Expert: Candy - 11/1/2006

Question
I guess I should say I'm not really new to cfs but have put it behind my fms and now I am so sick most days I can't even take care of myself.  I am trying to come to terms about checking into disability and see you wrote you have experience with this.  Funny but not really .... I have been too sick to call around for an attorney and not even sure where to start.  I saw an ad for someone but they are over an hour away and I live by myself and have no help with transportation.  I used to work under a grant program and it allowed me to work at home but unfortunately it came to an end in May and I was crushed.  This was one of many unfortunate happenings this past year which I contribute to why I have has such a bad set back.  I am not a bitter person and I try to find the best out of the worst but recently I have lost all my friends but one as they think I am just depressed and don't want to work or go out.  Now my house is soon to go into foreclosure and I can't get enough energy to work on it fast enough to get it on the market.  There is so much to do and everytime I try I am down for the next several days if not longer. I have only been out two times in four weeks and that was because I was desperate for groceries.  Then I get really sick and sweat so bad I literally feel like I am drowning.  One time a lady came up to me and ask if she could do anything for me.  I just said I was having a "personal summer moment" but truth is I haven't had a menstrual since late 30's. I am now 47. I thought that was young but doctors didn't seem to think anything about it.  My husband (now ex) thought I was wanting attention and over reacting which made me wonder because some days I would be fine even if I had a hectic week and others I couldn't get out of bed for no reason.  I find many days I can't even think to write and make since.  My sweating spells will leave me completely drenched and coming from every pore; nose, eyes, ears, personal areas, running down back of legs and yes even ankles and feet.  These spells can last as long as a half hour.  My body temp and blood pressure runs low but heart beat high. CBC Blood work is normal.  I do have a thyroid condition and take meds other than that doctors have only diagnosed me with sleep apnea and fms.  Also my brain often feels hot.  I know that sounds weird and it's not like a headache but like a fever under the skull.  When I told the doctor about it he literally laughed and said in a joking tone "what are we going to do with you"  Does any of this sound familiar.  Thank you so much for letting me vent and if you can please help me how I proceed with an attorney and if there are any of my symptoms that sound familiar.

Thank you Thank you  

Answer
Applying for Social Security Disability based on CFIDS or Fibromyalgia alone can be an ordeal in itself. Because our wonderful government has dipped into the Social Security budget to fund other things, the Social Security Administration needs time to stall so they can dip into another budget for the funds owed the "appee". So they deny applications for, what they call, "questionable" disabilities. (The only automatic awarded disabilities are quadriplegia and total blindness.) The denial process entails 3 phases. When the first one is received (via letter) it can be appealed by simply returning a form enclosed with the denial letter. At that point SSD will make you an appointment to see one of their doctors. Then, in most cases, you'll get a letter stating you've still been denied. To appeal this denial you'll need to go to court. This hearing will be in front of a court commissioner (maybe a judge) in a local court. As a rule, the claims get accepted at that point, providing your case is strong. But if this "judge" denies you, you'll have to go before a Supreme Court judge. This is the last and final ruling. Once denied in this court, you're done. You can't appeal it. Most people don't make it that far. They give up and try to go back to work (which is what SSD is counting on). In my own case, I had to go to the first court hearing before getting my claim approved which took a year and a half from the date I first filed. That's a year and a half with no income and plenty of stress, which aggravates the CFIDS symptoms. My suggestion is, if you think you can endure the process (and all the stresses and frustrations), #1 - start a diary/journal describing each day, your activities, your symptoms, etc. and keep it current until the check is in your hand, #2 - find a doctor that will run the EBV test and give a clear and concise diagnosis and who is willing to help supply whatever it takes to convince Social Security, #3 - At the first denial, find an attorney who specializes in Social Security Disability cases (they work on a contingency basis. They don't get paid unless you get approved and they are only allowed to charge 25% of your award). You probably won't need them for the first appeal because that one's on paper, but do not go to court alone. You will lose. Also, check with the state you live in to see if it provides a State Supplemental Income. Most states have what they call a "poverty level" base line (the amount of income that makes you eligible for public assistance.) If the amount of your Social Security doesn't meet that base line amount, some states will supplement the balance so you don't have to go on their welfare roles.  Here are a website that may have more definative answers for you regarding disability.

www.disabilityassistance.com/social_security_disability.html
members.tripod.com/bh.cfs-fms/Links_at_Top/DisabilityInfo/Disability_information.htm

members.tripod.com/bh.cfs-fms/Links_at_Top/DisabilityInfo/How_to_Apply_for_SS_Disability_Insurance_benefits_if_you_have_FMS.htm

www.disabilitysecrets.com/

www.immunesupport.com/articles/articles.cfm?disease=Fibromyalgia

pbcers.org/ssd.htm

pbcers.org/SSD-ALL.htm

www.disabilitydoc.com/chronic-fatigue-syndrome-and-d/

www.myida.org/dislinks.htm

Fibromyalgia Network
Web site: www.fmnetnews.com
E-mail: fmnetter@msn.com

www.cfids.org (may be able to tell you if there is an attorney in your are who has experience with Social security cases involving CFIDS/FM)

www.cfids.net/

members.tripod.com/pwcfriends/index.html

I wish I could tell you more.  I wish you the best of luck.  And try and stay positive no matter how bad it gets.