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.

I spent the first 2 years of my daughter’s life and my entire pregnancy thinking there is something seriously wrong with my brain! But it was impossible, no matter what I said I was met with the same thing over 3 years, it’s hormones, anxiety, baby brain. I started to think I was crazy. I was losing my memory, and the “panic attacks”, I wasn’t an anxious person an they’d just happen randomly, I’d sweat and have a headache afterwards, and forget what I was doing once it happened.
i needed an operation on my nose and just before being wheeled into surgery I had a “panic attack”, to look at me nothing is happening, I’m just sat there not talking or appearing any different. The anaesthetist told me I had a heart condition and the operation needed to be cancelled and referred to cardiology. So I explained…. I get this thing, it last 30-60 seconds, could it be that? I was referred to endocrinology to check for thyroid cancer and adrenal release syndrome. Whist at that appointment I was told again it was probably anxiety, and perhaps my heart was effected by this, but they’d refer me for bloods for peace of mind. Whilst walking to have my bloods taken I had a seizure! It kept happening so I was put in a coma. Woke up the next day to a neurologist, you have epilepsy. I cried so hard, with happiness! It was the not knowing that was the real issue. Until I had generalised seizures it looked like it was all in my head, but it turned out to be a neurological issue, not a brain psychological one.
the letters from the hospital are hilarious, one says I’ve reassured the patient it’s likely anxiety and referred for some blood tests for peace of mind, the next letter written a day later says patient went into status whilst waiting for bloods!
it also says I was relieved to finally have a diagnosis.
it’d so hard when people can’t “see” what’s wrong, an you don’t know, bloods etc come back ok, but ultimately you know there’s something not quite right. It’s exhausting. I am now on lamotrigine, still have seizures but not as many, definitely helped with auras and headaches.
you may know the answer now but if you don’t I hope you find it soon xxx

Coeliac disease doesn’t have to include stomach issues. In my family it manifests as exhaustion, dizziness, headaches and muscle pain. Definitely worth ruling it out

First thing I thought was, do you have a gas boiler and have you got a CO monitor that works.
Then I thought about checking for autoimmune diseases of any or all kinds.
Then Lyme disease - caused by a tick bite that could have happened years ago. Ask to be checked.
Then I wondered if you had travelled abroad at some point years ago and possibly picked up a parasite.
These are all things to consider and google the signs and symptoms.
I hope you are able to get some help.

Do you think it could be the anti depressant ?

.

Have you googled all the side effects of your meds?

Try taking a Zrytec a day for a month. It was suggested to me by a chemist and it helped. I possibly had a lot of triggering allergies.
I hope you feel better. It sounds awful

Could sleep apnea be causing you to not sleep properly and make you ill during the day?

Have you tried a fitness watch that could monitor you whilst you are asleep?

Air pollution?

Is anyone with you during the night OP? I’m wondering if you’re having nocturnal seizures. I only realised what was wrong and went to gp for tests after my then boyfriend witnessed one.

Your description of when you feel ill could have been me writing about my epilepsy.

Other people have suggested things too but this is one you may want to check out.

Hi, its been a while, but have recently been feeling unwell again.

I do wonder about sleep problems, I am long term single, so nobody ever witnesses me sleep. Although years ago, I had an ex boyfriend tell me I would grind my teeth in my sleep? It was during a stressful period of time, so I don't know whether I still do this. The dentist doesn't seem to think there is evidence of it happening now though.

Interestingly, I recently had my blood pressure tested at my GPs and was told it was fairly low. But it fluctuates between low and normal every time I get it tested. But I do sometimes wonder if my blood pressure could be the cause of some of my symptoms, but it doesn't explain the times it has been normal despite me feeling ill.

I plan to make another appointment to see what else can be explored, I sometimes wonder if it is hormonal and cycle related based on the fact the ill feeling comes in waves.

When did you have covid?

Everything you describe is a known feature of long covid, and it might be worth asking your GP to refer you to your local long covid service

Have you had b12 levels tested ?

Def second the coeliac test too

What has helped me was
Losing weight
Not eating meat
Not drinking alcohol
Having kinesiology to see which vitamins I needed
Taking said vitamins
Exercising regularly

Also the nhs don't test for autoimmune thyroid disease routinely so maybe try and get that checked .

I spent some years like this from mid 30s.

Am mostly perkier now. I'm still not sure why improved, but I've been taking vitamin D and Bs along with other supplements.

I think one factor was getting very low in D levels. Also was knackered and had no recovery time.

Having babies and working really takes it out of you. There doesn't seem to have been more wrong with me than grinding exhaustion and low vitamin levels. At least I'm still hoping not.

Able to exercise more now, which makes me feel much better. I still get very tired and have to be careful not to overdo it, but I'm spending less time feeling actively poorly.

Hi @Fern2 i came to write a very similar post to you and saw you what you’ve been experiencing the last few months - just wanted to see how you were getting on? I feel ill all the time and have very similar symptoms to the ones you describe, every time I slightly overdo it with a busy period I am paying the price for weeks. I just attributed it to having a busy job and two young children but have started to look at the bigger picture with my symptoms and realise it’s not normal. I hope you’re getting some answers.

Carbon monoxide poisoning?

I assume you've been tried for having M.E or chronic fatigue...it's what I have sometimes comes on no reason can last for days occasionally weeks. When it does hit luckily my hubby is great at jumping in to do extra with kids or around the house. It took several years toget diagnosed tho

Limes disease?

Spellcheck! LYMES that should read. Get tested

You could definitely query that with a rheumatologist consultant

Did you ask about all the things I suggested in September? Sorry if they have been ruled out, but you haven't said.

This is just a hunch but...any chance you could be neurodivergent and experiencing low level burnout at work?

Could this be long covid ?