AIBU to ask people on the internet to diagnose me?

[WhenIWasAYoungWarthog]

Well, obviously I am but I’m fed up of feeling shit and no one knowing what the problem is.

I’m mid 30’s and was very sporty until a couple of years ago when I first started having symptoms. I’m constantly exhausted and out of breath. To the point we’ve had to move my bedroom into a downstairs room as I need to sit down for at least 5 minutes to catch my breath after going up a flight of stairs. I sleep 10 hours a night and need at least a 2 hour nap in the day or I start vomiting and fainting. I no longer drive as I don’t feel safe after I fell asleep at the wheel last year (driving a route I knew, having had plenty of sleep).

I have no appetite and I’m constantly nauseous. I vomit at some point most days and around a year ago started vomiting blood. An endoscopy showed two stomach ulcers but no H Pylori. A further endoscopy after I’d been treated with omeprazole showed ulcers had gone but there was still inflammation.

I’ve had iron infusions as I’ve been anemic 4 times in the last 2 years. I eat as healthily as I can and take iron supplements but still seem to have dropping iron levels. I’ve also had a colonoscopy which showed nothing unusual. Brain scans as history of Brain Cancer in my family, nothing unusual there. Lung function tests, again nothing unusual. Blood pressure and blood tests all normal too.

My GP is at a loss as to what the matter is and has offered to refer me to a pain management clinic and put me on AD’s . I went private and they repeated all the tests again and they can’t make a diagnosis either. One doctor asked me if I wanted it to be an autoimmune disease.

I don’t want it to be anything at all. I just want to be able to have my life back. I can’t do anything. Dh is working crazy hours to support us, I can’t claim any kind of benefit as no one knows what’s wrong with me. My little 2yo has to go to nursery 3 days a week as I don’t have the energy to look after him.

Has anyone got any suggestions at all? Or, maybe someone’s had something similar and cured it by hypnosis or something (trying to be optimistic!)

What are your blood count numbers?

What are your periods like?

I would try some other antidepressants. Depression can have serious physical symptoms. It doesn't stop you exploring the other issues people have suggested. And it might actually make you feel a lot better.

Has coeliac disease been ruled out? Could cause the nausea, iron malabsorption, brain fog.

Another for coeliac disease. Usual route for diagnosis is blood test followed by biopsy (endoscopy).

Def check they have run a full thyroid with antibodies too. It fits all the symptoms and often doesnt show on the basic test. You have to run everything including the antibodies. You can do it privately using medi checks if you want to not be bothered with another Dr visit.
Then get your heart checked. What is your resting pulse rate. It should be 50 or 60. If it is lower, take that info to the doctor

It sounds like CFS in many respects...the only other thing that came to mind after reading ‘brain fog’ was fibromyalgia.

Any possibility of you being bitten by a tick/Lyme disease?

www.nhlbi.nih.gov/health-topics/pernicious-anemia

is my first thought, then other autoimmune followed by Fibro and / or CFS

I haven’t been tested for coeliac as I don’t eat gluten due to dc1 having a wheat and gluten intolerance. It’s easier for us all to eat the same.

happy I was taking citilapram but it made me feel even more sick and I rarely kept it down. Can I really be depressed without knowing it though? I’ve been less happy for the last couple of years due to my mystery illness but I’m still not unhappy. My GP seemed determined I was depressed from our first appointment. I have struggled with depression in my early 20’s and AD’s and exercise really did help me then. I also feel so completely different to how I did then and I’m as certain as I can be that I’m not depressed at all.

I will ask doctor about B12. I had seen that come up in searches I’ve done for my symptoms but just assumed it was tested as standard.

I used to have really heavy periods. Doctor thought this may have been why I would get anemic so I had coil fitted. I now get occasional spotting but have still had to have 2 iron infusions since it’s been fitted.

Chronic fatigue/ME/Fibromyalgia whatever you want to call it. I have it. It sucks ass. Changes your life completely. BUT if you look after yourself and learn how to pace yourself you will find a new way of life emerges. Join fb support groups. They will help you and answer your questions xx

I don't know if you are depressed but lethargy and general malaise is certainly common with depression. I'm not a doctor though.

But if they said take these tablets for a heart condition you'll feel better then 99% of people will. But when a doctor suggests a antidepressant then people get all funny and won't take them. Did you go back and discuss that the AD made you feel sick and try another one?

Are you over weight ? Do you manage to get out to places on the days your DC are with out. It is draining being on high alert looking after young children.

I would personally say my brain is in a fog still and I only have one 2 year old who doesn't sleep well. I breast fed until recently so I found that really draining physically.

I really hope you find the answer, it could just be trial and error.

I also thought of ME or fibromyalga. I would keep pushing for more tests. As others have said, some tests just skim the basics, you need more in-depth specific tests.

Also I would ask for copies of all your blood results (you are entitled to them)and post them here together with the reference ranges.

B12 deficiency is often misdiagnosed for years as CFS/ME or even MS.
Coeliac disease (and other digestive problems) can cause B12 deficiency or it can be caused by pernicious anaemia, alcoholism, bowel surgery, use of nitrous oxide (gas and air), vegan diet etc etc.

Id also ask doctor to test for intrinsic factor. You can be low on B12, but if you are lacking intrinsic factor, no amount of B12 taken by mouth will help, your gut just kills it, you need injections of B12. It's called pernicious anemia, it's an autoimmune disease. Being short of breath, feeling shaky, no amount of sleep feeling enough? All symptoms i experienced before I was diagnosed. It also runs in family's (sister was diagnosed following my diagnosis, DD currently awaiting blood tests for same). It usually starts in your 40s. Good luck

You have your answer- iron deficiency anaemia. You know what is likely causing it (stomach ulcers and inflammation). Not periods. Not coeliac (you don’t eat gluten). Are you under stress/drink alcohol/smoke/on medsetc to increase your risk of peptic ulcers? There are other very rare conditions that do, but I’d start here.

Who did you see privately btw? A gastroenterologist?

And finally- the fact you are still feeling nauseous suggests to me the ulcers may still be there. When was your last endoscopy? Are you losing weight?

Could it be the coil? I know some people can have quite severe reactions to progesterone.

Has anyone mentioned POT's?

www.potsuk.org/

happy I told the doctor I was stopping taking AD’s as I could rarely keep them down and didn’t feel I was depressed. She was keen for me to try another type of AD’s but I pushed for other tests to be done first.

I’m 5’9” and was 10stone before I got pregnant with dc2. I’m now 8st10lbs so slightly underweight according to BMI. I rarely manage to get out with dc’s. I take them to their swimming and trampolining lessons as I can watch sitting down from the side. I can do the park as long as I’m with dh/dm/a friend as I can only sit on the bench and supervise. I can’t pick them up if they fall over, put them on a swing and push them, kick a ball with them or anything like that. It’s about 500m along a flat pavement to the park. I have to stop at least 3 times for about 3 minutes at a time to catch my breath.

This time 3 years ago I was running 30k and swimming 10k in the sea each week .

Have a Google of Addison's disease. Faintness, shortness of breath, vomiting, fatigue, brain fog, misdiagnosed with depression, all classic symptoms. Has your skin gone darker at all? Have you lost weight?

Iron deficiency anaemia is always taken seriously, especially in someone also losing weight, when not caused by periods. Can you answer my questions above- who did you see privately? Do you smoke/drink alcohol/take any other meds?

Really ianbeales? My GP has just sent me straight over to the hospital each time my results have come back as being anemic for an infusion. She doesn’t seem particularly concerned about the anemia at all.

The private doctor was a gastroenterologist, referred me to have another endoscopy, colonoscopy and stool sample. All fine apart from inflamed stomach lining.

I don’t smoke or drink. I used to drink but never a lot and have never smoked. The only drugs I take are omeprazole and then supplements which doctors are aware of. The private gastroenterologist kept trying to suggest I was taking ibuprofen and didn’t really seem convinced that I wasn’t. Afterwards I was googling and it seems to suggest that ibuprofen can strip your stomach which can lead to inflammation and ulcers. But why the hell would I lie about taking ibuprofen?!