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.

@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?

Jump to this post

Thank you for that. I do get tired of having to research something in every post.

REPLY
@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?

Jump to this post

No idea what binding is.

REPLY
@robbinr

I have started taking D-Ribose with Magnesium and Malate (Again) in the afternoon. I have slept beautifully for three nights in a row. Wow!
We forget and then we remember what helped last time the fatigue got so bad. I also think I will try adding Glutathione also. It is supposed to be the mother of the Amino Acids, and a deficit can affect sleep, energy, etc.

Jump to this post

May try these. Thanks.

REPLY
@robbinr

I have started taking D-Ribose with Magnesium and Malate (Again) in the afternoon. I have slept beautifully for three nights in a row. Wow!
We forget and then we remember what helped last time the fatigue got so bad. I also think I will try adding Glutathione also. It is supposed to be the mother of the Amino Acids, and a deficit can affect sleep, energy, etc.

Jump to this post

All in with you on the magnesium. I've used Ancient Minerals Magnesium lotion for some time, however, it may help me get to sleep but not for the whole night. Adding magnesium tablets helps.

Liked by eleanork

REPLY
@robbinr

I have started taking D-Ribose with Magnesium and Malate (Again) in the afternoon. I have slept beautifully for three nights in a row. Wow!
We forget and then we remember what helped last time the fatigue got so bad. I also think I will try adding Glutathione also. It is supposed to be the mother of the Amino Acids, and a deficit can affect sleep, energy, etc.

Jump to this post

@mayfleur another thing at night helps me is melatonin along with magnesium a d pain pill

REPLY
@steph0219

I had an ANA Titer test done in April and the result was 1:2560. I am a Veteran so my primary referred me to the RA doctor. He had further testing done to rule out lupus. The blood test he did, he told me did in fact rule out Lupus. He diagnosed me with Fibromyalgia after all exclusions were ruled out. I have not felt good in almost a year. I have been diagnosed with sciatic nerve as well. I suffer with many other aliments. I have IBS, PTSD due to personal trauma, eating disorder, Bulimia Nervosa, which is in remission, multiple feet/ankle fractures due to my fainting spells in the military, tinnitus, and many other issues.

I have symptoms such as fatigue, loss of desire to do anything, low energy, appetite is not good, dizzy, tired all the time, headaches, blurred vision every now and then. I keep telling my primary something isn't right but no one can figure out what is wrong.

Is my ANA titer test of 1:2560 alarming? Anyone else going through these type of symptoms?

Jump to this post

Hello @steph0219, welcome to Mayo Clinic Connect. What did your doctor say about the ANA titer test results? I have no medical training or background but I know each of us are different and there can be many reasons for different test results. There is a good description of the test here:

MedLinePlus.gov – Antinuclear antibody panel
https://medlineplus.gov/ency/article/003535.htm

Autoimmune diseases can sometimes be difficult to diagnose. There is a really good TED Talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis. Have you seen it?
What happens when you have a disease doctors can’t diagnose https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnos

I'm also tagging members @slim1938, @nikohl7 and @sheker who have discussed different blood tests and positive ANA numbers to see if they have any suggestions for you.

@steph0219 have you thought about trying to get a second opinion?

John

Liked by steph0219

REPLY
@steph0219

I had an ANA Titer test done in April and the result was 1:2560. I am a Veteran so my primary referred me to the RA doctor. He had further testing done to rule out lupus. The blood test he did, he told me did in fact rule out Lupus. He diagnosed me with Fibromyalgia after all exclusions were ruled out. I have not felt good in almost a year. I have been diagnosed with sciatic nerve as well. I suffer with many other aliments. I have IBS, PTSD due to personal trauma, eating disorder, Bulimia Nervosa, which is in remission, multiple feet/ankle fractures due to my fainting spells in the military, tinnitus, and many other issues.

I have symptoms such as fatigue, loss of desire to do anything, low energy, appetite is not good, dizzy, tired all the time, headaches, blurred vision every now and then. I keep telling my primary something isn't right but no one can figure out what is wrong.

Is my ANA titer test of 1:2560 alarming? Anyone else going through these type of symptoms?

Jump to this post

@steph0219 Here is a book that might help get you started on discovering how disease can come out of trauma and PTSD. I have one of her books (not this one) and it is excellent. I'm glad you posted here, and the author also has some support groups too. Her books talk about hope and healing. https://donnajacksonnakazawa.com/autoimmune-epidemic/

A functional medicine doctor might be able to help as they look at the chemistry of what happens in the body. You might find that your health gets better as you work through things. When you look inside at some of that emotional stuff, you can sometimes acknowledge it and move past it, and be free of it. PTSD is treatable and worth the effort. I thank you for your service and that must have come at a high cost. I don't know how to interpret your ANA numbers, but mine were slightly elevated at one time and I had pain in my joints. I made a lot of changes and recovered my health. Some of it was gluten intolerance, but also a lot of food allergies, and foods that caused joint pain or breathing difficulty (asthma). It's easy to talk about things as a diagnosis, but remember that those are just categories for doctors. I once was told I had fibromyalgia, and I set about finding and changing the things that caused problems. As patients, we do have some power over our health that way. It's a journey of discovery and you can empower yourself by making changes. I didn't want to accept the limitations of a diagnostic label, so I did everything I could to change it with diet and exercise, and I had my old silver fillings replaced because they are a source of mercury and had contributed to a thyroid autoimmune condition.

You've mentioned eating disorders and IBS, and it might be worth experimenting to see if gluten is a problem. Gluten issues and Celiac Disease cause symptoms similar to what you describe and mal-absorption of nutrients, and it is an autoimmune issue which is linked to greater risk of other autoimmune issues. The problem is that wheat and gluten is in almost everything and it comes from grain (a protein). Here is some information on gluten in foods. https://celiac.org/gluten-free-living/what-is-gluten/sources-of-gluten/

You can test this by eating no gluten and see how you feel. If you eat plain meat and vegetables, and avoid bread and grains, you might feel significantly better, and it's easy to do. There are blood tests too. I would also suggest reducing sugar intake for the reason that sugars and simple carbohydrates cause inflammation, and with IBS, you would have a lot of gut inflammation. All of that can be causing pain in the rest of your body too. That was true for me.

It's a path to better health, and your path may be different that mine, and you'll have to take it step by step to find all the pieces of the puzzle. I hope I've given you some good suggestions.

REPLY
@johnwburns

Seems like all you’d need from the 9/11 clinic is a sophisticated toxicology screen, not an autoimmune diagnosis. Toxic effects are a realm unto themselves. You should probably check that in parallel.

Jump to this post

Hello John, I am interested in your comment that toxic effects are a realm unto themselves. Do you have any resources about this that would help me understand more about toxic exposures?

REPLY
@cinnamon215

Hello John, I am interested in your comment that toxic effects are a realm unto themselves. Do you have any resources about this that would help me understand more about toxic exposures?

Jump to this post

Hello @cinnamon215, I'm not sure if @johnburns is still active on Connect but maybe I can help. Here are a few references that may provide you with more information.

Foundation for Peripheral Neuropathy – Toxins That Can Cause Peripheral Neuropathy
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/toxins/

New York Dept of Health – What You Know Can Help You – An Introduction to Toxic Substances
https://www.health.ny.gov/environmental/chemicals/toxic_substances.htm

CDC – Registry of Toxic Effects of Chemical Substances (RTECS)
https://www.cdc.gov/niosh/docs/97-119/default.html

CDC – Skin Exposures and Effects
https://www.cdc.gov/niosh/topics/skin/default.html

REPLY

Im grateful today for our weekend discussion groups makes the time go by faster and we get to know each other better Thanks for starting this Gratitude discussion group @debbraw

REPLY
@cinnamon215

Hello John, I am interested in your comment that toxic effects are a realm unto themselves. Do you have any resources about this that would help me understand more about toxic exposures?

Jump to this post

I watched a great documentary about autoimmune and tooth fillings especially root canals. It was amazing I often wonder about all of this.

REPLY
@johnbishop

Hello @cinnamon215, I'm not sure if @johnburns is still active on Connect but maybe I can help. Here are a few references that may provide you with more information.

Foundation for Peripheral Neuropathy – Toxins That Can Cause Peripheral Neuropathy
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/toxins/

New York Dept of Health – What You Know Can Help You – An Introduction to Toxic Substances
https://www.health.ny.gov/environmental/chemicals/toxic_substances.htm

CDC – Registry of Toxic Effects of Chemical Substances (RTECS)
https://www.cdc.gov/niosh/docs/97-119/default.html

CDC – Skin Exposures and Effects
https://www.cdc.gov/niosh/topics/skin/default.html

Jump to this post

Hello John, I am so thankful for your response with all those references. I will certainly check them out! I appreciate you!

REPLY
@jennifer2010

I watched a great documentary about autoimmune and tooth fillings especially root canals. It was amazing I often wonder about all of this.

Jump to this post

@jennifer2010 Thank you for posting about the documentary about autoimmune and tooth filings, root canals. It is of great interest to me since I have many AI diagnoses. My dentist told me 2-3 years ago that my teeth are cracking and he doesn't understand it because it only a few years prior that he told me that my teeth were in such good condition that I would never lose my teeth. Now I am at risk to start losing them. Would you mind to share more information about the documentary? I would really appreciate it.

REPLY
@jennifer2010

I watched a great documentary about autoimmune and tooth fillings especially root canals. It was amazing I often wonder about all of this.

Jump to this post

@jennifer2010, I searched and thought this ("Root Cause") might be the documentary you referenced: https://toothbody.com/youll-want-to-check-out-this-new-documentary-on-root-canal-teeth-the-oral-systemic-link/. I have not watched it so I have no opinion about its validity.

REPLY
@meemer

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.

Jump to this post

@meemer you seem to have found the right answer for yourself! Being alone or not doing something gives one lots of time to obsess or worry about what bothers them. I know I’m better if I just go outside and chat with people. And the idea of quilting is great, I’m also a quilter but haven’t been able to do anything. 2 weeks ago, I had a dose of rituxan and now I want to sew! It makes me think of things other than being tired. I’ve even thought of trying to put my thoughts of the past year into an art quilt, but nothing has come up yet.
I’m sure glad you have a hobby and friends! Sure makes a difference!

REPLY
Please login or register to post a reply.