Autoimmune Fatigue and/or Chronic Fatigue

I've had labored breathing for years; thought nothing of it. The CT scan of my chest was a last attempt at finding a cause for the extreme weakness and fatigue. So the MAC was accidentally found. I spent many days in bed; too weak to stay up. Sometimes sleeping for over 32 hours at a time. But the actually weakness is mostly in my legs, though I have very little strength in my hands and arms.

About this same time, my neurologist diagnosed a problem with my knees buckling and almost falling. So I finally found out about that, and he just said it will get worse. Period.

Since taking the 3 antibiotics for about 2 months, I am noticing an improvement; my body doesn't demand as much sleep, nor as long, even though I go back to bed for a while after taking a green tea capsule and a tramadol, until my body can function some. I have to rest mid afternoon; no choice, but at least it helps, and I can get back up and function a while longer. I am so very thankful to at least know what is going on, and getting some help. Time will tell.

When you have an autoimmune condition, you do not want to strengthen your immune system. It is already too strong against your own tissues. Echinacea should not be taken by people with autoimmune conditions.

@dorma- You certainly have had complicated medical problems.
It’s wonderful that you notice an improvement.
It probably will take a while to heal the effects of the longstanding infection.
Regarding the weakness in arms and legs- is this something that could be helped with physical therapy?

Seems doubtful, but I've been considering trying that again. I plan to talk to both my specialists about it next visit. At least long enough to learn how to try better at home.

Definitely both. I hope to learn more about how to better care for my issues.

Sorry. The only thing that saved my life was echinachea. Everyone is different. I still take it and won't stop.

I understand about echinacea. It is the same with elderberry. But like @bfones, I had to make a choice for myself. I certainly would caution anyone with an auto immune disorder, to research EVERYTHING & if you have an understanding Dr, to discuss it with them. I thankfully have a wonderful one. She left it up to me with the understanding that I could bottom out worse than I already do. Sometimes I do regardless, but most times I am again able to snail walk with my service dog while she has run time. I do it for her. I think too it gives me enough energy to do one big something here. Today it will be give her a bath, then me a shower before crash in bed. It is beyond words to express how autos change & destroy a once very active life. I never would have imagined how one day I'd be so jubilant being able to empty & load a dishwasher once a week or wash/dry a load of clothes. Forget folding & hanging the shirts. At least they are clean. I've learned to stop worrying about what others think & be thankful I can still get dressed & take my pup out. I now have a helper come twice a week to do what I no longer can, but those times I have an energy spurt, I consider carefully how to spend it. My pup comes first. She's given so much for me. I hope each of us can find something to reinflate us for a time even though we know we still slow leak a long the way. Remember to love yourself as is. There's nothing to forgive.💜🐕‍🦺

Hi
Reading how you feel takes me back when I was in your shoes. I used to sleep 14-16 hours a day. It was really tough to get out of bed. That was when I was diagnosed with Chronic Fatigue Syntrom. I couldn't remember a thing and got lost whenever I would drive to the simplest of places. I ran 103 temp for almost 6 months and lost my job many years ago. I learned to take care of me first and enjoy time. Life was too short. I had been a workaholic and loved my job and when I couldn't do it anymore I became more depressed. Fortunately my doctor put me on an antidepressant and I took echinachea. I stayed positive and had great support from my husband.
Stay positive you too can get better. Be your own advocate.

Thank you!

At 70, after YEARS of telling doctors about the lupus that ran in my family and being told (without tests) that I DID NOT have lupus (they always looked at my face only), my own doctor finally ran the test. He said he thought I had psoriatic arthritis because from my knees down to my ankles I had for years suffered a itchy, bright red, rash with some blistering.
Well, guess what? SLE and Hashimoto’s!! And I’ve had previously Graves Disease and a recurrence of a “rare” invasive skin cancer in the genital area, after 30 years.
So sad the medical community is so uncaring until it becomes epidemic. And I, too, have suffered chronic fatigue, fibromyalgia, sinus headaches (migraines!) almost daily. Never got any apologies for years of suffering without any support.