arm, my left hand, my upper half of my back, my neck, part of my head and face. It comes and goes in severity.

I can do a lot of things - but it still hurts. There are days when I sit at my computer with tears streaming down my face as I work, it hurts so much. I'm pretty stubborn though, and like I said, it would hurt that much if I was home or at work, so I figure I may as well work.

Recently I adopted a dog that I am training to be an assistance dog. I used to train dogs in obedience, and so I am able to train her myself. It has been good for me to work with her. Most days I won't need her, but on bad days, she will be very useful. I am not sure yet how my work will feel about me having a service dog. They have been uncooperative about giving me a handicapped spot, so time will tell.

I love my work, and I can do it... so I have tried very hard to stay working. Keeping my mind busy had helped me. If I had to be on my feet, or do something physical.. .well that might be different.

Namenda has helped... I was getting pretty foggy there for a while. Then fmichael here mentioned Namenda. I tried it and found it has helped. I only get about 3 hours sleep a day, although I "rest" a lot more than that. The Namenda has helped a lot with feeling alert and "sharp" again - that RSD has a way of taking away from a person. My job requires quite a bit of math, and a lot of remembering details and quick recall about this job and that job going on press. THe longer I had RSD, the harder it was for me to remember and to figure things out and trouble shoot. The Namenda has really helped that. A side benefit for me is that it seems to make the pain meds more effective when I do take them.

Edited to say I should mention that my RSD was not caused under worker's comp or any accident that I have to worry about approval for treatment etc. By staying employed, I get pretty good coverage of whatever the docs want to try medication wise, or therapy wise.

Good luck to you... and hope you feel better soon.
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Old 07-12-2009, 05:46 PM #7
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Dear Steve,

I have worked FT since injuring myself 32 months ago (except when recovering after 2 shoulder surgeries), until just recently, when my head pain go the better of me and I decided to take a LOA to deal with it. I hope to find a treatment that will help so that I return within the next month or so.

I have become increasingly depressed since I stopped working - I think work was good for me. But I had no more sick time and little vacation time left because I had used it all for doctors' visits, and my head is bad, and my doctor felt that it was time to try more aggressive treatments. I need to be available on a daily basis whenever they want to see me.

I can totally understand your desire to work. Can you try to start following a schedule everyday to see if it is do-able? For instance, maybe set the alarm and get up each morning at the same time. I like the idea of volunteering (I'm thinking of it myself as I sit here now for 3 weeks with not a lot to do everyday). Maybe a part time job to start out with would work better than FT.

The best of luck to you. Sandy
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Old 07-12-2009, 09:30 PM #8
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hi steve and welcome..

i have full body plus organ involvement rsd and i do work about 4-6 hrs a day .. i work for my husband and father in laws company .. and i do very minor things.. but this does help my attitude etc.. i also have 2 girls 9 and 6 they also keep me goin.. i have a pump that i have fentanyl in that kinda keeps me goin.. so yes its possible to have rsd and do some kind of work.. it may not be like before but my motto is keep moving no matter what..

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rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




please check out our website to help bring awareness to RSD!


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Old 07-12-2009, 09:54 PM #9
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Default I still work too but.....

I am still working too but now I have to use a wheelchair to get around the place..Lucky for me I work in a nursing home so everything is wc accessible. I know I would go nuts if I couldnt work. Sometimes I think, we have to alter or change jobs all together!

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Old 07-12-2009, 09:55 PM #10
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My job is as a freelance writer. Since I got rsd I couldn't work at all. My career when I got this(knee injury at work 6 yrs ago) was a cook. I couldn't do it after rsd for sure.

I've been unemployed since 2003 when I got hurt and then rsd. I don't qualify for anything because I didn't have enough work credits for disability and hubs makes too much money for any other help. It took me awhile to find the right door, but being a writer is great. I don't leave home as my job is right here on the computer. I love it because I've always loved writing. I wish everyone could be a freelance writer and make money too. :-)

Hugs,

Karen
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