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Old 10-12-2005, 02:59 PM   #1
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NatashaW HB User
Anyone get disability because of their CFS

My parents are retiring next year, which means the end of being on their insurance. I havent worked for a long time due to my CFS. I was in school but had to quit (hopefully temporarily) also due to the fatigue. Has anyone had any luck getting disability because of their CFS?? I don't know what I am going to do. I am on 5 prescription medications that I have to take. Have GERD also and insomnia and a heart condition.

 
Old 10-13-2005, 03:26 AM   #2
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peregrine HB User
Re: Anyone get disability because of their CFS

In response to your title question - Yes.

 
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Old 10-13-2005, 03:52 PM   #3
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Re: Anyone get disability because of their CFS

Quote:
Originally Posted by peregrine
In response to your title question - Yes.

How did you go about getting disability? I wouldn't know where to begin. Was it difficult to get the people to accept CFS as a disability? How/where do you file a claim? Thanks

 
Old 10-14-2005, 03:17 AM   #4
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peregrine HB User
Re: Anyone get disability because of their CFS

Quote:
Originally Posted by NatashaW
How did you go about getting disability? I wouldn't know where to begin. Was it difficult to get the people to accept CFS as a disability? How/where do you file a claim? Thanks
This was 13 years ago. I had a lawyer who specialized in working with CFIDS clients. You will need a letter from your doctor stating your symptoms and that you are unable to work and have not been working for whatever the amount of time is. I think I also needed letters from friends and family stating how I had deteriorated from my condition. The lawyer knows the procedure and does the rest. I had a court date and went before the judge with my lawyer. That is how it worked then in California. It may be different in different states. It was definitely a process. I think that you start by calling social security and reqesting the necessary forms. As I said, it has been awhile and I cannot remember clearly now all the details.

All the best.

 
Old 10-18-2005, 11:15 AM   #5
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Winnieie HB User
Re: Anyone get disability because of their CFS

Natasha, hi, you may not be eligeble for disability benefits if you have not worked enough hours in your life. How old are you and how much did you work? I did recieve SSDI which is rare for someone at 35. My lawyer said most people do not get SSDI for CFS unless they are in their 50's. I think because my CFS was service connected at 20% for being in the gulf war, it helped me out alot. But maybe thinks are changing with CFS and disability. Pamela

Last edited by Winnieie; 10-18-2005 at 11:18 AM.

 
Old 10-22-2005, 01:37 PM   #6
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Re: Anyone get disability because of their CFS

Quote:
Originally Posted by Winnieie
Natasha, hi, you may not be eligeble for disability benefits if you have not worked enough hours in your life. How old are you and how much did you work? I did recieve SSDI which is rare for someone at 35. My lawyer said most people do not get SSDI for CFS unless they are in their 50's. I think because my CFS was service connected at 20% for being in the gulf war, it helped me out alot. But maybe thinks are changing with CFS and disability. Pamela

I'm only 22, and only worked total: maybe a little over a year. Was in school or self employed when not working. Doing nothing now the fatigue is so bad. If I don't qualify for disability, then what?? I have no job, zero income. Live with my parents. Personal health insurance doesn't cover "pre-existing" conditions, and I have asthma, GERD, insomnia, and mitral value prolapse. Take meds for all condition. PLUS, nothing covers contraceptives, and I actually take BC pills because my GERD was out of control due to hormones. Could I go to planned parenthood and get the pill there? I heard they were on a pay scale and you only have to pay what you can afford. But my biggest concern is the other meds I need to take. Who know when I will ever be able to work, or return to school?? I'm very frustrated.

 
Old 10-22-2005, 01:53 PM   #7
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peregrine HB User
Re: Anyone get disability because of their CFS

Quote:
Originally Posted by NatashaW
I'm only 22, and only worked total: maybe a little over a year. Was in school or self employed when not working. Doing nothing now the fatigue is so bad. If I don't qualify for disability, then what?? I have no job, zero income. Live with my parents. Personal health insurance doesn't cover "pre-existing" conditions, and I have asthma, GERD, insomnia, and mitral value prolapse. Take meds for all condition. PLUS, nothing covers contraceptives, and I actually take BC pills because my GERD was out of control due to hormones. Could I go to planned parenthood and get the pill there? I heard they were on a pay scale and you only have to pay what you can afford. But my biggest concern is the other meds I need to take. Who know when I will ever be able to work, or return to school?? I'm very frustrated.
Maybe seeking out a welfare office in your city? I also think Planned Parenthood has a program for low income people or can perhaps direct you to other resources.

All the best!

 
Old 10-29-2005, 05:26 PM   #8
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tanuki HB User
Re: Anyone get disability because of their CFS

NatashaW,

Yes, it is possible. No, it is not easy or quick.
You start by calling the national 800 number for Social Security and they will take your application via a phone interview that they will set up. From there it can take years to complete and may not be successful even then. It is a good back up strategy, but if I were you I would figure something else out in the mean time.

For example, call your local Social Security Disability Vocational Rehabilitation Center and talk to them about getting started back at school with whatever you need to help you be able to be schooled and eventually re-employed. They are the best place to begin. And if you apply with them, even if you don't qualify for their services, they will refer you to all the other county - state - and federal programs that are out there for you to receive assistance from.

But get started RIGHT AWAY, because they all have a process to go through, and nothing is easy! Unfortunately, it can become a full time job just to keep up with the meetings and requirements of getting the help you need to make it from day to day. But be determined, and don't take no for an answer. If someone can't help you, ask for a referral to someone that can!!!

Good luck!
--
Tanuki

 
Old 10-31-2005, 11:37 PM   #9
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ukiahvalleymom HB User
Re: Anyone get disability because of their CFS

Quote:
Originally Posted by NatashaW
My parents are retiring next year, which means the end of being on their insurance. I havent worked for a long time due to my CFS. I was in school but had to quit (hopefully temporarily) also due to the fatigue. Has anyone had any luck getting disability because of their CFS?? I don't know what I am going to do. I am on 5 prescription medications that I have to take. Have GERD also and insomnia and a heart condition.
NatashaW, have you tried applying for personal insurance? With my insurance coverage, my children rec'd a letter from the current Insurance Co. that was to be given to the new Insurance Co. waiving the pre-exisiting condition clause. Check and see if the current Ins. Co. will provide one.

You might consider going on Medicare, once the insurance is dropped, do you live in the states?

I hope that while you do have coverage that you are able to seek treatment to minimize your symptoms and help to start feeling better...then maybe you'll be able to work and have your own insurance.

I'm hopeful to be able to go back to work, too.

I do know of a CFS patient where I go for treatment, who took 7 months off from work and is now back to work fulltime and looks great! He goes in around every six to eight weeks for an IV booster and takes supplements (he's on the maintenance part of the program.) I'm not quite there yet, but soon should be.

Good luck and don't give up, uvm

 
Old 11-01-2005, 03:50 PM   #10
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NatashaW HB User
Re: Anyone get disability because of their CFS

Quote:
Originally Posted by ukiahvalleymom
NatashaW, have you tried applying for personal insurance? With my insurance coverage, my children rec'd a letter from the current Insurance Co. that was to be given to the new Insurance Co. waiving the pre-exisiting condition clause. Check and see if the current Ins. Co. will provide one.

You might consider going on Medicare, once the insurance is dropped, do you live in the states?

I hope that while you do have coverage that you are able to seek treatment to minimize your symptoms and help to start feeling better...then maybe you'll be able to work and have your own insurance.

I'm hopeful to be able to go back to work, too.

I do know of a CFS patient where I go for treatment, who took 7 months off from work and is now back to work fulltime and looks great! He goes in around every six to eight weeks for an IV booster and takes supplements (he's on the maintenance part of the program.) I'm not quite there yet, but soon should be.

Good luck and don't give up, uvm
Hello!

I have not applied for personal insurance yet. I will still be on my mom's insurance (which is WONDERFUL) until June, when she retires (luckily she didn't retired this month, which is what I had prepared for...). However, the ones I have checked out all say "does not cover pre-exisiting conditions." What a joke!! Most people looking for insurance HAVE health problems!!
I haven't had any treatment for my CFS because all my docs say there is nothing to do. I have and am currently taking supplements and vitamins, but what else can I do? My wonderful doc is cluless about where do send. He said he has sent other CFS patients to immunologists before and they just threw their hands in the air because they had no treatment for them.

I dread going on medicare. I don't want to lose my doctor, and don't want to get substandard treatment. I have asthma, GERD, Insomnia, and CFS. Also am recovering from bulimia which I relapse from quite frequently.

 
Old 11-02-2005, 03:01 AM   #11
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peregrine HB User
Re: Anyone get disability because of their CFS

Quote:
Originally Posted by NatashaW
Hello!
I dread going on medicare. I don't want to lose my doctor, and don't want to get substandard treatment. I have asthma, GERD, Insomnia, and CFS. Also am recovering from bulimia which I relapse from quite frequently.
One of the main reasons to get the disability is that you get medicare coverage for your health needs. If you have CFIDS they will be many! Medicare is NOT substandard coverage! In fact, most doctors accept it.

 
Old 11-02-2005, 10:48 AM   #12
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DomNakita HB User
Re: Anyone get disability because of their CFS

Quote:
Originally Posted by NatashaW
Hello!

I have not applied for personal insurance yet. I will still be on my mom's insurance (which is WONDERFUL) until June, when she retires (luckily she didn't retired this month, which is what I had prepared for...). However, the ones I have checked out all say "does not cover pre-exisiting conditions." What a joke!! Most people looking for insurance HAVE health problems!!
I haven't had any treatment for my CFS because all my docs say there is nothing to do. I have and am currently taking supplements and vitamins, but what else can I do? My wonderful doc is cluless about where do send. He said he has sent other CFS patients to immunologists before and they just threw their hands in the air because they had no treatment for them.

I dread going on medicare. I don't want to lose my doctor, and don't want to get substandard treatment. I have asthma, GERD, Insomnia, and CFS. Also am recovering from bulimia which I relapse from quite frequently.

Natasha,

Make the call to Social Security TODAY! don't keep putting it off. Even if you don't qualify for Social Security Disability (SSD) you should qualify for SSDI (which is for people without enough work hours for SSD), and if you qualify for SSDI you also automatically qualify for Medicaid (not Medicare). Which is Very Good because Medicaid covers all of your prescription needs!!!

Hey, I have been dealing with FMS & CFS since 1997, and it took me 4 years to get correct treatment. So I understand how difficult it can be, and you can't even imagine what I lost in my life during those 4 years. But if you don't make the calls, you won't be any further down the road to recovery 4 years from now then you are right now, so you need to get started. If you don't want to attack your disability claim alone, make the call and then call a disability attorney too. Just getting started is going to make you feel better! And don't wait until you are 30 days from no coverage again, because that will be too late. But when you talk to different programs, make sure that they know that you are going to be without coverage, and give them the date, because some of them won't help you until you are without... that's one of the frustrating parts.

Take a look at the post "what to do when you seem to need everything", and follow the steps listed there, they are pretty thorough.

Also take a look at the FM board, and research the FM/CFS clinics. Even if you can't afford to go to them, consider giving the info to your Dr. maybe he will be able to find some answers for you through them.

And I hope that things start looking up for you.
--
DomNakita

 
Old 11-02-2005, 11:38 AM   #13
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NatashaW HB User
Re: Anyone get disability because of their CFS

Thanks for the replies. I was panicky at first because my mom's jobs was offeing buyouts and they started to offer it suddenly and unexpectantly (like, they announed it 20 days before they would have offered for her to retire). So it was unexpected. I had no idea, nor did she, that she would have had the option to retire within 20 days. I wasn't procrastinating....It was just unexpected. Trust me, I would NEVER wait until the last minute to figure out my health care, it is my top priority.

Perhaps I should schedule an appt. with my doc and ask him his opinion about what I should do, and info about free meds, ect.

Last edited by NatashaW; 11-02-2005 at 11:39 AM.

 
Old 11-05-2005, 08:35 PM   #14
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DomNakita HB User
Smile Re: Anyone get disability because of their CFS

Quote:
Originally Posted by NatashaW
Thanks for the replies. I was panicky at first because my mom's jobs was offering buyouts and they started to offer it suddenly and unexpectedly (like, they announced it 20 days before they would have offered for her to retire). So it was unexpected. I had no idea, nor did she, that she would have had the option to retire within 20 days. I wasn't procrastinating....It was just unexpected. Trust me, I would NEVER wait until the last minute to figure out my health care, it is my top priority.

Perhaps I should schedule an appt. with my doc and ask him his opinion about what I should do, and info about free meds, ect.
Do you see a pain management doc, or one that specializes in C.F.? If not, this may not be as helpful as you would like but it's not a bad place to start. He can't do anything for you about SS though... you need to start that process right away. Don't wait for anything... Do it this week! (if you didn't already do it last week). Remember, the WORST thing that can happen with them is they tell you no, and then you appeal! it's a process that you should expect. But they may send you to Dr.'s of their own, so you need to give them a little time to round up all your records and make a decision. So call them first thing Monday.

That's rough what happened with your mom... so now you've got a few months to figure things out. Just make sure you are taking care of something medically or financially related every day! just one little thing, but do it every day!

And keep us updated as to how things go and what routes you are taking, and/or if you need any other information that any of us might be able to provide.

Good Luck Natasha

 
Old 11-06-2005, 04:01 AM   #15
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peregrine HB User
Re: Anyone get disability because of their CFS

Maybe it's changed since my experience, but 13 years ago you needed to find a doctor who would give you the offical diagnosis of CFIDS. Their report will then be instrumental to the process.

 
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