Autoimmune Diseases and Fatigue

Everything you say is correct. After 10 years years, I'm just getting to the phase of trying to pace myself. Hard for someone with A personality. With a physical education back ground I have taken the exercise component seriously but it I don't get to it early in the day, I am not always successful. Also taken up Meditation and found it very helpful. However again - the earlier in the day the better

Hello @bieche -- welcome to Mayo Connect, we are glad you found us. Connect is a great place to ask questions, share your health concerns and learn what others with similar health issues are doing for treatments. I can relate to your approach with exercise as I have to get it done when I first get up or it doesn't get done and I know I really need to do it. My lifestyle is pretty sedentary so I need to force myself to exercise. Wasn't always that way but the older I got the less active I became. I try to make sure I do at least 30 minutes 4 to 5 days a week on my recumbent exercise bike. It's not much but every little bit helps at my age.

What type of meditation do you find helpful?

Thanks again for sharing.

John

OMG, yes, I totally identify. And I think it's hard for people to grasp. I used to be very fit, gym was my health and social center. Until my weakened hand started dropping me off the TRX. In retrospect, I had been noticing tiredness some time before, but I could still work through it. Now--well, it's been three years of no gym, and even as I sit here telling myself I should go for a walk at least, my body says, "you're not up to that. At all." And of course, no one wants to be around inertia, so friends drift, since I'm never up for anything. Going to the movies once was a big deal. And more than one activity, like movie AND dinner? Can't do it. Yes, at this point fatigue is more limiting and isolating than anything else.

So you will see me on another page (more importantly as it is my child) however I have been suffering and getting worse, with fibromyalgia, chronic fatique, and eating disorder triggered, I believe, but many things including the fibro cocktail I was on a few years ago. Additionally I chronic migrain which have seem to returned with vigor(stress???). I have had to quit my university teaching to maintain my FT position as a principal but that is becoming harder and harder. I love it so much that it keeps me going, that and I need a job:). I will be visiting a integrated health care program this month to rule out lyme and other bacteria not recognized by the CDC but in the meantime I have to suck it up and be well for my son who is sick with collagenous gastritis. Has anyone here found that they have Lyme as this is becoming more and more identified in autoimmune and diseases like fibro. The test is expensive but I think worth it. Any thoughts?

And perhaps the autoimmune relationship to CG...I wonder if connection to some of my issues????

@kellye5 A suggestion. Check your dX again to whether your autoimmune disorder is systemic or localized. Mine is systemic, which means that anything which happens to the body is impacted by one or more of my Amyloidosis mutations. I apparently have several.

I am diagnosed CF and Fibromyalgia if that makes any differences. I work long days and sleep or just stay in bed to rejuvenate the best I can from Friday p.m. to Monday a.m. If I slightly overdo, I am out for three days. I am beginning to lose sensation in arms and hands and fingers. Eye sight is getting worse. Etc.

The cognitive disfunction is frightening. Speech delays or forgotten words. I have quit my university teaching. My migraines are back in full blown form. NOT what I signed up for and I need to be a mom right now.

@kellye5 Honestly, all those are common dX within various Amyloidosis disorders, particularly Free Lite Chain, ATTR, Gelsolin, Cystatin, Multiple Myeloma, and a few dozen others. Mayo, Sloan Kettering, City of Hope, Fred Hutchinson, and other top clinics can help you. It is now primarily simple blood and urine testing to give a serious first dX step toward identification of a Protein Deposit Disease. And today there is treatment. Read the Mayo and Alnylam stuff on Amyloidosis, especially hATTR. And ready my medical dossier and compare your symptoms with mine at ATTPS://bit.Ly/1w7j4j8 There several formats available there, pdf, doc, odt, docx, rtf, etc. All free.

Thanks. I have only seen my internist, psychiatrist, integrated md, ... a rhumatologist scares me bc of the meds. I suppose it is time to not do this by myself. I am on hour 50 or so of sleeping...pop up every so often. Less and less strength and use of hands. I have never heard of many of the disorders above. I appreciate your help.