Autoimmune Diseases and Fatigue

Posted by JohnWBurns @johnwburns, Jul 13, 2016

Fatigue is probably intertwined with the definition of "illness", almost any illness, but with some conditions fatigue becomes ingrained into the afflicted person's being and is a feature of their daily life. Such is the case with the highest profile disorders, cancer and cardiovascular disease, but it is just as true with at least some autoimmune diseases. I have a long history of dealing with autoimmunity and the complaint that kept bringing me back to doctors persisting in finding out what was going on was the dogged lack of energy, vitality. I got guess after guess after guess and when I got the "answer" it was basically that fatigue was part of the deal with the autoimmune disease that I have, Sjogren's, as well as I'm sure many others. So what I'm asking here is if you experience it, fatigue, how has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?

In my case its exercise, rest, and a fairly regulary low dose, around 50 mgs (usual recommended dose 200 mg) of modafinil, which I don't take for Sjogren's but rather for "Excessive Daytime Sleepiness" linked to Obstructive Sleep Apnea. I accidentally found out that it mitigated my general weariness. I've read some solid studies that found that American Ginseng can help cancer-related fatigue but apparently it doesn't work for Sjogren's, for me at least. Since fatigue impacts a person's total life experience in all domains, any information that might lead to dampening or controlling it would be very helpful to a lot of folks I'm sure.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Darlia | @darlia | Feb 13, 2018

In reply to @colleenyoung "John, I'm so glad you started this discussion specific to fatigue. As you know my mom..." + (show)

@mrsdeecee. I too struggle daily. I am 59 and have found that I can only clean a small portion or organize a little daily. I started excersizing regularly and it does help! Fatigue I have to fight too so I just do what I can and like my Neurologist once said... This is your new "norm".

heatherh | @heatherh | Feb 16, 2018

I’m new to all this but it’s nice to see I’m not the only one frustrated. From 2010-2012 I was seen for an autoimmune disease. Then I continued to be seen until about 2014 because my dr was 19 hrs away after I moved. I was sick for years before anyone figured it out. Her words were that all the symptoms and issues do not fit into a nice neat package so it can be hard for doctors to understand because it’s not as easy as a diagnosis of RA or Lupus which is why doctors have dismissed me before. I was on hydroxycloroquine for a while and it really seemed to help. Prednisone also helped from time to time.
Since I moved I got a primary care doctor and my symptoms started getting worse so I asked her to draw the tests my rheumatologist did. She only drew an ANA and said it was negative so she wasn’t worried about it but also gave NO explanation or anything for why I felt the way I did. I haven’t had it tested since because she refuses to and I’m worried if I go see a rheumatologist and it comes up negative they will brush me off. I have years worth of ANA tests that are high and high CRP of over 20.
Frankly I don’t care what they call it, if it has a cure or not! All I want is someone to pay attention and offer some sort of help.
Now I’ve developed high blood pressure, gained 20lbs and my kidney is enlarged. I don’t know if this is related or not but I can’t take this.
I have insomnia and sleep literally 5 hrs max a night (tried every medicine and none help) and I’m waking up 3-4x a night to pee. I finally caved and went to the urologist and he keeps this loop going whenever I ask a question like could my kidney problem have something to do with why I’m peeing so much? He just says well I’m not sure but it could be incomplete bladder emptying but I don’t know yet. He did the test in his office. Ultrasound my bladder, then I pee and ultrasound it again, no pee was left, he did a cath to check and still no pee so how is it bladder retention? Makes no sense
I was always told my AI could cause problems with other body systems and I’m not sure if that’s what’s happening. If I go into a rheumatologists office with a list of what’s going on I know they will think I’m just a hypochondriac but how else do I get this guy up to date with everything that’s going on without him requesting all my med records from a bunch of different doctors and reading through them? I’m exhausted all the time and can barely bring myself to get out of bed sometimes. I know that’s not normal but I don’t know what to do about it

John, Volunteer Mentor | @johnbishop | Feb 16, 2018

In reply to @heatherh "I’m new to all this but it’s nice to see I’m not the only one frustrated...." + (show)

@heatherh

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Hi @heatherh -- Welcome to Mayo Connect. You are right, it's not normal and while you don't know what to do about it, you definitely have the right attitude -- keep asking questions until you get an answer. I can relate to a few of you health problems. I used to get up 4 to 5 times a night to pee and I still don't get a lot of sleep, probably 6 to 7 hours a night of tossing and turning. My primary care doc prescribed tamsulosin (generic Flomax) to help. Now I normally get up once a night, sometimes twice. I also have polymyalgia rheumatic (PMR) for the second time and am almost off of prednisone since I'm tapering off and currently at 1 mg dosage. I've managed to control the weight this time around with prednisone by diet and more exercise. I also have high blood pressure and take spironolactone and hydrachlorathyazide to control it.

I would keep a list of all your symptoms, pain, etc...maybe a daily journal with some sort of a pain scale that you can describe to the rheumatologist. Then I would take that list with you to your appointment so you don't forget anything when talking with the rheumatologist.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference.
-- https://labtestsonline.org/understanding/conditions/autoimmune/

@heatherh do you also have inflammation as a symptom? I think a lot of autoimmune issues boil down to inflammation somewhere.

Keep asking questions! You are your best advocate.

John

heatherh | @heatherh | Feb 16, 2018

In reply to @heatherh "I’m new to all this but it’s nice to see I’m not the only one frustrated...." + (show)

@heatherh

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Some biopsy’s have shown signs of chronic inflammation and my inflammation markers are high but they fluctuate to normal too sometimes.

John, Volunteer Mentor | @johnbishop | Feb 16, 2018

In reply to @heatherh "I’m new to all this but it’s nice to see I’m not the only one frustrated...." + (show)

@heatherh

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I've been using 1 to 2 tsp of raw organic apple cider vinegar with a glass of water two to three times a day to help with the inflammation. It also helps with indigestion.

-- http://www.onegreenplanet.org/natural-health/how-to-use-apple-cider-vinegar-internally-to-relieve-inflammation/

John

louferrigno | @louferrigno | Feb 17, 2018

anybody out there? How do I know when I need to go to the hospital with flu

LA | @grokking | Feb 17, 2018

In reply to @louferrigno "anybody out there? How do I know when I need to go to the hospital with..." + (show)

As I understand it, if you have a high fever (over 101) more than a day or two, aches, pains, stiffness, cough you should be seen. You could call your doc and try to get Rx of Tamiflu if symptoms just arising. If you are older or already ill, you can't be too careful, though.