CFS and Disability: To Do or Not To Do

October 28, 2006 10:58 AM

A few years back I was diagnosed with Chronic Fatigue Syndrome. For a while I was fairly dubious of this diagnosis but now that it has been confirmed as a genetic disorder I feel maybe I should get over my pride and start treating this like the life-affecting problem it is.

I have had to make lots of compromises with my life in order to keep working and supporting myself. I stay on a strict sleep schedule even though this makes a social life largely impossible because I know I need to to stay "on the ball". I have screwed up before and feel I'm at the end of my nine lives, so to speak. I am completely sure that the problem is CFS and not competency; when I am on the ball I perform very, very well and when I'm not, I sleep through multiple alarms for days on end, fall asleep at the drop of a hat, can't focus, etc.

Anyways, I'm not insured and I really think I should be. Because I can't really handle standard full-time work (I have 2-3 part time jobs and make sure one allows me to work at home) I don't really see finding a job with benefits in my future (I also tend to end up with small companies and nonprofits, due to the flexibility and I guess I am a bleeding heart). I think I should try to get on disability for the Medicare.

But I'm worried it will be a huge resource-sapping endeavor with no pay off. I really can't afford to spiral down because of something to help myself. I also can't afford a lawyer. Hivemind, any experience with getting disability insurance for such a borderline-legitimate illness?

posted by anonymous to health & fitness (9 comments total)

Lawyers take this type of case on a contingency basis (I'm fairly sure I have the term right) daily. But before going that route, you should talk to your doctor and gather the required documentation, then call the health and services office (whatever it's called in your area, and speak to them about applying. Before you even think about getting an attorney, you need to get turned down first. It may surprise you.
I've never been on SSI disability myself, but my ex-wife's entire family seems to be on it for one dubious reason or another.
posted by IronLizard at 11:43 AM on October 28, 2006

Disability may be an option. This is personal experience from working in Ohio for SSA disability determination (the disability decisions are made on a state level), but impairments such as CFS and Fibromyalgia were very hard to grant because of some of the skepticism of the doctors reviewing the cases. This is not to say don't try - determination is made on a case-by-case basis, but make sure that you have solid medical records (which may be a problem since you don't have insurance - but the state will send you to their doctor) and that you are completely honest in answering the forms they ask you to fill out. I had to deny people because they said that on one job the most they lifted was 20lbs, when they did lift 50lbs on occassion - these distinctions are important. And it sounds like you may have problems dealing with stress and signs of depression - CLAIM THIS, they will send you to a state psychologist. Also, if approved for disabitlity, you have to wait 2 years before you are eligible for medicaid.
I never recommend an attorney until after the reconsideration phase - attorneys really never do much during the first two phases that could have an impact on your case, and thus do not earn the percentage that you are granted if you do get benefits. The only point in time where they are helpful, is when you get to the hearings stages and a legal mind is necessary. Most SSA attorneys work on a contingent basis, where they get a certain percentage of your SSA award if you get granted.
If you have any other questions, feel free to email me.
posted by miss meg at 11:55 AM on October 28, 2006 [1 favorite has favorites]

A friend of mine has CFS. He is on a disability pension. It's not "borderline-legitimate", it's an acknowledged medical condition that can interfere with employment. While he is occasionally frustrated with himself, I don't recall him ever mentioning that the government makes him jump through hoops to keep the pension.

(This is in Australia.)
posted by krisjohn at 3:04 PM on October 28, 2006

I have CFS and health care. Sadly my Docs aren't very helpful.
I have one suggestion. Work out. Excercise. I went from feeling that I couldn't handle life anymore to feeling pretty damn good. Every once in a while I still fall asleep at work or in my car, you know what I'm talking about. This is the best I've been in years.

I just do a brisk walk for about 1/2 hr to 45 minutes every day, about 2 1/2 miles. If I miss a day or two (this is the litmus test) I'm sick, sleep on and off all day, miss work, and feel generally depressed.

You weren't asking for home remedies, but this changed my life and I hope it can work for you!

Also, e-mail miss meg, she's on the ball.
posted by snsranch at 5:07 PM on October 28, 2006

I also have CFS and health care, though I haven't tried putting myself through federal benefits hell. (Hooray for spousal benefits.) Health insurance sure comes in handy, if for no other reason than that having CFS does not prevent you from being, say, run over by a car. And I've found a doctor who keeps up with recent research and has done me a lot of good.

If you happen to be here in Washington State, I'd recommend that you get in touch with the Washington Coalition of Citizens with Disabilities. A friend of mine with a very obscure, disabling illness got a lot of help from them in navigating the benefits maze, particularly in the early stages. There may be similar advocacy organizations where you are.

Unsolicited personal experience stuff: it's true that exercise is great, but be careful not to put yourself into a push-crash cycle. (Post-exertion fatigue; ain't it fun?) I know how tempting it is to push it out of sheer pigheaded pride -- oh, do I know -- but now that my doctor has talked me into tempering my exercise with a little caution, I've found that I have more good days and the good days are better. What I've found is that brisk exercise is a problem for me, but slower exercise -- Pilates, yoga, light weightlifting -- doesn't zonk me out nearly as effectively. If you're in the same boat, you may wish to do what I did: get yourself a cheap heart monitor and find out just where your limits are at the moment.

I've done especially well with Pilates and physical therapy; an awful lot of us with CFS have hypermobility, and gaining core strength has helped me stabilize my lumbar joints. That's helped my energy levels a lot; I don't get so tired from being bounced around on the bus, for instance. If you feel you may have hypermobility issues, I'd recommend seeing a PT.
posted by sculpin at 12:46 AM on October 29, 2006

Like snsranch, I have terrible doctors, but was diagnosed with CFS when I was 12. Ever since I'd been in spirals of worsening health and fitness, but in the last year have managed to overcome the greatest problem which was the inability to regain any fitness.
Excercising caused leg pain and the like, and I'd have to go and rest, and it just all turned into a big catch-22 situation. Fortunately, in spring this year I managed to overcome that and have been doing so much better. I still suffer the symptoms, but I can even go some way to overlooking them now.
So basically, the only thing to do is excercise, the only thing to watch for is overdoing it which has a disproportionate effect on your body. And if you're anything like me, avoid adrenaline.
posted by opsin at 4:04 AM on October 29, 2006

Can you tell us where CFS has been "confirmed as a genetic disorder?" Just curious.
posted by fourcheesemac at 6:48 AM on October 29, 2006

I'd guess the poster is referring to a couple of exciting papers that came out last year in the Journal of Clinical Pathology:

1. Kaushik N, Fear D, Richards SCM, et al. Gene expression in peripheral blood mononuclear cells from patients with chronic fatigue syndrome. J Clin Pathol 2005; 58:826-832.
2. Smith J, Fritz EL, Kerr JR, et al. Association of chronic fatigue syndrome with human leukocyte antigen class II alleles. J Clin Pathol 2005; 58:860-863.

Incidentally, I wouldn't agree that exercise is the only thing to do. There's evidence that oxidative stress plays a role in CFS, and anecdotally I can say that I've had a remarkable and surprising improvement now that I've started taking a boatload of antioxidants. And then there are all those healthy-eating things that everyone knows they ought to do and hardly anybody does; those seem to have helped too. And though I haven't tried it myself, CBT appears to have a pretty good track record in helping people get straight with what CFS is about, what they need to do about it, and how to handle it socially. (There have also been grander claims about CBT and CFS, but it is my understanding that those claims have been largely discredited.)
posted by sculpin at 10:41 AM on October 29, 2006

I know you didn't ask but,
A friend had CFS for 10 years, also had to have multiple part-time jobs to keep afloat, was miserable, failed marriage because of it, etc. He tried everything.
Then he met a guy on a plane who recommended ice baths and they worked. These were VERY painful since he would get 50lbs of ice in the tub and the water was below 40 F. He would stay in as long as he possibly could, long past the teeth chattering, all the way into full body shaking, 5-10 min at first, working up even longer. I repeat, VERY PAINFUL. He did them at least once a week for more than a 2 years, kept up with it because it worked from the very beginning. He tried the ocean but found it wasn't cold enough (SoCal), nor were cold showers. He was able to wean himself off the ice baths but still takes cold showers. Yuck, but he's now extremely fit and healthy, he even does triathlons. He ocean swims during the winter which seems to be enough now.
posted by johngumbo at 12:35 PM on October 29, 2006