Dercum's Disease Support Group

new to group. I wanted to know if you all had to stop working from this illness. Are any one on SSDI. I stopped working in March. Weakness, pain, memory problems etc. I had Appt. w/ new RA Dr. He new nothing about Dercum's. I read the Fibromayliga can be the beginning before It flares up into Dercums. I am searching for answers. I have 6 Dr's and none of them seem to want to confirm it. If you do get diag. w/dercums shouldn't you qualify for social secuity if you are unable to work?

My name is Christine and I am co leader to the group. WELCOME!

I have applied for SSDI and am on the waiting game. I got denied the first time because they didn't put in there that it was a chronic condition that is registered with NORD.

If you need help i will need more information as in state information and so forth. I would be more that helpful to you once I have it.

This condition is just as serious and life impacting as other conditions people are on disability for. My good friend suffers from MS, and although he isnt completely disabled, he is on disability. He cant work, because his problems come and go and can be so severe.

I will be applying for disability as soon as I get a confirmed diagnosis. My trouble is mainly with getting rest at this point.

I see 7 doctor's, the pain management dr and my arthritist dr. seem to think it is fibro but after researching Dercum's, this seems like the disease of choice. I am trying to compose a letter to all my dr's to give them a list of the fibro, dercums and Lipoma so that all of us can get on the same page. It just seems that none of them want to research it and discuss it. Even though there is no cure and at least putting a name to it would make me feel better and having my dr's support me in the correct diagnosis. Why would you need NORD to help you with Social Security. My primary care doctor filled out a form for social services which stated my illness is permanent. However I believe this was for the crohns. I am in my 5 month for appying for SSDI and unless I can get my doctors to see and agree with me then I feel that I will be denied.

Just dont be discouraged if you are denied. My friend with MS was denied twice before his final appeal was approved. It's almost just a regular part of the process to be denied.

Don't forget...very important..you need a mental nervous in addition to the DD diagnosis. You need to be in active treatment for depression. Good luck...I did mine myself but I did contact my Congress Representative and have him ask SS to mark my file as he was interested in my case. I sent him my medical records with a release.Hugs, Grandma Sylvia

Good advice, Bettina! What I have heard from the people who have gotten it in the last year or two is that you really need to hire a lawyer. Once they did that and got all their stuff together, they got approved in their first hearing.

Hugs,

Diane

Wow Bettina....you really kicked some SS butt! They probably get few applicants like you. They were probably willing to approve you just to get rid of you. I had to appeal after my first application was denied. People said they always deny the first time. My appeal went through but not retroactively. I was 60 and had never used unemployment or any government program and always paid high taxes. I know SS varies a lot among the states. Great advice. This advice should help a lot of people. Having to work with advanced DD is sheer torture. My representative here in Ohio helped me too. I did get an attorney after the first denial but they did not have to do anything so they did not charge me. I appreciate the help that I got and bless those who help us when we are so ill and sick with worry about loosing the ability to work. It is so demoralizing to no longer be able to do the things we always could before DD. Having the disease is bad enough without having to worry about paying bills and supporting our families. Good for you Bettina! Hugs, Grandma Sylvia