aarda-posterBy Kate Frantz, IPPF Awareness Program Manager

On March 23, 2015, I attended the American Autoimmune Related Diseases Association (AARDA) National Summit in Washington, DC. This daylong event brought together leading experts in research, environment, advocacy, and patient issues to highlight the latest in autoimmune disease research and treatments. With a packed agenda full of great speakers, this served as an excellent way to honor National Autoimmune Disease Awareness Month!

The theme of the summit focused on fatigue. In fact, AARDA recently released data on how fatigue affects autoimmune disease patients, which you can read more about here. Patients at the summit described their own battles with fatigue, stressing that fatigue is more than “just being tired.” It is debilitating and interferes with daily functioning. Walking up the steps, or even lifting an arm over your head, could feel monumental.

According to AARDA data1, 89% of the 7,000+ autoimmune disease patients surveyed said that fatigue is a “major issue.” About 6 in 10 patients said that fatigue is “probably the most debilitating symptom of having an autoimmune disease.” Additionally, it can be very challenging for patients when they are not taken seriously. AARDA reported that almost 9 in 10 patients have discussed fatigue with their doctors, and about 6 in 10 say they have not been prescribed or suggested treatments.

Fatigue is very real. It is important to seek medical care and receive the necessary help to deal with fatigue. So what should you do if your doctor doesn’t take your symptoms seriously? A few tips were suggested at the meeting:2

  • Map out your fatigue by showing your doctor exactly when it started in relation to other health and/or life events. This helps a doctor see what may have caused the fatigue, or what the fatigue may be causing.
  • Telling your doctor that you are tired or fatigued might not be enough. It is recommended to tell your doctor HOW your fatigue affects your functioning. I.e. not being able to walk upstairs, cook, work, or play with your kids.
  • Then, challenge your doctor by asking, “Why can’t I function?”

This got me thinking about pemphigus and pemphigoid (P/P) patients. Does this type of profound and debilitating fatigue affect your life? We know that the average P/P patient will go 10 months in search of a diagnosis. Are they experiencing extreme fatigue AND trying to seek a diagnosis? Leave a comment below, and let us know your thoughts about the AARDA study.


 

1Newswise. March 23, 2015. Profound, Debilitating Fatigue Found to Be a Major Issue for Autoimmune Disease Patients in New National Survey: AARDA Calls on “Fuzzy,” Largely Ignored Symptom to Become a New Focus of Research. Retrieved from http://www.newswise.com/articles/profound-debiliating-fatigue-found-to-be-a-major-issue-for-autoimmune-disease-patients-in-new-national-survey

2Dr. Abid Khan. March 23, 2015. AARDA’s State of Autoimmune Disease: A National Summit. Washington, DC.

7 thoughts on “Autoimmune Diseases and Fatigue: Insights from the AARDA Summit

  1. I have had active MMP for over 2 years and it took me a long time to put MMP and fatigue together. Going over and over to the doctor with fatigue and just getting told I must not getting enough sleep. Sleep is not the problem. Being a very active person all my life the fatigue and really stressed me out. I am gradually excepting the fact that MMP is causing the fatigue. I really hope that medial schools recognize that there are more and more autoimmune problem going on with people and they get a grip on it and help us out. I have been to allot of doctor and they just pass me on to another doctor. It would be so great for me to just hear 1 doctor say ” I don’t know how to help you right now but I will do my best to learn how” Thank you so much for letting me be heard.

  2. I was diagnosed with pimphigoid in 2012 and had noticed before seeing my doctors that I was beginning to not be as involved with sports and other functions that I had previously been involved in. Then after I started taking the medication to treat the pimphigoid the tiredness just got worse, I have discussed this with my doctor but he thinks it was due partially to the medication he had me on. I am off the prednisone now but have to take Rituximab treatments to keep the pimphigoid in remission, I struggle with walking, climbing stairs and even work in general, I try not to let the aches and pains keep me from doing my job, but have noticed that I can’t do some of the things that I use to do. I am 54 years old and was always active in sports and fishing tournaments, now I struggle with just getting out side pitching the ball with my son and daughter. I don’t fish know where as much as I use to due to being so tired and sore from trying to function like I use to, I know some of this is from my age but feel the pimphigoid has robbed me of a lot over the past few years. I would like to be keep informed about any new studies on this.

  3. I have problems with tiredness and motivation to get on with daily life. I am 56 and have a number of chronic conditions, all of which can cause tiredness. The exhaustion became a big issue for at least a year before I was diagnosed with pemphigus vulgaris. I used to force myself to get on with my life, thinking I was being lazy/that if I didn’t know better, I would have thought I was really ill! Of course I was building up to having a nasty illness, which, fortunately, was diagnosed quickly and responded well to the excellent treatment I received from Dr Groves at Guy’s. I was diagnosed in July, 2012, started treatment in Nov, 2012 and off all drugs by May, 2014. So I have been lucky!
    Now I have to deal with the aftermath. PV still looms over me a bit, as blood tests show I have raised and increasing autoantibodies. I live day by day, savouring the fact that, whatever my blood is doing, my mouth, throat and skin are behaving well on the whole! I enjoy eating normally (perhaps a bit too much! I could do with shedding the pred/middle aged spread weight gain!). I have osteoporosis and osteoarthritis. I suspect I would have had these problems as I grow older, but I feel that they may have come a bit earlier due to the prednisolone. It’s depressing having pain in my hands and needing a knee replacement at this stage of my life, especially as my hands are vital for my work – I am a clarinettist.
    I was able to work through my illness, missing very few days. Once again I was very lucky. Despite the mildness of my problem, my work was very much the necessary minimum – I did limit it a lot and it’s still reduced to this day. As far housework goes, i have found it really difficult to run my household in the way I like and expect. That gets me down.
    So, even when in a cautious remission, my life is affected by fatigue. I try to cope by reducing my expectations and by spending time in bed when needed. It’s a compromise which makes me depressed, but I am also grateful that I am alive and reasonably healthy with kind people around me!
    I welcome research into the problem of fatigue caused/increased by autoimmune disease. Understanding the causes must bring us closer to good management and treatment. I would be a much more productive person if I could manage this problem better.

  4. Diagnosed with MMP in December 2014. I had 5 episodes of sudden onset fatigue in January and February. They stuck me during varied activities and never lasted more than 1 hour or so or as little at 15-20 minutes. Very different from normal tiredness, definitely fatigue and never experienced this before.. Haven’t had any incidents of it for over a month now.

  5. Thank you all for sharing your experiences. We will be on the lookout for more information on the fatigue/auto immune disease connection, especially as it relates to P/P patients.

  6. I am 37 i was diagnose 2013 imcurrently not in steroids .We are now in 2015 and i am filling tierd worn out cant do much of anything and i dont know what to do at this point .Doctors are not helping at all, same answers difrent Doctors .Sometime i fill that they thing is mentally and that im just making up all this .what do i do?All i can do is cry and keep trying

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