SSI and disability from Fibro??

[Jenny Wren]

Is there anyone here that is on SSI or disability because of their Fibro diagnosis?  I haven't been diagnosed with this, but have been diagnosed with chronic EBV.  All blood work and MRIs are normal, still after 7 years of this misery.  I have migraines, TMJ, and tingling sensations, and ohh, can't forget the IBS.  Thanks

[aliwitsend]

As for SSDI, yes good doctor documentation, multiple specialists, detailed.  And you can help the process by spending 40-80 hours on the paperwork.  Be extremely detailed,
and find a friend who is an RN or something to help you analyze your body as if you were a doctor.  All of that will help you to get it the first time.  Also, see the bluebook part of the SSDI site for professionals.  It helps delineate part of their criteria for reviewing applications.  If you are working at all  you won't get it.  If you later can work full time, you will have to pay your SSDI back.  Good Luck.

[Beckie30]

Hi, Erica I was wondering where you find a advocate? my husband has had Chronic Insomnia, CFS, Migraines, and he has been diganosed with Bi Polar He is so depressed he is in alot of pain always whether it be body aches or sever migraines he also has not sleeped for 3 years more than a few hours a day  we have been to several Doctors had several test, and this is what they have come up with, the doctors took him off of work he has been at the same job for 25 years we are worried about the future they have him off for a year at this point. can you give us any advice or anyone else that has dealt with disabilty? thank you & God Bless..    Becky

[bowhunter0310]

My story is very long.  I got really sick back in the Fall of 2000.  I had severe nausea that lasted 3 months, within those three months I was at the ER 3 times, an inner ear doctor, gynecologist, and my pcp.  My gyn is the one that did blood work for all different things, including the EBV, it showed that I had chronic EBV.  After the nausea subsided, I started getting migraines, and neck pain.  Then the crazy stuff started like seeing black spots on things, went to another neurologist, she said it was migraine related.  Then the sensory stuff started.  Facial tingling, buzzing sensations under the skin etc...  I finally had my first brain MRI in the Spring of 06, it was normal except for sinus thickening, then another brain MRI in the Spring of 07, normal again, except for sinus issues.  I was already into 6 years of these sensory problems.  I also had full spinal MRI, only thing found was a bulging disk in my neck.  Neuro says this will not cause all the rest of these sensations that I feel every day of my life.  She mentioned fibro, after a pile of blood work was done and it was all normal, and also my MRIs.

So, I have been to two neuros, chiropractor, pain clinic, ent doctor, rheumatologist, and also my pcp.  The neuro, my pcp, chiro, and pain doctor all said fibro.  I don't think that they actually wrote this down as a diagnosis.  

I hate Lyrica and Topomax, they make me feel like a zombie.  I have been on 4 different AD, 2 anti-anxiety drugs, Lyrica, Neurotin, and Topomax.  Tried Frova, and Relpax.  

I have been tested for RA, Lupus, MS, cancer, Tsh, Fsh, EBV, T3,T4, Spep/Ipep, ANA, sed rate, and I'm sure that there are a lot others.  But the recent EBV was normal, but deemed chronic EBV back in 2000.  

So, this is my story.  So the only thing I know is the nerve pain is awful, the migraines are horrible and my body feels like its 87 instead of 37.

So, what would my next step be??????

Thank you kindly, Jen

[Cona8]

Hi Jenny, I have been receiving benefits for depression which stemmed from my Fibromyalgia.  I found an advocate through a depression support group who got her on SSI benefits.  She introduced us and we worked for a year like dogs and finally I was accepted as disabled and got health Insurance and some monthly Benefits.

Some people say that you get denied on the first try and some people get it on the first try.  What you need to do is to find an advocate in the disability field and just keep looking researching for an advocate until you find someone that understands you and your desperation and will do everything they can to help you build a case.  It's not easy but what is esp. when you feel so terrible.  It is too difficult to handle all this alone that is why I suggest an advocate that knows and understands the system and how to work it.

You could try writing or calling the place I listed below, they may answer some ?'s for you and there is also this amazing book full of info about our tights as people with chronic illness called the Fibromyalgia Advocate by, Devin J. Starlanyl, M.D..  Even though it says "Fibro" there is something in it for everyone who is suffering thru financial loss from an illness, how to advocate for yourself, how to apply and get social security benefits and med insurance etc.

I hope this is helpful in some way, some how our suffering has to come to an end.  

National Disability Rights Network
900 Second Street, NE, Suite 211
Washington, DC 20002
Phone: [phone]
Fax: [phone]

-Erica

[PlateletGal]

"I have been told they are instructed to deny everyone the first time have you heard of this?"

I've heard this before.

[Rosemary7355]

I too have firo, also i have had two spinal surgeries one at l4/l5 another at C6/C7.  Now I am scheduled to have surgery at C5/C6 with bulges at C3/4, L5/S1.  I have had two episodes of C diff which hospitalized me for a total of 14 days which makes me unable to take antibiotics.  CFS is a daily problem and I just found out that I have a B12 deficiency and my potassium is low.  I cannot take Nsaids because I overdosed and now it cases me to have water retention.  I have just been denied my first time for SSDA.  I have hired an attorney and asked to appeal my case.  I have been told they are instructed to deny everyone the first time have you heard of this?

[heart2heart2]

You mentioned you have several things wrong. Are you on medication for any of your illnesses?

For instance, I have fibro and migraines among other illnessness. I went to a rhematologist years ago for the fibro diagnosis and got put on medication. I see a neurologist for my migraines and also on migraine preventative medication. All these are in my charts and are documented. I go to the doctors every few months fr follow up visits.  Believe me I'm getting tired of running to all the doctrs I have to run to .

When social security reviews my case they will see that I am still suffering from my symptoms and seeing doctors and taking medication for these conditions.

This is what you have to do. Go to the doctors and get documented. It is one thing to believe you are sick and other to have an actual diagnosis. This is what the SSA wants, documentation. They will want statements from the doctors. The rheumatologist for your fibromyalgia, a neurologist for migraines, and I'm not sure who for EBV? Maybe the rheumatologist can suggest or run the test if there is one?  Hope this helps.

[PlateletGal]

Sorry that it posted 3 times... (arrgg!)

[PlateletGal]

Unfortunately you have to find a physician who is interested in fibro & CFS. Chronic EBV is really Chronic Fatigue Syndrome... IMO and the opinion of some CFS experts.

When you are disabled, they really don't look at your diagnosis... as much as they look at how you are functioning and whether or not you can work (either part-time or full-time).

If you can work... I would do so and consider cutting your hours or if you need special accomodations, you can probably get them, thanks to the Americans With Disabilities Act.

For a list of physicians in your area who know how to diagnose and/or treat CFS and fibro... check out:

http://groups.msn.com/Neuro-ImmuneSupport/physicianscenters.msnw

[Jenny Wren]

Thanks guys for everything.  I have chronic EBV, migraines, muscle pain, and irritable bowel.  I have not been diagnosed with anything yet.  Had lots of testing.  Who would diagnose this, a rheumatologist?  Thanks.  

[PlateletGal]

You need good physicians, a good attorney and I would also recommend contacting a Senator or Congressman (or Congresswoman). One of my Congressman helped me expedite my hearing.

[Akcowboy]

  Hi y'all I been fighting with ssdi now for 5 years and even went and had my first hearing last year and the judge had agreed that I had a server case and had all my doc's backing me up that I was unable to work, but I had talked about all the hunting and fishing that I had done in the past but it was taken as I still are doing this but in fact I haven't done this activity in over 7 years now from my medical problems but it didn't matter as it was on my reports that I love doing this activity but did not say that I can no longer do this activity so I'm still fighting for my ssdi. But even so the judge had stated that my problems are server and as I recall server is reason for ssdi benefits if unable to work

[heart2heart2]

Jenny, you can get it, but get a lawyer . It's also easier and faster to get SSDI if you are over 50. It too me almost 2 years to get it and I was over 50 at the time.

You have migraines, EBV, fibro? You may need a dx of depression or anxiety, and with chronic illnesses who doesn't have that? Go to a shrink, get everything documented.  You need documents.

Now think of the long run. Are you able to work pt? Because your disability payments will not really be that much (it depends on your earnings- if you are/were a professional you will get more in benefits but it may be harder to get SSDI because of your education level) You will get medicare in 2 years but right now they take out almost $97.00 for part B, and part D (prescription plan really stinks)  You would be better off to go on your husband's ins.  plan - if you are married.

The SSA will send you forms to fill out, you can call the SSA and ask for the application.  

[texasrose204]

I have been on medical leave til the end of january hoping that things would get better but have not. now i am unemployed and scared! i was dx with fm 1 1/2 ago and just got to the point i couldnt do it - i missed so much work and would end up in bed in pain and couldnt function when i was at home. tired to keep working and hoped to go back it was my life! now i have to pace myself and pick and choose what i can do. i struggle with walking i tremble exhausted and hurt! been trying to get disablity through my job but my rheum is not helping ???? my primary doc and neuro. leave it to him so i am stuck i am paying for cobra right now but cant for long!  and i need my med too what i would give to be back at work and normal again - this is not what i want and seems what i hear from on hear and other forums that people think we are just lazy and making this up! But have to keep positive cause like moesqueen said she got it and i am praying !

[PlateletGal]

Chronic EBV (for a period of over 6 months) is Chronic Fatigue Syndrome.

[MoesQueen]

yes,
i rec'v disability because of fibro and on the first try.
fortunately i'm the type of person that saves everything. sort of a pack-rat when it comes to important issues.
i was able to go back several years to my very first appt.'s, test and dx's etc. and had my current doc complete all the paperwork in full.

there WERE three this that i found helpful;
1. a doc who belived me.
2. a doc willing to complete the paperwork in full, and if there are additional question had no problem answering them.
3. and, I PRAYED, CRIED OUT AND ASKED GOD FOR A FAVOR, BECAUSE WE NEEDED THE MONEY!

moesqueen

[MoesQueen]

yes,
i rec'v disability because of fibro and on the first try.
fortunately i'm the type of person that saves everything. sort of a pack-rat when it comes to important issues.
i was able to go back several years to my very first appt.'s, test and dx's etc. and had my current doc complete all the paperwork in full.

there WERE three this that i found helpful;
1. a doc who belived me.
2. a doc willing to complete the paperwork in full, and if there are additional question had no problem answering them.
3. and, I PRAYED, CRIED OUT AND ASKED GOD FOR A FAVOR, BECAUSE WE NEEDED THE MONEY!

moesqueen

[patsy10]

Are you trying to get disability yourself?  The symptoms you describe above don't sould like they would qualify for disability.  You have to have an actual impairment that keeps you from being able to perform your job.  Although, I have seen people get disability when they clearly are able to work and vice versa, seriously ill people are turned down.  I don't really get it.  I have been quite ill for 3 years.  I have numbness, tingling, twitching, weakness, severe orthostasis and much more.  I think going to work keeps some form of normalcy in life.  It kills me and exhausts me to do it but I go. I stand on my feet for 9 hours a day and don't get lunch or breaks most of the time.  It's 3 days per week.  Initially I went to numerous doctors trying to find out what it was.  I finally have given up.

[PlateletGal]

Chronic Fatigue Syndrome and Disability

http://www.disabilitydoc.com/chronic-fatigue-syndrome-and-d/2005/11/3/chronic-fatigue-syndrome-and-disability.html

List 2 - Laboratory findings

Even though, at this time, there are no specific laboratory findings that are widely accepted as being associated with CFS, SSA allows that the following laboratory findings establish the existence of a medically determinable impairment in individuals with CFS:

An elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1:5120, or early antigen equal to or greater than 1:640
An abnormal magnetic resonance imaging (MRI) brain scan
Neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing
Any other laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record; for example, an abnormal exercise stress test or abnormal sleep studies, appropriately evaluated and consistent with the other evidence in the case record.