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?

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The weight loss is concerning. Losing weight with ME is likely to be down to lack of energy to cook and eat.

If you are losing weight but eating ok that's something else.

I'm so sorry. It sounds horrendous. Can you change GP ? You need help advocating and keep getting tested until you have an answer.

Tuberculosis?

MCAS is definitely something to look into, and don't dismiss perimenopause.

Just noticed you say it's affected your relationships too OP, would you consider showing your dc this thread so they can see how seriously everyone's taking it, and all the potential diagnoses it could be? (which I hope are giving you ideas, not worrying you)

I would agree if it wasn't for the weight loss.

The weight loss is connected to how much I do (or don’t) eat

So sorry. That's shit. Hope you get answers soon.

So you've lost weight due to literally not eating, ie, not hungry, too tired to prep food, rather than eating normally, but still losing weight OP?

I would agree with another poster. Have they checked you for autoimmune?

Auto immune illnesses usually start following a virus or ‘shock’ such as accident etc.
type 1 diabetes, fibromyalgia, coeliac, rheumatology conditions, thyroid disorder. Chrohns, for example can be tiredness and weight loss and are all autoimmune,

Agree with this. Not just Addisons but could be pituitary gland related.

Also, my friend has just started with many of your symptoms...it's early perimenopause at 36.

You mention your periods are still regular, but are you on the pill or other hormones which create a regular bleed (and could me hiding the start of peri)?

@RoastDinnerSmellsNice exactly that. Some days I don’t eat or drink at all hardly x

Well I'm glad to hear that in a way OP, as losing weight when eating as normal, seems to often be a sign of cancer, so it's good news that the weight loss isn't caused by that.

https://meassociation.org.uk/me-cfs-symptoms-diagnosis/

Have a read of this @BeDearFox

It could be MEcfs but I am not sure from what you say.

Like many things, it could be that some symptoms are something else. Not sure about peri at 36 but not impossible. I think I would still push for further non usual blood tests.

Check for thyroid , underactive and overactive but also get checked for gallstones

I’m so scared as to what it could be. I’m so unwell 24/7 with one of the above symptoms at any given time. The doctors have basically said “we might not ever be able to give you an answer” wtf