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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think I may have this condition?

32 replies

Ijustwantedafringe36 · 18/06/2020 19:15

When I was around three years old I fell ill to glandular fever,
from my knowledge this is common in babies etc but from what my mother tells me it was quite severe, I nearly died but I don't talk about it as I feel like it's quite misunderstood.

However I've been doing some research and I came across something called 'chronic fatigue syndrome' It's apparently a controversial diagnosis, may or may not be real but it's supposedly common in people who had glandular fever as a child.

My symptoms match, I have basically everything:
I get dizzy when I stand or sit up and the room spins, I have certain points in my body that ache a lot (knees, upper spine and upper area of arms) yet there's never any redness and I can never really tell if the pain is in my muscles or bones etc, I get brain fog often and my short term memory is terrible, if somebody asked what happened yesterday my mind would stop working. I can't walk long distances without getting the most horrible aches and fatigue. I never seem to not be tired and washing my face with cold water etc does nothing.
It seems to come in cycles too, with bad days and days where there's almost no pain at all.

I've always put this off as everybody feeling like this but I can't put the idea away.
Aibu to think this could be a possibility? Shall I book an appointment with GP when this all gets better?
Does anybody here have an official diagnosis of the condition and could give advice?

Thank you. Flowers

OP posts:
Rumbletumbleinmytummy · 18/06/2020 23:39

I'd be uncertain that you got CFS from having GF at the age of 3 if your symptoms didnt start until you were around 13.

Usually, being very unwell, like with GF, meningitis etc can cause the onset of CFS/ME but I've never heard of anyone then getting their first symptoms over 10 years later.

I have CFS myself, and would want answers as to what's going on in your position.

BudgieHammockBananaSmuggler · 18/06/2020 23:55

I think doctors generally all accept that CFS/Fibro/EDS/POTS exist, but many will think that the cause is psychological. It’s not an unreasonable view given the evidence that a great range of functional (ie psychological) neurological disorders exist. But people find it hard to accept as it seems weird and can be misunderstood as faking symptoms, which clearly isn’t the case.

But anyway, get the tests as advised. And note that even if they are ‘normal’ this is also a bit subjective - some countries would diagnose an under active thyroid when we in UK consider it normal range.

Sin8e · 19/06/2020 00:00

Do you do any exercise?

Ie strenuous 30 mins panting out of breath a few times a week?

barcodescanner · 19/06/2020 00:11

@pinklillie did you get your loading doses? Please fight for them if not. Loads of people have been denied their injections, myself included.

pinklillie · 19/06/2020 08:11

@barcodescanner no I didn't unfortunately

I had three telephone consultations with three different GPs and they were adamant I don't need them although my level is 128. I was very frustrated. I have gastritis and I am convinced I am not absorbing through my stomach and they just would not listen.

I also found out two days after the results that I was pregnant which has worried me even more especially for the baby.

The compromise we came to was that I would orally supplement for a month and they will run all of the tests again including intrinsic factors and If they have not improved they will start the injections.

I feel I have had to agree to this as initially they weren't going to do any tests when I first said how Ill I was feeling. Then they said after the diagnosis to orally supplement for six months then they dropped it to three and in the final phone call I got it to a month.

I don't think you should have to fight for something like this.

Do you have the injections? How are you feeling?

barcodescanner · 19/06/2020 08:27

@pinklillie have you started taking oral supplements yet? You need to be clear of them for 4months before having bloods done otherwise you can get a false high. Your level is really low.
I do have injections, had to fight for them, then fought to get them increased but they won't budge from 8 Weekly so I do my own now. Fed up having no quality of life for 4 weeks out of every 8.
There are support groups on Facebook who can help you (they did me) with writing letters to doctors. Good luck

DutifulDaughterWifeMother · 22/10/2020 16:02

Hi OP, have you got any closer to a diagnosis?

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