Excuse the language but it really is that sort of condition!
Over the time I’ve had TM I’ve experienced some strange bodily behaviour. This page is a way of recording some of the things that may/may not be associated with TM in the hope that, going forward, any medical professional looking at this site will be able to apply it to their research.
My brain seems to translate muscle activity as intense heat – meaning from the minute I climb out of bed in the morning my feet (and particularly my toes) feel searingly hot and painful.
From that point onwards things simply worsen through the day.
Strenuous exercise makes things close to unbearable – particularly cycling, when my upper back feels as if there is a sun lamp on full power only inches away.
Potentially very dangerous!
A hot bath feels tepid or cold from my chest down. I can quite literally climb in to a tub of scalding water and feel nothing other than a bizarre tingle. A cold bath is painful!
Bedtimes have moved considerably later than pre-TM. I think that’s because I now have a bought of tiredness mid afternoon that usually requires some sort of micro-nap. When I wake up my lower back is usually very uncomfortable and that can stay with me all day.
Let’s not go there!
The brain wants to, but the complete disconnect down below has basically screwed everything up (pardon the pun).
Fortunately I have some great colleagues and a job that allows me to work from home, so the impact of TM overall has not been as significant as it could have been. However a few hours of brain activity leads to intense tiredness (see sleep) – something one neurologist advised me would be pretty much the norm. Stress of any nature diverts the brain from every other activity – making even walking a bigger struggle than my ‘normal’ and exercise/therapy pretty pointless.
The initial TM ‘attack’ resulted in massive muscle loss – primarily from my back and upper legs. Regaining the strength is proving to be incredibly difficult and, when combined with a number of the other issues on this page, makes life pretty depressing sometimes.
There have been occasions where, no matter how hard I try, my heart rate does not rise to the level it needs to in order to facilitate the activity I am involved in. It’s as if my brain is basically stopping my body doing too much and nothing I can do can change it. At first I thought it was simply the heart monitor (wrist mounted) playing up, but it became clear that that is not the case.
In May 2021 I was hit with a chest cold – my first since the onset of TM – and I chose to avoid exercise for the life of the cold. Going back to exercise after the cold basically demonstrated that my measurable performances (cycling, Wattbike and gym work) had gone back around 2 to 3 months.
Rain on my back feels like I am being shot by hundreds of small darts. Presumably the very same reason why a cold bath feels painful.
I can’t feel them! I can drop a weight on a foot and only feel a sensation that something may have happened. I get cuts that were caused by unknown means and can’t feel sharp impacts into my legs. When I cycle I do not feel muscle fatigue (but it’s very evident because I cannot dismount off a bike unaided).
Getting up out of a chair or any similar movement means real problems with balance, as my brain tries to establish where my feet are. My first few steps are very deliberate and terrible to watch (as back spasms kick in too).
Not easy and very much a deliberate exercise. While I appear normal after a few steps I am in fact concentrating on near every step and occasionally get it wrong. Uneven surfaces are a nightmare! Near constant lower back aches and pains don’t help and nor does having a rebuilt left knee (with very little cartilage left).
I can move my feet quickly – but not my legs. This creates a number of problems, as if I want to avoid something heading towards me (a tennis ball for example) as my brain is screaming to move my legs are lagging a split second behind. Since originally typing this I was hit on the head by a tennis ball which caused a detached retina!
Probably the one thing that really worries me as age draws on and no improvement is evident. At outset I had a permanent in-dwelling catheter; I moved through various means of controlling and facilitating passing urine and now self catheterise at least 6 times a day. It requires exemplary hygiene (not a problem for me but difficult if having to use toilet f acilities away from home) and a constant awareness and planning of activities. Accidents are rare but they can happen. Constipation is another wonderful side effect of the breakdown in communication between brain and the urogenital system.