Please help me - mystery illness

[BeDearFox]

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

Night sweats feeling very hot at night

Menopause?

im 36 my periods are still regular

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.

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

No I haven’t x

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.

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

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.

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.

Have they tested you for tuberculosis?

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.

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

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?

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.

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

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

36 was the magic age for me too for all sorts of weird aches and conditions to start coming out. Hope you have it figured out soon!

I second checking for autoimmunity. You have many symptoms of undiagnosed Addisons Disease which won't show up on a regular blood panel.
If I were you'd I'd ask for your GP to check your sodium and potassium levels. If you have Addisons your sodium will be very low and your potassium high. Then you need a morning cortisol test.
It's a very insidious illness and can develop over months/years.
Do you crave salt? Does your skin have a healthy brown glow?

With all those tests - it does sound like cancer would have been picked up if that was the cause. I agree with others, I think you need more detailed blood tests for specific things

High platelets can be a sign of infection or inflammation - but as they have come down, it would suggest an infection has cleared up. Maybe your symptoms are as a result of whatever the infection was, like ME or long Covid? Sorry, I don't know

Apologies if already mentioned as not RTFT but has your poo been tested? I had similar symptoms for months, going hot and cold, aches and pains, feeling tired all the time. It got to the stage where I couldn't walk down the road one day to move my car I was so tired and aching all over. It turned out I had Hpylori which was diagnosed via a simple blood test and was treated very quickly with antibiotics. I also had an ulcer which was causing the aches and pains and I was given PPI meds while it healed.

Hi OP

It does sound as if autoimmune problems might be involved.

A friend has recently been prescribed Semaglutide in tablet form as a “micro dose” because there is evidence that it can calm that kind of inflammation. Worth reading up about? There’s a good interview with a doctor on Diary of a CEO (YouTube) which gives greater info.

Hope you feel better soon.

I was 33 with regular ish periods when I was diagnosed with premature ovarian insufficiency/failure.

Apologies, it wasn't a blood test it was a stool (poo) test. You can actually buy them online and do them at home with immediate results.

My SIL had symptoms like yours for a couple of years after catching covid. She has been diagnosed with Mast Cell Activation Syndrome. She saw a rheumatologist then an immunologist before getting diagnosed and feels a lot better since starting medication. Not sure if you have this but there are similarities and it's worth mentioning.