1. < Autoimmune Diseases

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.

rivergirl8243 | @rivergirl8243 | Sep 12, 2020
In reply to @johnbishop "Hi @rivergirl8243, If you click the Reply button under the post you are replying to the..." + (show)
@johnbishop

Hi @rivergirl8243, If you click the Reply button under the post you are replying to the post. If you click the Post Reply button at the bottom of the page you are just creating a new post directed at any in the discussion. Also using the @ member name sends an email notification to the specific member and also addresses who your post is for.

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In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID 19, had multiple tests and etc. with my care team and Neurologist, only to be told to go home they couldn't find anything medically wrong me, this doesn't sound like Mayo. Now they want me to return, I suppose they needed more than 4 days and multiple tests with me. In the meantime, I've seen several neurologists and primary care in my state. No one seems to know what my problem is. For several months my gait and balance have been off, I look like I'm drunk when I walk. My left leg and side are weak, I've fallen several times just trying to turn around or back up. I'm extremely fatigued. Larry holds my hand when I walk. I have degenerative scoliosis but have been told (by Mayo) this isn't the reason for my issues. I'm old but this should not be part of aging. I take no medications, My question to the group: does it sound like Ataxia? Should I bite the bullet and return to Mayo?

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4 replies
lioness | @lioness | Sep 12, 2020
In reply to @rivergirl8243 "In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID..." + (show)
@rivergirl8243

In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID 19, had multiple tests and etc. with my care team and Neurologist, only to be told to go home they couldn't find anything medically wrong me, this doesn't sound like Mayo. Now they want me to return, I suppose they needed more than 4 days and multiple tests with me. In the meantime, I've seen several neurologists and primary care in my state. No one seems to know what my problem is. For several months my gait and balance have been off, I look like I'm drunk when I walk. My left leg and side are weak, I've fallen several times just trying to turn around or back up. I'm extremely fatigued. Larry holds my hand when I walk. I have degenerative scoliosis but have been told (by Mayo) this isn't the reason for my issues. I'm old but this should not be part of aging. I take no medications, My question to the group: does it sound like Ataxia? Should I bite the bullet and return to Mayo?

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@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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1 reply
joybringer1 | @joybringer1 | Sep 12, 2020

I feel so sorry for you. I have no idea what is wrong, but I share your disappointment with Mayo. My husband drove me there (a 7-hour drive) and we spent a week there, then home for a week, then back for one more round. I saw many doctors there and gave a lot of blood. I even gave extra blood and filled out a questionnaire for use in special research program. Once when I was giving blood the woman who was taking it said she had never seen so much blood requested. I thought I might help someone else down the line. Anyway, when I received their report I almost cried. The first diagnosis was "chronic pain."
Well, duh. The rest basically said "unknown." Weeks after I returned, I received a phone call requesting more blood. I almost laughed. I told the woman there was no way we would make the 7-hour journey again. Whether or not you return to Mayo, I wish you well. No, this should not be a part of aging.

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fighter | @fighter | Sep 12, 2020

One of my earlier rheumatologists offered me a stimulant, but stimulants only mask fatigue. I didn't want to do that to my body. Later she offered a sleep aid, which I chose Lunesta. It helps me ALOT! When I used to get up in the am, I'd feel exhausted. I think it's a good option.

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 13, 2020
In reply to @fighter "One of my earlier rheumatologists offered me a stimulant, but stimulants only mask fatigue. I didn't..." + (show)
@fighter

One of my earlier rheumatologists offered me a stimulant, but stimulants only mask fatigue. I didn't want to do that to my body. Later she offered a sleep aid, which I chose Lunesta. It helps me ALOT! When I used to get up in the am, I'd feel exhausted. I think it's a good option.

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@fighter. Oh Lunesta is the best but my insurance will no longer cover and I have found the generics not as good.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Sep 13, 2020
In reply to @rivergirl8243 "In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID..." + (show)
@rivergirl8243

In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID 19, had multiple tests and etc. with my care team and Neurologist, only to be told to go home they couldn't find anything medically wrong me, this doesn't sound like Mayo. Now they want me to return, I suppose they needed more than 4 days and multiple tests with me. In the meantime, I've seen several neurologists and primary care in my state. No one seems to know what my problem is. For several months my gait and balance have been off, I look like I'm drunk when I walk. My left leg and side are weak, I've fallen several times just trying to turn around or back up. I'm extremely fatigued. Larry holds my hand when I walk. I have degenerative scoliosis but have been told (by Mayo) this isn't the reason for my issues. I'm old but this should not be part of aging. I take no medications, My question to the group: does it sound like Ataxia? Should I bite the bullet and return to Mayo?

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@rivergirl8243 - I know the frustration you are going through - beyond extensive workup and testing- and nothing is found and you still suffer. With left sided weakness I doubt ataxia. It sounds more like a central nervous system problem - brain or spinal. I assume you have had a variety of MRIs and CTs. No sign of MS or other degenerative disease? Stroke? Viral illness? Lyme?
I was once in your situation - deciding if I should return to Mayo or not. What made me decide to return was I did not want to start with someone new. They had tested me for 4 years-all results were there. I lucked out this time- new scientific knowledge pointed to a specific autoimmune illness and I could be treated finally.
My advice is to go. Do you have access to your Mayo records online? I would review them myself from time to time along with the visit summaries from the doctors. This way you refresh your memory of everything that has happened.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 13, 2020
In reply to @rivergirl8243 "In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID..." + (show)
@rivergirl8243

In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID 19, had multiple tests and etc. with my care team and Neurologist, only to be told to go home they couldn't find anything medically wrong me, this doesn't sound like Mayo. Now they want me to return, I suppose they needed more than 4 days and multiple tests with me. In the meantime, I've seen several neurologists and primary care in my state. No one seems to know what my problem is. For several months my gait and balance have been off, I look like I'm drunk when I walk. My left leg and side are weak, I've fallen several times just trying to turn around or back up. I'm extremely fatigued. Larry holds my hand when I walk. I have degenerative scoliosis but have been told (by Mayo) this isn't the reason for my issues. I'm old but this should not be part of aging. I take no medications, My question to the group: does it sound like Ataxia? Should I bite the bullet and return to Mayo?

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@rivergirl8243 before you get set to return to Mayo, ask them to be specific about why you should return. Have they found some answers, could this be taken care of locally? Trips to Mayo are not cheap so you need to know if the benefits are worth it. Take your recent medical records with you. Yourself first.

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woogie | @woogie | Oct 20, 2020
In reply to @rivergirl8243 "In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID..." + (show)
@rivergirl8243

In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID 19, had multiple tests and etc. with my care team and Neurologist, only to be told to go home they couldn't find anything medically wrong me, this doesn't sound like Mayo. Now they want me to return, I suppose they needed more than 4 days and multiple tests with me. In the meantime, I've seen several neurologists and primary care in my state. No one seems to know what my problem is. For several months my gait and balance have been off, I look like I'm drunk when I walk. My left leg and side are weak, I've fallen several times just trying to turn around or back up. I'm extremely fatigued. Larry holds my hand when I walk. I have degenerative scoliosis but have been told (by Mayo) this isn't the reason for my issues. I'm old but this should not be part of aging. I take no medications, My question to the group: does it sound like Ataxia? Should I bite the bullet and return to Mayo?

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Your post reminds me of me in a way. When I walk, I walk like I'm drunk. I stagger. Sometimes it looks like I'm going to fall. I had a chiropractor tell me one of my sides is ten pounds heavier than the other. He had me stand on two scales, one foot on one, the other foot on the other and stand still and shut my eyes. It sounds crazy but that's the verdict. I know I have severe spinal stenosis and sometimes I have a huge pinch in my back and that makes me walk crazy also. I am not signing up for a rod, plate, screws and a fusion. My ears have been full of wax and my ears infected this past year which I think makes your gait off also. I am sending love to all of you who are in pain--whether it is pack pain, leg pain, neck pain, people pain--God be with you.

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1 reply
lioness | @lioness | Oct 20, 2020

@rivergirl That sounds like me staggering around till my ENT Dr sent me to a vestibular specialist Gave me exercises for my ears to do Took a month 2x a day but can walk straight now Did Mayo check your ears

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2 replies
rivergirl8243 | @rivergirl8243 | Oct 20, 2020
In reply to @lioness "@rivergirl That sounds like me staggering around till my ENT Dr sent me to a vestibular..." + (show)
@lioness

@rivergirl That sounds like me staggering around till my ENT Dr sent me to a vestibular specialist Gave me exercises for my ears to do Took a month 2x a day but can walk straight now Did Mayo check your ears

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thanks

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