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Fibromyalgia—Beginning to Take Your Life Back

Fibromyalgia is a disease, or a syndrome, depending on what sources you’re reading, that affects the muscles and the peripheral nerves, causing frequently debilitating pain, along with sleep disturbances, fatigue, cognitive “fog,” and other symptoms. At least four times as many women have fibromyalgia as men. Anywhere between 6 and 12 million Americans have fibromyalgia, depending on what you read—at any rate, it seems clear that fibromyalgia is the second most common rheumatoid condition after arthritis.

I spent some time researching fibromyalgia online, looking for a mechanical explanation of how it works. Is it an autoimmune thing, where the immune system attacks the muscles? Or the pain receptors? Or is there something that triggers an inflammatory response in the nerve endings and muscle fibers? Admittedly, my research has not been exhaustive, but I was expecting to find an explanation pretty easily on WebMD or another health site, and it doesn’t seem to be there. This leads me to believe that there is no well-understood mechanism by which fibromyalgia acts in the body.

The common understanding seems to be that fibromyalgia is a set of symptoms, signs, and indicators. If your doctor thinks you might have fibromyalgia, he/she will be looking for chronic, widespread pain in your muscles and joints—both sides of the body, above and below the waist, in addition to fatigue and possibly depression, anxiety, or other mood issues. There will likely be many tests. Fibromyalgia is poorly understood and not linked to anything in particular that doctors can test for, so they will run lots of tests to rule out all the things they can test for—multiple sclerosis, Lyme disease, hypothyroidism, vitamin deficiencies, and other easier-to-diagnose conditions.

Unfortunately, there is no universally helpful treatment for fibromyalgia. There are a few drugs on the market that are very helpful for some people, but not everyone with fibromyalgia responds well to them. Fibromyalgia pain and fatigue seem to often be improved by taking antidepressants. Some people benefit from fibromyalgia-specific pain medication, but not everyone does. Many people find some relief by modifying their diets, incorporating aerobic exercise into their lifestyles, and by having massages and acupuncture.

Many people with fibromyalgia continue to work, but many others find their symptoms keep them from working. Fibromyalgia is a common health issue on applications for disability benefits. Because fibromyalgia doesn’t show up on any diagnostic scan your doctor can do, proving that you have fibromyalgia and that it is so disabling for you that you cannot work becomes more challenging to prove in a disability benefits context. But it is still possible, and many people are eventually successful in their claims for disability benefits by proving they have fibromyalgia and that their symptoms keep them from working.

What Can Patients Do?

If you have fibromyalgia, there are steps you can take at work that may help prevent your symptoms from getting in the way of your job. This WebMD article suggests speaking with your boss and coworkers about your fibromyalgia and what your needs are at work, but if you’re not comfortable speaking with your boss, you can go to your human resources department to speak to someone about your needs.

Here is a list of accommodations you could ask for at work, to help you start thinking about your own needs and what might be helpful for you:

  • Could more of your tasks be written down in order of priority, so you can refer to your list when you’re having difficulty concentrating.
  • Could you take work home sometimes, or make up work time on Saturday if you have to take a day off to rest during the week?
  • Could you put a cot in your office and take short naps in your lunch break?
  • Schedulers and organizers can help you outsource your memory and feel less stressed.
  • Are there other ways to reduce stress at work?

Reducing Stress is Important

Stress often exacerbates fibromyalgia symptoms, so it’s important to think about what the sources of stress are in your life and what you can do to be less affected by them. At work, you may be able to manage-up by taking notes in meetings with your boss, reading back your takeaways at the end of the conversation, and asking your boss for deadlines and priorities. Then you can have a clear idea for yourself, and a written record, to help you keep track of your work. You likely don’t need permission from anyone at work to get an organizer, day planner, or scheduler, and be aggressive with your use of it. Try putting everything you have to do in your planner–all your appointments, everything you have to remember, no matter how small. Would your work be less stressful if you only checked your email once or twice each day, without leaving it open constantly where messages can come in and distract you?

In your personal life, are there relationships that are only draining or stressful for you, that never seem to emotionally fill you up? Are there ways for you to put limits on those relationships? Maybe you only speak to that person on the phone once per week, or you could arrange to have lunch with them every week or few weeks, so you can feel better about not being at their beck and call all the time.

Fibromyalgia is painful and exhausting, and while there are medications that help some people, many others find themselves stuck with over-the-counter pain relievers. Alternative and complementary therapies can be helpful for most people with fibromyalgia, like massage, acupuncture, a healthy diet, regular exercise, and reducing stress. Stress relief is easier said than done, of course, but we often have more control over our lives than we feel like we do.

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