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Fibromyalgia and Disability
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Mark Pellegrino, MD posted:
A lot of discussion has occurred here regarding disability. I don't have any magic secrets but wanted to share some thoughts. In my experience, the majority of fibromyalgia workers are motivated and determined to maintain their jobs, but issues of disability may need to be pursued. In an ideal situation, the employer tries to find something that the individual could do within any new restrictions due to the fibro. More often than not however, the employer and the economy are not receptive to a worker with restrictions.

Patients do not want to become disabled from FM or any condition. They all want to be better. In fact, people would say that when they are working, they think less about their pain than when they are not working. If everything has been tried and the patient is still doing poorly and not functioning well, the disability route may need to be considered. The patient and the doctor need to work together to reach these difficult decisions. The doctor is not a "disability advocate." He/She is trying to help you achieve the best possible funtional level, and medically documenting your condition(s), limitations and prognosis.

The ultimate decision regarding disability rests with "organizations"(Social Security, BWC, etc) which review the applications and determine if the disability criteria are being met. Sometimes it seems as if the disability criteria are as complicated as FM itself! Patients frequently ask me questions regarding the disability process and if an attorney is necessary. I am not an attorney so I am not knowledgeable on specific legal issues regarding disability. I can provide medical advice and information if FM is severe, chronic or functionally limiting for a given patient of mine, but sometimes an attorney who specializes in disability may be helpful.

There are a number of questions that are evaluated in determining disability:

1. Is your condition "severe"? The obvious is that the FM must interfere with work abilities.

2. Is the condition permanent? FM is not expected to recover...ever. :(

3. Are you presently working? This is often a paradox since individuals may begin to pursue disability while they're still working and if you are earning so much a month, you would not be considered disabled.

4. Are you able to return to your previous job? Fibro can be a disabling impairment but there is a lot of "gray area" on how severe it is and whether it prevents you from returning to previous work.


5. Can you do any other type of work? This is often the deal breaker. People with FM are told that they could still work, even if it's a sedentary job. The problem is that the economy is not favorable for inserting people with sedentary restrictions into steady, gainful employment. How many jobs are there modeling a recliner chair?!

My patients tell me it's very difficult to obtain disability benefits for FM, much more so than for more well-defined or "traditional" medical problems.

Disability paradox: I frequently see patients who have "dual" objectives. On one hand they indicate they want to improve their fibro, but on the other hand they are also seeking disability. These objectives are actually conflicting, hence my term "disability paradox". It is difficult to improve one's abilities if disability issues are requiring a lack of ability to be spotlighted. The very nature of a disability process requires patients to "prove" they are not able to function. This is in direct conflict with rehabilitation treatment, or trying to make the patient as able and functional as possible.

As you know, your FM doesn't go away if you are successful in getting disability benefits. Once the disability battle is won, our goal continues to be a simple one: Optimize our quality of life despite having fibro. Why is such a simple goal so complicated?

Dr. P
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lb707 responded:
Dr. P that was very well written from Dr. point of view. I am sure the job of recommending someone to give up there job is a hard thing to do.

I am one of those on SSD.... it took me 5 years after being told to consider it. When I finally quit my job and was in the application process I was just going to give up and find a job I could do..... my brother ask me a good question. He said "if you were an employer would you hire yourself?"

I feel it is the last resort as it brings it's own emotional issues. I still I am still making plans on what kind of job I am going to do when I am cured, I have even looked into taking some classes.

Laura

Laura
 
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Dollbug responded:
Hello Dr. P.....and thanks again for some good info here....I did want to make one comment though to you....as you know most of us FMers use to have the A personality....and we were use to doing our job and giving more than 100 % of what we should be giving....(as there are some people who do not pull their own weight, much less giving more) and with our mean illness tugging at our bodies...there are days when we find it hard to even do what we have to do just to take care of ourselves....not counting trying to take care of a job, a house, and whatever else there is to do...

There are days when I hate not being able to work...but I know that if I did work....I would be much worse off than I am now....as I would think that I still have to give more than 100 % to my job....and this is not counting the other things in life that one must do besides the job...

I did computer work.....and hardly ever had a break...I had to have enough mind to keep track on everything I did at work...as I disbursed millions of dollars to insurance companies and tax offices....so I worked a lot with numbers and had to balance all of this in my process....

Without a doubt.....I know that I could no longer even try to do this kind of work....I would probably get fired either for missing too many days or for making too many mistakes...so I know that I am much better off now....resting when I have to and not having a tight schedule to keep each and every day....

I think this is one reason that I have the health issues that I have today....because I constantly was always on the go....without realizing just how much I was pushing myself to the limit or crossing the line....and I am sad to say...that the company I worked for....thought the more I did...they expected me to do even more....so it was a never ending process....

I now live a very simple life....and I can not even imagine trying to get back into the rat race again....I no longer have the ability to keep up....even if I wanted to...

I did think though that once I did not have to get up and go to work and keep up with a routine each day that things would be so much better for me...(which they probably are)....but I guess I just expected I would feel better than I do now...

I do not think anything is simple in life at all....and it is never as it seems....regardless of what it is....

Thanks for sharing....


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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hisfaithful1 replied to Dollbug's response:
I want to Thank you Dr. P for being willing to share your insights and feelings about a subject which can be so difficult for anyone facing this dilemna.

I happen to be going through the disability process right now and can tell you it was an emotional rollercoaster for awhile just trying to decide if I was truly ill enough to take such a drastic life changing course. I felt guilty even though I knew going back to work was not an option. Not only because of the pain, and fatigue, but also the terrible memory and concentration problems that have moved into my brain, and made itself right at home by the way.

My DH is disabled too since about a year and a half ago. This made the decision even harder.

The good news is, I came to the conclusion, (with DHs full support, which helps more than words can say) I will except this new, and yes sometimes very challenging new chapter in my life. (well ok it's more like a new book lol ) I think it's so important for us fibromites to except the bad, though I know sometimes it is nearly impossible, we gotta try! Find ways of enjoying life, even the small things can be so special. I have found in this slower paced new chapter, how great it is to get outside, walk when I can, if i can't, then maybe sit outside with a glass of tea, watching the wonder of a beautiful sunset, or playing cards or scrabble with family.

My hope and prayer is anyone who has to stop working because of fibro will be able to come to terms with the decision, and not beat themselves up about it. I'm still struggling, but it is getting better. I was able to work for about 30 years, parttime when my kids were small.

I know everyones situation is different, and my heart gos out to all who are dealing with the prospect of disability, especially the younger ones, I'm 54, and fibro didn't hit me till probably about 2 years ago, maybe more. I feel fortunate for that.

Thanks Dr.P for all your help and guidance to all of us here. What we learn is so helpful, and knowledge can impower us to live our lives the best we can, even if we can't do some of the same things we use to.
 
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hisfaithful1 replied to Dollbug's response:
I want to Thank you Dr. P for being willing to share your insights and feelings about a subject which can be so difficult for anyone facing this dilemna.

I happen to be going through the disability process right now and can tell you it was an emotional rollercoaster for awhile just trying to decide if I was truly ill enough to take such a drastic life changing course. I felt guilty even though I knew going back to work was not an option. Not only because of the pain, and fatigue, but also the terrible memory and concentration problems that have moved into my brain, and made itself right at home by the way.

My DH is disabled too since about a year and a half ago. This made the decision even harder.

The good news is, I came to the conclusion, (with DHs full support, which helps more than words can say) I will except this new, and yes sometimes very challenging new chapter in my life. (well ok it's more like a new book lol ) I think it's so important for us fibromites to except the bad, though I know sometimes it is nearly impossible, we gotta try! Find ways of enjoying life, even the small things can be so special. I have found in this slower paced new chapter, how great it is to get outside, walk when I can, if i can't, then maybe sit outside with a glass of tea, watching the wonder of a beautiful sunset, or playing cards or scrabble with family.

My hope and prayer is anyone who has to stop working because of fibro will be able to come to terms with the decision, and not beat themselves up about it. I'm still struggling, but it is getting better. I was able to work for about 30 years, parttime when my kids were small.

I know everyones situation is different, and my heart gos out to all who are dealing with the prospect of disability, especially the younger ones, I'm 54, and fibro didn't hit me till probably about 2 years ago, maybe more. I feel fortunate for that.

Thanks Dr.P for all your help and guidance to all of us here. What we learn is so helpful, and knowledge can impower us to live our lives the best we can, even if we can't do some of the same things we use to.
 
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hza54 replied to hisfaithful1's response:
Dr P;
Iam a pharmacist. My job is in a chain pharmacy who makes around 1,000 prescription. I work the shift of overnight. I am out sice may 21. my diasbility insurance denial my request and I fighting it. My pains are bad , my cocentration is poor and my short memory sometimes is 0. Sometimes I can not move, When I read the documentation of my doctors evendo they understand that I can not work is very poor. I am with a psyquiatric and rheumatologist. Dr. p my pains are so bad and i am very depressed. I can not work Iam not receiving any money since June. And my reserve is going very low. tell me what I can do give me your respose. Thanks for all your help.

hilda
 
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An_199374 responded:
Dr. Pellegrino,

Ooops!! You messed up, you naughty boy!

There is no such thing as a "disability paradox".

Most people who are on disability (or seeking disability), pray to God everyday that their symptoms improve!!

I personally don't know of "anyone" who doesn't put 100% effort into improving their disabling symptoms whether they are receiving disability pay or not!

Receiving any type of disability income does not affect the determination of most people to push themselves to become their old selfs "again"!

I went on disability 8 years ago, it took 3 years for me to be able to say "I can not work!" without crying. For the last 5 years I have been trying to erase the word not.

Yes! we must prove that we cannot function, inorder, to put food on the table but that definitly does not mean that we are giving up!!!
 
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georgia888 responded:
I have been struggling with the decision to quit work & file for SSDI since I was diagnosed three years ago. I am 55 years old & my condition has worsened.

Each morning while I struggle to get ready for work I ask myself why don't I just give it up & apply for SSDI. Of course, there's the fear of going through the grueling process & then of the possibility of being denied. However, I do believe I can win for I have moderate to severe osteoarthritis & the combination of that & FM is brutal. I believe my age is in my favor as well.

When I hear co-workers complain of a headache or upset stomach & take time off from work for such problems, I think if only they knew how I felt.

I have not yet received support from my PCP or rheumatologist for applying for SSDI, however, I believe if I pursue the matter with them, they will agree. If not, I will look for new doctors.

Before my life changed with FM, I thought I would work well beyond retirement age for I truly enjoyed work. Staying in any one position is very difficult & when forced to do so (as at work), I not only hurt during but all the more so later on.

I do look sick. I look in the mirror & see the sickness in my face. My hair has become so thin & it continues to fall out daily.

I have accepted the fact that I am sick but I continue to take the best of care of myself with daily stretching, walking & an excellent diet with lots of vitamin & herbal supplements. I have always taken good care of myself but unfortunately, that did not keep me from acquiring this dreadful condition.

The word "disability" carries a stigma. That will never change. If it makes those of us who are forced to make this decision, let's look at it at as taking a medical retirement. We don't need to feel any worse than we already do.

georgia
 
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TCL38 responded:
Beautiful post Dr. P!

As I journalist people, including SS, people that is a sedentary job which I assure you it is not. You literally have to be ready to hike a mountain or stand for hours on a moment's notice which is not compatible to FM. Not to mention the need to assimilate large quantities of often technical information and then write it so that the average fifth grader could understand (Did you know that's the "goal" of most newspapers?). And let's not forget random things like walking through a herd of buffalo carrying 10lbs of camera equipment, climbing on top of my SUV to get the shot of a lifetime or understanding the broken English of the deputy general of South Korea (these three stories were in a 10 day period). Then there's the need to go from a three-hour long city council meeting and produce an 800-word story in less than 30 minutes with an editor calling every 5 minutes to see if you're done because sending the file (that's what the whole paper is called) to the printer is literally waiting on you. I had such the talent 18 months ago. There is NO way I can continue in what I have the most experience and education even my editors and bureau cheifs agree. And yet SS agrees FM and my co-conditions have a significant imact on my life but they still feel there's something I can do. And oddly I do agree.

Paradox! Oh yeah I battle it all the time.

However, I do not think what I can do would to be work in a traditional environment simply because I am not "stable" enough. My FM and my co-conditions are all over the place all the time. As I am working from home now I have literally had days where as I'm writing I suddenly get so tired I can't hold my head up so I take a few steps my desk to my bed and crash. No job no matter how "accomodating" is going to let me nap for five hours. My best course of action is to be my own boss. Unfortunately that leaves me and my family flying without a net (income and insurance). It galls me to no end that I have worked since I was 14 years old and now I am having to surrender up to $6000 of my future disability payment to an attorney. Ironically before FM struck, I was contemplating a PhD or law school and guess what.....I still am!!! And law school is winning. I actually think I would be an effective litigator. However, with the nearest law school a 90 minute one-way commute, little discernable income and children still at home the reality of law school is more than I can fathom. So while I am waiting, I am writing. Right now the plan is in four years when my last little bird leaves the nest I'll tackle law school. It's really my best hope at accessing a future for myself and my children. This FM business isn't cheap you know.....

Tanya
 
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Mark Pellegrino, MD replied to TCL38's response:
You most definitely would be an effective litigator, Tanya!

Your post was fascinating and informative. I think many others like me would love to read more about the adventures of a journalist...the writer who writes about her experiences. Another paradox!

And when you get your juris doctorate, you and I would be a "pair-'o-docs"

(I agree, should have stopped before the last paragraph.....)
 
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TCL38 replied to Mark Pellegrino, MD's response:
Ahhhhh Dr. Mark you have brought a chuckle to a very grumpy woman tonight. Thank you. Just about the only thing worse than wanting to leap into law school now instead of four years from now is trying to date with FM--so far a business man, an nurse anesthesiologist and of all things a lawyer all think I'm witty, intelligent and some degree of "cute"--but as I have sprung the FM trigger they all have looked at me different. Hope is not lost on any of them yet. It's just fascinatingly frustrating (how's that for a paradox) to see them change how they look at me once they know. And these are smart, successful men so I'd hate to see the reaction of someone not so smart and/or successful. I keep trying to tell myself the good news is there are three men who think/thought I'm wonderful and to have hope but fankly I really just want to spit nails. FM is a major killjoy.

Thank you for your kind compliments. You will have just such a chance to read just such an adventure. The book of which you speak is in the works. Well sort of...I am not sure how much of "me" will end up in the book but I am in the process of interviewing some very special characters who have graciously agreed to let me tell their stories. In describing the concept to them one of them remarked "it's like Chicken Soup for the Fibromyalgia Soul." The comparision brought me to tears but it is what I hope will be the perfect description of the finished product.

In taking stock of all FM has done to me and having several long conversations with God, I know part of my "why this, why now" is because I can and will write and am writing about it.

And the "pair-o'-docs"...lol...I have heard that before actually but it still made me laugh. My professor ex-husband and I thought it would be a fun name for a publishing company or writing service. Maybe if one of these highly educated men can look past FM I could still use it some day......

Tanya

PS...I recognize being an effective litigator is a nice way of saying I won't shut-up and I argue well....LOL...it's okay Doc you're still a keeper in my book :) Seriously, thank you!
 
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annette030 replied to lb707's response:
Hi, Laura

Your brother made a good point.

I applied for SSDI without asking or even mentioning it to my doctors. The first they knew about it was when SSA contacted them asking for my medical records. My rheumatologist mentioned that he had received the request for medical records, and that SSDI was a tough thing to get. I shrugged and we went on with my appt.

After I was approved at the judicial level, and I told him, he commented that he had written them a letter in addition to sending my records and told them that he would not hire me because he would never be able to count on me being there to work. I am an RN with FMS. I take on-line classes to maintain my RN in case Dr. P or someother wonderful doctor finds a treatment that really works well enough for me to go back to work.

It turned out all my doctors supported my claim, not just the rheumy.

Take care, Anentte
 
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annette030 replied to An_199374's response:
First of all I do not pray at all about getting better. If God exists, he will do as he pleases about all of us. I am ambivalent about his existence, but if he does exist, I do not believe that the one who gets the most prayers will win the prize.

I have known many people either trying to get on disability or already on it, who make no effort at all to get better and go to work again.

Not everyone is like you and I about wanting to go back to work.

Dr. P is correct in my opinion, while one is saying one can never work again in order to collect SSDI it is paradoxical to maintain hope and continue to try and get well. That would mean you would have to lie on your application forms I think.

Just my opinion. I have been on SSDI for about 14 years, and I was terribly depressed when I could no longer work.

Take care, Annette
 
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dmjjls responded:
Dr. P
I to have applied for SSD which was not an easy decision, I'm now on the waiting period for a court date with a judge. It is so frustrating to explain to SSD and LTD what and why you can not work anymore, which if I could I would in and instant! I have been receiving LTD insurance benefits from my last employer for 10 months. I just received a letter yesterday that they are now revamping what they consider disabled, and now they say I don"t qualify! They feel I could get a sedentary job in my area that would work for me, they dont disagree with my Dr's diagnoses they just dont want to pay me for something I paid for while I was employed!
I without a doubt know their is not an employer out there who would consider hiring me when I explain I'm in constant pain, I get horrible spasms in my legs-feet and arms-hands, I'm exhausted because I cant sleep because of the pain, my memory and thinking process is horrible, and on top of everything else I fall on average 3 times a month. If I was the employer I wouldn't hire somebody with that much liability.
I dont know what else I can do to explain what life is like with FMS and CFS. I will not give up, not only for me but for my husband and kids who have watched what FMS-CFS has done to me. I'm a fighter but sometimes it gets really hard to fight.

Thanks for sharing your thoughts, Mia
 
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annette030 replied to dmjjls's response:
It is tough, but keep on fighting. They count on wearing you down so you just give up.

Take care, Annette


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