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.

@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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My oncologist met my reponse to its us for islet cell cancer with
a No from me. Check out the medicines uses, etc., also
side affects and interactions.

irvkay312

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@upnorthnancy

Fatigue/Lack of energy plus extreme belly bloat plus memory/recall deficit have totally taken away my life as I knew it. I have been to Mayo multiple times. I have tried supplements up the wazoo. I have changed my diet to keto. I have tried acupuncture and healing touch and prayer. Cannot think of anything I have not researched and tried. No positive changes noted just gradually gets worse. Can you relate? Is modafinal the only thing that helps for you?

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About 7 years ago I was diagnosed with Celiac disease and 2 years ago I was told I have Sjogren’s. Apparently it is not unusual for the 2 to go together. I have had these 2 problems for many years but the doctors just didn’t figure it out. Long before Celiac was diagnosed, I had horrible bloating, cramps and tummy pain so bad that at times I couldn’t stand up straight. Soon after I went gluten free that problem went away. John, have you tried that for your belly bloat? I also have chronic back pain which is another unrelated problem but not an insignificant one, and with dry mouth and eyes from the Sjogren’s and then add in the back pain I would say I have “fatigue”. There are days when I don’t feel like doing anything but sitting. I am a dedicated quilter and when I get together with my quilting friends or when I am working on a project at home I feel so much better. My sewing room is my “therapy room”. I think having a good hobby you enjoy and get together with friends is the best treatment anyone can have. Just my 2 cents.

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@upnorthnancy

Fatigue/Lack of energy plus extreme belly bloat plus memory/recall deficit have totally taken away my life as I knew it. I have been to Mayo multiple times. I have tried supplements up the wazoo. I have changed my diet to keto. I have tried acupuncture and healing touch and prayer. Cannot think of anything I have not researched and tried. No positive changes noted just gradually gets worse. Can you relate? Is modafinal the only thing that helps for you?

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Thanks but no “belly bloat” issues and have been checked for celiac.

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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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@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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Hi, Yes, fatigue pretty much skews your entire life. Everything is muted. Is fibromyalgia your primary or only diagnosis? Have you been evaluated of any other autoimmune or non-autoimmune conditions linked to fatigue, e.g. anemia, thyroid disease? I ask because fibromyalgia symptoms are often a subset of a broader syndrome. Its unlikely but low vitamin D can cause gritty fatigue and that is mainstream thinking now. Please don’t start taking a lot of vit D with a blood level taken however.
Ever had a sleep study done? Poor sleep architecture and pain are joined at the hip.
Hope this helps.

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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 agree with getting a sleep study. Getting good rest helps fight the fatigue and the fibro pain. I have “fibro fog” – forgetful, distracted. I write lists a lot and jot down notes a lot. I always have pen and pad in my purse and also use “notes” on my phone. For me, too, the fatigue is the hardest to deal with. I can take pain and even struggle through it, but it is the debilitating fatigue that really gets me (though constant pain can cause fatigue). I had a sleep study and found I have restless leg syndrome (even my arms). I take trazadone to help sleep better now. I also have RA and Sojourne’s and spinal stenosis with the fibromyalgia. I would be surprised if you don’t have something else with yours. I also highly recommend a tempurpedic mattress. I don’t work for them or anything like that. I just have one that has helped very much with getting better sleep. When I travel now, I will not stay at any hotel without such a mattress. It truly helps. I find either a warm Jacuzzi bath or warm massage shower before bed also helps. I also found that making sure I walk daily (no running) or swim helps. I have also found extreme heat makes me worse and extreme cold makes me worse.
Though I would love to live in Hawaii, I live in Texas where it has been over 100 for several days. I find I have to walk at the mall so I remain inside where it is cool or I go swim. The only thing I can really do outside in the heat is swimming. I hope some of this has helped or will help you. After a while, you will learn what causes a flare for you and how to manage it all better.

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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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Thank you for your story! Among everything else, I too am affected by extreme temps. We recently moved from the humid midwest to the dryness of the Rockies. The humidity was difficult for me no matter what the temp was. I am currently lining up a new dr for where we have moved to, so maybe more help will come my way. Best of wishes to you!

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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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Thank you! So far fibromyalgia is my only diagnosis………heart, thyroid, anemia, respitory all checked out fine. I am currently in search of a new doctor in the area we have recently moved to, so maybe more issues can be found/treated. I will ask if a sleep study might assist me/dr in discovering what else is at root. Once again, thanks!

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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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@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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Hi and welcome.
Sorry to hear that. Been there.
Have you seen a rheumatologist or other specialist related to this?
What have you been diagnosed with, if anything?
What have you been tested for?
What medications are you on?

Sorry to sound intrusive but got to get some kind of baseline.

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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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@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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HI John, thanks. I am still unsure of my diagnosis(s), but Fibromyalgia is one. The other most likely seronegative arthritis. Anyone have that also? i started having crippling fatigue and weakness, only on occasion & for 2-3 days at time, accompanied with terrible chills no fever, about 2 years ago. Also, some numbness and tingling in arms, feet hand and a few weird rashes. I used to take off a few days of work every other month and just sleep and rest. It felt unlike anything else, and i became worried that I had some cancer or something. I have always been good about getting yearly physicals and seeing my doctor, but he never mentioned anything Rheum oriented and seemed annoyed with me- like I am a hypochondriac! Gradually the fatigue and weakness became worse, and in the last several months i have spent most of my days on the couch or in bed. Also I have developed terrible muscle pain and weakness. Simple tasks, like getting a cup of coffee, leave me feeling as though I had been lifting weights, and most times I can barely get up a flight of stairs.
In addition, I have been having terrible joint pains, that often wake me up at night, finger, wrist, elbows, shoulders & knees. Feet also.
In fact I only started seeing a Rheum last summer when my right knee was buckling and I was walking with a cane. What I thought would have been a torn meniscus, turned out to all part of this big mess! After trying a few meds that did not agree with me (plaquenil put me in the hospital with a dangerous rash), I have been on Cymbalta which has seemed to quell much of the muscle aches, tingling & numbness, and recently Sulfasalazine which also seems to be helping somewhat with joint pain. I still can’t do much though…. and if there’s a day I feel a LITTLE energetic and I try some basic activities, I end up paying for it needing to rest for the next 2 days.

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