not sure to go back to work or get on disability
 

If given the option not sure what to do. Pain for now is under control. Problems sleeping though. That weird gear like bone rubbing on bone which started a week ago. Have been off 3 months and long term disability kicks in at 6 months. So 3 more months for that. No ideal how long it would take for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) would take. So afraid if I go back I will have to start from scratch... Life would be easier if I could go back due to insurance for my family. Otherwise will have apply for Obama Care. So many decisions and all are a gamble not knowing how quick this will progress. If it doesn't get any worse I will be the luckiest woman on earth. RSD since Oct 4th,2013 surgery. Hand very stiff when I wake. My left hand occasionally feels stiff lately when I wake.

It's critical to get care early for this disease. There's a two year window during which most remissions occur. If you can work then that's probably a good idea but make sure you get all the treatments now.

The only treatment I am getting is Physical Therapy and taking Neurontin. Is the other things to be done at this stage. The Neurontin evidently is keeping away the pain. I do have slight runs of slight pain between my wrist and elbow occasionally. Not bad and doesn't last long. I have probably had this 2 months now. I wish so that I had never had the surgery for carpel tunnel.

That's a common feeling murgir, but you weren't to know this was going to happen, and it's not your fault.

I had to give up my job early in this game, but I started working self-employed because not doing anything was really really bad for me in all sorts of ways. I got pretty depressed and just was kind of hopeless. Working again has given me back a purpose and a sense of self-respect, as long as some structure to my life. I'd never think badly of anyone going on benefits who needs to, but if you can work at all, even just small amounts part-time, then I'd say go for it, and keep going as long as you can. If you can't work then just find some other regular dates/times for activities or hobbies, join a club or something. It's important to have more than doc appts to look forward to lol!

Take care and have a better day,

Bram.

This is a very personal decision for everyone. I know that I was miserable when I was off work...even though I know I HAD to be for a little over a year. I couldn't walk, couldn't drive, couldn't even take care of myself. But as soon as I was able to go back I wanted to go back. My pain levels are higher because of it...no doubt about that...but I am a happier person and my mental health is in a much better state since I have been back to work. I find it much easier to deal with the pain because I have other things to think about besides the pain (where as when I was home that was all I could think about because I couldn't DO anything else).

But every person is different. You will need to decide what will give you the overall better quality of life. If you cannot work (like I couldn't for a while) then you can't. You don't need to feel guilty about that. But if you can work...it might be worth the try. Make sure though that you are really ready to be back before you return though because going back too soon only to have to be off again for a long period of time...that can create some nastiness with employers. And make sure that if you need any accommodations at work that you ask for them (things like exceptions made to the dress code, heater for your office (if you have one), a chair to sit in if you need it, etc). There are lots of things that can make it easier to return to work and in the US there are laws in place to protect us. Employers need to provide accommodations so long as those accommodations don't cause a hardship to the business. Read up on the ADA before returning to work so that you are knowledgeable and don't let your employer try to pull a fast one on you by saying they don't have to do anything or whatever. My employer tried that and lost. But I'm sure a lot of people would have just given up after being told no and they would have gotten away with it (and probably have thousands of times).

Take care and definitely weigh this decision carefully to come up with what is best for YOU.

Murgir,
Glad you posted this! Yep, I'm going through the same "catch 22". I've been wanting to post a similar question myself.
I'm a little farther along so I'll share the highlights & if you want details I can share.
Ortho Dr. said if I had plate & screws w/wrist surgery I would recover faster & be back to work probably within 3 wks. (:D)
Waited 5 days for surgery, after that then welcome CRPS!! :eek::mad: Of course that DX didn't come until agonizing weeks later. :mad::Bawling:
By then used up all sick time, went on FMLA, then short term disability (STD).....
So many treatments, P.T. drugs & Dr. appts. (full time job itself).
I LOVE(D) my job and all the people there +perks! GRIEVED & STILL GRIEVING about that!
fast forward 6mo...slow minor improvements made but not enough to keep up with my work. Dr. appts. slowed to "part time".
So now, transitioned to Long Term Disability. Still thru work.
But to qualify they REQUIRE you to apply for SSDI.
So, I had to do that...........so many hoops to jump & paperwork!!
Waited 4 mo. & was denied (not unusual i guess).
So, now I've had to go to an atty. to appeal and will have to wait until Feb.?
So, with that long story I'm in the same boat. Some days, some moments I SO MUCH WANT TO GO BACK TO WORK! But if I do, I've used EVERYTHING up.
My hand still won't let me keep up the pace it's now disfigured and then there's still Dr. treatment days with no sick time left. Can you say "FIRED"?
Anyway long enough, it takes me forever to post on here.
Hope this helps.

Be sure to read on our SSDI / SSI forum so you know ahead of time what you need to qualify and if you might qualify. lots of hoops and takes time..
be sure to check out the sticky threads there too..

Generally, if you are able to do some sort of gainful work (doesn't even have to be your same job ), that is the best route to go.

http://neurotalk.psychcentral.com/forum28.html

As of Dec.27 all my time is used up. I would be without pay for 3 months.That is also when I lose my job. I purchased long term disability and you have to be disabled 6 months for it to kick in. I do not have short term disability.Some days I do feel like I could work then I will have a night I cant sleep over 4 hours and I work at a hospital that requires me to work over some days as well as being oncall 7 days in a row. I have gone in at midnight and got home at 3am and had to be back at work at 7am. Not able to do that, I don't think. Really don't know if I could hold out 8 hours at this point. I have been off 3 months. That is the thing I am worried about. If I go back1 day it will be 6 more months before my LTD kicks in!!!! So many unknowns. Thanks for your help. Feels good to vent. How long did it take for your hand to disfigure? Is the pain worse since the disfigurement?

I attempted to go back to work for a little over a week. I could not do it.

I have LTD through my former employer. Look into your policy. Mine allowed a return to work ( I think it was up to 30 days) and did not reset the 6 month time period. They did figure in and add on the week I had returned. So it was 6 months plus that week.

Thank you I will recheck into that tomorrow

How long after RSD did your hand disfigure? I know it happens at different rates. Does it hurt more when it does disfigure? Can it become normal again with therapy? I do need an outlet because the days fly by and I seem to get less done a home than I did when I was working. I am depressed and can't take antidepressants due to a prior reverse reaction to the mildest one. I get excited when my hand looks better, which you know is very short lived. Doing just my reassessment at therapy today has made my arm hurt more than ever. Dang thought/hoped it was getting better. I loved my job and perks too. I loved the people. I work in a hospital and my job requires a lot of right hand movement. Actually constant. Guess what I am right handed and that is the one affected. I don't do well with pain at all and never understand how someone with migraines could work. At least meds can stop that type of pain.

Found out today that if I go back even 1 day I will restart at day 1 and will have to wait 6 months for it to kick in or at this point 3 more months since I have been off close to 3 months now. After having such pain with my possible exit OT exam today, I am thinking about not trying to go back if I have a say in it. That was a 20 min. check on the strength of my hands and it set the pain off like it has never been before. 8 hours of continually using my hands would kill me. I see now that I might as well except this and check into Obama Care because a friend had insurance from a independent agent and received a letter this week that hers was going to double starting Jan.1. Wow I have always taken care of everybody and worked too. If I were a lazy person it would not be so hard. I have cried all night. I am also going to lose a lot of money for having to retire before retirement age. I have been at the same place same job for 32 years. Going to miss so many people. Maybe this will go into remission.

I'm sorry, this turned into one of my essays...;)

Murgir, you are not lazy in any way. This monster we are fighting affects us all differently, and many folk here have had to stop working. I am very lucky that I was able to do something part-time that I can manage. Without that I would be on benefits too, and glad to have them.

You will keep yourself busy anyway, because you've been used to doing things. Only someone who has never had a long-term illness (or known someone close with one) could think it would be fun/easy/relaxing to have to spend months off work and not doing much... We all know that it sucks, that you would like nothing more than to have your good old reliable body back and work, than to have to slowly move about with this one.

It's really important that you don't blame yourself in any way for what has happened and what is happening to you. Look yourself in the eye in the mirror and tell yourself that you have done everything you can to prevent this, and that sometimes, stuff (not the word I'm thinking of) happens that we just have to accept.

Your best chance for remission or less pain is to try to come to terms with your losses, and to get rid of some of the stresses that have built up inside your body. When things have settled into a bit of a routine, find yourself a bit of time each day to do some relaxation and gentle exercise, meditation, massage, etc - whatever helps you relax - and mentally give yourself a break. You didn't ask for this, you didn't do this to yourself, and you could have done NOTHING to prevent it. The fact that you get up each day and still face the world is something you should be immensely proud of.

I remember well the dark months early on when I first had to admit that I wasn't going back to my job, and that the future I had planned for myself and my family just wasn't going to happen anymore. We all had to adjust, and even though things have been tough for my family, I never pretend to myself that I have not had it hardest. The guilt, the pain, the grief at the loss of things you didn't even realise you cared so much about - working, independence, shopping alone, walking the dog, getting the house clean... The irony is vast - they say you never appreciate what you have until you lose it. Well yep, it is indeed true, but of course you can't know that unless it happens. Chicken and egg.

I know the routine now, I know what I should think, i know what i am responsible for and what i could not change, and most of the time I manage to bury the guilt and anger and 'why me?' deep down, and get on with life - but those things are still there, and sometimes they jump up and get me for a while, and I grieve all over again... We are only human, not robots after all.

I had a night like that too when it first happened, and I'm so sorry you have had to deal with so much hurt and pain and loss. Remember though that you are no less a person now than you were before this. If anything you are stronger and more resourceful, because you have to be. You are aware of your life and your body in a way the healthy thoughtless munchkins outside are not. Use your strengths to find other things that give you a sense of accomplishment and usefulness, that give you pride and make you smile. Things that still get your heart pumping, and allow you to sleep peacefully at night.

Things will never be the same again, but the old sayings have it best - when one door closes, another opens. Find those new doors and open them for yourself, and be proud of yourself even if your accomplishments seem small to others. Remember that their scale of normality is just different. One day they will learn the same lessons, hopefully not for many many years, but for now you know more than they do.

Stay strong and don't let this beast of CRPS get you down for too long. I'll be thinking of you, and I'm sorry if this has seemed preachy. I'm a wordy soul at heart I know, but I mean well, honest :winky:

Bram :hug:

You always make me feel good. I do feel guilty thinking maybe I did too much too soon after surgery. I am so independent. I kick myself but think maybe I will get over this and maybe this is a lesson for me to appreciate the small stuff I took for granted and believe me... If given that chance I will.

Murgir,
Sorry, I missed your question in there somewhere. I guess my hand pretty much contracted from the beginning. After surgery they put me in a soft splint with rigid spines from palm to elbow. They totally numbed my entire arm in addition to gen. anesthesia. about 18 hrs. later the numbing wore off to the most EXCRUCIATING PAIN!! Had been thru knee surgery & knew it was not even near normal. Now this is a common song........dozens of runarounds at Dr. offices, rude treatment, wrong advice (ice it, ice it, ice it).
Anyway I had a swollen, mottled, shiny claw of a hand that I could not move or use at all. Now (1 yr. later), so many drugs & treatments later + I used up all 60 of my allotted P.T. visits within 5 months. The swelling is gone, my skin is stil "shiny & thin my fingers will not straighten, thumb won't bend I can make 1/2 fist, wrist won't rotate. But I do have strength back so I have some use back.
We should make time to talk about the whole disability thing.

Sounds good. What is the best way to do that? Talk I mean. Thank You so much

Ugh...I'm sorry :hug: That sucks they won't allow you to try and go back without screwing you over for the 6 months.

When I went back it was between my 2nd and 3rd surgeries. I broke down crying in my Chiefs office. I didn't even try again after the 3rd surgery as I was even worse off!

It is hard to come to terms with your life being turned upside down. I try and live one day at a time and not think to far into the future. It gives me horrible anxiety and stress if I think about all the what it's.

I still have a hard time accepting help, asking for help or over doing it and causing myself to flare worse.