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AIBU?

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Original poster

Please help me - mystery illness

42 replies

BeDearFox · 03/02/2025 16:48

I’ve been so unwell for over a year now, and I’m only getting worse. It mainly started as fatigue, loss of appetite and lower back pain after a virus. My list of symptoms now

nausea
loss of appetite
2 stone weight loss
chest pain
itchy skin
burning skin
chills all day
hot and sweats at night
temp disregulation
extreme fatigue no matter how much sleep
Lower back pain
cough

I’ve had an endoscopy, colonoscopy, chest to pelvis ct scan, brain mri, blood tests, seen a gastroenterologist and haematologist. Nothing. Doctors are more or less saying stop coming. Only thing it showed was high platelets which improved.

ive lost my job, nearly my kids, my 13 year relationship, friends.. my life. And I’ve no answers. I’m in bed crying as I type. What’s wrong with me?

. I

Please help me - mystery illness
Please help me - mystery illness
OP posts:
DoNoTakeNo · 03/02/2025 17:39

Have you had any blood tests for endocrine conditions?
Thyroid (hyper nor hypo) but also some of the more complex & rarer ones - Addisons disease springs to mind. Depending on the cause of them, there may be no indication in more general bloods so you'd have to ask for them specifically.
Hyperthyroidism can be tested via the GP (tho usually treated by an Endocrinologist) and cortisol needs to be via a consultant.
Good luck, please keep pushing for a diagnosis x

Kikibee · 03/02/2025 17:36

Find thattillyrose on instagram, she was unwell for years with no diagnosis, you remind me of her, see if any of your symptoms are like hers, it might be worth a try

Mosaic123 · 03/02/2025 17:33

Have you been anywhere in the world thst has malaria?

My father was diagnosed 9 months after visiting an area abroad. He says he took the anti malaria drugs at the right time.

Original poster
BeDearFox · 03/02/2025 17:31

No they haven’t mentioned TB. Basically keep blaming it on MH/anxiety and sending me on my way.

do you think the majority of sinister things eg cancer have been ruled out?

OP posts:
Mushmemellow · 03/02/2025 17:29

SeaToSki · 03/02/2025 17:25

Have they tested you for tuberculosis?

This is a good point too. Cases are really rising now.

Mushmemellow · 03/02/2025 17:28

Agree with PP - Those symptoms are very indicative of several autoimmune diseases. You need to be your own advocate here, as hard as it is and keep going back till somebody listens to you.

SeaToSki · 03/02/2025 17:25

Have they tested you for tuberculosis?

OhBow · 03/02/2025 17:24

I was just about to write everything MissisBoote said - sounds post-viral, bit similar to fibromyalgia?

Sounds awful and I really hope you get to the bottom of it.

Chroniclesofstress · 03/02/2025 17:23

Get an 'active' B12 and Folate test done privately as the NHS only test for 'serum' B12 and Folate levels and these don't give the full picture. B12 deficiency can make you feel terrible. One thing to be clear, you need to be 3-4 months clear of vitamin B supplements (multivitamins etc) to get an accurate test.

Also get Vitamin D, full thyroid panel and full iron panel checked.

(Companies like Thriva, Medi-checks etc all provide private tests that you can do at home and post back, with results in a couple of days.

DollydaydreamTheThird · 03/02/2025 17:14

BeDearFox · 03/02/2025 17:10

No I haven’t x

Show quote history

I second this poster's opinion on autoimmune see a rheumatologist. Also could it be long COVID?
Hope you get some answers soon OP. It sounds like you are going through the ringer. Xx

PaintDecisions · 03/02/2025 17:13

nausea
loss of appetite
2 stone weight loss
itchy skin
burning skin
chills all day
hot and sweats at night
temp disregulation
extreme fatigue no matter how much sleep

All sound like classic perimenopause symptoms to me. I know you're 36, but your regular periods don't necessarily indicate your body isn't changing. HRT would be an easy option to try.

Original poster
BeDearFox · 03/02/2025 17:10

rainbowsparkle28 · 03/02/2025 17:01

I would be looking at auto-immune conditions - have you been seen by a rheumatologist and / or had your ANCA tested? (Vasculitis)?
I would also be looking at hormone levels.

Edited

No I haven’t x

OP posts:
MissisBoote · 03/02/2025 17:04

Probably virus triggered CFS/me. Sympathies as it's an absolute pig of an illness.

Look to reduce inflammation by cutting out dairy/gluten/nightshades for a few weeks and then slowly start to reintroduce them one by one, a week at a time, to see if any of them trigger any side effects.

You need to slow down your nervous system so look at yogic breathing, vague nerve stimulation etc

rainbowsparkle28 · 03/02/2025 17:01

I would be looking at auto-immune conditions - have you been seen by a rheumatologist and / or had your ANCA tested? (Vasculitis)?
I would also be looking at hormone levels.

Original poster
BeDearFox · 03/02/2025 16:59

Querty123456 · 03/02/2025 16:58

Menopause?

im 36 my periods are still regular

OP posts:
Querty123456 · 03/02/2025 16:58

Menopause?

Original poster
BeDearFox · 03/02/2025 16:57

Night sweats feeling very hot at night

OP posts:
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