Autoimmune Fatigue and/or Chronic Fatigue

Posted by Langold @rarelybees2889, Jan 8, 2020

Hi Wondering if anyone has been diagnosed with autoimmune fatigue and/or chronic fatigue? I was diagnosed at Mayo Clinic. I wish there was more research into both of these…

Hello @rarelybees2889, Have you seen the following discussion? You might want to post any questions you have here:

> Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

There is also another similar discussion that you might find interesting.
> Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

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It happens with Fibromyalgia. Also with Lyme Disease. I have one of the two and it is almost unberable to carry on a normal life! So I just change what used to be normal into a new Normal. I build my day around my rest time! If it hits out of the blue I just roll with it. This last week I had a spell and slept about 36 hours out of 48.
Hang in there!
Sundance(RB)

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I push myself a lot to get everything done. I am always looking for practical solutions. There is so little on this and so little research being done…

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Hi, @rarelybees2889 . I had seen this post on autoimmune disease and fatigue and just knew that it related to me. I have an autoimmune disease and am tired all the time, but I just didn’t have good info. Since then I have found some good articles about autoimmune fatigue. This one is pretty scholarly, but just glide through it and look at the headings: types of fatigue, sleep and circadian rhythm, and stress. It also states that much more research needs to be done. I hope this will be interesting to you!
https://www.sciencedaily.com/releases/2015/03/150323105245.htm

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@rarelybees2889 and Becky- good article! I have had autoimmune GI disease with at times fatigue so bad that I pretty much lay panting in bed. I was never really told what to do about it and it was difficult for the family to accept it. After treatment the fatigue slowly went away and with time I felt physically strong. Now only my brain gets tired!

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Hello, I am new to this…I am a parent of a 16 year old boy who has had a lifetime of GI issues nobody has been able to diagnose or help and now nearly 2 years of debilitating chronic fatigue and brain fog. He has ben seen by MANY Dr.'s at children's hospital. He has been tested for all sorts of things: thyroid, cardiac, allergies, autoimmune, Lyme's, rocky Mountain spotted fever, infections disease for something picked up while traveling internationally…you name it. Nobody has been able to figure out what is going on or how to help him.
Any ideas? We need all the help we can get?

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@abrown2

Hello, I am new to this…I am a parent of a 16 year old boy who has had a lifetime of GI issues nobody has been able to diagnose or help and now nearly 2 years of debilitating chronic fatigue and brain fog. He has ben seen by MANY Dr.'s at children's hospital. He has been tested for all sorts of things: thyroid, cardiac, allergies, autoimmune, Lyme's, rocky Mountain spotted fever, infections disease for something picked up while traveling internationally…you name it. Nobody has been able to figure out what is going on or how to help him.
Any ideas? We need all the help we can get?

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Hello @abrown2, Welcome to Connect. As a parent, I can't imagine the stress and pain your son is going through while all the different doctors have been trying to figure it out. Have any of the doctors mentioned the possibility of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)? The symptoms you describe sound similar to ME/CFS. Here is some information on ME/CFS and also another discussion on the topic you may find helpful from what other members have shared on the condition and symptoms:

— Symptoms of ME/CFS: https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
— Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Since the doctors at Children's Hospital have not been successful diagnosing your son's condition, have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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Thank you for your reply. I have read about this condition myself, but nobody has mentioned it or diagnosed him with this condition. Even so, we are always looking for a reason…some of these conditions seem to have gotten a name, but no real substantial cause or treatment. I am certainly hoping to help my son move forward with as normal a life as possible. I will read the other links you shared. It is much appreciated. We are working with Mayo for getting a second opinion. Have not met with them yet.

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@abrown2

Hello, I am new to this…I am a parent of a 16 year old boy who has had a lifetime of GI issues nobody has been able to diagnose or help and now nearly 2 years of debilitating chronic fatigue and brain fog. He has ben seen by MANY Dr.'s at children's hospital. He has been tested for all sorts of things: thyroid, cardiac, allergies, autoimmune, Lyme's, rocky Mountain spotted fever, infections disease for something picked up while traveling internationally…you name it. Nobody has been able to figure out what is going on or how to help him.
Any ideas? We need all the help we can get?

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@abrown2 Have you had a complete genetic scan completed on your son? They are getting into the do-able range for most folks now, thanks to Medicare and advanced technology. Dante Laboratories and Sequencing.com are a couple of good places. I have gone through many of the symptoms and procedures, and now I know almost my entire blood kin as wild type myeloma. Mine has ended up with some pretty serious stuff which every doctor except my birth doctor denied I could have. Get that whole genome done. It may save his life from disability and early death.

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@brown2 – I do personally know how upset you must be.
I have a son, who went through something similar twice and as a result lost of school in 6th and 10th grade.
In 6th grade he developed the extreme fatigue and dizziness/ vertigo. No final diagnosis made. He got better after what seemed like an eternity and could go back to school.
In 10th grade it started with collapsing in school. Total exhaustion probably. He was seen by a Pediatric Neurologist at our University hospital. Many tests done- normal. His gait was that of an old man. She diagnosed him with most likely Fibromyalgia, also because his older sister had been diagnosed with it.
Missed lots of school.
He eventually was referred a Pediatric Rheumatology program for children and young adults to help them manage the effects Fibromyalgia had on them. That really helped, especially learning how to get normal sleep again. With more sleep, symptoms improved.
Regarding your son’s GI issues, was he tested for Celiac disease?
Fibromyalgia often is found together with other autoimmune diseases.

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@oldkarl

@abrown2 Have you had a complete genetic scan completed on your son? They are getting into the do-able range for most folks now, thanks to Medicare and advanced technology. Dante Laboratories and Sequencing.com are a couple of good places. I have gone through many of the symptoms and procedures, and now I know almost my entire blood kin as wild type myeloma. Mine has ended up with some pretty serious stuff which every doctor except my birth doctor denied I could have. Get that whole genome done. It may save his life from disability and early death.

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Thank you. That is very interesting. He had one genetic test run through our integrative Dr. I forget now what he was looking for, but the test really did not show anything of substance.
The geneticist at the children's hospital we work with is very good. Very thorough and clear. He is not seeing a reason to run a test yet. I guess not knowing what to look for can be challenging. I think it would a good idea, but I am not geneticist.

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@astaingegerdm

@brown2 – I do personally know how upset you must be.
I have a son, who went through something similar twice and as a result lost of school in 6th and 10th grade.
In 6th grade he developed the extreme fatigue and dizziness/ vertigo. No final diagnosis made. He got better after what seemed like an eternity and could go back to school.
In 10th grade it started with collapsing in school. Total exhaustion probably. He was seen by a Pediatric Neurologist at our University hospital. Many tests done- normal. His gait was that of an old man. She diagnosed him with most likely Fibromyalgia, also because his older sister had been diagnosed with it.
Missed lots of school.
He eventually was referred a Pediatric Rheumatology program for children and young adults to help them manage the effects Fibromyalgia had on them. That really helped, especially learning how to get normal sleep again. With more sleep, symptoms improved.
Regarding your son’s GI issues, was he tested for Celiac disease?
Fibromyalgia often is found together with other autoimmune diseases.

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Thank you so much for contributing. He has been tested for Celiac and seen by Rheumatology and just about every other specialty at Children's. all tests come out in the "normal" range, but he is not "normal." He did not make it to the 8 min. mark on his tilt table test without passing out, but even that did not lead anyone to anything such as a diagnoses or anything to help. he doesn't have the classic pain often associated with Fibromyalgia, but the exhaustion is relentless. I just thought they would test him and find some weird syndrome with a name I had never heard of and figure out a way to help him feel better. That is not the case. It is like some weird medical mystery. Hopefully we will get somewhere one of these days. I appreciate your help : )

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