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happiness4begginners

Updated 11mo ago

Doubting My Chronic Fatigue Syndrome Diagnosis

does anyone diagnosed with chronic fatigue syndrome find themselves doubting the diagnosis? Believing there could be something else going on underneath the doctors are no longer looking for because you have that label?

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Altoria

2y

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 💀🤷‍♀️
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Aeryll

2y

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 :)
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Interloper

2y

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.
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AKD

2y

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!
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Kendra363

2y

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

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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