I'm on state disability for chronic migraines, but I haven't been able to determine if that condition will qualify me for SSDI/SSI. Does anyone know if CFS is a covered condition?
I haven't sought a formal diagnosis for CFS since there's no treatment for it, but if it might help with my disability claim, I'll talk to my doctor about it.
[ 12-12-2017, 02:08 AM: Message edited by: SLH516 ]
Posts: 112 | From USA | Registered: May 2016
| IP: Logged |
posted
Anyone aware of some national CFS orgs who could be asked this question?
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
A google search for CFS and SSDI pulled up a lot of links -- some looked reasonably helpful. I suspect you might qualify based on chronic migraines alone, since that is now recognized as a legitimate medical condition (I have them too, but they are reasonably well controlled with medication, and I can continue to work).
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
| IP: Logged |
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Check out James Disability, click on Medical Conditions, then click on Chronic Fatigue Syndrome.
Yes, you can get disbility for this, but you must show that your symptoms are so disabling that you can't work. The form available for CFS on this website will help you in proving that your cannot work due to symptoms.
You will need a good doctor who agrees that you have this diagnosis and who is willing to fill out this form and do all that is required.
. . . Myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life. . .
Founded in 1997 by two 14 year CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) advocates, the goals of the Foundation are to help fund medical research to find a cause, expedite treatments and eventually a cure for this devastating disease.
The NCF also strives to provide information, education, and support to those people who have CFIDS (also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and many other names) — as well as related illnesses such as Gulf War Illness (GWI) and Multiple Chemical Sensitivities (MCS).
Topic: post exertional malaise & Exercise Intolerance -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It may depend upon the state in which you live. There are some social security offices that refuse to even consider CFS / ME or lyme as real. Connect with those in all these different support groups around you to find out more about their experiences - and maybe what / who has helped them.
It's never so much the diagnosis - for any medical issue, really, as much as what you can or cannot do regarding holding any job at all.
Chronic migraine diagnosis, though, is likely as solid a one as you may find. The diagnosis explains the disability.
So it may not matter to try to extend that in areas that are so hard to verify with objective tests and varying issues for each person affected.
[As for what may help migraine, be sure to be scent free and try to avoid gas as your heat / cooking source. Avoid vehicle exhaust, etc. and if those things irritate you, consider if you have MCS, too.]
A SPECT or maybe a PET scan is often helpful for CFS / ME to show hypoperfusion of the brain. And that is common with lyme, too.
Sheila Bastian, PhD has excellent neuropsyc. tests for CFS - if you have to do a neuro test make sure it is specific to CFS / ME, not the usual kind.
Jennifer Brea made a film from her bed to show my illness is real
BBC - 9 November 2017
Five years ago, Jennifer Brea was struck down by ME (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), and found herself bed-bound, a prisoner in her own body.
Now, she has invited the world on an intimate journey into a condition that some deny even exists, interviewing fellow patients from all over the world - from her sickbed. She spoke to the BBC's Natasha Lipman.
[Article, film clips, photos] -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I assume you know that for many diagnosed with ME/CFS lyme & other tick infections have often been found to be the underlying cause and - at that time - the diagnosis is no longer really ME/CFS but lyme (and whatever other infections may be on board).
And that treatment for lyme & coinfections would be in order.
Many go a long time not knowing this - or thinking that if a lyme test is negative, lyme is not involved. But lyme tests are very often a failure to identify it.
You may know all this - but just in case not - and for anyone new to all this . . . .
Though, many of the same symptoms are shared with the different diagnosis, just as fibromyalgia / FM is often a diagnosis but really it's not - it's a collection of symptoms and the same thing often, lyme / coinfections often the root cause but the pain of FM can still remain until the root cause (lyme, et.al.) is addressed.
And there are other things, too, that can be common with the various diagnosis. Sometimes addressing the symptoms with supportive measures can be of help.
Besides lyme and other tick-borne infections, there are still other chronic stealth infections that might be the root cause or otherwise involved in any of these diagnoses. Top of that list: Cpn (Chlamydia pneumonia), Mycoplasma pneumonias, HHV-6 . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks so much, Keebler. The extreme photophobia I experience with my migraines can make it really difficult to google around for info, so all of the links and information you provided are really helpful.
Posts: 112 | From USA | Registered: May 2016
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic