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Autoimmune Diseases and Fatigue
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.
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Hi @astaingegerdm ive been diagnosed with sleep apnea (grade 1). I can’t use my CPAP then I had a face surgery (so have to wait). The biologic I am usin is Ilaris (canakinumab) every 28 days. I’ve stopped it for ankle surgery (already 2 weeks) and experienced the fatigue. (I don’t have fatigue while I am on it). Now the compression at my back head has disappeared. I have low fever but my mind is alert again:). I want to asked you if you had experienced a trial of no biologic and how have you feel being of it (special the mind and mental fatigue). Thanks
@johnwburns hi just read your post from 2016. How have you been dealing with the fatigue issue for the last years?
After pandemic studies have speed, specially studies for long covid brain fog. Use the information with your doctors. Early evidence suggests a cocktail of two existing medications could mitigate or eliminate brain fog among patients with long COVID-19, according to researchers at Yale University in New Haven, Conn. The research, published Nov. https://www.yalemedicine.org/news/long-covid-brain-fog-treatment
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1 Reaction@lorena1egas
I have never tried any biologics. I have expo with Imuran immunosuppressive and prednisone. Both caused the fatigue to disappear.
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2 Reactions@lorena1egas
That Yale study is promising- so many people with severe fatigue for different reasons could get help. Including “chemo brain”.
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1 ReactionNo, I certainly have not found a sure fire way to mitigate fatigue. Regular exercise is critical to having a chance to offset the results of prolonged fatigue. My favorite exercise to fight a good fight is warm water aerobics in a heated pool around 97 degrees.
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9 Reactions@tedjones- My personal experience of exercising while in the cloud of severe fatigue/ exhaustion is disappointing. I have always been physically active but I have been unable to get off the ground when the medical condition causing the fatigue is active. I’ll get short of breath and racing heart.
However, when I feel the cloud lifting I start with walking. Water aerobics is great for the body once one is recovering.
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6 ReactionsDoes somebody knows the medical way (not only biologics) to block cytokines from traspasong the blood brain barrier? That could be a game changer. Thanks
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2 ReactionsI am shortly turning 80. I was diagnosed with Crohns at 22 and was put on meds one being Prednisone . I have been constantly fatigue ever since. AfterCrohns Disease, came migraines, Osteoporosis, osteo arthritis, reflux, post nasal drip, glaucoma, etc. about 2 years pre Covid I had a cold which eventually turned into a flu very much like covid. Taken to the hospital and could not walk without oxygen tank,. and had two teams of physicians trying to put a name to it after many tests. It permenantely damaged my lungs. Went home and the virus went away but left me very tired, not to sleep,but rather very low energy level and have never returned to my old self. If I have errands to run by the time I get myself together to go out I feel like crawling back into bed to rest. When out I quickly tire and will have to just go home. I am on may medications for my various health issues and they believed this is what caused my lung issues in the first place but I cannot go off any of them. I am between a rock and a hard place. I am not having fun!
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5 ReactionsJust wondering while using biologics have you experiment that taking it together with other meds, both compete? Last yearI took bupropion for fatigue After the 3 week I stopped it I couldn’t function. Now I am taking cbd oil and I feel tired. I am on canakinumab, so maybe meds compete. I have used cbd before (without biologic) and was great. Has this happen to you?