Friday, April 26, 2013

Teri Rumph, PhD on Fatigue

This excellent article was posted to the Sjogren's Syndrome Foundation facebook page by a group member. I wish that I could find the original in my stash of old Moisture Seekers newsletters to verify.  Regardless, it's a great read. Enjoy:

By Teri Rumpf, PhD

Published in The Moisture Seekers by Sjogren's Syndrome Foundation
Volume 21, Issue 7
Summer 2003

How are you?" I asked a friend who has Sjogren's syndrome.
"Tired," she said, "how are you?"
"Tired," I replied, knowing we understood each other. We were talking about a special brand of fatigue. Later that day, a friend who did not have Sjogren's asked me the same question. "How are you?" she said. "Fine' I responded, thinking it was the simpler way to answer a basically rhetorical question.

Not everyone with Sjogren's syndrome suffers from fatigue, but many of us do, according to the two excellent articles by Dr. Fred Vivino in the March and April, 2003 issues of The Moisture Seekers. Quoting a study done by Dr. Evelyn Bromet, Dr. Vivino said that SSF members had listed fatigue as the third most troubling symptom of Sjogren's, after dry eyes and dry mouth.

Fatigue has been a problem more disabling than dry eyes or dry mouth for me. I long for normal energy and the ability to sustain an activity, any activity. I long for the kind of fatigue that gets better when you get a good night's sleep. I wish I did not have to pace myself, to plan rest stops and to just be able to get up and do, but, reluctantly and somewhat resentfully, I know that fatigue is a part of my life. Having decided that if you must live in a particular landscape, you should learn the subtleties of the territory, I've come up with the following categories. Your list may vary:

1. Basic fatigue. This is the inherent fatigue that I attribute to inflammatory, autoimmune-nature Sjogren's syndrome. It's with me all the time, even on my best days. It differs from normal fatigue in that you don't have to do anything to deserve it. It may vary from day to day but is always there. There appears to be a correlation between this kind of fatigue and sed rate (ESR). When one goes up, so does the other. All of the following are superimposed on this basic fatigue.

2. Rebound fatigue. If I push myself too far, ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e. I do something one day and feel it the next.

3. Sudden fatigue. This 'crumple and fold' phenomenon makes me resemble a piece of laundry. It comes on suddenly, and I have to stop whatever I'm doing and just sit down (as soon as I can). It can happen anywhere, at any time. It is the kind of fatigue that makes me shut off the computer in mid-sentence. It is visible to those who are observant and know what signs to look for, even if I make gargantuan efforts to disguise the fact that it is happening.

4. Weather-related fatigue. Not everyone has this particular talent, but I can tell that the barometric pressure is dropping while the sky remains blue and cloudless. I feel a sweeping wave, a malaise, that sometimes lifts just after the rain or snow has started. Likewise, I know that a weather front is moving away while torrents of water are falling from the sky. I feel a lightening in my body and begin to have more energy. This kind of fatigue is accompanied by an increase in muscle aches and joint pain.

5. Molten lead phenomenon. This fatigue is present when I open my eyes in the morning and know that it is going to be a particularly bad day. It feels as if someone has poured molten lead in my head and on all my limbs while I slept. There is an increase in muscle and joint pain, and doing anything is like walking with heavy weights. It is often associated with increased symptoms of fibromyalgia and sometimes helped by heat and massage.

6. Tired-wired is a feeling that comes from certain medications, such as prednisone, too much caffeine, or too much excitement. My body is tired but my mind wants to keep going and can't let my body rest.

7. Flare-related fatigue is an unpredictable state of increased fatigue that can last for days or weeks. It may be either an increase in disease activity or a low-grade infection. If the latter, it is non-specific and either resolves on its own, or eventually presents other signs and symptoms that can be diagnosed. Additional rest is essential to deal with this kind of fatigue, but rest alone will not necessarily improve it or make it go away.

8. Fatigue related to other physical causes, such as thyroid problems or anemia. This kind of fatigue makes you feel that you are climbing a steep hill when you are walking on level ground. It resolves once the underlying organic condition is diagnosed and treated.

9. Fatigue that impairs concentration precludes thought, makes me too tired to talk, think or read. Fatigue that robs me of memory and encloses me in a fog of cotton wool so thick I can't find my way out until the fog miraculously lifts.

10. Stress, distress, anxiety or depression all can create a leaden kind of emotional fatigue that can be as exhausting as one due to physical causes. Although some people do not associate their increased fatigue with emotional states, many are aware of the effects of increased anxiety and depression, even if they cannot control what they feel. Stress, anxiety and depression all disrupt sleep.

11. Fatigue that comes from not sleeping well. Some people with Sjogren's have trouble both getting to sleep and staying asleep. Some wake up in the morning feeling as if they had never slept at all. Many aspects of Sjogren's affect sleep: too dry, too much pain, too many trips to the bathroom, need for water, need to put in eye ointment, or the need to move restless legs.

It's difficult to explain the unnatural intensity of this fatigue to someone whose only experience has been with what is normal. We're not talking about the same stuff. "Is it depression?" a health care professional who didn't know much about Sjogren's asked me recently. I tensed. Was he saying it was all in my head? Fatigue associated with depression can be as overwhelming as the fatigue associated with Sjogren's, but the two are not identical. I thought he was trying to understand. I was describing something outside his frame of reference.

When you describe Sjogren's fatigue to someone who has never experienced it, you are asking him or her to think outside the box. You want them to understand an experience that is common to those who have Sjogren's and many other autoimmune diseases but uncommon otherwise. It's always difficult to encounter expressions of disbelief, but I tried to see it as an opportunity to educate. "No," I said, "think of it as a never-ending flu that varies in intensity but never goes away." He grimaced.


Kelly said...

Thank-you for this. I recently had a bad episode of number 9 on the list, precipitated by number 10. Had to walk out of a group activity because my brain simply shut down. It's such a scary feeling, especially when you are used to powering through anything that comes your way and that's what people expect of you.

Melody said...

Thank you for this post. The kind of fatigue that I feel daily is just so hard to explain. My family doesn't even understand so I know it's difficult for the people I work with to get it. Especially when it can change from day to day so drastically.

annie said...

To actually be able to sift through and analyze the different fatigue fugues is amazing. For me, it's always one big blur, but each of these makes sense. Thank you, this is something to bring to each and every doctor to help them understand our sense of utter exhaustion (hopefully!).

LM said...

WOW...unbelievably spot on.
Thank You for this post.

Brigid Rauch said...

How do i get across to my rheumatologist that the fatigue is as debilitating as swollen joints would be?

Debbie said...

This article explains what I have been trying to put into words for 7 years. Thanks for sharing.

Anonymous said...

How do we fix this fatigue? I agree, this list is spot on.