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┬álow 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.

I just ordered this magnesium lotion recommended by one of the RN members of one of my Facebook groups – The Solutions to Peripheral Neuropathy Pain & Discomfort. I plan to use it on my feet and legs. https://smile.amazon.com/gp/product/B00K5QUAIG/ref=od_aui_detailpages00?ie=UTF8

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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I do, all too well. Very true that there are nuances of it. But, in my case it is counterproductive to dwell on its various shadings, or maybe just too depressing. Have you ever had a sleep study? A missed sleep issue can make a load of difference. There is some credence to vitamin D deficiency causing severe fatigue so a test isn’t a bad idea if you’ve never had one. Stretching helps, as does not going too long without moving. The ‘constitutionally weak’ thing can be frightening so fight it. I assume all blood work is normal as far as fundamentals like no anemia and normal thyroid function?

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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Excellent point about a log. It can be easy to let something that helped slip through the cracks because of a single bad day. Plus, the exercise of actively reviewing, recalling, noting, and evaluating is a tool to help stay out of the weeds in multiple areas, like lack of activity and mood.

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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I had my blood drawn and checked for vitamin D deficiency. It turned out that I almost had no vitamin D! I was put on prescription vitamin D for a few months and now take vitamin D every morning and evening. It has helped with fatigue, but has not totally removed it.

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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I totally understand, unfortunately! I joke around and say I should be studied because I go into what I call “hibernation”. I am SO fatigued that I can sleep 18-24 hours without eating, drinking or going to the bathroom. It is like I am in a mini coma. I am extremely difficult to wake during these times. I call them my lost days. It is very weird. I have them after I’ve really over extended myself, if I am extremely stressed for several days in a row, or if I am sick. They do not happen daily or even weekly. But when they do happen, I don’t know if it is fatigue or body shut down or what. But I understand your feeling. It is very depressing.

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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@nankee99 Sounds like a good time to get a full workup at Mayo Clinic. ­čśë
http://mayocl.in/1mtmR63
Hugs
Dawn

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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Walking my dogs and yoga are great. Tai chi in a group also nice.

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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I have been there I have good and bad days! Dont feel hopeless seen a suggestion for a journal great idea!! Maybe a change in diet? You have to find out what is good for you! I find music motivates me! Hope is something we all have!!! I drag myself to the beach the sounds of the waves crashing make me forget about how ill I really am,need to find your happy place. Sometimes I dont move my car for days staying in makes me depressed and drained! A change of scenery does wonders!!! Makes me mentally and physically charged !Spending a day with my friend and her grandchildren makes me happy, Happiness is their You have to find it!!

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@lisa_sj99

John,

Glad I found this forum. I have an autoimmune disorder, since 2004. Fatigue has always been an issue for me. Exercise (yoga and aqua exercise) and ginseng help alleviate some and I learn to deal with it. I started on a plant based diet ~ 3 months ago. I only have poultry and seafood one in a while as a special treats. This diet seems to help reduce the inflammation and help with my fatigue.

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The sloan web site is great, I had a rash on my left foot? I have been taking turmeric cucumin it said it can lead to dermatitis so I stopped for a couple days than took one and my foot started to tingle? I was taking it for asites and it worked pitted edema, maybe its the brand but have hay fever so have to watch plant based any thing even pain meds have to take synthetic version’s, basically stopped taking all holistic medicine I was so fatigued was going to get treated by the PHD that runs the school but was so fatigued I missed 2 app. Last week had my fentanyl patch off for 5 days ? Was going for acupuncture and to the holistic pharmacy the problem is Dr Lee only does nights? I get up before the sun? I am greatful for the link to sloan much.appreciated thanks John Burns and for your concern!

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@mrsdeecee

I just tried magnesium oil it has a calming effect and I applied where your pain is mine is my knees and neck from car accidents and broken leg I have slept better than I have in years it helps with connective tissue .Also you can not absorb calcium with out magnesium Deena

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Got it on Amazon but use it sparingly I am magnesium deficent found some labs its Austra magnesium oil and Doc best 100% chealated magnesium pills works for constipation also, read carefully before you purchase please Good luck Deena

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@barb54

I suffer from Anemia and Interstitial Cystitis. I take 4 Ferex Forte 150mg per day for the Anemia; the highest # I’ve reached is 11. My body simply doesn’t absorb iron. My first cousin has Lupus. Between the Anemia and the Interstitial Cystitis, I am exhausted. Additionally, I’ve had 4 bouts of pneumonia requiring hospitalization within the last two years, so I know my immune system is shot. I’m on 2 antidepressants, 1 anti-anxiety, B-Vitamin with Methylfolate, Probiotic, Magnesium, and three for the Interstitial Cystitis: Elmiron, Uribel, and Oxybutin. However, I am one of the lucky ones: Elmiron doesn’t work well for many suffering from IC, but it works wonderfully for me.
Additionally, I have a large cyst in my right kidney, 2 smaller ones in my left kidney, and for the second year in a row, 2 kidney stones. I’m now on Bactrim; hopefully these stones are small enough that they will pass on their own. Last year I was hospitalized for the extraction.
I am going to attempt to go back to swimming laps. That is a great stress reducer for me, and although it leaves me exhausted, I’m hoping that the additional exercise will help my body overcome these challenges. So glad to have found you!

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Have you had or ask Drs if you can get pnemonia vaccination? Your complicated like myself so ask first ! Did you get to go swimming?we all have to push physical activity not only for our health but sence of achievement! Good for the soul!

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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I have seen countless idiot Drs ! Good doctors are no doubt hard to find! I have been trying to get my pancreatic specialist on the phone for months no reply but got in New York Presbyterian portal the PA went over my last test and did not show my doctor?-had a stone in pancreas for years I want to know the damage done, Had about 7 doc tell me I was going to die of pancreatic cancer and wanted to know why ? Not one could explain Because I had a stone pushed in from an EUS I complained of pancreatic pain for years had sono grams Mri Mrcp with contrast,cat scans ect..Drs thought Pain was in my head except 1 Doc at Sloan KETTERING in NYC Dr Hyman Fong he relocated to Hope California do I have to fly there? Ha ha ha ! I will call again this week I live eastern Long Island takes 2 hrs to get to NYC by train would not drive no parking!!!

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