By Karin on Saturday, April 21, 2001 - 09:16 pm:

Yesterday, after years of hard work and lots of learning (and educating the powers to be) I was granted full disability. What a relief. Now I feel my life can go foward in a very positive way.For me it's a bitter-sweet victory (no one wishes to be labeled disabled) but acceptance and a good measure of honesty will now allow me a much better life.
If anyone wants to talk about the maze within
SSD, or SSI I'd be glad to share what worked for me. Perhaps some day those of us in need will no longer be left behind. Hang in there .

By Beth on Sunday, April 22, 2001 - 02:42 pm:

Ok, Karin,

What did you do? What did it take?

Hugs
Beth

By Karin on Thursday, May 10, 2001 - 04:53 pm:

Hello Beth and anyone else reading this.
I't took me a little over 2 years to get SSD.
I concidered myself disabled for many more years than that but..OH WELL..
I believe the deciding factor in my case was when the judge asked if I had anything else to add.
I couldn't think of a thing but asked him if he would agree to put his hand on my shoulder blade andI would move my arm. He agreed as long as my movement wouldn't hurt me and that HE would record what he heard and felt.
Well.. His discription was better than any I could come up with. He turned white as a sheet and just about made ME sick to my stomach AND I LIVE WITH IT.
At that moment I knew I had won my case.
Of course there are lots of other hurdles to jump over and knowing what stage in the process your at
helps me answer properly. THEY (SSA) have a ton of trick questions I don't know is always a safe answer.
Good Wishes&Good health to all
Karin

By Joseph Renken on Saturday, June 16, 2001 - 04:52 pm:

I suffer from HMS and think that I might suffer from EDS3. I am having problems with my employer... U.S. Post Office with this because they feel that I'm making it all up. Please email me at dhenderson_74@yahoo.com

By Carol on Tuesday, September 04, 2001 - 08:52 am:

Hi Karin,

I would like to know the maze of the SSI. I applied for SS and was turned down because I still struggle to go to work. They said they would not look at me medically because I make too much money. I miss alot of days of work due to my health. I explained that the only reason why I am trying to continue to work is because I need to pay my bills and I do not have any other income and need to know how I will pay my bils. Physically I cannot continue to work, financially I have to. Emotionally I am breaking down because of the stress. I have been fighting with workers compensation for over four years and now have applied for social security and was turned down. I don't think I can handle another thing. Did you hire an attorney? Or did you do all the appealing yourself?? What can I expect?? Please email me at ginnies_corner@hotmail.com Any advice you can give would be greatly appreciated. Thanks, Carol

By Erika on Thursday, April 18, 2002 - 03:18 pm:

Karin,
I was just denied for a second time. I am 28 w/eds 3. I have worked since I was 13. I worked full time for years. As my problems got worse I worked less and less until finally on 10/20/2000 i stopped completely. my pain gets worse all the time and I am opiod intolerant. I loose feeling in my legs and arms all the time I have to stop writing now I'm getting numb I just wanted to know what you had to prove to get approved. Ill write again soon.

By anne strong on Sunday, June 22, 2003 - 03:40 am:

Hi, ive just been diagnosed with HMS 3 weeks ago, but have had it for aver 2 years with cronic pain, mainly in my knees. I was on social with sickness benefit and told them about the pains in my knee. The doctors for social said that i am able to work. So i am in the middle of appealing and currently recieving only £37.50 per week. i have confirmation that i have HMS, and will let them know at the appeal. but what worries me is that the judge/doctor/social do not know enough about HMS and about the pain when i sit, stand, walk its sometimes unbearable. does anyone have any advice about my appeal and waht to do?

By Michelle Castle on Sunday, October 12, 2003 - 04:53 am:

I'm a 22 yearold with HMS\HEDS. I haven't been able to work for well over a year now, and applied for SS. (My Father is deceased, so I'm eligible through his earnings.)

My Mom was so used to having to fight SS since we recieved benefits after my Father's death that we've decided to fight SS without an attorney, at least up till now. I went through the requisite denials, and had a hearing back in June. It seemed to go really well. Initally, the vocational expert testified that I could be employed as a video surveillance monitor, since I could sit and not use my arms and hands. I knew that was a job they often suggested, and when I had the chance to ask a question, I asked something about chronic pain interfering with concentration, and therefpre prohibiting work that is entirely about concentrating and looking at a fixed position. The expert said "Good question" and looked at the judge. He said "That is a good question; sounds like you should consider law school." I figured then that I'd persuaded him.

My problem since then has been getting my doctors to fill out an appropriate "Functional Limitations" questionaire. The day of the trial, the hope was that my rheumatologist, who I saw the next day, would complete the paperwork. The judge took the time to go to his office on another floor and run a copy of that thing for me. But then my doctor wouldn't do it, saying she knew the judge and a letter would suffice. It didn't, and off to another SS doctor I went.

Just this week, we got the report from that doctor. His judgement was that I require sedentary work, but can use my hands "limitless". Except that I can't push or pull with my hands. (I don't know you do anything with your hands without pushing or pulling...)

Anyways, he's wrong. My hands, arms, shoulders, and upper back problems are far more server than my knee and ankle problems. Currently, my ever growing team of physicians aren't even trying to address my lower body problems, because my cheif complaints are my hands, etc.

So I'm working on getting some info from my doctors stating that I can't use my hands for more than 2 hours. That, combined with the SS doctor's view that I can't stand for more than 2 hours a day, would complete the requirements proving I'm disabled, as I'm an unskilled to semi-skilled worker with no work history.

We faxed some simple functional capacity questionaires to my primary physician and hand specialist this week; hopefully they'll return them Monday. I only have until Friday to respond, either with sufficient evidence or a request for a supplemental hearing. I can also include questions for the SS doctor, and written arguments about the facts of my case and the law as it applies. I've got some good questions for the doctor ("You say I can't stand or walk; but you say I can carry 20 pounds. You also said I don't need an assisitive walking device. Is it your opinion I can carry 20 pounds while sitting?" just kidding, I won't ask that)

Anyways, I don't know why I'm enduring the agony to write all this; it's not a good explanation of the SS system to any needing help. But I've read tons on the system in the past two years.

Here's the major highlights (but I take no legal responsibility for you or your case, okay? I'm just a kid, not an attorney!)

From an official SS document:
"Entitlement to Social Security benefits is determined by a five-step sequential analysis set forth in the Social Security Regulations. First, the claimant must not be engaged in substantial gainful activity for a period of not less than twelve months. Second, a finding must be made that the claimant suffers from a severe impairment. Third, the ALJ determines whether the impairment meets or equals the severity criteria set forth in the Listing of Impairments contained in the Social Security Regulations. If the impairment satisfies the criteria for a listed
impairment, the claimant is considered to be disabled. If the claimant’s impairment does not meet or equal a listed impairment, the ALJ must undertake the fourth step in the analysis and
determine whether the claimant has the residual functional capacity to return to any past relevant work. If the ALJ finds the claimant unable to perform past relevant work, then, at the fifth step, the ALJ must discuss whether the claimant can perform other work which exists in
significant numbers in the national economy."

The official Listing of Impairments can be viewed at http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm For the record, neither HMS or EDS is listed. But, under Musculoskeletal System, the major dysfunction of any joint due to any cause is. As the reg's show, a major dysfunction of any weight bearing joint or any major peripheral joint in each upper extremity (i.e., shoulder, elbow, or wrist-hand) is considered a severe impairment. If you can prove you prove your condition equals the requirements, you're on your way to proving your disabled.

Proving that your condition equals the requirements given for muscularskeletal disabilities isn't required though. Instead, you can prove you're disabled under the forth criteria the judge considers - your residual functional capacity. This deals with your ability to perform work related activities, and is divided into two broad categories, exertional and nonexertional. Exertional is your ability to walk, stand, lift and carry. If you can't walk or stand or at least two hours a day, you require sedentary work. If you can't lift and carry 20 pounds up to one third of the day, and 20 pounds up to two thirds of the day, you require light sedentary work.

But light sedentary work is still work, and you have to show you can't do any work. You can do that if you can prove that you have nonexertional limitations as well as exertional limitations. Nonexertional limitations are postural, manipulative, communicative, and enviromental in nature, the most important to our cases being postural and manipulative. Postural will involve how long you can sit, as well as crawl, stoop, kneel, climb and so on. Manipulative limitations limit how much of the day you can reach in all directions, handle objects (gross manipulation), finger objects (fine manipulation), and feel.

The combined effects of your various limitations has to add up to an inability to do any work. An inability to stand or walk for over two hours, combined with an inability to sit for 6 hours, and an inability to kneel, would eliminate any job you couldn't do laying down, for instance. If you show that you can't stand or walk for more than 2 hours, and that you can't handle or finger objects for more than a 1/3 of the day, you've eliminated all the jobs available to the unskilled and semi-skilled worker, except for the video surveillance monitor. For that, you have to show you can't remain seated, staring at the same position, for eight hours with normal breaks.

Depending on your education and work history, you may be considered a skilled or highly skilled employee. If so, there are a lot more jobs in the national economy that you'll have to show you can't do. Since many of them have greater accessibility to the physically disabled, you'll have a lot harder time proving you can't do any work from a purely "physical" standpoint. You'll have to show more of you general unhealthiness, such as how often you'd miss work, as well as your mental confusion from the pain. The physical requirements of not being able to stand or use hands will still have to be met though to rule out unskilled work.

There are other ways you can go about "further eroding the job base", but from what I know, if you show you can't stand or walk for more than 2 hours, that you have to periodically alternate from sitting and standing to relieve discomfort, and can't use your hands for more than 1/3 of the day, you're pretty much set if you don't have a college degree or any skilled employment history.

Getting your doctors to state all of those limitations is essential. That's what holding my case up. My rheumy says the orthoped should, the orthoped says the physical therapist should, and round and round we go...

By the way, be weary of consultations with SS doctors. The first guy I saw pretty much said I was faking it; this latest guy understood some, missed some (um, why'd they send me to a pulmonary specialist?) Getting that kind of stuff on the record isn't good. It's not the end of the world either though, because it's an established principle that the ALJ should give "controlling weight" to the opinions of your treating doctors.

Some links...
http://www.ssa.gov/disability/ - everything you need to know, if you can find it!
http://www.ssa.gov/OP_Home/cfr20/416/416-0000.htm - SS regulations on disability determination

http://www.scottdavispc.com/ - a lawyer who specializes in Social Security claims for people with FMS, CFS, and other chronic pain conditions. He has GREAT articles that are easy to understand. AND, he'll take cases from anywhere in the nation.

Sorry I rambled so much!
Michelle