Autoimmune Fatigue and/or Chronic Fatigue

For 2 years doctors have tried to find out why I am so weak that my knees buckle, and my body requires WAY too much sleep and rest. I"ve had extensive blood work several times, a brain scan, nerve/muscle tests, etc, etc. and no answers at all. For over 2 months I have a low grade fever and ache all over.

Hi @dorma, That definitely sounds frustrating. I know first hand having symptoms and feverishly searching for an answer.
I moved your post to a discussion that lines up with what you described.
@peach414144, @joannemm30809 and @rarelybees2889 are a few members that I feel like you can connect with.
I see the different tests they did with no definitive answers. Can you tell us what they were testing for and what they have ruled out?

With exception of the fever, I've had the same symptoms with Pernicious Anemia which led to Myasthenia Gravis and Peripheral Neuropathy. Anemia will make your RBC low and they are abnormal in size. Suggest you see a Neurologist that is competent with Myasthenia Gravis.

I cannot remember all the tests they've done, but they were always searching for some reason for my body being so weak. Even tested for TB, vitamin deficiency, brain problems, lung problems, since I had one lung totally collapse in the past. I do have fibromyalgia, which we know causes CFS, but this is way beyond fatigue. Several skeletal problems, but that's not causing the weakness, of course. I don't have the results yet from the nerve/muscle test, but I don't expect anything at this point.
They have sent me to several specialists, but no help at all. Needless to say, it is depressing.

This guy had 30 ulcers in his stomach when he was 12. Max Kain or Kane was on the highwire. Com show cured it all with raw goat dairy milk and raw meat he thinks it was the natural enzymes.

Unfortunately not. I spoke up. I told my PCP I needed him to manage my over all health conditions. That is his job. That's why we have Primary Care Providers. Manage referrals to specialists, review my med list to make sure no drug interactions happen between providers prescribing. Manage acute pain and mental health. He kept turfing me to the allergist and dismissing my symptoms. I was nice about it. I was crying for help. I have the same issue as others in this thread. His response.. he fired me as a patient as he had the lab result in his hand that showed I was in kidney failure because he was failing to do his job. He just quit. It put me in a huge bind. It takes 2-3 months to get a "New Patient" appointment with a decent PCP.
The worst of it is it was my PCP that was killing me. He prescribed the statin that nearly destroyed my Kidneys. And he quit because I hurt his ego. Speaking up doesnt help when dealing with egotistical jerks. You have to plan carefully to navigate our medical system

@kasb - Did your PCP fire you as a patient??!!
How can this happen if he found out you are in kidney failure?
I’m so sorry!!! Do you have a nephrologist now?

@dorma - I feel pretty much the same as you do. I’m very weak, unless I’m resting in bed for a while. Getting up going to bathroom makes me short of breath. I’m like this every day now since spring. Before that I was fatigued, but not like this.
I think I know why, because I had similar 10 years ago when I was finally diagnosed at Mayo with an autoimmune GI disease. I was treated for it and I was fine for 3 years- until onset of the pandemic. I have never had Covid, but I started having some of the GI symptoms again.
I have an excellent PCP who is helping me trying to see a good GI. I have an appointment in 2 months locally. Mayo rejected my request this time, but I asked them to review my request.
It is possible that you have some inflammation in your body that is not showing up on regular testing. It still means that something is wrong with you and your doctor has to consider everything. Keep asking!

@kasb. Unfortunately I agree with you. I was fired recently as well for asking why my doctor wasn’t advocating for me to get a diagnosis. Instead I had to make appointments with different specialty doctors and functional medicine doctors to get the root cause. Our health system is in a dire situation. I was fortunate I didn’t have a brain tumor since a request from a doctor as “urgent” to see a Neurologist was “rushed” to a wait of only 9 months. Hopefully people will become aware of what is happening and demand change in this archaic system. What happened to you is inexcusable and hopefully your new PCP will apologize on behalf of the medical community.

Becky, This link from your 2/7/2020 post is excellent!
Explains it all.
Thank you!!