Active discussions

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
New posts on this thread. Refresh page
Original poster
BeDearFox · 18/02/2025 13:37

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

OP posts:
Feelingleftoutagain · 04/02/2025 16:49

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

MewithME · 04/02/2025 16:44

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.

ME/CFS Symptoms and diagnosis - The ME Association

ME/CFS: Long Covid: Key symptoms that should all be present […]

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

RoastDinnerSmellsNice · 04/02/2025 16:10

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.

Original poster
BeDearFox · 04/02/2025 16:07

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

OP posts:
OhBow · 04/02/2025 09:13

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)?

Puppupandaway · 04/02/2025 08:51

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

Whammyyammy · 03/02/2025 22:09

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

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

bakebeans · 03/02/2025 21:54

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,

RoastDinnerSmellsNice · 03/02/2025 21:19

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?

BlackeyedSusan · 03/02/2025 21:09

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

Original poster
BeDearFox · 03/02/2025 20:57

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

OP posts:
CleverButScatty · 03/02/2025 20:12

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.

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

OhBow · 03/02/2025 18:50

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)

Apileofballyhoo · 03/02/2025 18:44

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

NeverEverOhNo · 03/02/2025 18:38

Tuberculosis?

MewithME · 03/02/2025 18:34

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.

Nursemumma92 · 03/02/2025 18:26

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.

Marilyn17 · 03/02/2025 18:20

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.

GinAndGooseberries · 03/02/2025 18:19

BeDearFox · 03/02/2025 16:59

im 36 my periods are still regular

Show quote history

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

SerenStarEtoile · 03/02/2025 18:19

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.

Marilyn17 · 03/02/2025 18:18

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.

Silvers11 · 03/02/2025 18:11

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?

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

JasmineAllen · 03/02/2025 18:04

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?

PeloMom · 03/02/2025 17:55

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!

Swipe left for the next trending thread