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JohnWBurns (@johnwburns)

Autoimmune Diseases and Fatigue

Autoimmune Diseases | Last Active: Nov 16, 2020 | Replies (474)

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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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Replies to "With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal..."

Hi, Yes, fatigue pretty much skews your entire life. Everything is muted. Is fibromyalgia your primary or only diagnosis? Have you been evaluated of any other autoimmune or non-autoimmune conditions linked to fatigue, e.g. anemia, thyroid disease? I ask because fibromyalgia symptoms are often a subset of a broader syndrome. Its unlikely but low vitamin D can cause gritty fatigue and that is mainstream thinking now. Please don’t start taking a lot of vit D with a blood level taken however.
Ever had a sleep study done? Poor sleep architecture and pain are joined at the hip.
Hope this helps.

I agree with getting a sleep study. Getting good rest helps fight the fatigue and the fibro pain. I have “fibro fog” – forgetful, distracted. I write lists a lot and jot down notes a lot. I always have pen and pad in my purse and also use “notes” on my phone. For me, too, the fatigue is the hardest to deal with. I can take pain and even struggle through it, but it is the debilitating fatigue that really gets me (though constant pain can cause fatigue). I had a sleep study and found I have restless leg syndrome (even my arms). I take trazadone to help sleep better now. I also have RA and Sojourne’s and spinal stenosis with the fibromyalgia. I would be surprised if you don’t have something else with yours. I also highly recommend a tempurpedic mattress. I don’t work for them or anything like that. I just have one that has helped very much with getting better sleep. When I travel now, I will not stay at any hotel without such a mattress. It truly helps. I find either a warm Jacuzzi bath or warm massage shower before bed also helps. I also found that making sure I walk daily (no running) or swim helps. I have also found extreme heat makes me worse and extreme cold makes me worse.
Though I would love to live in Hawaii, I live in Texas where it has been over 100 for several days. I find I have to walk at the mall so I remain inside where it is cool or I go swim. The only thing I can really do outside in the heat is swimming. I hope some of this has helped or will help you. After a while, you will learn what causes a flare for you and how to manage it all better.

Thank you for your story! Among everything else, I too am affected by extreme temps. We recently moved from the humid midwest to the dryness of the Rockies. The humidity was difficult for me no matter what the temp was. I am currently lining up a new dr for where we have moved to, so maybe more help will come my way. Best of wishes to you!

Thank you! So far fibromyalgia is my only diagnosis………heart, thyroid, anemia, respitory all checked out fine. I am currently in search of a new doctor in the area we have recently moved to, so maybe more issues can be found/treated. I will ask if a sleep study might assist me/dr in discovering what else is at root. Once again, thanks!

Take a vaca from your issues maybe a yoga or tai chi class massage therapy you need to destress music? Something calming you deserve to do it for your self

Hugs and prayers to you!

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.

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?

I do, all too well. Very true that there are nuances of it. But, in my case it is counterproductive to dwell on its various shadings, or maybe just too depressing. Have you ever had a sleep study? A missed sleep issue can make a load of difference. There is some credence to vitamin D deficiency causing severe fatigue so a test isn’t a bad idea if you’ve never had one. Stretching helps, as does not going too long without moving. The ‘constitutionally weak’ thing can be frightening so fight it. I assume all blood work is normal as far as fundamentals like no anemia and normal thyroid function?

Excellent point about a log. It can be easy to let something that helped slip through the cracks because of a single bad day. Plus, the exercise of actively reviewing, recalling, noting, and evaluating is a tool to help stay out of the weeds in multiple areas, like lack of activity and mood.

I had my blood drawn and checked for vitamin D deficiency. It turned out that I almost had no vitamin D! I was put on prescription vitamin D for a few months and now take vitamin D every morning and evening. It has helped with fatigue, but has not totally removed it.

I totally understand, unfortunately! I joke around and say I should be studied because I go into what I call “hibernation”. I am SO fatigued that I can sleep 18-24 hours without eating, drinking or going to the bathroom. It is like I am in a mini coma. I am extremely difficult to wake during these times. I call them my lost days. It is very weird. I have them after I’ve really over extended myself, if I am extremely stressed for several days in a row, or if I am sick. They do not happen daily or even weekly. But when they do happen, I don’t know if it is fatigue or body shut down or what. But I understand your feeling. It is very depressing.