my name is Michelle and my daughter found this great site, i think it is great there is a forum for people with such a rare disorder that we can come together for answers and support. i have had rsd for 9months i had a foot surgery that ended with rsd when i was first dx and it was very early a month after the surgery i went to 2 other drs to confirm and started blocks, my dr said i was text book that why it was so easy to dx, my foot was 20 degrees colder then the rest of my body it was blue it hurt all the time i couldnt even put it in the shower or under the bed sheets i even could not wear a shoe i have been wearing a foot brace also my foot has atophy and turned inward i also have rsd in my leg. i have done 3 lumbar blocks and 2 beir blocks. i was reading about remission in the forum and was wondering could i be in remission or have i just stoped the progression. the last beir block my foot is not cold anymore but it still turns purple or molted at times i can now put my foot in the shower but i can not stand with all my weight on it and i still cant put it under sheets and i am still wearing the foot brace it hurts to bad to put it in a shoe,my toes are still frozen they wont bend, but the dr said it was better because it wasnt cold anymore? i was wondering what your thoughts were on it, i also would like to hear about people who have filed for disability and got it how long did it take how did you do it, did you have to go to the alj and appeal it a couple times before getting it? i have an attorney and we filed in feb but no word back. sorry for such a long post thank you for your time, Michelle

Hi Michelle,
You are very smart to apply for disability now. I don't know any of the time frames and others will come on to help you that have done this.

I wish I had applied. It has been almost a year and a half for me and hoping each day I get closer to working again. Knowing now what I know I would have applied and I believe I still could SSI but trying to hold out.

RSD has a mind of it's own so It makes sense to be on the safe side financially.

Also like you I have some great days and some debilitating days. Thinking I am in remission and then not!

Take care and hope you get your check soon so you can have a little less stress.

i had to apply for ssi this has been the most emotionally, phycially and fiancially devastateing thing i have had to go through we have had to sell things to pay medical bills because i would have to go into the hospital for the blocks and seeing doctors several of them we went broke fast not to mention the meds they are not cheap just for pain meds 200$ monthly.

Remission means you have no pain or any other symptoms of rsd at all. If you have any pain or color change then you would still have active rsd.

Sorry you have to deal with it at all. I can't speak to ssd or anything because I didn't have enough work credits to qualify and hubby makes too much money for me to get ssi.

Actually rsd isn't rare at all. The only reason people think it is, is because they never heard of it before they were diagnosed with it and also the lack of numbers to calculate just how many have rsd. The "estimated" numbers in the US alone are over 7 million and up to 10. It's really sad that everyday more people are added to those numbers. In a way though it's good because it means more docs are recognizing it and diagnosing it. I wish I could zap it away and make us all better. Since I can't I just try to help where I can.

Hugs,

Karen

Michelle,

Even though you may not 'technically' have a remission (still showing some symptoms) you may have periods of less or more pain.

I began in 1986 and through the years, have had long periods where the pain was almost gone, the color was almost normal, and swelling was almost down. Yay!

Then for no apparent reason, I would go through a period where the pain and everything else was back as badly as ever. I don't know how typical this is, but I just wanted to share my experience.

Welcome to the discussion group. I hope you find it helpful, not only for information but for support as well.

Mike

We have a Social Security Disability forum here also-
http://neurotalk.psychcentral.com/forum28.html

check the sticky threads above both forums for saved useful info.

Hi Michelle,

I am so sorry to hear that you have RSD though I am SO glad to hear that you were diagnosed so soon - that is great and hopefully will improve your chances of reaching a full remission!!!

I have RSD in my left leg, right arm and possibly left arm also now. I developed it when I was 12 years old (I am now 14) after an ankle sprain and it took nearly 5 months for me to get diagnosed.

When me and my mum spoke to my Pain Management Doctor about remission, he told us that you are more likely to reach full remission if your RSD is caught within 3 months and you are treated aggresively. He told me that remission is usually where you are able to do everything that you want to do. True remission is where you have no pain or other symptoms but my doctor also explained that he also considers remission if you are able to do all the things you want to do with a little pain.

I really hope that you are able to reach remission real soon! You are lucky to have being diagnosed early and hopefully that will go in your favour and help you!

Take care of yourself and please keep us all updated when you can!!

Alison.

That sound great.

Keep working till you're back to normal and be very careful of injury. My understanding is that this never really goes completely away though you can achieve something approaching 100% remission.

Goodday , my name is kim. i have had r.s.d. i have never heard of remission? what the body can do is jump around to different tigger spots. i do recive disability.Yes, i hired a attorney and won . if i can be of any help .please , let me known and i will try and help. GOD BLESS KIM

I am in remission. No color change, no swelling unless I walk with my arms swinging. I now keep them up in my pockets or bent when I walk to try and keep it from happening. They don't change color at this point and I'm pain free. The only time I feel the pain is when the barometer changes. It took us about 10 years to get me there. I have other medical problems too, so we had to work on everything. It can happen.

As far as SSI or SS it took me forever to get mine but I was so bad off at the time that I couldn't deal with it myself. Mentally at the time I was really bad off because of the pain and frustration with Drs.

After I figured out my lawyer wasn't worth a darn, and that's putting it nicely, I wrote to the State Rep. and he had it for me within a week. I didn't just have the RSD to go on though. I think the major depression senched it for me more then the RSD and everything else.

When you get a lawyer make sure he doesn't live on the golf course. Make sure you do get one you can talk to when you need to. I have found around here that more people are getting it without lawyers then those who do. My husband had gotten his within 6 months without a lawyer and several of my friends got theirs without one within months. I think the lawyers also go in and do the talking and they need to hear the person talk.

Hope you feel better soon.

Ada