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 08-13-2013, 06:31 PM #1
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Default crps,scs still new too me,how about work,how u guys deal with it

since my surgery on jan 13,to place scs implant i had not been able to go back to work, so many reasons, discomfort,lack of physical therapy which i received but for my foot not my surgery site which was my back and buttock, as i mentioned before my back is now my big issue but return to work is something that still pending,happens that my company rules are according with my manager "come back completely fine with no restrictions other wise take ur time" i live in california and according with labor laws if restrictions are order by your dr and the company agrees if fine but for my now is a not yet, my jobs require stand and walk for 8 hours at course some breaks but my dr orders now are avoid bending,pulling,carry,stand or walk , sit down only and there is no job for me that allows me that, so i'm on extended leave and still waiting for re evaluation and future therapy also everyday afraid that one day there will be no more hours available for me,crps changed all my expectations and every day i feel worry about all, i guess is normal after you get used too but honestly,i don't see how to get use to this conditions, i was so active and independent and now pain gets me,sorry i guess this is my only way now to understand and fight this battle,i learned a lot from all of you and i know we are so many more living in the shadows by not knowing whats wrong thats make angry and sad,hope one day a cure can be found because we all deserve to have our lives back,take care
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Old 08-14-2013, 01:57 AM #2
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Oh man , you're not kidding! I've been in limbo job wise since January. I really don't know what to do. I need to put my ofwn post out there for advice. I have CRPS/RSD in left hand and arm and my mobility is affected so I don't have dr. release to go back to work. I can't type except with one finger on left. My workplace requires me to conform to strict standards of speed, accuracy and schedule adherance (ie: scheduled breaktimes) to maintain goals. I have grieved over missing my colleages and my work so much I feel I have lost that identity. My disability through work requires me to seek S.S. disability so that is what I've done. Never in a million years thought that would be me.
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Old 08-17-2013, 10:29 AM #3
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Me too.... what a club it is....

I had to give up my job after 6 months of going on and off sick because of my knee, most of that time was post-op and when it was clear things weren't getting better any day soon, I had to give up. I was gutted. I enjoyed my job and was good at it, but it was all standing, walking and stairs - I just couldn't do it. I have never claimed benefits in my life either AZ-di, and still don't, but only because I've managed to start tutoring a bit and am holding out as long as I can out of sheer stubbornness. Stupid really, because we need the money now my financial input has more than halved.

I know there is nothing to be ashamed of by claiming a benefit you are entitled to. Goodness knows we would all love to work and be healthy if we could.... Try not to feel bad guys - I'll be claiming soon enough, my physio and doc have supported me, and I even got as far as filling the form in once and just didn't go through with it. I'm lucky, my husband is very understanding about it, but when money is really tight I know he thinks that bit extra would make so much difference....

This condition takes away so many pieces of us, and sometimes it can feel like we are just shadows in the background. But we should hold our heads up in life - no one who doesn't had this thing understands the courage it takes to get out of bed and face another day of this

Hope today is a good one for you.

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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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Old 08-17-2013, 12:19 PM #4
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I received both SCS's in June 2011 and only took a week and a half off from work. Had a revision and battery moved in November 2011, this time I took two and a half weeks off. The SCS's helped me work until the end of 2012. With having RSD in both hands, shoulders, feet, left leg, left arm and face (& now internal), I just could not do it any longer. My co-workers and bosses didn't get it at all, no one does unless you suffer with it. I pushed thru the pain for them and it made me worse, they didn't care about me at all only cared about the work I got done. My employers short-term and long-term disability insurance carrier denied my claim, so there was a huge impact on our finances. I filed and appeal last month so I should find out the final decision within the next week. I was a finance and human resource manager, there was no way I could keep up with that job...kinda need your hands for it I was advised by many to go ahead and apply for Social Security Disability because of the huge backlog. I applied in mid April, thankfully I was approved the first go around and should begin receiving benefits next month (5 month waiting period).

I am 46 and this is not where I thought I would be at this point in my life, that's for sure!! My husband is, luckily, very supportive. He sold his new truck and we used my 401k money to put towards refinancing our house. He is going thru gov't furloughs right now (1 day a week without pay), was supposed to be for 11 weeks but they just changed it to 6 weeks -yay!

Anyway, you need to do what you need to do to take care of yourself. I hated leaving work, because that was who I was. But I had to finally think of myself for a change. It was a high-stress job and with that stress being gone, it helped me so much!

I wish you all the best!
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Old 08-21-2013, 01:12 PM #5
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I had a SCS implanted about 4 years ago. It took me about a year+ for the battery, etc to be healed. The stimulator is not a cure all by any means. It may be worth it for you to be reprogrammed. They might be able to find a better setting that will cover a larger area. I needed to do that multiple times - especially in the beginning.

I can understand why you're not able to be on your feet all day. To this day I'm not able to do that with/without the stimulator.

Good luck.
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Old 11-27-2013, 10:36 PM #6
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Default still waiting on good news,crps is driving crazy

Hi everybody and happy early thanksgiving,even though with our conditions sometimes we have nothing to be thankful about but we got bless with be alive,suffering,but still alive.
My case for those who had read my pots is been going on not for too long is only about 2 years, is a workers comp related injury which had limited the does and don't aloud by my insurance,california laws.well i had a 3rd or 4th revision from my pain management md with same result,nothing wrong with the surgery but the pain on my buttock area where my generator is had been increasing day by day,i went to emergency room expecting to be treated for the awful pain i had and to try to obtain an X-ray or at least an X-ray order but no luck,the dr who saw me did know have and idea about my condition and i swear ,i almost bent myself on the floor and beg her for and X-ray telling her she did not need to explain what is on it just gave me the image and i will take it to my pain management md but no luck she sent me back to him,he saw me again and we talk about what happened and his response was still well i never had a patient who complain or have so many side effects we have to wait for the ins to authorize to reposition your device and thats it,well i went back to my foot specialist and to my lawyer and requested a 3rd independent evaluation on my whole case because my dr is leaving me with the same option for many months,guys, i work for a company which is also had a union contract which gave me only 15 months on medical leave and my review will be in january 2014 thats mean 1 year already going back and again with no results,gosh,i never though in my life that i will be in this situation,I'm only 39,not been able to go back to work because my manager does not aloud me to comeback with restrictions and that is far from happening,soon i will lose my job and that scares me,please,anyone out there must had the same case or similar case,please,give me any advise,i can see clear now but just start to feel angry about the whole situation,th crps on my foot which had no carlidge is control with the scs unit but that generator created a whole new scenario,i'm able to walk and stand more since january 2013,i can go back to work with same light duties i had back on 2012 but some how the company changed their point of view and stop me from coming back,i'm desperate now i see like i said before no ending to this long road,hope someone can gave an advice and how approach the situation,i don't want to loose control of my life and condition,but is so hard to think clear when your life is surrounding with darkness and no clear answer,i one my job i know we all do but i can be patient when i feel that everything is falling down,thanks for your help and support i hope we all can said one day that we won the fight against crps,thats my dream thanks for listen (reading) that meant a lot (sorry for my missed spelling,english is not my first language but i appreciate all your effort to understand me,i guess pain and love don't recognize any differences) love and blessings to all.
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Old 11-28-2013, 09:25 AM #7
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I had a spinal cord stimulator years ago and it only helped the pain in my left foot.

RSD since August 2005 currently it's in my right foot, right leg and my butt. Originally it was only in both feet. SCS done in 2006 but out the same yr.

I deal with it by preventing the pain. So I spend every second laying down in my bed. If i'm home that's where I am. Pain is the only symptom I have so I can physically walk but off course the pain is always there....so I don't. I have a bad back so that's yet another reason why I have to stay laying down. I had to have something to do so I learned to knit and crochet. That's what I do now Otherwise I would be bored to death. I also try to remain positive because there are so many bad things (pain) in my life.

All we can do is deal with what we are given..........one day at a time.

Feel better soon!
Heather
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RSD since 8/2005
Originally in left and right foot
Spread in 2006 and Jan 2014
Both legs, arms.
Chronic pain going back to 1992

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Old 11-28-2013, 10:19 AM #8
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I'm so sorry for all that you are going through.

My CRPS was the result of a work related injury so it was work comp too. Unfortunately I live in Illinois and all states have different laws for work comp. The best advice I can give you on that is to find an attorney. The do not charge any money up front and there is a cap on what they can get from any settlements or awards from the court...they are worth every penny. The laws are very complicated when it comes to work comp and your employer and work comp will LIE to you, try to trick you into saying or doing something that can result in their denying you benefits or not paying what is owed...they WILL take advantage of you and try to get out of this by paying as little as possible on your case until you are so frustrated that you just give up. So get a lawyer who can explain your rights and step in if/when they are violated.

I don't know the laws in California but I know that in Illinois...if you are released to work (even with restrictions) and your employer makes the decision to not let you back to work then that's on the employer and can't count against you as not being at work. If you are willing and able to perform your job then that's all that matter. The tricky part is whether you could actually DO the job (even with restrictions) or if they would have to make up busy work that's not actually part of your job. You have to be able to perform the primary functions of your job...doesn't mean you have to be able to do EVERYTHING but you do have to be able to perform the primary functions of the job. If they would have to make up busy work...then that means you are not able to do your job and still need to be off work. It's a very fine line and confusing and frustrating as all get out. One of many reasons you need a lawyer to fight those battles for you.

Regardless...if you are still off work because of a work related injury (even if you lose your job)...work comp still needs to pay you while you are unable to work (so long as that decision is based on a doctor's note stating that you cannot work OR your employer's decision that you are not able to perform the primary functions of your job and not just because YOU think you can't). So you shouldn't lose income even if you do lose your job...but that's ANOTHER reason you need an attorney to advise and protect you.

The doctors...well...unfortunately we can't MAKE them do anything. Especially when dealing with work comp and having to wait for approvals and authorizations for treatments...it slows everything down and makes things frustrating for both patient and doctor alike. I've been where you are now...and I know that what I am going to say is hard and difficult (maybe impossible) to do...but you have to relax and not stress out over the time these things take. All you can ever do is do everything in YOUR power to make your case about what you want/need. After that...it's in someone else's hands and you cannot stress yourself out over things that are not in your control.

Take care of yourself...I hope that things start to turn around for you soon.
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