Extreme tiredness

[Canwegetanothercat]

I know there is a general health board but it doesn’t get anywhere near the amount of traffic as here and I really would love some advice. I’ll try to keep it short and to the point.

12 months ago I started feeling extreme fatigue, I had tests done which revealed I was deficient in B12 and my ferritin was 19 (not deficient, but low). The docs wouldn’t treat me for the ferritin as it was in range but prescribed me B12 tablets. The tablets did nothing, I actually got worse and last summer was horrendous. I could hardly do anything, I just spent most of the time lying down. I decided to source my own B12 and start self injecting. I also ordered some iron tablets.

Things did improve a bit. I wasn’t fully ok but I could do much more than previously. I ran out of the injections and tablets in October and didn’t buy any more because I wanted to see if maybe it had fixed the issue. I have felt okay until February. I have majorly crashed again and I’m getting very depressed with it. I can’t even do small tasks, I wake up still feeling tired and then just go downhill during the day. Full body exhaustion.

I went back to the doctor for my bloods again. My B12 is 295 and my ferritin is 47. I don’t think these levels would cause this amount of extreme fatigue. My doctor has suggested that this could be ME/CFS. I have read up on this and watched a couple of documentaries and it does sound like what I have (although the cases that I saw were much more severe) but I don’t want to end up like that, completely bed bound. I don’t want it to be ME. Could this be something else? Where do I start to find out? I just don’t know where to go from here

The hallmark symptom for ME is Post Exertional Malaise or PEM - do you have that? It’s a significant worsening of symptoms a day or two after an activity, physical, mental or emotional, which is completely disproportionate to the activity and can last days or longer. If you’re not sure then try keeping a simple diary of your activity and your symptoms to see if there’s any pattern.

If you do have PEM, then that’s a sure sign it’s ME. PEM is actually really bad for you - it’s PEM that leads to people becoming bed bound. You’ll need to experiment a bit to find out where your energy envelope is, then cut back on your activity so you stay within your envelope at all times. It’s a bit like learning to live within an invisible electric fence and having to work out where it is so you can avoid the shocks. Each time you touch the fence it tightens a little bit around you.

Whatever you do, don’t try and push through the fatigue. It will just make you worse.

Good luck. There are lots of us here with ME so I’m sure you’ll find support if you need it.

Two things spring to mind.
Coeliac Disease or, depending on your age, the delight that is perimenopause.

Coeliac Disease can be ruled in/out with a blood test but you need to be eating plenty of gluten for the blood test to count (bread, pasta, wheat based breakfast cereal, cake, pizza etc).
https://www.coeliac.org.uk/do-i-have-coeliac-disease/
You need your total IgA tested as well as tTG. A lot of GPs are clueless.
https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/

Fatigue (and coincidentally insomnia) were some of the first symptoms to send me to my GP for HRT.
https://www.balance-menopause.com/

Good luck.

@Quercus5 ah im not sure about a few days after, I’ll need to keep a diary like you say. For me it’s on the day. For example on Saturday I woke up feeling ok, but after I hoovered I suddenly felt the wave of tiredness and then had to get back into bed where I stayed for the rest of the day.

@ghostbusters coeliac disease has sprung to my mind too, but the only symptom I have is fatigue. I don’t get bloating or any digestion issues. Could it still be that? I will read your link now, thank you

@ghostbusters just read the symptoms on the link, I don’t have any of those apart from tiredness and in the past a B12 deficiency. So it’s unlikely to be that right?

It's definitely worth ruling out, especially if you're ferritin is lower end of normal. A lot of people are diagnosed 'by accident' with zero symptoms including my DH's 90 year old gran. The doctor only tested her to rule it out before looking for cancer as a cause of her anaemia. And bingo, strong positive blood Coeliac result.

Thank you, I have another doctors appointment coming up so will ask about this

Sounds like it might not be ME then. Here’s a video which explains PEM:

I have fibromyalgia and chronic fatigue and I do find dairy makes me a lot worse, I'm okay if I have a cup of tea or something, but if I have a lot as in ice cream or something, it causes me to be more tired and causes a flare up of pain.