Doubting My Chronic Fatigue Syndrome Diagnosis

Absolutely, CFS is basically just the diagnosis they give when can't find a cause. I found some issues that were contributing to my fatigue

Yes, for sure. And often, people do have more than one condition. I went through the list of differential diagnoses to make sure I had done my due diligence. Once I had ruled them out, I felt better about accepting CFS. About 2 years ago, my sister who is a doctor, suggested I look into POTS. It can often coexist with CFS. It has been helpful for me to pursue as there are actually medicines to help a little. So I always suggest people look into it if they have CFS as well. I think long COVID is really going to change the perception of CFS since they share some similarities and as CFS can often start after a viral illness. So it's so exciting that we may have more acceptance and hopefully treatments soon!

Chronic fatigue is a blanket term that basically means you’re exhausted but there is an unknown medical cause. In my CF journey over decades, I have discovered that many issues combined will keep me in a CF cycle. So many different things could be causing your problem. For me it was the following: hormonal imbalance, hypothyroidism, Vitamin D & B levels, Candida, Adrenal Fatigue, glycemic index diet, avoiding foods I’m sensitive to. Many years and many docs to get this far, and I’m not at 100% still.

Yes to all of what you said. I’ve been to countless doctors who just dismissed me and said they couldn’t do anything, wouldn’t look into anything I suggested. I’ve found 2 doctors who are different and have been told by the one I’m seeing now that they think I was misdiagnosed for the last decade. I’ve now been tested for mold exposure and am being treated (slowly feeling a bit better) and am about to be tested for Lyme disease as I have classic symptoms of both. Even though it can be difficult, keep pushing for answers if your gut tells you that something more is going on. I know it’s super tiring, and I’ve had to take breaks from doctors at times before I continued the search just because of medical fatigue. Hang in there :)

While I do believe I have CFS I'd love for there to be a logical explanation and be able to feel better. But sadly CFS diagnosis is one of exclusion just like with fibromyalgia. Which sucks because fibro and CFS are real 💀🤷‍♀️