New: Debilitating fatigue a major issue for autoimmune patients

[natasa778]

Profound, Debilitating Fatigue Found to Be a Major Issue for Autoimmune Disease Patients in New National Survey

Newswise — WASHINGTON, D.C., March 23, 2015 -- Fatigue described as “profound,” “debilitating,” and “preventing them from doing the simplest everyday tasks,” is a major issue for autoimmune disease (AD) patients, impacting nearly every aspect of their lives. ...

Those are among the major findings of a new online survey of autoimmune disease patients conducted by the American Autoimmune Disease Related Diseases Association (AARDA), the nation’s only not-for-profit autoimmune disease patient advocacy organization, to examine the connection between autoimmune disease and fatigue. AARDA released the findings of the survey of 7,838 AD patients at a national summit held to commemorate National Autoimmune Disease Awareness Month at the National Press Club in Washington, D.C. ...

...
“In this busy, busy world, it’s normal to be tired, but the kind of fatigue autoimmune disease patients suffer from is anything but normal,” said Virginia T. Ladd, President and Executive Director of AARDA.

“The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a ‘fuzzy’ symptom, it’s real. Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It’s time we bring more research funding to this issue to advance understanding and effective treatments for fatigue.”


full article
http://www.newswise.com/articles/pr...mmune-disease-patients-in-new-national-survey

 

[natasa778]

also this

A total of 7,874 responses were received. The less than .5 percent reporting having only Chronic Fatigue Syndrome and/or Fibromyalgia, neither of which are considered autoimmune diseases, were removed for a final total sample audience of 7,838.

 

[Simon]

Some more highlights from this fascinating survey on fatigue (nearly 8,000 respondents):

• 90% say it's a major issue for them, 59% say it's the most debilitating symptom
• 68% say fatigue is profound and prevent them doing the simplest things
• 75% say it's affected their ability to work and 37% say they are in financial distress because of fatigue
• Three quarters say it's affected romantic and family relationships
• two-thirds say the fatigue is 'anything but normal'

 

[alex3619]

What I want to know is how many with AD have PEM.

 

[Keela Too]

Indeed - it is the aftereffects of doing a thing that lead me to be so cautious.

If it were just "in the moment fatigue", I would push on through and so be able to do much much more.

It is not the feeling of "fatigue" that ever makes me stop - I stop because I've learned that if I push on through even mild sensations of fatigue, that I will do lasting damage to my health.

The post exertional effects are the problem, not the just the fatigue itself.

 

[aimossy]

I know a percentage of Chron's patients get fatigue that sounds very much like PEM. I saw a Chron's organistion trying to get research into it but wouldn't be able to find the site about it again. They wrote about about payback from activity and like having a low battery to begin with on the site. I personally know a fair few people with RA and two of these people have fatigue similar to PEM.
It would be interesting what Jonathan Edwards makes of this because his patients in the past may have complained of things that sounded like PEM.