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.

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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Hi @lisa_sj99. We’re glad you’re here! I’m glad you were able to find relief (and more energy!) by changing up your diet. Would you mind sharing what autoimmune condition you have with the group?

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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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Great been trying to get to yoga Im so fatigued cant get their on time? I AM down to 99 lbs Im a 53 yr old woman with PBC 7 years I studied eastern and western medicine and am going for treatment with holistic pharmacy and aucupuncture got to call see if any tai chi or yoga is going on better than the gym I have to keep free range meats and gluten free carbs 1 serving a day to try to combat fatigue God Bless happy for you ! Deena

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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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Deena,

Glad you bought up gluten free and Easter medicines. I also use acupuncture and it does help relieve the pain and inflammation. I also started with gluten free as part of my plant based diet. Stay strong and do what you can to stay active. All the best, Lisa

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@alysebrunella

Hi @lisa_sj99. We’re glad you’re here! I’m glad you were able to find relief (and more energy!) by changing up your diet. Would you mind sharing what autoimmune condition you have with the group?

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Alyse, I have moderate rheumatoid arthritis (RA) and have been on those toxic medications (Methotraxate, Celeblex and Orencia, but switched to Simponi ~ 9 months ago due to the inconvenience of traveling overseas with the med that requires refrigeration) for the past twelve years. I am on a crusade to find ways to reduce those toxic medications. Since I started the plant based diet and gluten free (inspire by the book “Eat to Live” by Joel Furhman), I was able to reduce my weekly methotrexate by 1/3. I have not taken any Celeblex in the past two months (I used to take It at least twice a week). When I mentioned this to my RA Doctor as I started this diet, she was skeptical but encourage me to try and see how it go. My Joints pain and fatigue have improved quite a bit. I have not felt this way in a long time, so it is very encouraging. Everyone chronically illness is different, so I am not advocating other to follow the same diet. All I am trying here to share my experience and encourage others to try different ways to find solutions that help alleviate the symptoms.

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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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@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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Hi,

Certainly seems like you have a lot to deal with, more than most people can imagine. The fact that you are coping with it at all is praiseworthy.
Just a note of caution on the gluten free thing, and Eastern medicine. If you are tested for Celiac and pass, no need to avoid gluten. “Gluten sensitivity” is unproven health wise but is proven to make extra cash for those selling the products. So, ask your doc for a test if you a curious about it. Unless you have severe ongoing GI problems, you’ll probably pass. This is kind of important since by following one of these diets you may be limiting nutrients that will benefit your general health.
As far as Eastern medicine, there is clearly something to it but the tricks are: what really works? how much should you take? how will it interact with prescribed medications? can it do harm? These herbs are not regulated by the FDA so what it says on the bottle may in fact not be true. There is a subset of such medicines that may benefit, such as the various ginsengs, curcumin, rhodiola etc but be careful when putting together your own concoction. Here’s a good website that Memorial Sloan Kettering Cancer Center put together about Integrative Medicine.
https://www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine/herbs
Look under “Search about Herbs” to investigate a particular one in detail.

Remember that traditional medicine isn’t necessarily Eastern. It has a rich tradition in, for example, Appalachia, and of course among Native Americans.

That said, don’t give up on mainstream medicine either. Sometimes it takes finding the right doctor and the right med(s).

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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Yes, sleep deprivation has a lot of side effects on memory. It’s hard to be social if you’re fighting exhaustion. From reading the posts here it seems everyone is so unique and what works for one doesn’t work for all. Seems like it’s something we have to keep trying at. It does seem that doctors don’t always take into account the global effects of fatigue. Keep trying and keep a log of what you try because we sometimes forget what worked so well before. Also keeping track of things makes you see you are taking control and I find the lack of control I feel when I’m exhausted can be so stressful. I keep a gratitude journal and even when I’m down I can look at it and feel better. Sending good thoughts and prayers to 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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Please know it is not hopeless! It is hard, but try moving for 10-20 minutes a day, even just walking at the mall or in your neighorhood. Daily small amounts of activity can actually be energizing. I have to force myself sometimes but it really is worth it. Is there a gentle yoga or tai chi class you can join nearby? Even if you miss classes sometimes just having that on your schedule can be encouraging and you may meet people with similar concerns who have some understanding of what you’re going through. If your doctor is not addressing this or taking seriously maybe it’s time to find one who will. Give yourself permission to rest when you need it. That helped me a lot because I was stressing myself out thinking I was letting people down and I just had to say hey, I need this rest. I started keeping a gratitude journal that I write at least 3 things I’m grateful for every day and then when I’m really down I can look at it and things seem better. We are all so individual and have to just try things to see what works for each of us. So pick something to try and keep a log of whether it helps or not. That way you can take back control of some part of your life and see that you are trying to move forward. My mantra is “This is only temporary”. Where you are now is not where you will always be. Sending good thoughts and prayers your way!

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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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Are you getting the magnesium oil at a vitamin shoppe or other store or do you have to order online? I would love something to apply to my knees. The capsaicin is too harsh my skin won’t tolerate it. Traumeel cream helps some but would like to try this…

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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 am in agreement here- some days I literally can barely get out of bed and it is quite depressing! Question: do you have different TYPES of fatigue? I have a few different types, but the one that is most alarming is one where i feel CONSTITUTIONALLY weak- like my body is shutting down. It almost feels like a paralysis- like my body has no power to even move a finger. Does that make sense?
And I have felt this after 10 hours of sleep. And it is different from general fatigue/sluggishness or localized muscle fatigue. I sometimes wonder if something is being missed by my doctors?
Anyone understand this feeling?

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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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Welcome @danavetmom2. What a great first post. Thank you.
I like the idea of your gratitude journal and how it helps you even when you’re down and can’t write. What physical activity helps you the most?

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