Living with Lupus, Hashimoto's, fibromylgia & chronic fatigue

I have Crohn's disease and now diagnosed with cancer.

Diet makes a difference for my autoimmune disease. My doctor isn't a believer but she is super pleased with the results. I started by working with a dietian who specializes in autoimmune conditions. Then I saw a holistic doctor who could help me understand want inflames my body. We are all unique. The path to disease is going to be different for everyone

Thank you so much for your response. It’s a daily battle as you know. I also suffer from Long Haul Covid and sometimes I don’t think that I can make it another day, but that’s when I go straight to bed! My faith in GOD is also what keeps me going. The Severe Chronic Fatigue is what is my most debilitating symptom. There is not enough adjectives to describe how EXHAUSTED I am literally ALL of the time. I have to take 90 mg of Adderal a day, Stanford put me on a very low dose of Naltrexone. They write it off label for patients like me and it has helped some. I still have to drink like 2 5 hour energy drinks on top of that to get through the day and I don’t even work outside of the home anymore. Gracious, it’s SO TOUGH for all of us and it helps to be able to talk to other people that truly somewhat understand. I was diagnosed with Fibromyalgia and Severe chronic fatigue when I was 21 and got a SEVERE case of mono. The mono was SO severe that I literally had to quit my job and move home back in with my parents. I couldn’t work for 8 months way back then and I have never quit feeling like I have mono and I’m 52 years old, so I have also struggled with it for 30 years… 🥲🥲🥲

In my early 30s I came down with chronic fatigue syndrome. I ran a 103 temperature for 3 months, no antibiotics would help. I needed 14 hrs sleep to survive. No doctor knew what to do. I lost my job because my doctor said I needed to be on disability to get better. I was diagnosed with CFS, FIBROMYALGIA, Depression, IBS, and many others. I went to a symposium at a hospital for CFS. The doctors said they didn’t understand, but many of their patients were getting better. They said echinacea was helping. I started taking it, and slowly I too started to get better. Temps went away with no antibiotics and I started getting stronger.
It’s 30 yrs later, and I have been taking it everyday ever since. I never get sick, and my resistance is so much better all these years. I can’t explain it, but if I run out and let a few days go by, I start running a fever. I just can’t explain it nor can anyone else, I never had covid either.
Unfortunately, 4 yrs ago I was diagnosed with MALS. It’s been hell with the surgeries I’ve had but not real success in solving the problem. But I’m not giving up. Staying strong and positive really helps.

@bfort
I’m interested in knowing what you took to help your CFS. I’ve had it for over 25 yrs and have had no relief unless I stay in bed all day. If I clean my house or run a few errands I pay for it by being in bed for days. I’m very discouraged and I’m tired of being tired.

I am so sorry to hear about your illness but it sounds like you are not giving up. I just wanted to share that my best friend's husband was diagnosed with stage 4 kidney cancer last January. Along with surgery, they also visited a holistic doctor and a dietician. He went back last week and his scan showed his cancer is gone. Hang in there.

In my early 30s I came down with chronic fatigue syndrome. I ran a 103 temperature for 3 months, no antibiotics would help. I needed 14 hrs sleep to survive. No doctor knew what to do. I lost my job because my doctor said I needed to be on disability to get better. I was diagnosed with CFS, FIBROMYALGIA, Depression, IBS, and many others. I went to a symposium at a hospital for CFS. The doctors said they didn’t understand, but many of their patients were getting better. They said echinacea was helping. I started taking it, and slowly I too started to get better. Temps went away with no antibiotics and I started getting stronger.
It’s 30 yrs later, and I have been taking it everyday ever since. I never get sick, and my resistance is so much better all these years. I can’t explain it, but if I run out and let a few days go by, I start running a fever. I just can’t explain it nor can anyone else, I never had covid either.
Unfortunately, 4 yrs ago I was diagnosed with MALS. It’s been hell with the surgeries I’ve had but not real success in solving the problem. But I’m not giving up. Staying strong and positive really helps.

@bfort Thank you so much for sharing your story! I'm so glad something worked for you!
How much Echinacea do you take each day?