ME/CFS, B12 and the exercise conundrum

Today I went to see my physiotherapist. This was to check how I was doing since my last visit three weeks ago. I’d not been referred to a physiotherapist before this, so I have found it an interesting experience.

I was referred to the physiotherapist because of my poor mobility. Whilst this is at least partly to do with the ME, there was a noticeable decline prior to my diagnosis with B12 deficiency last year, which hasn’t fully reversed. The weakness, tingling and twitching in my left leg and foot has been particularly troublesome. The question in my mind has been how much of this is due to the ME and how much is a hangover from the B12 deficiency? Also, is there anything that can be done to improve it?

At my last appointment with the physiotherapist, the weakness in my legs was very apparent, particularly in the left one. Everything else seemed pretty normal. In fact, things were pretty much as my doctor had found them in March. The physiotherapist gave me a very light exercise regime to try and help strengthen my core muscles. She acknowledged that it would be counterproductive to attempt too much, but that any improvement in core strength was likely to be helpful to me.

I had a lot of difficulty with the exercises to start with. For the first few days, I found I could only do one or two repetitions of two of the exercises before brain and body gave up and I couldn’t find the right muscles any more. After a few days, I managed to complete the prescribed five repetitions of each of the four exercises… but then had stomach ache for the next two days and had to stop. I then tried again and the same thing happened. So, feeling decidedly pathetic, I decided to reduce the repetitions to three, which seemed to go better.

Then, last Monday, I had my regular 2-monthly B12 injection. Since then, I have been able to do all five repetitions of each exercise without difficulty.

Hmmmmm.

At today’s appointment, I told my physiotherapist that the aching and tingling in the back of my leg had also been better, though the muscles in my left foot still twitch a lot. She examined me again and said that the strength in my left leg was better than last time and much more comparable with that of the right.

So what’s going on? Is it just that I had been doing less standing or walking prior to this visit? Is it that the B12 injection has made a difference? It it that the exercises have helped in some way? Or is it something else?

We don’t know for sure, though it looks like the B12 may be a factor. Both the first exam and my doctor’s exam were 2 weeks before my injection was due. The second exam was one week after. But was the difference down to B12 or was that just coincidence? And how does this relate to the ME?

The thing is, my curious mind, it wants to know. It wants to know what’s going on in the brain, muscles and nerves and how this differs from what goes on in a healthy person. If the B12 is making a difference, then it wants to know why so much is needed to make that difference (I am taking mega supplements as well so it’s highly unlikely that I am anywhere near deficient even just before my injection). It wants to know. So, from time to time, it chases articles about both ME and PA all over the internet. It knows, of course, that some of its questions can’t be answered yet. However, that doesn’t stop it from looking… and becoming really excited when it finds the next tantalising piece of the jigsaw puzzle. It wants to know!

Meanwhile, I’ll continue with the exercises and see what happens. Probably, I should keep a diary. Properly. For two whole months. (Noooooooooooooooo!) Then toddle back to my doctor to report. I’m going back to see the physiotherapist in a month.

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