Mystery illness for 12 years. No doctors can figure it out.

Posted by emmie89 @emmie89, Aug 12, 2025

I want to preface this by saying I know that nobody here can diagnose me, but that isn't why I am posting. It is more me just wondering if anyone has had a similar experience because the last 12 years have been a very lonely existence for me, as I feel like this mystery illness robbed me of my 20s and 30s.

This is going to be long, so bear with me. In 2013, I had a few months of really bad constipation. No matter what I tried, it never seemed to help me go as normal. Then, in December of 2013, I had a root canal. I remember after the visit feeling as if I had a cold. I put it down to the time of year. Not long after that, I found out I was pregnant.

During the pregnancy, I felt very off. Overhead lights in stores looked really bright to me, and I just felt unwell in general. I assumed it might be normal, as I had never been pregnant before. A few weeks later, I miscarried, and more symptoms started popping up. From there, I went down a rabbit hole. I ended up having the tooth with a root canal removed, thinking it might fix my issues. Unfortunately, it did not.

Throughout the years, I received the diagnosis of mold and lyme. Some doctors said it wasn't Lyme and was mold, while others said it was mold and wasn't lyme. I did treatment for both, with no improvement in symptoms. Due to money, I haven't really sought out other help because a lot of doctors are so expensive, but I have basically lived with this mystery illness for all of these years with no hope or answers. Some days, I am convinced I am slowly dying and will never ever be the same again. Heck, even if I got 60-70 percent better at this point, I would be happy. Here comes the laundry list of symptoms, which has gotten longer over the years:

Constant brain fog. It is 24/7. It never goes. It feels like how you feel when you are drunk. Just not fully in control and a bit slowed down. My head never feels clear, just constantly toxic. Light sensitivity, Terrible migraines, A swaying sensation (gets worse with more vigorous movement), and Awful gut issues. Constipation, bloating, stomach pains, acid reflux, stabbing sensations all over the body. They really hurt. I also get burning sensations and pins and needles all over my Hands/feet/calves, cramp really badly, as well as twitching all over. Also quite a bit of leg pain. Dry eyes and mouth, muscle and joint aches Little itchy bumps - often come up after I have eaten something that my body doesn't seem to like Hair loss Nausea Sweats Up and down temp (99.5 to normal range) Excessive thirst that never feels satisfied Frequent urination Painful periods Numbness Knuckles can turn red with exertion, vertigo, tiredness, sometimes I wake up feeling panicked with heart beating fast Palpations

That's all I can think of right now, but I am sure there are more symptoms. Thank you to anyone reading this.

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This is an older post. I hope by now you have been helped.

To me, a Rheumatologist would be the best way to start. Also, a neurologist.
Sounds like autoimmune issues, fibromyalgia, and/or neurological problems.

Fibromyalgia causes many of your symptoms like irritable bowl syndrome, brain fog, pain just about everywhere, however you have more.

Different types of Vasculitis can cause your symptoms. A Rheumatologist is an expert in many different types of diseases.

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52 yo male here. I to have had many of these strange issues as well since 2021 ( almost 5 years) I also have a root canal in 2019 that I had removed in 2022. Also July of 2021 3 teeth were filled on top that turned black from oxidative stress. I truly believe there is a connection there since my life flipped upside down in about 2-3 weeks after that. Dentist doesn’t believe it is mercury poisoning or heavy metal issue but I beg to differ. I have seen once now a NP Doc who ran biometrics on me and said I have liver and blood flukes, heavy metal issue and heavy radiation poison in my body. So far I have been working on parasites with tinctures binders and acupuncture. I also have a hiatal hernia which I am seeing a chiropractor for as well to push my diaphragm down. Anyways as you can tell I went the natural route since I don’t trust doctors anymore. I feel like I will never fully get better cause I can’t find the root cause issue. One thing you pointed out is palpitations. I have a lot of those too. I am searching high and low to find others that share my unusual complaints to get it figured out. Not sure how we can talk again or not but would like to.

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Sounds very much to me like fibromyalgia. That being said there's not much help for us out there with fibromyalgia. We suffer daily, usually in silence as nobody wants to hear us.

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