Autoimmune Diseases and Fatigue

@kellye5 Your statement about more than one doctor finding nothing wrong hit a note with me. I have known for 70 (seventy) years that something was wrong. I have gone up and down with weight, brain problems, and every organ I have left has been diagnosed with some problem or another. You can read my story free at https://bit.Ly/1w7j4j8 "Amyloidosis Dossier..." Probably 60 doctors have told me there is nothing wrong, that the lab reports were not reliable, that I was "psycho", the medicine was made in China, etc. But now I think I know the truth. I have a form of Amyloidosis. The weight loss, and the lab reports, and even a few of the doctor reports have said as much. Anyway, I think you should go to the Mayo Clinic in Rochester. They are better prepared to handle this. In the meantime, watch and learn from their videos and other writings. Especially the Grand Rounds videos. Ask your doctor to watch the one "What the doctor should know about Amyloidosis." And you watch it as well. And the others. Anyway, what you describe fits Amyloidosis, especially Hereditary Primary Systemic Transthyretin Wild Type. (short form: hATTRwt). There are probably a couple thousand mutations of Amy, although we don't know all of them yet. One great book on the subject is from Mayo's Morey Gertz, MD, "Amyoidosis - Diagnosis and Treatment" It is expensive, but well worth the money. Also, Kenneth Kee has a couple, and NIH.gov has a stack or two articles and papers. Don't rely on your doctor to be up to date. Study for yourself, and find a strong hematologist.

How do you get motivated

Hello @rosanna1959 -- Welcome to Mayo Connect. We are glad you found us. What a great question for your first post on Connect. I think it's something a lot of people struggle with, including myself. For myself, I try to feed on positive thoughts and keep away from negative thinking which always seems to be a downward spiral. Regular exercise of some kind also helps me -- nothing big, some stretching, short walk (for me real short!), or whatever you physically are able to do. Finding something I really enjoy doing and making time to do it helps keep me focused on positive thoughts. Setting goals works for a lot of people also. Here's a website with a list that may be helpful: https://au.reachout.com/articles/tips-for-getting-motivated.

@rosanna1959 are you having difficulty getting motivated or staying motivated? Do you have any activities that you enjoy doing that help keep you motivated?

John

@rosanna1959 Motivation for me has always been a matter of picturing what I wanted for me and my family, on down the road. However, over the last ten or twenty years I have just lived by habit, mostly. I spent 50 years as a pastor, so I have a habit of trying to make the lives of other people better. I spent 20 years with a second occupation, playing, coaching and officiating football. So I now watch a lot of football, and burn a lot of energy analyzing the playing, coaching and officiating action. We have four children, 10 grandchildren and 15 great-grandchildren, helping them, teaching them, washing them, protecting, so I still do that. I have internet friends around the world for whom I feel responsible, so I write books for them, including books of my own disorders (https://bit.Ly/1w7j4j8). I have lived in America all this time, and I put a lot of energy into trying to guide the country and protecting her from her enemies. Six of us have served some way in the military, as have about another 30 or my siblings and their families. That is all the motivation I can handle, for now. The docs told my wife, 30 years ago, that I would not live through the night. That, in itself, is a lot of motivation.

January 26, 2018 Ralph Reetz
My story has a similar beginning as to many others. It starts back to an unknown date sometime before 2011, at the age of 76, when I was finally diagnosed with what turned out to be SPORADIC Inclusion Body Myositis. Before 2011, I began to notice a very minor difficulty in arising from a chair and I suppose that was the actual beginning but it coincided with aging so it was dismissed. Also, in my case throughout the last 5 years the only pain is that which occurred after the more than two dozen falls. My good fortune is that I have no chronic pain. Most of my falls came from out of the blue and were instantaneous as a result of my knees buckling. It seems that the cause is a combination of weak muscles and balance issues. It also seems that when I fall it is the result of my not intensely concentrating on every step I take when walking and every individual stair that I place my foot upon. If I intensely concentrate, I believe that at this point in my IBM progression, I may be able to avoid the falls. It has been about 12 weeks since my last tumble. It is hard “mind” work but it beats falling.
I have just begun a light exercise program at the VA and at home and I find that there is a very thin line between over doing and not doing enough. As I see it and as it applies to IBM Exercise Therapy it is unscientific and seems to be almost blindly approached based on each individual’s ability. The Therapists simply cannot know the condition of our individual muscles. Therefore, there is a strong reliance on our feedback. The VA and I agreed that for me to begin using a walker (since my falls occur rarely when I am walking) would potentially result in an earlier dependence on a walker and a detriment to remaining mobile for a longer time. So there will be no walker for now. For me that is good news
I am able to drive with excellent reflexes (others that drive with me may suggest differently however they were suggesting that my driving was scary 30 years ago).
I have a permanent, moderately strange feeling (somewhat of a very slight numbness) in my leg muscles (calf and thigh) and my hands are noticeably weak.
Sorry for the many words. Thanks to all who post it helps me to keep my chin up!

Hello Ralph (@ralphreetz), welcome to Mayo Connect. Thank you so much for sharing your story in much detail. It is helpful for others reading through the discussions looking for their own answers. Connect is a great place to ask questions and learn what others with similar health problems are doing for treatments. I think you are spot on for the exercises. Each of us are different when it comes to therapy and I also don't believe one size fits all. I do think we have to do something to keep moving and help build up our core muscle strength. I'm wondering if the slight numbness may be peripheral neuropathy as it normally starts in the hands and feet. I have slipped and fallen a few times. I think I don't have the best balance and some of it's age related and some due to the neuropathy and weak muscles. The Foundation for Peripheral Neuropathy has some easy exercises to help with balance on their website here:
https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/#balance
I also found some information related to peripheral neuropathy on the National Institutes of Health site that might interest you since it seems to describe the symptoms you are having with your sporadic inclusion body myositis.

Peripheral neuropathy associated with hereditary and sporadic inclusion body myositis: confirmation by electron microscopy and morphometry:
-- https://www.ncbi.nlm.nih.gov/pubmed/11054491

Thank you for being proactive and an advocate for yourself. It is the best thing we can do to help with our health problems.

John

@ralphreetz here are some more links that provide information on physical therapy for Myositis:

The Role of Physical Therapy in Myositis:
-- http://www.myositis.org/storage/documents/2011_Conference_Presentations/Myositis_and_Exercise_Part_1_-_PT_and_OT_Final.pdf

Physical Therapy and Myositis:
-- https://www.hss.edu/conditions_physical-therapy-and-myositis.asp

Journal of Clinical Neuromuscular Disease - "The Effectiveness of an Individualized, Home-Based Functional Exercise Program
for Patients With Sporadic Inclusion Body Myositis"
-- http://myositis.org.au/wp-content/uploads/2014/11/Johnson-L-home-exercise-program-in-IBM.pdf

John

Hi John,

Thank you for your response and the suggested web sites.

I also am on a The TMA (The Myositis Association) site and that offers forums and IBM and other Myositis information as well.

Thanks again,

Ralph

Several years ago I was diagnosed with an autoimmune disease when a crater opened up on my lower back. It was and still is nameless and it includes necrosis. It eventually healed but the pain never subsidized. Last year I was diagnosed with rheumatoid arthritis in my hands.

Through all this I dealt with horrible excessive daytime sleepiness. I fall asleep with no warning. Being a mother, I was always a light sleeper. Now I fall into such a deep sleep that my family has trouble waking me.

I have been reading about Sjogrens. My dentist commented last month that he had never seen a mouth as dry as mine. This has been a problem for me along with dry eyes. I find that these are symptoms of the disease. Last week the diagnosis was anemia, 7.9. Very low.

I have also been reading about Modafinil. The fatigue is overwhelming. Getting a glass of water is a monumental feat. Has anyone taken this medication?? Did it help?? Thank you.

Hi @jeriliz, I did a search through the posts on Connect and found some members who have discussed taking Modafinil. I am tagging them to see if they can answer your question on whether it helps. @jmmb, @bren1985, @jyth, @lottiemouse, @bobehrlich, can you offer any information about taking Modafinil for fatigue and if it helps?

@jeriliz I also found a link on Drugs.com that has user reviews of Modafinil here:
https://www.drugs.com/comments/modafinil/
Hope this helps.

John