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.

A psychiatrist the other day told me this: he said that my saying RA is a Potentially crippling disease, I was being a bit dramatic and exaggerating. I feel he may know about treating mood/mental disorders but this particular psych knew nothing about RA. 😓

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Find another psychiatrist if you can. Mine would not say something like that to me.

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@ellens

Find another psychiatrist if you can. Mine would not say something like that to me.

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Agreed. I felt it was a very insensitive (and ignorant) thing to Say.

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@becsbuddy

Hello @mariajean03 I’m also taking seroquel 25mg at night but I don’t have nightmares . Are yo taking any other antidepressant? Did you check to see if the seraquel interacts with any of the other medications you’re on?

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I take a large dose of Seroquel @ bedtime. 375mg. I take it with Lamictal and 1 mg. Kolonopin. Every time I lower it I can't sleep. I stopped Kolonopin during the day. So feeling better that way. Also take Viibryd. I'll ask him if anything is interacting. Bad case of OCD and depression since I was 3! Thanks!

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I have OCD too. I've been taking a tricyclic for about 20 years. I have a benzo in case I get insomnia in the night. I started with Anafranil, the drug of choice for OCD, and then the greedy rotten pharma company (Teva) suddenly raised the price by about 12 times so I was switched to Elavil which is much cheaper. All of your drugs sound familiar but I'll have to look them up (except I did take Klonopin (sp?)) for a few days one time.

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@ellens

I have OCD too. I've been taking a tricyclic for about 20 years. I have a benzo in case I get insomnia in the night. I started with Anafranil, the drug of choice for OCD, and then the greedy rotten pharma company (Teva) suddenly raised the price by about 12 times so I was switched to Elavil which is much cheaper. All of your drugs sound familiar but I'll have to look them up (except I did take Klonopin (sp?)) for a few days one time.

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Have you tried Luvox or Luvox CR for your OCD? Psychiatrists think of it as the Gold standard for OCD.

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No–I'm happy with what I'm taking. I will look up Luvox. I thought that Anafranil was the Gold standard for OCD. Thanks for the suggestion.

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just checked on Luvox and many of its side-effects could sabotage my insomnia and racing thoughts and anxiety. I think my shrink chose what I need.

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fatigue is an issue, what to do?

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Hydration, along with electrolytes are important. Juicing, like Mean Green Juice, is good too. A daily walk, as well as PT to help alleviate muscle loss is also important. As you grow weaker, it is harder to do things. Amend diet to non-processed. And, finally, plan for what you want to get done and do it in short bursts of energy. I have also reduced the number of Must-dos at home, by simplifying. If you have kids, spouse, they can do some of it, but you'll have to accept "their" way of doing things. I've had 24 years' journey and still kicking.

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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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