HealingWell
Search Close Search
☰

getting on disability for Fibromyalgia

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/18/2008 9:10 AM (GMT 0)
Hi everyone! Are any of you on disability because of your fibro? The reason I am asking is that I have been trying to work again after a 3 month leave of absence and I just don't think I can do it. My pain levels are increasing again and all I do is sleep on my days off.  I mean sleep of the dead as in 16 or 17 hours straight. I am only working 3 days a week so far and it is really getting harder each day. How do you apply for disability for something like this that can't show up on any so called clinical test? My primary card doctor doesn't think it's bad enough to go on disability. He should spend a week in my body. It's not as if I don't want to work. I love working with people and have worked for my present employer for nearly 18 years. Then in May this disease hit me like a ton of bricks. I still wake up every day in disbelief that it won't just get better or go away. How can you go from feeling basically okay to feeling like this??? How do you go on disability?

Hope

Posted 11/18/2008 10:33 AM (GMT 0)
I wish I could help you, but I am recently dx'd with fibro as well. I was working full time and I can completely relate to your weekends. My issue is I'm a pastor's wife, and there are certain expectations of me - especially when, "you don't look sick". Actually, in all fairness to them, they have been pretty good with this flare that started at the change of season this fall.

Anyway, I am in the process of filing a disability income claim through my employer - it is a benefit of employment - and this will be the second time I have needed it. (First time was Jan - Mar 2007, when I had cervical surgery.)

I will watch this post with interest as I am becoming concerned about my ability to function in my line of work.

May I suggest that you use your favorite search engine and do a search for "fibromyalgia and social security disability" and see what you come up with? My primary care doc has suggested to me that using my cervical trauma and ongoing issues, which include fibro, may be the best approach for me. I see you have back issues. You might want to ask someone more knowledgable than I am if the same approach would be beneficial for you, too.

I found an article on-line written by a doctor who had worked with cervical trauma patients for years. He put together a connection between fibromyalgia and cervical trauma, and suggests that as much as 50% of fibro sufferers have experienced some sort of cervical trauma, including the position that you are put in for the surgery! I am not complaining (not that I am happy to have fibro), as my surgery prevented me from potential paralysis due to severe spinal cord compression.

Sorry this is so long. I think it's therapeutic for me to be able to talk about it, and share with others who truly understand.

Take Care,
Julie
Posted 11/18/2008 12:45 PM (GMT 0)
I was able to get social security disabilty but I also have several other health issues besides fibromyalgia.  You really do need a doctor or two to be on your side, I think.  At least with Social Security you do.  My doctors had to fill out paperwork and I'm sure if they said they didn't think I was that bad to draw Social Security early, I never would have gotten it.

 

I wish you the best of luck in getting it.  It could be completely different when getting disability from an employer.  Let us know how it goes for you.

 

Sherrine

Posted 11/18/2008 2:57 PM (GMT 0)
Hope,

 

I am right in the middle of all of this myself.  When I was living in CA, I was receiving State disability.  This had nothing to do with Social Security Disability.  When I moved home to SC, I foolishly thought that all states had their own state disability. blush   WRONG! shakehead   Actually, only about 4 states have this program.  Anyway, I started at square one and got my paperwork for Medicaid (you can get this through the Department of Health and Human Services) and food stamps.  Then, I went to the Social Security office and made an appointment for an interview (and they'll tell you what you need to bring for the interview).  BTW-you can do all of this online, but I've heard that it's better to do it in person (I have no idea if this is true).  I had to wait almost 2 weeks for my interview.  Since then, I got this form in the mail-asking me about my daily life (and how my illness affects it).  I was very descriptive (and probably told them way more than they needed, but I figured that it couldn't hurt.  BTW-besides fibro, I also suffer from unknown chronic pain (I can't afford to go to my doctor to find out what else is wrong with me), depression, and anxiety and panic disorders.  Also, since I can't afford more testing, I am still caught in Lupus limbo. rolleyes   LOL-I hate to say this, but maybe the more problems you have, the easier it will be to get approved.  And, I am not being pessimistic, I am being realistic and not getting my hopes up that I'll get it my first time.  Anyway, that's where I am right now-waiting. eyes

 

Oh!  I also went to the State Mental Health Department for an evaluation.  Initially I did this because I was trying to get my Zoloft and Klonopin for a cheaper price.  But, when I went for my SS interview, I told them that I had gone there.  I think that if you show that you are trying to find different routes of assistance, it may look good to them.  That's just my opinion, BTW.  And, I didn't go to mental health to "cheat the system."  Rxs are really expensive, and I'll take any sort of financial assistance I can get.  Plus, I am a hardcore advocate of the mental heathcare system.  They have saved my life more than once. 

 

I have heard that it can take anywhere from 2-6 months to get approved-IF you get approved the first time.  I asked my case worker if everyone got turned down the first time, and she said that wasn't true, and it really depends-case by case.  BTW-I wouldn't suggest trying to lie about anything.  You have to sign a form saying that if you are lying, they can prosecute you-either by jail or fining you.  Of course, everyone has their own opinion on whether to "stretch the truth," so that decision is yours.

 

Even if you aren't sure if you want to go the Social Security route, I'd start applying now, anyway.  Had I known that SC didn't have it's own state disability, I would have started this process months ago.  I don't know what state you live in, but I think the only states with their own disability are CA, HI, NJ, and I forget the other one.  But, if your doctor doesn't think that you should be on disibility in the first place, you'll probably have a hard time getting on any type of assistance.  I got lucky and both my doctor in CA (who actually suggested I go on disability) and my new one here in SC agree that I am in no shape to work right now.  I have done the same type of work for 17 years, too.

OK, I'm sure that I've confused you with all my talk and babbling (hey, it's what I do, LOL).  If you have any other questions, feel free to email me.  I'll try to answer anything I can, and I'm always up for talking.  LOL-just ask anyone here! yeah

 

Good luck with everything! :-)

Posted 11/18/2008 4:16 PM (GMT 0)

Hi!

 I just started this process as I have found myself in the exact same boat as you. I have been a medical assistant for over 20 years and I can not do it anymore. I have been looking for something else, but I have so many days that are difficult. I have not worked since  March and we really need the extra income so since this is quite a long process, I started the ball rolling. I found a company on the National Fibromyalgia Website that will help get disability for you and they take out 25% of your first check and thats it. They do all the paperwork, obtain all the medical records and even file all the appeals. The are called Allsup and I have already splke with them and they know allabout Fibro and its symptoms. I found the lady I spoke to so helpful and kind. If you are interested, shoot me an e-mail and I will be happy to give you further details. Take care, and I hope you have a good day.   

Posted 11/18/2008 11:45 PM (GMT 0)
I would start keep a daily journal about how you feel each day. write down when you take your meds, what you eat that day, how much yo exercise..

I don't know about disability but i can't see it hurting any it show what your life is like on a daily basis, look into any programs in your area and keep a log of research.. anything that shows you are looking to further your treatment

and dont lie about anything....
Posted 11/19/2008 3:37 AM (GMT 0)
Hi All,
I was approved for social security disability on the first try. Before I applied I spoke to an attorney specializing in disability. Briefly, this was his advice:
-make an appointment at you SS office. Go in person to meet with their representative so they identify with you personally
-fibromyalgia is a recognized disability for social security, however be sure to list all problems you are currently receiving treatment for, include any problems that require medications. The more problems the more likely for approval.
-know that your physicians will receive paperwork to complete regarding your health issues. Be sure to list all doctors that currently treat you or prescribe medication. Without the doctor's support there isn't much chance of approval.

He also told me that if you are over 55 or older (I was 55 at the time), you will have a better chance at approval. "They don't look as closely after you reach 55."

Your disability must be at least 6 months in duration to qualify. Start the process as soon as your doctor advises that you are disabled. The process takes awhile.

Any disability payments will begin on the 6th month and 1 day after the onset. For example, if you become disabled on January 1st, you will not qualify until after July 2. If the claim is approved December 15, you would get a check that accrued July, August, September, October, November and the first two weeks of December.

Also keep in mind that once you are approved for SS disability it takes two years to receive medicare coverage. That is two years after thel six months wait. So Medicare would begin July 2 .....two years later.

Some good news....maybe......if you're approved you can still work part-time, but cannot earn more than a certain amount. $900.oo I think.

Hope this is helpful. If I can offer any additional info, let me know! Good luck
Posted 11/19/2008 4:13 AM (GMT 0)
I have a suggestion for those who are awaiting a disability decision. In order to supplement our income I went back to college. Financial aid got my family and I through the lean years. In addition, I got two degrees and a few graduate certificates. Even student loans are worth getting. Anything to make it will do.

Donnaeil
Posted 11/19/2008 4:21 AM (GMT 0)
Just one more thing about SSDI payments and employer or voluntary disability income payments:

If you start a disability income claim with an insurance provider (whether it's a benefit of employment or you purchased a policy on your own), and you apply for SSDI, pay attention to double payments.

What I mean is, often the SSDI payment is retroactive, as in the example above. Well, if you were collecting DI from your own policy, and then you get SSDI, the insurance company does reserve the right to ask for their money back - because the policy is only intending to cover you when you are not SSDI qualified.

In other words, there's no double dipping!
Posted 11/19/2008 5:37 AM (GMT 0)
I've been dealing with blue cross here in Canada... to get on my job's disability insurance and what I've discovered is that everything needs to have a paper trail... if your doctor didn't write it down.. it doesn't mean anything when the insurance company reads their report. I've had to spend the majority of my time "actively" persuing treatment and getting the doctor's attention... and have had a change in doctors more than once... if they can get out of giving you money and saying you can work they will... and unfortunatly it's the job of the already sick to fight for it... which can worsten symptoms... it's not really fair :(

The back to school route actually sounds interesting... I'd almost concider it if there was a school nearby.

Posted 11/19/2008 2:06 PM (GMT 0)
I had to leave my job due to fibro. I've been seeing a psychiatrist for depression for about 5 years, ever since I was diagnosed with fibro. I had to appy for long term disability through my employer's plan. The shrink had me apply on the basis of depression, not fibro. He told me not to mention fibro at all. My application was approved first try.

It's a good idea to find a doc who is very familiar with how disability plans work. My shrink

actually does the independent reviews for a lot of insurance providers.

 

Posted 11/19/2008 2:23 PM (GMT 0)
Wait, only $900...is that a month? I don't have anyone else contributing into my bills each month. How can they expect you to live off that? I feel like I'm darned if I do go for it because I can't live off that and darned if I don't because then I have to suffer every day.

Why does it seem like having an illness (esp an "invisible" one) is looked at as a weakness and you have to jump thru hoops just to be understood? Yet I see so many people scamming the system and collecting money that they shouldn't be....
Ugh, it's very frustrating.
Sorry, so negative...I'm having a very painful day and I'm stuck here at work for the next 8 hours and I just want to go home and curl up in a little ball and die :-(
Posted 11/19/2008 2:42 PM (GMT 0)
I was just accepted for disability, myself, it took almost two years. The first time
I tried, i had only fibromyalgia and depression, for a number of years, and they didnt see that I had a disability, and that i was able to work. Then I had to have an internal review, i was still turned down, then i had an appeal, in august, where I spoke with a member from the tribunal, and in that, i included that i was in a very bad car accident, right after I applied the first time for disability. I think that me having the car accident and suffering from PTSD, really helped this along,. Also because I couldnt work, and I am a single mom, I was on social assistance. I had a very avid worker, she was the one that told me to apply for disability in the first place.
You just have to keep on trying, is all I can say, and it was not my doctor that was of any help, at all, he was not on my side, and discouraged me from trying almost. He said that I would never get it.
I hope that eventually you will get it, also, I had a lawyer from the legal clinic, he was also a big help, to advocate.
Kelly
Posted 11/19/2008 3:15 PM (GMT 0)
honeyprincess21,

 

The amount you receive (if you get approved) depends on how long you've worked, and how much money you've made.  I have worked since I was 17 years old, and if I get approved, I will make a whopping $802 a month. shocked   I know of some people that only make about $300-$500 a month.  My answer to your question-"How do they expect people to live on that?"  Personally, I don't think they give a ****.  I know that if I was making $802 in CA, I would be homeless.  That amount will barely let me live here in SC (again, if I get it).

 

Also, there's some ridiculous rule that if you make more than a certain amount, then you can't get Medicaid.  If I get my tremendous $802, then I won't get Medicaid.  So, I may be able to rent an apartment, but my illnessess will have to suffer.  All I have to say is that this "System" is ****** **!  I am praying that our new government will start looking at the middle class and stop looking at themselves. rolleyes

Posted 11/19/2008 7:05 PM (GMT 0)
I'm a widow.  I am drawing off my husband's social security that he earned.  He had a wonderful job and made very good money.  But, since he was no longer here, I was entitled to half the amount he would have gotten.  Then, because I was taking it early because of disability, they took another 29% off that!  So I'm basically getting only a little over 1/4 of what we would have gotten together.  It's not a lot but I'm glad when it is deposited in my account.  Plus, the Medicare is worth it, along with the new prescription plan.  Every little bit helps.

 

Sherrine

Posted 11/19/2008 7:42 PM (GMT 0)

 I have not worked at a (real) job in about 10 years. When I look at my social security statement it says that I do not have enough credits at this time to earn disability, My mom says that I should be able to draw off my husband. any one got a clue.

Lee Ann

Posted 11/19/2008 7:48 PM (GMT 0)
Lee Ann, I was a teacher and teachers do not pay into social security.  So I had only a handful of points from working summer jobs. 

 

I was 50 years old when my husband died and I couldn't get health insurance.  I could afford it but no one would insure me with four chronic illnesses.  That's why I applied for social security disability.  I'm not sure if you can draw off your husband's social security if he is still living.  Make a call and find out for sure.

 

Sherrine

Posted 11/19/2008 8:31 PM (GMT 0)
I just went on the social sec. website and did this test to see if I would qualify on hubby and it says I could do to the fact that we have kids under 16. Im just not sure if this is the route i want to go yet Sometimes I feel the cleaning I do for people is good therapy. And good exercise other times I feel like I am going to die before I get there house done I know I am not going to die from the pain but it sure feels like I could some times. I notice if I pace my self its better I have a hard time saying no to the customers that do not get done on a regular basis and call today and want me to squeeze them in today or tomorrow because they are having an event at there home and just did not have time to clean. my husband would prefer me to not work that way I can be more atentive to his needs As he works 60 hours a week.
Lee Ann
✚ New Topic ✚ Reply