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.

@basslakebabe19

John, I can relate to your situation. I was diagnosed with atypical connective tissue disorder according to the medical records I submitted to the Dow Corning Settlement for silicone implants. The procedure for the implants after bilateral mastectomies was supposed to be a surgery to prevent breast cancer but proceeded to ruin my life and health. I couldn’t drive 10 minutes without pulling over to the side of the road and taking a nap. Fatigue became so severe that I turned off the lights in the faculty room in the school where I taught and took a nap during my prep time. The superintendent walked in and turned on the lights; that’s when I realized I had to have explanation for very fungal, dissolving implants. I developed Sjogrens also. The worst though was that my tendons dissolved in my shoulders (had four rotator cuff surgeries – none of which succeeded) The arch in my right foot also dissolved and was rebuilt. After explantation and 10 years of healing, I rescued my shoulders with reverse shoulder replacement surgeries. Finally I had cleaned out my system enough to have success with the shoulders. I retired from teaching at 57 to devote my life to healing. I still take a 20-30 minute daily nap and don’t plan to do too much in one day. I will have bursts of energy for a day followed by a restive next day. I empathize with you completely.

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OMG! I received silicone breast implants at Mayo in 1981. In 2001 I was diagnosed with RA. I got to wondering about the implants but couldn't afford to get them removed until 2005. The Dr (in Bozeman, MT) said that they had both ruptured and were very "gross" (his word) to clean out. I am glad to be rid of them but still have to live with the RA. I have no proof that the implants were the culprits.

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@ellens

OMG! I received silicone breast implants at Mayo in 1981. In 2001 I was diagnosed with RA. I got to wondering about the implants but couldn't afford to get them removed until 2005. The Dr (in Bozeman, MT) said that they had both ruptured and were very "gross" (his word) to clean out. I am glad to be rid of them but still have to live with the RA. I have no proof that the implants were the culprits.

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Ellen, the hardest part was finding doctor who understood the damage potentially caused by the implants. That included multiple Blood tests, MRI’s etc. I was fortunate to find a pioneer physician In Houston who really understood the disease. I traveled there from Wisconsin. I was in the Dow Corning Settlement and Filed everything myself…no lawyer. It took 10 years for a settlement. Unfortunately, I developed a few more symptoms after the settlement ended. I am doing the best I can and took care of many of the other issues.

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Very interesting info. I was in no place to look for a Dr familiar with the damage potential as you so well put it. I was living in the middle of Montana and was downright lucky to find a plastic surgeon in town who could remove the implant mess. I don't know the brand that Mayo was using in 1981. I was just glad to have the damn things gone. After having them placed in and then removed 24 years later there's no sign that I ever had them. Skillful surgeons!

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I've been on the journey of MCTD for 24 years. It has features of fibromyalgia. Non-processed diet, hydration, electrolytes and a daily walk/PT stretches make a difference. AIP diet, Terry Wahl Protocol are worth trying. Not going to be 20 again, but I do fine at 68, managing my day so I work on strength and flexibility for awhile. The more strength you have, the easier and less fatiguing tasks are. Still, I plan out tasks into smaller time and effort portions. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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I have an "Undifferentiated Connective Tissue Disorder" (that means I have 3 of the 4 "markers" for Lupus). As many of you have noted, chronic fatigue is a game changer. I exercise religiously; considered to be an active 73-year old I'm quite certain many of you have been told that fatigue goes with the territory if you have an autoimmune disease/disorder. How I wish I could get a stimulant to give me a boost; however, most doctors won't prescribe one and suspect complaints of fatigue are due to depression. I guess I'm getting resigned and grateful that I don't have something worse!

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Sublingual B-12, daily movement and maintaining hydration help a lot. If I have to think and am too foggy, I take 1/2 of a caffeine pill with breakfast. More than that give me shakes, but I am alert!

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@carolhastings

I have an "Undifferentiated Connective Tissue Disorder" (that means I have 3 of the 4 "markers" for Lupus). As many of you have noted, chronic fatigue is a game changer. I exercise religiously; considered to be an active 73-year old I'm quite certain many of you have been told that fatigue goes with the territory if you have an autoimmune disease/disorder. How I wish I could get a stimulant to give me a boost; however, most doctors won't prescribe one and suspect complaints of fatigue are due to depression. I guess I'm getting resigned and grateful that I don't have something worse!

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Read your post, and yes fatigue is a common problem as we age. Have you considered vitamin B12 shots, or pill form B12?
It may help. Do you get enough rest, and take a afternoon nap?
Too many doctors dismiss complaints of fatigue as just an elderly patient talking.
Young doctors do not always see the entire picture, and older doctors are cranky.
Funcountess

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That sums it up; back to the drawing board (i.e., exercise and sleep as needed).

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Thanks – I guess I'll have to up my caffeine….no script required!

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@funcountess

Read your post, and yes fatigue is a common problem as we age. Have you considered vitamin B12 shots, or pill form B12?
It may help. Do you get enough rest, and take a afternoon nap?
Too many doctors dismiss complaints of fatigue as just an elderly patient talking.
Young doctors do not always see the entire picture, and older doctors are cranky.
Funcountess

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Pill form of vitamin B12 should be sublingual. Older people don't absorb it through the stomach very well.

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@carolhastings

I have an "Undifferentiated Connective Tissue Disorder" (that means I have 3 of the 4 "markers" for Lupus). As many of you have noted, chronic fatigue is a game changer. I exercise religiously; considered to be an active 73-year old I'm quite certain many of you have been told that fatigue goes with the territory if you have an autoimmune disease/disorder. How I wish I could get a stimulant to give me a boost; however, most doctors won't prescribe one and suspect complaints of fatigue are due to depression. I guess I'm getting resigned and grateful that I don't have something worse!

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@carolhastings– I know what you mean by wanting some stimulating medication. After years of autoimmune disease and finally treated- for now at least- with immunosuppressive medication, I have a deep body fatigue and tired brain. Some Adderall would be nice. If I have to be sharp one day, I take a caffeine tablet that carries me through part of the day. You are correct , many of us are older and not prioritized in trying stimulants. After all, we are not working, so who cares if it’s hard to get through the day.

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Thanks for the reply. If I knew a way to get ahold of a safe stimulant, I'd get it. I was on a Ritalin generic while working and only took it "on occasion." Kept a stash for those days I genuinely needed it. It got me through until retirement; after that, my primary wouldn't give it to me. I rarely took it but it was a comfort to have on hand for those difficult days. Makes you feel like a drug addict!

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