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

Posted by sandy1234 @sandy1234, Aug 12 6:26pm

Hi there,
I was a fit and healthy 19 year old, when I was struck with immense nausea and upper abdominal pain, bloating and extreme fatigue to the point where I'm bed bound, and weak legs, which I can only describe as feeling as though they've been filled with concrete.

As the years have progressed, I now have heat intolerance, lesions on my scalp, my heart rate goes up over 40 beats per minute when I go from seated to standing, and yellow bruises that seem to appear on my legs for no apparent reason, and I often wake in the night with a knawing pain in my stomach like I've never eaten before.

I have seen a gastroenterologists who have ruled out crohns disease, IBS, gastroparesis, inflammation in the gut and food intolerances and have discharged me, saying there's nothing more they can do for me.

I'm at my wit's end, and have spent almost four years bed bound. No anti nausea medication helps at all, and the only medication I'm on is sleeping tablets to sleep through the pain at night, although it still wakes me during the night.
I have attached pics of the scalp lesions.
If anyone has any clue as to what this could be I would really appreciate some help as I'll be turning 23 this year, fell ill when I was 19 and just want some kind of quality of life back. Thank you so much, in advance!

Interested in more discussions like this? Go to the Digestive Health group.

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.

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

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@bigd6573

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.

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

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@lengel

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

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

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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.

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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.

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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.

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@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.

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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.

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@astaingegerdm

@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.

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Thanks for the reply. So sorry to hear you're suffering too. At the start I lost a huge amount of weight, about 2.5 stone, so I was put on liquid nutrition drinks, which I still take and have gained weight.

I'm in the UK, and the last time I saw a gastro was 2 years ago. I made a complaint against the hospital as they took a year to order a gastroparesis breath test, with no appointments in between, so now they say there's nothing more they can do for me.
I've already exhausted any funds I had going private a couple of years ago, which was just online appointments during Covid, in which the Dr said I could possibly have multisystem dysautonomia, then through them I purchased a parasym to stimulate the vagus nerve, which did nothing. He also prescribed tablets for gastroparesis, not knowing I didn't have it, which led to awful body tremors, diarrhea, and pain.

I did wonder about autoimmune diseases, especially lupus, but not sure how I'd get tested for them when I have no doctor?
Also,.I did have a test for gut inflammation, but it came back negative.

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@emmakup

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.

Jump to this post

So sorry you're going through this. I know I've had a pancreatic elastase test which came back negative, but I just don't know at this point. It feels as though I'm no closer to a diagnosis than I was nearly 4 years ago. Do you experience constant nausea or just during the episodes?

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