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.

I have Sjogren's and recently finished Cancer treatment. Fatigue is the most annoying of all the symptoms. I can deal with body aches. I am 72 and I still work. I too take Mondafil for work and special occasions when I need to stay awake. I also take tramadol for occasional pain (only at night) or I use Tylenol.

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@lucillem72

I have Sjogren's and recently finished Cancer treatment. Fatigue is the most annoying of all the symptoms. I can deal with body aches. I am 72 and I still work. I too take Mondafil for work and special occasions when I need to stay awake. I also take tramadol for occasional pain (only at night) or I use Tylenol.

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I was just thinking: Is it possible that autoimmune disease would fight the Corona Virus better than a person without an autoimmune disease? Please excuse me if this is an ignorant question. Peach

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@peach414144

I was just thinking: Is it possible that autoimmune disease would fight the Corona Virus better than a person without an autoimmune disease? Please excuse me if this is an ignorant question. Peach

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Hi Peach @peach414144 — I think the answer to your question is that if you have an autoimmune disease you are at a higher risk with COVID-19 than a person that has a healthy autoimmune system. Here's some information that you may find some explanations:

June 18, 2020 – Q&A: Overview of COVID-19 in Patients With Autoimmune Diseases: https://www.rheumatologyadvisor.com/home/general-rheumatology/qa-overview-of-covid19-in-patients-with-autoimmune-diseases/

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@johnbishop

Hi Peach @peach414144 — I think the answer to your question is that if you have an autoimmune disease you are at a higher risk with COVID-19 than a person that has a healthy autoimmune system. Here's some information that you may find some explanations:

June 18, 2020 – Q&A: Overview of COVID-19 in Patients With Autoimmune Diseases: https://www.rheumatologyadvisor.com/home/general-rheumatology/qa-overview-of-covid19-in-patients-with-autoimmune-diseases/

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@johnbishop Thanks for the article, John. It was very good!

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@johnbishop

Hi Peach @peach414144 — I think the answer to your question is that if you have an autoimmune disease you are at a higher risk with COVID-19 than a person that has a healthy autoimmune system. Here's some information that you may find some explanations:

June 18, 2020 – Q&A: Overview of COVID-19 in Patients With Autoimmune Diseases: https://www.rheumatologyadvisor.com/home/general-rheumatology/qa-overview-of-covid19-in-patients-with-autoimmune-diseases/

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Thank you John Bishop for the information, Here is a good one. Went to the emergency room 8/1/20 for chest pain and was never tested for COVID. Am I wrong or what is the problem within my living area?

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@peach414144

Thank you John Bishop for the information, Here is a good one. Went to the emergency room 8/1/20 for chest pain and was never tested for COVID. Am I wrong or what is the problem within my living area?

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Hi Peach @peach414144, sorry to hear you had to go to the emergency room for chest pain. Hope it was nothing serious. I think there may not be a simple answer to your question. I think emergency rooms are taking COVID-19 precautions for staff and patients but I don't think they want to test you before they treat an emergency situation, especially chest pain and other serious symptoms. AARP had an article in April that mentions ERs — Hospital ERs Making Major Changes to Address Patients' COVID-19 Fears: https://www.aarp.org/health/conditions-treatments/info-2020/er-precautions-coronavirus.html

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@johnbishop

Hi Peach @peach414144, sorry to hear you had to go to the emergency room for chest pain. Hope it was nothing serious. I think there may not be a simple answer to your question. I think emergency rooms are taking COVID-19 precautions for staff and patients but I don't think they want to test you before they treat an emergency situation, especially chest pain and other serious symptoms. AARP had an article in April that mentions ERs — Hospital ERs Making Major Changes to Address Patients' COVID-19 Fears: https://www.aarp.org/health/conditions-treatments/info-2020/er-precautions-coronavirus.html

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Hi John. Even after the doctors took care of the ER diagnosis and treatment there was enough time as the ER was slow They still did not do the Corona testing. I am fine so far but ??? Thank you for caring. Peach

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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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Seraquel makes me dream all nite. They never make sense. Sometimes nightmares. Does anyone know of an alternative for sleep and depression?

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@mariajean03

Seraquel makes me dream all nite. They never make sense. Sometimes nightmares. Does anyone know of an alternative for sleep and depression?

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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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@mariajean03

Seraquel makes me dream all nite. They never make sense. Sometimes nightmares. Does anyone know of an alternative for sleep and depression?

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Hello @mariajean03,

You might consider talking to your doctor about trying Trazodone (just a small dose). I took it for years without the side effects that you mentioned. The only suggestion would be to take it earlier in the evening rather than right at bedtime. If I took it too late at night, I felt very foggy until about noon.

One way to be most successful with these types of meds is to start with a very low dose.

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This is one of the absolutely most frustrating things for me to deal with. Mayo Clinic doesn't even have a great plan for dealing with Autoimmune Fatigue OR Chronic Fatigue, although I agree it might be linked to centralization sensitivity, I think autoimmune fatigue and Chronic Fatigue is much more.
There are NO good treatments but I do take magnesium, CQ10, CBD1:1, ect. but these may or may not help but aren't really a "treatment"
We need MUCH MORE research in this area and it doesn't make money so…. Ugh. Our system is so awful, especially for those of us with rare and autoimmune diseases.

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@mariajean03

Seraquel makes me dream all nite. They never make sense. Sometimes nightmares. Does anyone know of an alternative for sleep and depression?

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Mirtazapine (Remeron). It is a tetracyclic antidepressant that gives good sleep. It can increase appetite, so be careful there.

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@rarelybees2889

This is one of the absolutely most frustrating things for me to deal with. Mayo Clinic doesn't even have a great plan for dealing with Autoimmune Fatigue OR Chronic Fatigue, although I agree it might be linked to centralization sensitivity, I think autoimmune fatigue and Chronic Fatigue is much more.
There are NO good treatments but I do take magnesium, CQ10, CBD1:1, ect. but these may or may not help but aren't really a "treatment"
We need MUCH MORE research in this area and it doesn't make money so…. Ugh. Our system is so awful, especially for those of us with rare and autoimmune diseases.

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I absolutely agree with you. I take supplements too on the slim hope that they might help. You're right about the way our medical system is based on money. Our health should not depend on companies' bottom lines.

Liked by lioness

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@mariajean03

Seraquel makes me dream all nite. They never make sense. Sometimes nightmares. Does anyone know of an alternative for sleep and depression?

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I think for brain issues, it would be wise to consult with a psychiatrist. I have a psychiatrist and I wouldn't want some other kind of provider prescribing head meds.

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A psychiatrist can't help with this. This is strictly a MEDICAL condition. A cognitive therapist might help deal with the frustrations dealing with it, but would be probably the extent of the help. This is not "in your head" but a direct very poorly understood medical condition….Thanks

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