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 group.

@lioness

@rivergirl8243 Have you seen your cardiologist? Or Ear Dr My balance was off but no weakness on my side I suggest you have a battery of test by your car diologist with the one side weakness

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Could you share what kind of ear exercises you did? That sounds like a nice option to try. Thanks…

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@lindalm

Could you share what kind of ear exercises you did? That sounds like a nice option to try. Thanks…

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the ENT doctor gave me instructions for the epley maneuver. You can find it online. hope this helps

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@lindalm – Here's a video of the Epley Maneuver.

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@kyjeanne

Fatigue has been a major impact. I had to quit my job last October due to extreme fatigue. I have Sjogrens, Hashimotos, Fibromyalgia and many other illnesses. I’ve found that since I don’t have to force myself to get up for work, I can sleep later and rest some during the day as needed. That has been my life saver. Plus, I have a very supportive husband. I have Restless Leg Syndrome and a lot of aches and pains, which make it difficult to sleep. I use 5 pillows at night, which helps, and take Ropinorole (for RLS) and Trazodone (for sleep). When I do sleep, it seems I dream a lot. Is dreaming a problem with anyone else?

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I am curious, do you have good magnesium and potasium levels? I get restless legs, feet and calves ect if i dont take lots of those two suppliments and STRETCHING REALLY HELPS for me.
Lol, i also sleep with 5 pillows!

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I recently found that you can become low on magnesium if you are taking Nexium, or similar. Besides PT stretches, including those for piriformis, I find that massage for edema really helps as I am lying down for bed. Gentle massage from toes to torso for painful areas on legs; works for arms too. (directions on you tube) I put cbd salve on the most painful areas. ice/moist heat also helps, elevation and a daily walk. I suspect that some of it may be spine or other dislocated joints that the PT stretches really help. Anecdotally, I've heard that pickle juice or tonic water help. I have a posturpedic mattress with a topper – 3 lb density. One pillow, between knees, and sleeping with knees bent seems to be a better position.

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@oobie97

I am curious, do you have good magnesium and potasium levels? I get restless legs, feet and calves ect if i dont take lots of those two suppliments and STRETCHING REALLY HELPS for me.
Lol, i also sleep with 5 pillows!

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Hi @oobie97, Welcome to Mayo Clinic Connect. Thanks for sharing what helps you with restless leg syndrome. There are a couple of other discussions you might be interested in following to learn what others have shared.

– Periodic Limb Movement Disorder: https://connect.mayoclinic.org/discussion/periodic-limb-movement-disorder/
– Peripheral neuropathy, RLS and PLMD: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-rls-and-plmd/

Do you also have fatigue along with restless leg syndrome?

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I have been struggling for a while I'll loose weight then start to ache, not sleep and stop exercising. I function mostly, I have just been diagnosed with Sjogren's, I had previously been diagnosed with IBS with constipation, Fibromyalgia, Hidradenitis Suppurativa and osteoarthritis. The boughs of fatigue are the worse as they then make my other issues go through the roof. I have nights where sleep is rare and then I will sleep then about once every 4 to 6 weeks extreme fatigue where all I do is sleep, left work yesterday and have mostly slept since then. it has no pattern and is extremely frustrating.

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@sesass63

I have been struggling for a while I'll loose weight then start to ache, not sleep and stop exercising. I function mostly, I have just been diagnosed with Sjogren's, I had previously been diagnosed with IBS with constipation, Fibromyalgia, Hidradenitis Suppurativa and osteoarthritis. The boughs of fatigue are the worse as they then make my other issues go through the roof. I have nights where sleep is rare and then I will sleep then about once every 4 to 6 weeks extreme fatigue where all I do is sleep, left work yesterday and have mostly slept since then. it has no pattern and is extremely frustrating.

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@sesass63 – Welcome to Mayo Clinic Connect!
Do you experience more fatigue nowadays, related to the diagnosis of Sjogren's Syndrome?
Fatigue is very common with any autoimmune disease.
Fibromyalgia is not autoimmune-as far as I know- but often coexist with autoimmune diseases.
Fibromyalgia is a sleep disorder in itself. You can sleep for hours, but still wake up exhausted. Non-refreshed sleep.
I assume you have a Rheumatologist, correct? They also deal with fibromyalgia and should be able to take care of your sleep difficulties with special techniques as well as possible medication.
Would you mind sharing what treatments you have had?

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@astaingegerdm

@sesass63 – Welcome to Mayo Clinic Connect!
Do you experience more fatigue nowadays, related to the diagnosis of Sjogren's Syndrome?
Fatigue is very common with any autoimmune disease.
Fibromyalgia is not autoimmune-as far as I know- but often coexist with autoimmune diseases.
Fibromyalgia is a sleep disorder in itself. You can sleep for hours, but still wake up exhausted. Non-refreshed sleep.
I assume you have a Rheumatologist, correct? They also deal with fibromyalgia and should be able to take care of your sleep difficulties with special techniques as well as possible medication.
Would you mind sharing what treatments you have had?

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I just got Diagnosed finally March of this year. I have bi weekly Chiropractic appts, and monthly massage. I do have a rhuemotologist she put me on Naproxen and Hydroxychloroquine. I'm trying to excersize at least 3 times a week buts it's a struggle. I have weeks where I feel half way normal even though sleep is very hit and miss. Then out of the blue around the 6 to 8 week mark sometimes sooner I have 4 to 5 days where all I want to do is sleep. Fatigue and brain fog galore.

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I’m so sorry to hear how you struggle to get decent sleep. Is your joint pain better since you started on the medications? Hydroxychloroquine may take some time to get full effect, but it seems like a good choice.
I have fibromyalgia as well as 2 of my children. The main problem is getting solid sleep. With good sleep many of your symptoms will improve. Can you ask your doctor to recommend a doctor dealing with sleep problems?

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Recently I have been working to get a handle on my genetic difficulties. I have several, and some are worse than others. But there is a lot I have learned. 1) NO! genetic issue only touches a person in only one spot. I would not say that every issue touches everything, but see it this way. I have a "sparse hair" gene, so the hair on my head, arms, beard, legs, crotch, every place is getting thinner every day. If I had a big ego about my looks, this would bring psychological issues, bugs crawling up my nose and in my ears, sexual problems, everything. It probably also touches many other places. 2) I also have Purpura, attached to my Gelsolin, and covering my face, my feet, my legs, my toes, my abdomen. 3) I have recently picked an overview of my limited genome, and I have several thousand pages of lists of gene copies, impacts, etc. What I am trying to say is that we must keep an open mind on our own genome, recognizing that something like Retinitis Pigmentosa might arise from any or all of genetic issues known to be involved, and then even some more we do not yet recognize. 4) There is so much information out there now that one will never have complete knowledge of it all. 5) No matter what one learns, and from what source, every doctor on earth will tell you that you have it wrong somehow, and that doc or researcher is probably right. 5) Here is where you have to be your own best doctor. Learn and keep learning, listen to everything you can gen, and finally make up your own mind how to handle it. After all, you are the one who has a private set of genes, syndromes, genomes, etc.

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I guess I am not as smart as I once was. Or maybe I was not as smart then as I thought I was. I remember setting out to count to a million. I think I reached 68. I counted fingers, toes, ears, noses, past girlfriends, and who knows what else. Anyway, I just have been working with my GSN Overview from Sequencing.com. It counts genes, variants, etc. etc. there are 37 data points for each transcript on this overview, and there are about 40 transcripts, etc., on each page, and I have about 9,000 (Yes, 9,000) pages these little buggars. That eventually works out to something like 3 million characters, I think. I can just imaging God sitting there on the throne looking at each one of these, and saying to Peter, "Hey, Pete, I believe we should make this bowel GSN variant a little more sloppy for oldkarl. He needs some excitement. Take care of that for me, would you, please?" This overview is great. Now, if I can just figure out what to do with it…..

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