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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How I'm Doing - Not too Great Actually...

My fatigue and pain levels have been a lot worse. I dragged myself into see a doctor, the only one I could see was a new person, but hey they turned out to be really competent and didn't lecture me about my 'imagined illness' or something which I've found so demoralizing, embarrassing and sad that I haven't been back to the doctor in awhile.

A few new things have been going on, I'm having trouble eating because of nausea, but there appears to be nothing wrong with my stomach thus far and I had a negative h.pylori test and the doctor said it didn't sound like gastritis or ulcers.

I have fevers and my glands in my neck and armpits are very swollen. At the docs she was very worried about the adenoids being so swollen. My fever at the doctors was 99, that's what it usually is, it goes up and down, sometimes it vanishes for a bit.

I have trouble controlling my body temperature.

I have pain in the middle of my back like a butter knife is wedged in there very hard.

The fatigue has reached an all new level where I can't do most of the basic things I used to at least do and have to rely on my family more and more.

I have a lot of abdominal pain and although I used to run - I have trouble walking too far now. I told the doctor I thought I had a hernia because I have a spot on my left side that hurts really bad. She said that it was my ovary possibly.

Usually doctors send me away with the talk about, "you've reached 40, these things happen" -- but she actually scheduled me for a lot of exams.

I'm pretty scared though. I always thought I would "snap out of it" -- wake up one day and my diet and exercise obsession would have paid off and I could be a normal person again.

I did some Yoga today and it was so exhausting (and it wasn't hard Yoga!) that I slept for over two hours this afternoon.

Oh, and I'm having trouble breathing sometimes now.

Eh' symptoms are all over the place, so don't know if anything will be found or not. I kinda have this gut feeling though that this isn't good. That maybe I'm kinda screwed but I'm worried about not being around to nag at my family.

Tomorrow is an echocardio on my heart, ultrasound and some x-rays. All blood work, thyroid blood work returned normal.

Any ideas guys on what's wrong with me? It's such a weird symptom grouping.

Guess I'm kinda scared it's cancer again, because I had that once before.

Send me some good mojo guys. I need all the luck I can get.


Most of the exams went well today but had some unusual stuff show up with 3 heart valves on the echo. I just received test results though online and will have to talk to my doctor about what they mean. My heart size is okay though and everything else seems normal.
I'm so glad you had a positive experience with this new doctor. It's so hard to say what could be going on but hopefully the answers they find through the exams and testing and any resulting treatment plans will be helpful to you.
Okay last test revealed I had tumors in my abdomen and probably at least one very large one. They are pushing on my bladder and my intestines and that was causing me some of my GI issues and the pain. More tests ahead, more doctors, hopefully I can talk to a surgeon and get this taken care of!
" I always thought I would "snap out of it" -- wake up one day and my diet and exercise obsession would have paid off "

If you have ME/CFS trying to exercise yourself back to good health unfortunately may of made you worst. Exercise can have bad impacts on ME/CFS patients and this has even been shown with studies. eg oxygen in muscles etc in us can drop not improve from exercise.

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