Autoimmune Fatigue and/or Chronic Fatigue

@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 - 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?

@astaingegerdm - Yes he did. I was his patient for 8 years. I was very healthy until mid 2020. I had covid in Feb 2020 and developed Long Covid symptoms after a few months. He turned into a condescending jerk who obviously didn't believe LC was real. He ignored my symptoms unless they were measurable like tachycardia. I finally got him to refer me to an allergist 8/2021 but he also prescribed Lipitor (Statin) in June 2021. The Allergist identified my issues with Mast Cell abnormalities and set a treatment plan but I kept developing new symptoms. I got really sick in Jan 2022. I developed Angioedema and severe muscle and joint pain. I REALLY thought I was dying. I presented to his office after my ER visit and they did no follow up tests. The PCP kept ignoring the symptoms and saying he was letting the Allergist manage my condition. They didnt even review my current meds. I asked them to. After a month of thinking I was dying I finally figured it out for myself. A drug interaction between Lipitor and Cyclosporine. They should have caught that. That was the beginning of my kidney decline. I developed Rhabdomyolysis but we didn't figure that out until June.
The only reason we figured out I was in failure (GFR 14) was because the allergist and I discussed stopping the Lipitor completely for a while so I could take the cyclosporine to reduce inflammation. He ran labs and found it. That's when I went back to my PCP to rerun my labs and have a discussion about managing my over all health status. That's when he fired me in a follow up letter. They did say they were referring me to a Nephrologist but I never got a name or a call back. I tried to find one on my own but couldn't get a new patient appt for 3 months with any Nephrologist. I had a friend who is a dialysis nurse slip a print out of my labs to the doctor she works for. He got me in the same week. I had stopped taking the Lipitor about 3 weeks previously anticipating the drug switch and also because I had concerns about what I was reading about statins. When the Nephrologist re-ran my labs my GFR was up to 35 after being off Lipitor 3 weeks. He easily diagnosed the Lipitor Drug reaction and Rhabdomyolysis. At 7 weeks off Lipitor my GFR is up to 45.
My former PCP ignored symptoms of a Statin drug reaction for a year. I'm still not recovered. It takes 3-4 months to resolve the Rhabdomyolysis muscle pain and hopefully the Angioedema will resolve too. I'm 9 weeks post discontinuing the drug. I'm starting to see a decrease in the muscle pain. My mobility was minimal until last week. Without a PCP I didn't have a doctor to manage the acute pain. The Nephrologist was basically done with me as soon as he figured out I wouldn't need dialysis and turfed me back to the Allergist.
The Allergist saved my life. He got my Long Covid symptoms under control but it was masked by the Lipitor reaction symptoms for another 9 months before we figured it all out. I'm praying that this is actually my last mountain to climb and that in another month the Rhabdo will be resolved and when the dust settles there wont be permanent kidney damage or other problems and I'll be able to return to a normal life.

@kasb - What a nightmare!!!
I’m so happy that you are back on track to health.
Your PCP should be reported.
Hope you find a new one soon. There must be some decent ones. Can your allergist recommend someone?

@astaingegerdm - Its been a crazy 2 1/2 years. I hope I'm back on track. We wont really know for another month or so. I've made 2 appointments for a new PCP so far. (September/October). You can't get a New Patient Appointment for 3+ months with a highly rated PCP. 2-3 months for the average PCP. My Allergist says he doesn't even have a PCP. Even if he did have someone it would take 3+ months to get in.
Forget actually picking the provider you research if you need to be seen immediately. I'm depending on Doc in the Box clinics for now. I'm going to treat the process to get a new PCP as an interview process. I'll just keep making appointments until I find someone I feel is competent. Thanks!

Hello @dianegerrodette, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thanks for sharing that tip. It is an often overlooked cause of chronic fatigue syndrome and multiple chemical sensitivity. Here is an older article from 2007 on the topic.

Functioning in individuals with chronic fatigue syndrome: increased impairment with co-occurring multiple chemical sensitivity and fibromyalgia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1890280/

Are you able to share a little more about your diagnosis and how you discovered the cause?

Hello. I know this article is over a year old but I have hopes of someone reaching back out to me. I have had my illness for 13 years and have never received an actual diagnosis from the many 50+ doctors I have seen.
I am gluten intolerant, sugar alcohol intolerant, and many other foods as well. I have multiple Chemical sensitivity. Whenever I inhale perfumes, cigarette smoke, or apply lotions to my skin, including sunscreens, I become deathly sick as if I have the flu and it sends me to bed for days at a time. I become weak, disoriented, brain, fog, headaches, nausea, and sometimes muscle aches to name a few. The most at one time that I have ever stayed well is three weeks it has left me disabled and unable to work. I am still searching for answers asked to how I woke up one morning in 2009 and have never been the same again.

@dixzeland Sounds like you have had a really difficult time. And you’ve not gotten ANY answers? Have you gone to a major medical center or university teaching hospital? The doctors usually try to collaborate and help solve problems.
Is that something you’ve done r would consider?