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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, February 1, 2013

Friday Tidbits: Fibro Disability Woes

Don't let this be the end of the road for you!

Fibromyalgia patients come in all shapes and sizes and the severity of the illness varies from patient to patient.  While some are only mildly affected others are completely devastated.  The most severely affected cannot work to support themselves or contribute to the family income in any way.  Fortunately, many such patients have worked for companies which had provided them with long-term disability benefits in the event that they became too ill to work.  Yet another safety net is social security benefits.  However, a problem all too often arises when it comes to trying to obtain the benefits which a patient deserves.  After all, who wants to dish out money?  Worse yet, who want to dish out money for an "invisible" illness?  Consequently, often the disability carrier or the social security administrative law judge rely on a "Functional Capacity Evaluation" (FCE) to make the final determinations. 

Few will argue that FCE's are useful tools for evaluating a patient's ability to perform physical tasks, such as walking, lifting and carrying, especially useful in the evaluations of patients with such neurological diseases as MS, Parkinson's Disease and strokes.  However (and WHAT a "however" it is!), FCE's are woefully inadequate in the evaluation of patients with fibromyalgia.  

Why, you may ask? 

It's because even the most severely affected fibro patient may be able to function fairly well on a good day for a short period of time.  However (another big "however"!), typically they are not able to SUSTAIN that level of activity for longer periods of time as would be required in a work place situation. This is not just my idea but Dr. Robert Bennett, a world famous fibro researcher, published an article in the Journal of Rheumatology twenty years ago making just this point.  Many things about fibo have changed over the years, there are many controversies in the world of the fibro, but this is one fact that's remained constant. 

In his article entitled, "Disabling Fibromyalgia: Appearance vs. Reality,"  Bennett makes the very important point that the time element, for the most part, is left out in most FCE tasks.  That is, the physical therapist who typically would evaluate the patient, might determine how much weight someone could lift, or the ease with which a patient could change positions.  But this does not represent the type of impairment most fibro patients typically have.  Namely, the fibro patient cannot perform these tasks over and over again nor can the evaluator see one of the hallmarks of fibro, that of post-exertional malaise.  The evalutor doesn't see what condition the fibro patient is in 24-48 hours after testing.

Another example, which we who have fibro understand all too well, is that on a bad day the patient may only be able to lift a light weight a few times, but even on a good day that very same patient might do better - BUT not well enough to qualify that person to be gainfully employed. 

Furthermore, the FCE does not take into account the cognitive impairment that many fibro patients have. Add in the certainty that the FCE cannot measure or take into account comorbidities like growth hormone efficiency, or postural hypotention and you have a real mess. 

So, if you cannot work and you are applying for disability benefits you will likely be required to take the FCE. Don't be discouraged if the therapist or the doctor hired by the disability company decrees that you are capable of employment.  Remember they are likely relying mainly on the FCE.  

So, the question then becomes: what should you do?  

  • First: Get your treating doctor to write a report explaining your condition and specifically describe why you cannot be productive in the workforce.  The more details and observations your doctor is able to put into the report, the better.
  • Second: If you are denied benefits after submitting your doctor's report, consult an attorney who will likely have you seen by an expert in the field, who can explain to the disability carrier or the Social Security administration why you can't work. 
  • Third: Get your local politician to act on your behalf.  Often your congressman can do some phone calling and get things moving in YOUR direction.  As I wrote in an earlier post, this may not always work since it often depends on how populated your area is and thus how high or low you are on the totem pole when it comes to your congress person.  But that person is a good place to go because - just think about it - that congress person needs to be reelected every two years: he/she needs your vote and the vote of your acquaintances, family, friends and even fellow church-goers, members of the Knights of Columbus, Kiwanis, People On Behalf of Saving the Blue Lagoon, for that matter. Congress(wo)men fear losing votes!

The point is that the FCE can and is most often misleading because no one wants to hand out money to you - or to anyone for that matter - especially in today's economy with budget cuts at every turn.   

At some point most fibro patients get to the point where they are pretty well educated about their illness, often due to the truism that it's hard to find a sympathetic and knowledgeable fibro expert.  Therefore, "Educate yourself"  is often redundant advise.  However, thanks to fibro-brain, not all of us are "together enough" to see straight when it comes to the paperwork, nor the legalities of what we are entitled to, how much we are impaired, and so forth.  So, if you see that you're in for a long fight, going the legal way is often wise.  I know, it's all difficult to deal with, but it's still a necessary evil.  

Furthermore, don't be a victim.  Just as with health insurance, most insurers will turn you down the first time because they bank on those who put in a claim to take the rejection as the final word.  They know a certain percentage of those who are denied will "assume" that it's a lost cause.  Well, it's not!  Don't let some entity which is in the money-making business and seeing only the bottom line ruin your life.  You've already been dealt a wicked hand.  Don't let things go completely against you. 

You, the patient, were promised these disability benefits so if you need and deserve them, fight for them or have someone fight for them on your behalf.  This is not easy to do, but if you know your rights and the literature out there (such as the aforementioned article by Bennett) you may well figure out a way of going about getting what you deserve.  

Hopefully, the aforementioned tips will be of help to some.  (One can only wish!)

As always, I hope all are feeling their best, only better.  Happy weekend, everybody!  Ciao and paka!

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  1. Excellent advice indeed. However, I think the FCE is only used in the USA? I'd never heard of it before now. According to Wikipedia it's an American thingy.

    Though getting disability in Canada is no less difficult than anywhere else. >.< I'm waiting to hear about 2 different applications still. CPP I know they were waiting on more information (for who knows how long nor if they were ever going to bother to inform me had I not called first) but the other.. who knows? It's only been since last June that I sent the app in. *sigh*

    1. Yes, the FCE is only in the US. I was also using it as an example. xx

  2. I'm currently in my 2nd year with my SSDI claim. I'm expecting a letter stating I've been denied any day now. It's a long fight but it's one I'll continue to fight due to my severe chronic pain conditions.

    1. Hi Berry! Good luck with your claim. It really IS such a rough road but hang in there! xx

  3. This comment has been removed by a blog administrator.

    1. You're quite welcome! So glad I could be of some help, Erminia. I wish your friend the best of luck. xx

    2. Ermina, sorry about the accidental delete of your comment. I returned to the blog too early, trying to clean up some of the spam that got through and accidentally hit your comment; it showed me I was not ready to resume blogging! ;) xxx