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 group.

@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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Also helps anxiety your heart health constipation stress , Pain and skin which is your largest organ and Sleep, you will sleep like a baby .the way you know you have to much in your system is you will get the runs ! Careful

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@colleenyoung

John, I’m so glad you started this discussion specific to fatigue. As you know my mom suffers from fatigue and we’re still trying to get to the bottom of the cause. I’m tagging other members on this discussion in the hopes that they’ll share their experiences with autoimmune disease and fatigue.

@robbinr @jharsh @dawn_giacabazi @flowerbeauty @jillnc @kyjeanne @blindeyepug: John asks, Do you experience fatigue? How has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?

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I am so sorry, I have missed a lot of posts on this thread due to issues of my own. You have some autoimmune diagnosis, correct? If so, what is it if I may ask, and is it being treated? There is no quick fix for fatigue, but there are some ways to optimize your life.

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In my original post I said that I used a low dose of modafinil to get past fatigue issues and praised the stuff. After doing a deep dive into some recently discovered heart issues, bradyarrhythmia, some PVCs, and worsening left ventricular diastolic function, I discovered that there is a chance, a very remote chance, that modafinil is contributing to at least 2 of this issues. The manufacturer recommends against taking it if you have left ventricular issues even though the supporting study was very small. They do not note anything about it causing or contributing to PVCs even though there are isolated case reports. So, if it sounded like I was recommending it, I have to retract that, at least until much more is known about 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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John I scored a 2 on gluten test and reads anything under 20 is negative but gluten is made with 2 proteins not sure if it’s animal or from nuts? I have read nothing good about it? Their is a big market in gluten free? Don’t know what to think any more have to get another app with holistic PhD and ask her what she thinks? Have a good day Deena

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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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Animals are a blessing. I have rescue cats and they do so much for me. I also do water aerobics. Lots of fun. They don’t care when I’m being useless. Only mandate is that I try not to drown myself! Laughter is a great therapy!

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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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Inquire as to which flu vaccine. I cannot take live vaccine. I have PsA.

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John- yes I have serve fatigue that will last 2-3 days before I feel like I get a break. My Dr- sent me to the cancer center in Scottsdale for two difference setting of IV Iron Infusions- which did seem to help for a week or two. I was Diagnosed with agent orange from the Viet Nam war and the chemicals affect the immune system daily and drops when I have another illness or pneumonia. jjames

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I was diagnosed with mesenteric panniculitis. I seem to be gaining weight and have had fatigue. I’m here to see what others have done that helped.

Thanks.

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