Feeling Debilitated? Me, too!

Yesterday, I went to the Melbourne Garden and Flower Show – it was fabulous…but a hell of a lot of walking for a VERY long time. So, of course, my body is avenging itself.

Back in April, we ran a poll to decide the best word to describe the ‘more-than-fatigue’ we feel:

Overwhelmingly, the answer was DEBILITATION!

So, it was very timely that I read this post by The New Normal:

So Very Tired

I am so tired.

I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes.  But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.

I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.

Chronic Comic 155It’s not the same now, and I wish there were a better word for this kind of fatigue.  When I say I am tired now it means that I wake up exhausted.  I can sleep for eight hours straight and wake up and feel like I haven’t slept at all.  It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended.  It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.

I am tired to my core.  And I don’t know what to do to get through this.

I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold.  The cold passed, but here I am, swollen and tired and in pain.  About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do.  She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses – crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.

I called to make a follow-up appointment on day 7 because I still felt awful.  Pain and fatigue hadn’t really improved, despite the extra prednisone.  I went to see her yesterday, and she said, yes it looks like something is going on.  She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.

Hearing all that just made me more tired.  It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage.  It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen.  We were talking about progress.

But no. Here we are again. Going the opposite direction.  And I am so very tired, so very discouraged.  And I know that I need to say to my work, to my family, to everyone – I need a break. I need to rest.  But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.

In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs.  I know all of that, but today, and all the days lately, I feel defeated by this disease.

And I’m just tired.

If You Don’t Ask, You Don’t Get

Many people with FM continue to work full or part-time. But the chronic pain and debilitation (this is the word that was voted the most popular for the fatigue we feel) associated with FM often make working very difficult. If you are employed, it’s important to learn about managing the symptoms and coping with pain and debilitation.

Can People With Fibromyalgia Work?

By self-managing fibromyalgia pain and controlling daily stress, many people with FM can do almost anything they choose, by making simple modifications to your workplace that allow you to continue working.

What Type of Workplace Changes Can Help Someone With Fibromyalgia?

First, openly discuss your condition with your boss. Talk about the symptoms of pain, fatigue, and stiffness. Explain how you may have good days and bad days.

Explaining will give people at work a better idea of what you are feeling each day. Ask your boss if you can take rest periods on bad days. Or ask if you can take work home if you are feeling fatigued. Ask if you can come in on Saturday if you miss a day of work to make up the lost time and income. In addition, ask if you can put a cot in your office for a brief nap at lunchtime. Taking a midday nap helps many people with fibromyalgia and other chronic health conditions function on the job.

Are There Workplace Modification Guidelines for People With Fibromyalgia?[i]

To address concentration issues, employers should consider:

  • providing written job instructions when possible
  • prioritizing job assignments and providing more structure
  • allowing flexible work hours and allowing a self-paced workload
  • allowing periodic rest periods to reorient
  • providing memory aids, such as schedulers or organizers
  • minimizing distractions
  • reducing job stress

To address depression and anxiety, employers should consider:

  • reducing distractions in the work environment
  • providing to-do lists and written instructions
  • reminding the employee of important deadlines and meetings
  • allowing time off for counseling
  • providing clear expectations of responsibilities and consequences
  • providing sensitivity training to coworkers
  • allowing breaks to use stress management techniques
  • developing strategies to deal with work problems before they arise
  • allowing telephone calls during work hours to doctors and others for support
  • providing information on counseling and employee assistance programs

To address fatigue and weakness, employers should consider:

  • reducing or eliminating physical exertion and workplace stress
  • scheduling periodic rest breaks away from the workstation
  • allowing a flexible work schedule and flexible use of leave time
  • allowing the employee to work from home
  • implementing ergonomic workstation design

To address migraine headaches, employers should consider:

  • providing task lighting
  • eliminating fluorescent lighting
  • providing air purification devices
  • allowing flexible work hours and work from home
  • allowing periodic rest breaks

To address issues associated with sleep disorders, employers should consider:

  • allowing flexible work hours and frequent breaks
  • allowing the employee to work from home

My employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night when I seem to be less distracted) however none of these have worked on a consistent basis. So far, I cannot see how I can maintain employment with FM.

If you have tried different jobs and are unable to work, you might consider applying for disability. It can be a long and arduous journey, dealing with our Human Services departments and disability may be difficult to get because of rules about work capacity.

Can I Get Disability Because of Fibromyalgia?

In Australia, a person must have an impairment rating of 20 or more (under the impairment tables in the Social Security Act (Cth) 1991) to receive the Disability Pension.

The Americans with Disabilities Act has a general definition of disability that each person must meet. Therefore, some people with FM will have a disability under the ADA and others will not.

Because fibromyalgia is extremely hard to diagnose and there are no laboratory tests to prove the ailment to a third-party, it’s important that you do your homework before you apply for disability. And remember that you may be denied but, there are avenues to appeal decisions. Be aware of your rights! And check, and double-check, time limits!

How Do I Apply for Disability?

To apply for disability benefits, call your Social Security/Centrelink office. Much of the information may be provided over the phone, by mail, or the Internet. You will be asked specific questions about how you have trouble with daily activities. And you will need to be as specific as you can, describing your limitations and why you cannot work. You will be asked to give the names and addresses of your doctors. The Social Security office will contact each one for records.

What Other Proof Must I Provide for Disability?

Describing your fibromyalgia symptoms alone will not qualify you for Social Security disability. You have to be specific about signs and physical findings related to fibromyalgia and pain and how that impacts your ability to work. The Social Security staff will consider all your symptoms, including pain.

All of this information considered together must lead to a conclusion that you are disabled before you will be granted disability with benefits.

What if I’m not Approved for Disability?

It is common that fibromyalgia patients are not approved for disability, especially with the first application. If you are not approved, you’ll have the right to appeal. Some patients find it necessary to have the help of a lawyer during the appeal process. Although it may increase your costs, the chance your case will be approved is usually better if you have legal counsel.

I have applied (as some of you may know) and was rejected because it was decided that I do not have an impairment rating of 20 or more. As such, I have started the initial phase in the appeal process.

What Type of Documentation Is Needed to Get Disability?

It’s important to get detailed documentation – reports – from your doctors, including psychologists, at the onset of your illness. Have your doctors submit documentation of all prescribed medications, therapies, and lifestyle remedies necessary to resolve your fibromyalgia symptoms. You should also be evaluated by a fibromyalgia specialist, usually a rheumatologist. This doctor will give a detailed assessment of your impairment along with a list of the many tests and treatments used in your condition.

This seemed to be the hardest part so far. My rheumatologist held on to the incomplete report for 8 weeks before Mommy and I camped out in his office and reported him to the Hospital administration. Finally, it took less than 15 minutes for him to complete the required paperwork. Thanks Doc, for all the stress and worry for no reason.

I sent the requested reports (from him and me), copies of all correspondence between my medical team and a cover letter to Centrelink, on Friday. Although I have linked my letter here, I do not know if it will be successful, so if you choose to use parts of it, I cannot guarantee an outcome.

Wish me luck.

[i] These lists come from the U.S. Department of Labour’s Job Accommodation Network. I do not believe that there is an equivalent list in Australia (yet!)

Feeling Tired? Fatigued? Spent?