Undiagnosed for nearly 4 years, need some quality of life back!

Sandy, Oh my! I don't have a direction for you; but, my heart really goes out to you. I will be praying for you and hoping that you find answers soon. I will be following you on your journey. I'm sorry if this doesn't help you much; but know that people care. I copied your post to share with medical professionals i know as well. If i get some direction for you, i will pass it on.

Have they tested you for Lyme disease? If not, your symptoms sound similar to those I have heard of from friends who had it.

Thanks so much, it just feels as though the doctors have given up, so any input would be greatly appreciated.

They haven't, but I've never had a tick bite as far as I'm aware.

Many people don’t even know they’ve been bitten. Deer ticks are tiny. If you can remember hiking or walking through a woods before you got sick, it would be worth asking for the tests.

I have thyroid issues so I read various online thyroid support group sites not infrequently. Your bed boundness resonates with what I have read over the years. Those who have been hit the hardest with thyroid disorders report this repeatedly. For this reason I can't help but wonder when your thyroid levels have been checked last(?). I am no doctor believe me but think the bed boundness alone might merit up to date thyroid lab checks.

Thanks for the reply. I have had my thyroid function tested a few times over the past few years. I've had a test for diabetes, Addison's disease, gut inflammation, calprotectin, kidney function, h pylori. I've also had a head CT scan, mrcp and gastroparesis breath test, and a pilcam which showed healing ulcers and lymphangiectasia, though my consultant assured me that this is a common finding, and won't be causing my symptoms as it's just a single one.
I also had a heart rate variability test which showed I have very little parasympathetic activity.

@sandy1234, I second the information that @lengel shared about Lyme disease. If you live or visited a high-risk area, it might be worth looking into. Often people don't see the tick or the bite.

Hello Sandy, first of all, I'm so sorry that you are going through this. I have been through a similar past few years some of the symptoms seem familiar although not all of them, the symptoms that resonate with me are; immense nausea, extreme upper abdominal pain, bloating, fast heart rate and extreme fatigue.

I started nearly three years ago (I'm now 29) with my pains they thought it was my gallbladder so they took it out and the pains multiplied, they were more frequent and painful. Like you, I had hundreds of tests, MRI, CAT scans, intestinal transition tests, gastroscopy etc. They could not find anything until a month ago, they were testing me for celiac disease so they took a stool sample, in the test it showed up that I had pancreatic insufficiency, we are now doing more tests to try to find out exactly why my pancreas isn't functioning correctly, however, there is a type of pancreatitis that does not show up in a lot of tests, maybe you could ask your doctor for a stool and blood test to check your hepatic enzymes and pancreatic enzymes, as I said before all of the symptoms don't resonate with me but a lot of them do.

My pains appear mostly in the middle of the night, but I can have sometimes 10 episodes a day, it normally happens when my stomach is empty. If you have any questions feel free to ask, wishing you the best.

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@sandy1234 - I recognize some of your symptoms.
I have nausea, feeling full, bloating (always), exhaustion and an increase in heart rate with minor effort. I also have on and off mid and lower abdominal pain. I don’t have pain when I sleep.
I think I have a relapse of gastrointestinal autoimmune inflammation, but it has not been confirmed. I’m trying to get a GI appointment.
I had similar problems about 10 years ago- always better if I for some reason was given prednisone. Eventually, I was treated with immunosuppressive meds and recovered for a few years until 2-3 years ago.
It sounds as if most of your symptoms are GI related. Fatigue and exhaustion are common with autoimmune diseases.
How long ago did you see a gastroenterologist?
There must be some explanation for your persistent nausea, pain and bloating.
Has your weight changed?
Has anyone offered trials of any medications- including prednisone- to see if you feel better?
In my case I pointed out to the doctors what I had noticed when given prednisone for my asthma- I felt better and bloating subsided. That’s probably one of the reasons they tried me on Budesonide by mouth- it’s given for intestinal inflammation.