The Disability Paradox, and How a Fibromyalgia Specialist Can Help Patients Preserve Gainful Employment

Excerpted with permission from Chapter 37 of Dr. Pellegrino’s very popular book, Fibromyalgia: Up Close and Personal.*

The Fibromyalgia worker’s personal physician has an important role in helping the worker preserve gainful employment. Flare-ups of Fibromyalgia occurring at work need to be evaluated by the physician and treated aggressively. Most of the time, a flare-up is related to a temporary situation that can be successfully treated. The person can resume a normal baseline and return to regular job duties.

Part of the treatment approach of a Fibromyalgia worker who is experiencing a flare-up is the need to consider work restrictions. These can range anywhere from complete time off work to limiting responsibilities.

The Family Medical Leave Act

The Family Medical Leave Act (FMLA) was passed to allow workers to take time off work when they (or family members) are incapacitated and require medical treatment for a serious health condition. An employee who takes an FMLA leave is assured that his or her job will remain available once the medical condition has disappeared or stabilized. A healthcare provider must certify an FMLA leave. I complete FMLA forms for my patients when necessary.

On the FMLA form, Fibromyalgia is defined as a “serious health condition” under Category 4: Chronic Conditions Requiring Treatment. This chronic condition requires periodic visits for treatment, continues over an extended period of time, and may cause episodic incapacity (flare-ups that make the person unable to work).

I describe the medical facts supporting the diagnosis of Fibromyalgia and the need for FMLA certification, and would indicate if the condition is incapacitating or can cause intermittent inability to work a full schedule.

I usually state that Fibromyalgia is a condition that may unpredictably flare up from time to time, resulting in impairment of work ability, and may require a time off work on a temporary basis. I describe the health services needed, such as medications, therapies, or injections, and explain the justifications for a leave from work.

A leave from work may be brief – one or two days – or may require a few months. The patients and I work together to keep time off work to a minimum and prioritize returning to work and staying there as much as possible.

If You’re Able to Continue Working

If the patient is able to continue working, work restrictions may be necessary. Examples of work restrictions specific to a patient with FM include:

  1. Not working more than eight hours a day five days a week. Specifically, no overtime or weekends.

  2. Working part-time hours, working day hours only, or working flexible hours.

  3. Avoiding temperature changes (no exposure to cold or damp weather).

  4. No direct air-conditioning drafts.

  5. No repetitive reaching or overhead use of the arms.

  6. No repetitive bending or leaning forward.

  7. No sitting, standing, or walking for a long period to time without altering positions.

In addition to work restrictions, a prescription for specific adaptive devices may be necessary. This could include:

  1. Phone with headset to minimize the reaching and benging required to manually hold the phone.

  2. An ergonomic chair.

  3. A modified typing station that includes a drop keyboard, wrist bars, arm rests.

  4. A back brace to be worn at work only.

Many times I will place absolute restrictions on patients in terms of weight lifting (no lifting more than 20 pounds frequently and 50 pounds occasionally). If a person is experiencing a flare-up, I may temporarily place more restrictions depending on the individual situation.

If the flare-up resolves and the person returns to baseline state, the restrictions can be removed. I prescribe rest often as part of a treatment program. If repeated flare-ups are occurring within a certain job description, it may be necessary to place permanent restrictions on the worker.

The Issue of Disability

It is my experience that the majority of Fibromyalgia workers are motivated and determined to maintain their jobs, but issues of disability may need to be pursued. I think that total disability should be rare in Fibromyalgia, and despite all the problems, there should be something that the individual should be able to do.

However, the economy is not always receptive to a worker with various restrictions due to a medical condition, and all factors have to be considered when determining whether total, partial, or no disability applies to a person with Fibromyalgia.

The patient and doctor need to work together to reach these difficult decisions.

I believe in maximizing one’s abilities despite his or her medical condition. In an ideal situation, there will always be some type of job an individual with Fibromyalgia could perform despite the pain. Individuals with pain who are gainfully employed will think less about pain. I recognize a big difference between the ideal situation and the real world, and I certainly work with each individual’s situation to try for the best possible quality of life.

I’m often asked how I can continue a hectic full time schedule with my Fibromyalgia. I remind them that everyone’s Fibromyalgia is different. My job is a sedentary one. I’m supposed to be using my brain mainly. I am able to shift my body positions to avoid strains. I can control my hours to allow rest times. Sure, I get flare-ups like everyone else, and I deal with them when they happen. I hope I can continue to work for a long time. I always think ahead, but I take one day at a time.

And The Disability Paradox

I frequently see patients who have “dual” objectives. On the one hand, these patients indicate they want to improve their Fibromyalgia condition, but on the other hand, they are also seeking disability. These objectives are actually conflicting. Hence my term: disability paradox.

To improve one’s condition is to focus on ability, or what can be done to help a person become more functional. The Latin word “habile” in rehabilitation means “to make able again.” It is difficult to improve one’s abilities if disability issues are requiring that the lack of abilities be spotlighted.

To become “disabled,” one must convince the disability organization of an inability to perform certain functions required to maintain any type of employment and that these impairments are expected to persist over time and not improve. The very nature of the disability process [addressed in Chapter 38] requires patients to “prove” they are not able to function, which is in direct conflict with rehabilitation treatment philosophy. Hence, a disability paradox exists when someone is seeking both treatment and disability.

Treatment may help a patient feel better, but a disability award provides income. Which do you think takes priority? Whether the patient seeking disability is consciously aware of it or not, the overriding priority is to “win” a disability award and not risk “losing” one by feeling better with treatment.

Based on my experiences with the disability paradox, I find it very difficult for patients to report to me ANY improvement with any treatments as long as the disability status is pending. No matter what I prescribe or try, practically everyone who is pursuing disability will indicate that the treatment didn’t help or made very little difference. I don’t think it is cost-effective anymore to try new treatments on these patients, so I now recommend that any new Fibromyalgia treatment be deferred until AFTER a disability decision is made.

Long-term follow-up studies on patients with Fibromyalgia who have been rendered disabled or awarded a legal settlement have shown that the majority of them continued to be bothered by Fibromyalgia and then seek medical treatment for this condition. In surveys, people with Fibromyalgia rank their condition as more disabling than individuals with rheumatoid arthritis, heart disease, lung disease, and other chronic disorders. There is no question that the debilitating effect of Fibromyalgia persists even if the jobs are stopped, stresses are relieved, life-styles are altered, or disability is awarded.
_________

* Fibromyalgia: Up Close & Personal by Mark Pellegrino, MD, was published in 2005 by Anadem Publishing. © Anadem Publishing, Inc. (www.anadem.com) and Mark Pellegrino, MD, 2005, all rights reserved. Readers wishing to order this very reader-friendly and comprehensive book by a physician who is himself a Fibromyalgia patient should directly contact Dr. Pellegrino’s practice at the Ohio Rehab Center (phone 330/498-9865 or fax 330/498-9869).

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8 thoughts on “The Disability Paradox, and How a Fibromyalgia Specialist Can Help Patients Preserve Gainful Employment”

  1. stillfighting says:

    Dr. Pellegrino doesn’t seem to take into account that most folks who are desperate enough to apply for disability already have tried just about everything in the medical and complementary arsenal that I can afford. I have had FMS and RA for 17 years, and have had prolonged remissions when I was able to work jobs that were intellectually challenging. Then the treatments stopped working, and I was not able to cope with the cognitive demands of the workplace, and suffered from unremitting fatigue. I can take the pain, but the fatigue and fog have forced me to go on disability. To be honest, I would rather be working, but who is going to hire someone who needs to take 2 naps a day, is so stiff in the morning that it takes 3-4 hours to get moving, feels so nauseous and dizzy that she grabs onto walls so as not to fall, and has a shortterm memory so bad she can’t follow simple verbal instructions?

    1. jacqualyn says:

      I really do not appreciate Dr Pellegrino’s opinion. Unless you have this illness, there is no way that anyone could possibly even have any idea what this torture is like. For the most part, there are days that I can not even get out of bed. How can an employer understand that. Or tell your employer, I’m sorry but I need to go home and take a nap, I’ll be back later. Calling in sick 2 to 3 days a week. I’m sure that would go over big. Maybe you could call in and say I didn’t get any sleep last night, can I come in later after I wake up. I’m sorry Mr. employer but my whole body hurts is it all right if I go lay down for awhile. Maybe they would like to here this one. Mr. employer I have to go take about 20 different type of medicine, I’ll be back in a minute. I personally cannot take the pain of this illness and it is very hard to explain to someone because they say I look fine. I have never gone into remission in the 10 years that I have had this weird illness. I have lost jobs and also friends over this. Even my own mother doesn’t get it. Thank God I have good doctors. I am on several different pain medications and also medication to help me sleep. I am sure that I would not get hired for a job that does drug testing even though they are prescription meds. This is very frustrating. These are just a few symptoms of this illness I’m sure you know that. I am on diability and have been for 5 years. I’m not a lazy person and wish so badly that I could work, but I do not see this happening. I deal with this on a day to day basis and that is all I can do. If there was a magic cure, I would be the first in line to get it. How about you?

    2. kerryk says:

      I appreciate the Doctor’s opinion on the disability paradox, though I believe he is mistaken. There is in fact no paradox. As one who could be described as exhibiting the paradox, I can describe my motives as such: I had given all the currently available remedies a fair and long trial and after a reasonable time concluded to myself that a career change was necessary if I were to have any hope. I only sought disability benefits to facilitate that change. Ultimately, I failed at both the career change and at qualifying for disability. I also lost the career I was in.

      I suspect the doctor unfairly colors his opinion of adapting in the work place with the flexibility he has in his position which is extremely rare for the rest of us.

    3. 2shasta says:

      I have been in touch with this website for a few years and was not ready to post a comment. But, this subject has injected new life in me. I would like to see these doctor’s get in touch with reality. In the REAL working environment, corporations have done nothing but basterdize the goventment FMLA program.
      Within their domains they apply and administrate the program as they see fit. Fibromyalgia, chronic fatigue and multiple chemicle sensitivity syndrome take such a big hit because the one and two day needed time off is totally not accepted as a chronic condition. There oversight ends up becoming pure harrassment. I should know I fought it all the way out the door,
      I made my thirty years but not without the constant pounding and blatant harrassment and blatant OVERRIDING OF MY FIBROMYALGIA SPECIALIST,who by the way probably quit practicing becasuse of fustration. I went after them legally and that is another whole story, but what I absolutely know is until these
      doctors, specialists stand up to the government, (social security), the corporations, the pharmaceuticals, and the other doctor’s that are fighting the facts that these chronic illnesses not only exists but plague our society with people that are not able to carry on and function on a daily basis as they did before. I am getting turned downwith SS simply because I do not look sick and I can not take any meds of any kind, I was exposed to chemicals on the job that has just waylayed my internal organs. It is hard to hire someone that needs a bathroom to go! I say to all who suffer, hang in there because
      the numbers will continue to rise as we continue to pollute our environments. The silent spring allows the yellow canaries to sing. 2shasta

    4. puffy1 says:

      Who is this guy any way what the heck is trying to do this article realy burns me.

      I am one who is trying to get disability but I maintained a job for quite a few years before I decided I couldn’t do it any more and filed for disability with my husband urgeing me too because he saw what it was doing to me.

      I have always mantiained that the treamnets my doctor was trying on me didn’t work all the time. I have tried a lot of different things before I applied for disability.

      I feel like he is trying to sabotage my efforts and I don’t find him to be on our side at all.

      PUffy

    5. puffy1 says:

      Hello I have been a visitor of this site for a few years now but I have never posted here before, But after reading this article I had too.

      I posted that I was realy hpset at this dortor I don’t think he knows what he is talking about and how did he ever get an article like that on here.

      I too have applid for disability it is going on three years now I just had my hearing in dec, and am waiting for the out come of that.

      But before I applied like so many others I tried nearly everything and contiuned to work full time jobs till I just couldn’t get out of bed any more. and with my husbands urgeing I stoped working and applied for disability.

      True there have been times when I felt like I have licked this thing and am ready to go back to work but then I well over do something one day like house work or yard work( mostly yard work and then I am doen for the count for about a week or 2.

      And then I go oh yeah this is why I am no longer working.

      So I do not appreciate his oppinion at all. And feel it could hurt my efforts in getting my disability.

      Puffy1

    6. dworm says:

      I totally disagree with this doctor’s opinion. The problem is more that the medical system and disbility system does not understand what it is like to live with fibromyalgia.

      I have had fibromyalgia for at least 6 years and had held a very responsible job until I recently resigned. I resigned because disability programs either through work or the government do not understand the disease. Work disability programs do not give people enough time to get to the point of management and force people back into the workplace way to soon and with the need for more and more medication until they can’t process information in their head and still don’t have real pain relief.

      I have tried every form of alternative therapy because traditonal doctors treat you as a medical experiment because there is not enough information to effectively treat this medical problem. Alternative therapists, traditional physicians as well as patients are all frustrated because for every step you take forward if you continue to work means several steps back because you can not maintain any progress for long periods of time.

    7. short-one says:

      In Illinois it is very hard to get disability, I can not find a doctor who will back me up. I went to a rhuem. he said he cant do anything for me because i wasnt responding My primary doctor thinks i am doing this to myself, I have been in chronic pain sense oct.2005, i lost my job in feb. 2006 because of fibromyalgia, I am at my witts end, I am 47 years old, I live in Machesney Park Ill. I was denied a medical card so i cant go to any doctor until i can find a way to pay. I dont know where to go or what to do. If you have any ideas please let me know
      Thank you short-one

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