I feel so unwell all the time

[Fern2]

I am 34 years old. Work full time. Never had children. And for the past 5-10 years I spend most of the time feeling unwell. Probably about 60-70% of the time, in bouts of up to 5 days at a time.

I have no quality of life anymore and doctors don't listen to me. Sometimes i've read about things and think 'Wow, that could be it!' but then I go to the doctor, have the tests, and apparently all is 'normal'. Some blood tests are so variable that on one occasion, something is off, but the next time, its fine although there's been no treatment.

When I say I feel ill, its a feeling of not being 'with it'. Of having a fuzzy head, tiredness, dizziness. Achy muscles. Exhaustion but i've slept fine. Like when I speak sometimes I know I can't be making much sense at its worst. Nobody has ever said they notice, but I wonder if I come across a bit strange in the way I am, because of how I feel. It seems to be worse at work, when i'm up and walking about the most. I don't have pain as such but I don't have any energy and really have to push myself.

I do suffer from depression but I have reasons for it which is out of my control so a situation depression. I take anti depressants for this and have done for 15 years.

Tested for but don't have:
Thyroid Problems
Vitamin deficiency
Anemia or iron problems
Blood pressure problems
Basic female hormone problems (have a period every month)
Inner ear or balance problems

At this point i'm starting to say I want a brain scan to check there's nothing wrong with it.

Its just confusing that it isn't all the time that I feel so ill but it is more than would be normal. I don't work with any chemicals or anything which would make me have a dizzy feeling.

Have you ever had glandular fever?

Oh OP I am the same and it is fucking horrible. I have had both Chronic Fatigue/ME and currently have Fibromyalgia. Both are hideous. It sounds like ME too me. I did manage to get myself better from that in the main I found out I was intolerant to some food (wheat you bastard) and if I'm pace myself and don't eat any at all I feel generally okayish. I do have 3 kids though so it's hard to rest up enough.

It could be thyroid because there’s a huge scandal about the NHS parameters for thyroid blood tests being designed to suit the Drs who can’t afford to give out the medication.
go private with a thyroid specialist dr just for the tests.
you shouldn’t have to live like this.!

Check for coliac desease

https://www.nhs.uk/conditions/coeliac-disease/

Not that i'm aware

Thanks, but I don't have any of the gut related symptoms. Its all brain and muscles I think

I'd say fibromyalgia. I have this x

Or ME and/or POTS.

Youll have to fight to get any diagnosis for them though.

I was diagnosed recently with Haemochromatosis- you wouldn’t believe the fatigue and general brain fog…

Could it be chronic fatigue syndrome? There is no test for that, it's basically diagnosed by symptoms and process of elimination from other tests. So sorry to hear you're feeling so unwell.

Read up around auto immune diseases. You might find something that rings true for you there.
Good luck! X

I’m going to put this out there - chronic migraine, possibly vestibular. Migraine doesn’t always mean a headache.

I know you've said you've had vitamin levels tested, but have you had B12 levels checked out specifically? Those symptoms can arise from a deficiency.

Get yourself tested for autoimmune disorders. There’s many of them, but you’ll get yes or no as first results followed by a homing in on the exact disorder.

Could be ME/CFS which still doesn't turn up on any test, it is diagnosed as a set of symptoms only. Sadly anything complex and not testable, especially in a woman, does tend to get written off by doctors. Have you suggested it to a GP? You may have to keep going until you find one who will consider it, sadly, but it sounds very like. My mum has had it for most of my life and the symptoms sound like they could be ME/CFS.

Keep looking for answers, and good luck.

I had glandular fever and ended up with cfs

Also currently have b12 deficiency
And raised ca125
& feretin issues

Im in my 30s too

If i was you id ask them to test 4
Previous ebv / glandular fever
Current ebv / glandular fever
Feretin levels

B12 levels
Ca125 blood test
Qfit poo / poop test - any bowel cancer history in family? - i had polyps removed.
Qfit poo test is quick and easy

Do you have health anxiety?

I was going to say the same!
I felt shit for years for days on end. Fuzzy head, the kind you get when you haven't quite had enough sleep. Lights and sound being too intense. Can't think straight.
I always thought a migraine was bad headache, flashing lights/aura.
There are so many other symptoms of a migraine.
The headache usually isn't the worst part for me and I don't get any visual disturbances.
When I started taking sumatriptan it was a game changer! I feel so much better.

When did this start? Was it after a short illness?

I had this in my 20s after a 24 hour tummy bug. I had every test going and it didn't find much. I had to really pace myself with energy and time spent socialising etc. I just got used to a smaller life. At my worst point I needed 8 weeks off work as I couldn't get out of bed to get there.

It slowly lifted over the course of about a year of gradual building back up. I'd have good weeks and bad weeks.

20 years later when there was all the talk of long Covid in the pandemic I realised I'd had some sort of post viral condition.

It could be trivial. I have a milk allergy/intolerance. When I have too much dairy I have a thick head, headaches, aching, exhaustion, my body doesn't like exertion eg extreme breathlessness upon walking 2 flights of stairs). I feel just awful

To add.... Obviously my intolerance can't be tested for.

Some interesting points from everyone to consider. I think I had an antibodies test 10 years ago when this all started and it was 'negative'.

One thing to note, is that I realise sometimes, that taking an aspirin with paracetamol sometimes makes me feel slightly better.

Request assessment for ME

I was much like you. All bloods came back normal. Auto immune panel all negative. Etc etc. Then I read about chronic migraine and it all fell into place.

The fact that you’re getting it in kind of 5 day cycles and the asprin and paracetomol makes you feel better is really interesting. I get 4/5 day migraines, rarely a headache, dizziness, nausea, feeling weak, all over muscle aches worse in neck, v tired, numb feeling down left hand side. My go to is aspirin & paracetamol. Also anti-sickness prochlorperazine (which is also used for vertigo). If that doesn’t knock it out I take a triptan (you can get them otc). I used to get them chronically but I take a preventative now (lamotrigine) so they’re only hormonal, I’m line with oestrogen fluctuations in the menstrual cycle.

You just don’t consider migraine because lack of headache, but migraine is a serious neurological condition, that is debilitating. It really does make you feel so unwell, and especially if they are ones that come back daily for a while.

Might be worth trying a triptan and seeing? If it does, definitely see GP as there’s so much help for migraines. Look at the Nice guidelines as you could get a referral to neurology who are so much more knowledgeable on this.

It might not be, but does resonate. Either way I hope you get some relief soon!