E.ster, I'm so sorry that you have been so sick for so long. It sounds to me like chronic infections. Lyme disease testing is notoriously unreliable, so even if you've been tested for it and the result was "negative", that by no means rules out the possibility of Lyme. Try to see a Lyme Literate doctor or naturopath if you can.
Have you had an endoscopy? See if you have Celiac Disease or not. If you do, that could explain a lot of your symptoms. If you don't have Celiac Disease, you could still have non-Celiac gluten intolerance, in which case a gluten free trial would be of value.
If you really can't find an answer to your health problems, then please see an occupational therapist. They will help you to live and work with your symptoms, no matter what their cause.
I give all this advice from personal experience. I got Lyme Disease over 3 years ago, which triggered Celiac Disease, and I was only just diagnosed with Celiac and Lyme earlier this year through seeing a Lyme Literate medical and naturopathic doctor. But before my diagnoses, I had been seeing an occupational therapist which was of great help in getting me the job I have now that is paying for my healthcare. I was bedridden before seeing the Occupational Therapist. He was so helpful.
I should also mention that the reason I decided to see a Lyme literate medical doctor (who also studied naturopathy) was because of what happened in a pharmacy about a year ago.
Here is the story:
I was trying to find a skincare product that would help to relieve my highly sensitive, irritated skin. I had tried so many different products over the last couple years that were supposedly "suitable for sensitive skin" and I was getting desperate. There was a lady nearby with the pharmacy uniform on, and my mum called her over to help us. While I was explaining my skin situation to her, she was looking analytically into my eyes. "So which product should I try?" I asked. "Sorry," she said, "do you have a lot of trouble sleeping at night and pain throughout your whole body?" I was taken aback. Most people who looked at me said things like, "you look well" not "you look like you're suffering". I blinked at her. "You have very high cortisol levels," she continued. "Your nervous system is serverely malfunctioning. It's possible you have thyroid issues as a side effect of the high cortisol. Have you been tested for Lupus?"
"H-how did you know?" I stuttered. "How could you tell I'm sick when most people think I'm so healthy, even though I'm suffering from so many symptoms?"
"I'm an iridologist," she replied. "I can do a proper consultation if you like. It's $100." I had to refuse because I couldn't afford it at that stage. I asked if she knew of a good doctor I could see that bulk billed to Medicare. So she referred me to the doctor she sees.
I got treated for adrenal fatigue and referred to a Lyme literate doctor was Lyme Disease testing. Apparently my thyroid levels were fine, but I suspect that I might have been on the lower side of the normal range. I haven't been tested for lupus yet.
You might want to see an iridologist. I always thought it was quackery before my own experience with it.
Conditions: Celiac disease, Fibromyalgia, Chronic Fatigue Syndrome, neuropathic pain, FODMAP intolerances, allergies, anxiety, depression, acid reflux, dermatitis, tinnitus, and more.
Being tested for: Lyme, Lymphoma, Bartonella, thyroid disorders.
Goals: to be an occupational therapist; to explore and change the world. "Reach for the moon; even if you miss, you will land among the stars."