Update: Week starting 16th May 2022, and Folate

I’ve not really posted much in the last week or so. Last post was a week ago yesterday with the “Crash and Burn” post. I’ve felt a “little” better this week, but it has really been a struggle to get through the week if I am honest. I just haven’t really had the energy to post much.

What’s been happening this week then? Mostly nothing If I am honest. Been rolling out of bed just before work, getting through my day (just) and then often just getting back into bed. Weekends have been mostly to recover from the week ready to start again. This week background symptoms have been high – but haven’t really had any bad episodes to speak of. That is mostly due to the fact I haven’t DONE much this week. I went to a supermarket once – for a short time – and took my wife to the Doctors once – but I stayed in the car.

For work this week – I have dealt with a few incidents that have come up and otherwise been available for firefighting but haven’t really done a LOT. Part of this is because I am off work for the next 2 weeks after today so don’t want to start anything new anyway. I think this has reduced chances of any bad episodes this week – although as I say I have had a high level of background fatigue and pain, and light-headedness when standing up.

The only major thing I did this week was on Wednesday going for my annual retinopathy screening. I can’t drive to that due to the effects of the drops in my eyes during the screening so would not be safe to drive home, so got a taxi there and we walked back which is a mile and half. It was all down a (fairly gentle) hill on the way back and we took it slowly – but my legs still felt a little like jelly when we got home. Fortunately, as I had taken it so slowly and had don’t virtually nothing else this week – it hasn’t caused any significant PEM.

Test results – at last – and questions!

I finally have my test results back – that took over three weeks! There IS an abnormality in Serum Folate Levels. I am significantly lower than the recommended range – and this can cause VERY similar symptoms to ME/CFS. It’s possible then that this anemia (similar to Pernicious Anemia).

I am not convinced though. This anemia causes oversized “faulty” red blood cells. The average lifespan of a red blood cell is 3 months. Sometimes these deformed megoloblastic blood cells do not live that long – but it’s still something that takes its time to change. I don’t see how this can be as fluctuating as something like ME/CFS. My symptoms this month have been at their worst ever. I have had these symptoms on and off for over 3 years and sometimes its been bad (like this last few weeks) and sometimes its been “not so bad” to the point where I have even started to wonder if I was imagining them before! This fluctuation is common with ME/CFS but I cannot see how this would be the case with Folate deficiency anemia.

Apparently it takes 4 months of taking suppliments or injections for folate deficiency anemia for it to get back to normal…. how can soemthing that takes 4 months to correct “fluctuate” and have days when there are no symptoms (or much less) and days when they are worse?

This is why I am not convinced that this is the issue. Clearly the folate levels are low – and that should be addressed but low folate levels without evidence of megolabolastic cells which are picked up by a full blood count test (also done and not finding any anomalities) doesn’t usually point to a large issue.

My suspicion going forward is that the Doctor will dismiss my questions as inconsequential and just prescribe either oral or injections of folic acid for the next 4-6 months and not look at anything else until that has happened. If this corrects my symptoms then great – couldn’t be happier. I suspect however it wont, although as my symptoms fluctuate – they may get better during that time regardless of any improvement due to folate levels. That wont mean that the folic acid corrected the problem however – just that it coincides with a period of milder symptoms.

I expect then that at the end of any trial of suppliments has run its course – I will still find I have the symptoms and will be clear that the folate wasnt the issue – then we go back to the beginning. I guess not right to the beginning as the only test that showed anything was the folate one so they will have done a large amount of the tests that show other answers apart from ME/CFS so I may be “closer” to being referred etc.

For now…. I am going to carry on assuming this is ME/CFS until I get anything to prove otherwise. I am not going to “push myself through the pain” and risk making myself much worse. This last 2-3 weeks have been a nightmare and doing to do everything I can to stop that becoming the “norm”.

Am currently waiting for the Doctor to call me back to discuss these test results – so my suspicions as to what they will say….. may be wrong of course.