[Hannajane]

Hi I'm new here. I was first diagnosed with rsd when I was 13 in my left foot following a surgery....it was years of pain, drs, meds, treatments, etc. it robbed me of any possibility of a "normal" adolescence. Then in my 20s it leveled off....it hurt all the time but was not as sensitive and tolerable. I breathed a sigh of relief.

Fast forward, I'm 38 and had surgery on my left wrist five months ago and it's not healing properly but to top it off they say I have developed rsd in it. There was a voice in the back of my head saying this pain is not normal, why does the wind hurt me, why can't I wear a jacket without wanting to cry, etc etc

I work with my hands or did...I've been been on std since the surgery which is due to run out in a month. I am so scared of what my future holds. I can't slerp between the pain and racing thoughts.....I don't want this to be my life. I feel so overwhelmingly hopeless! I guess I am just curious, how do you all work? I am single and have no family so I HAVE to be self sufficient.

[allentgamer]

I haven't worked since July of 2001

For a long time I didn't do anything, but after sitting there in pain for years thinking why me, and is this it. I decided to try and squeeze as much life as possible out of what is left.

It isnt easy. Sometimes I want to give up, and sometimes I can barely think because the pain tries to force me to concentrate on it instead of what I am trying to do. I am not sure how long I can keep going, but I will not let this stuff "make" me quit doing the few things I enjoy doing.

The stuff is spreading on me, and I know there is a day coming when I will not be able to keep going......but it could have took me out already if I had let it. Some may think im talking about doing all this stuff by the way I am talking.......but im only talking about 2 hours a week, and every couple of months one full day of activity.

But in the world of RSD......that is a lot! Looks are deceiving, my friends and family keep telling me to slow down. But if I do, I would be at a dead stop LOL!

I hope it doesn't spread anymore, and you are able to tame the pain some. Glad you found this place, as there are lots of good people that totally understand, and are the best at being supportive!

[Hannajane]

Thank you for your kind words. I know I should count my blessings that I can still do a lot more than others. I just am so overwhelmed at the changes this has brought upon my life. I went from being someone who was always the caregiver to someone who can barely care for herself....I have to go back to work otherwise I'll be homeless I am single, and don't have family to help me.

[Phaedra]

I am so sorry you are going through this yet again. I currently am not working I was just diagnosed in March of this year. I am still going through the ringer with doctors and workers comp. I agree with, Allentgamer. If you slow down you will be at a dead stop. I do not go much but when I can I do. I usually pay for it the next couple of days.. It is difficult at times. and does take time getting used to it. I am still learning how to cope. I wish you the best of luck and hope you feel better soon.

[AZ-Di]

Hi Hanna,
Welcome! but sorry for the reason you needed to find us.
Do you know if you have Long Term Disability to kick in after
the STD? If you do you will get payment & in turn they require
you to apply for S.S. disability, you just have to pay them back
when/if you get back pay from S.S.
Are you taking Vit. C to help prevent spreading & magnesium citrate
helps too.
Don't give up & keep moving all you can!

[Hannajane]

I have to say, as of right now, I'm capable of a good bit of activity....unless it involves use of my hand. Also, I find it difficult to be outside because of the pain of the wind.

I do have long term disability through my work. I've just never had to use my std let alone my ltd so I'm quite confused. I also thought you had to be off work at least 12 months before you could ever apply for SSI? Additionally, how can I pay them back if I use the money I get every "pay" to survive? Sorry for the questions I just truly don't know anything at all about this!

No one has recommended that I take any vitamins so all that I do take is a multi vitamin. My dr said after my cr scan he will refer me to a pain management clinic and come up with a treatment plan. What scares me the most is the idea of another possible surgery! I keep trying to tell myself I can only live one day at a time but it is all so life changing and overwhelming and no one gets what I'm going through because they've never even heard of rsd.

Thank you all for your support

[HeidiB]

Hi HannaJane,

I'm sorry you've been dealing w/this demon of RSD for as long as you have & are having new issues, or a spread of it. I know its not easy and it takes it's toll, we all do here, your not alone! I cant speak for anyone else but for me I worked up until 5-6yrs ago full time, I"ve tried finding work even recently but most places see me walking (even w/out my cane A.K.A. PERSONAL STRIPPER POLE LOL) & all they see is I'm just a liability so they dont even think about hiring me, so needless to say it can be difficult getting work but I'm trying for disability/ssi but that's also a long process.. have you tried or started that going yet?? I found out u can still work part time or make only so much per month while trying for SSI/Disability that might be worth trying for or even doing something from home if you have a computer & internet just a couple ideas for ya not sure if that helps but I hope so.
If you ever want or need to chat feel free to email me sometime, also welcome to our group everyone on here knows what it's like, what your going thru, cause we're all going thru it on some level or another.

[allentgamer]

I totally understand where you are coming from. I also admire all the folks that responded. It takes tough people to endure the RSD.

I usually take some heat for what I am about to say, and dont think I have ever posted it here.....well maybe some of it, like the hardship part. It took the casino I worked for about 1 1/2 years to finally get rid of me. after working my way up from an $8.50 an hour position to Marketing Director, just to be demoted little by little until I was back at the bottom, and then let go.

For 2 more years I tried to find work, but like Heidi, they would see me coming and say no to giving them a resume. I finally signed up for SSDI. Here comes the part I take a lot of heat for lol.

It took 5 years, and is a loooong story about what it took for me to win SSDI. Suffice to say I won big once I was awarded. Now that 5 years was with zero income, and with a wife that had never worked at a job ever. She raised 6 kids, 3 our own, and 3 my cousins/foster care.

It was tough. I got behind in everything....even rent. I turned to God, and actually told him I had no way to physically help myself, and could not worry about this anymore because it will kill me. Believe me when you re 6 months behind on rent and everything else....if you focus on it....it will nearly take your life when you are also dealing with the RSD and the loss of your old self.

Once I totally released it to him.......I didnt get kicked out of the house. I still live in the same house. The power was never shut off, and believe it or not......had internet the whole time! In fact God took care of me better then I could have done. I know it sounds like crazy talk, but turn over all the troubles to God.

If you are to work....there will be a job. If not.....there will be a way, and sometimes you just cant look at the circumstances your in, or you will faint. Just remember he is in charge if we let him be in charge.

The hardest thing was letting go, but it was the best thing I ever did. I still do that, and I am being blessed beyond imagination even to this day.

[Jomar]

MDs rarely mention vitamins or other supplements, they generally don't study that part of medicine..

We have e a vitamin and supplements forum, members here & there might suggest things to try.
http://neurotalk.psychcentral.com/forum49.html

We also have a SSDI /SSI forum. you can read and learn if you might qualify now or later on. Sometimes best to know ahead of time for better planning for future.
http://neurotalk.psychcentral.com/forum28.html

Always check out the useful stickys at the top of each forum..

Hi Hanna.

I'm sorry this has happened to you again. Are you left or right handed?

I developed CRPS in December 2012 following surgery on my right wrist. Unfortunately I am right handed. I returned to work full-time at the beginning of February 2013. At that time, my hand was like a boxing glove; it was so swollen you couldn't even see my knuckles at all. I could barely move my fingers. I mean, they moved so little that you had to be looking closely to see the movement. And the pain was just amazing. It was so horribly painful and everything made it worse - wind, slight touch, air conditioning, moving at all, etc. I work in an office and as you can imagine I was not productive when I returned.

However, I had spoken with my employer. They new the condition I was in and that I wouldn't be able to do much. It was agreed that in the long term it would be better for me to return to work even if I couldn't do anything. I felt that being there would help me recover. My employer provided me with voice recognition software and all the hardware that goes along with that. I can use the headset for the telephone too. They also provided me with an ergonomic keyboard and a vertical mouse. I keep a microwaveable heat pack in my desk and use it when I need it.

Initially, I spent a good deal of time coaching more junior staff. Then we had a few new people join and I spent several months training them. This involved far less typing than my normal role but was a very productive use of my time. In that time, I went to physio every week and kept up with my exercises during the day.

My hand is far from normal but it is much better now than it was in February 2013. I still cannot use a normal keyboard and mouse and even the ergonomic keyboard and vertical mouse are painful to use.

I now have CRPS in my entire right arm, fingertips to shoulder. Sometimes I get burning on the right side of my neck and in my right ear. As you would expect with CPRS, I am always in pain. Pain never leaves my consciousness and sometimes it is a struggle to think of anything at all apart from the pain. Sometimes I just have to wait that out.

Working full-time with CRPS is not easy but so far I have been able to do it. For me, it has been really important to continue to communicate clearly with my employer. That way they know what my situation is and I know that they are comfortable with it. That was difficult for me because I am a very private person and I don't like to talk about my pain. I'm not sure how you feel about that or how your employer would react but it has been really helpful for me.

When you say you work with your hands, I'm not sure what you mean. I need to use my hands at work for typing, using the mouse, going through files and other office-type things. But I do not think I could do work that required more intensive use of my hands. Using hobbies as examples, I wouldn't be able to knit or paint or build models.

I'm not sure if any of that will be helpful. I hope that you will have some improvement.

Hang in there.

KimA