Transverse Myelitis and the Foot Rub

I have been having a difficult time. I am not sure whether I am having a recurrence of the active process, or whether I have been working too hard and wearing my self out, or whether my seating position is recurrently putting pressure on my spine, or whether (despite getting on my indoor bike at least twice a week, and walking as much as I can manage), I have just not done enough exercise. It is hard to work out which comes first – the chicken or the egg. Whatever, I have continued to have chronic pain in a classic arc around the right side of my chest, emanating from T7/8 - the site of the original TM.

I continue to get constipated most weeks despite a great diet, and precautions like my fruit (and dried fruit) intake, and probiotics. Being bound up tends to make me a bit sluggish. In addition, I get anxious about just when I am likely to go to the toilet, and how acutely this will happen. At home there is not a problem with timing, but on my two days of consulting, I like to be clear, and not having to give any attention to my inner self. I need to focus all of my energy and thoughts on my patients. There is another consequence, and that is that when I do feel even the slightest urge, I tend to spend rather more time on the toilet, attempting to go. This is good for iPhone usage in terms of social media, haiku writing, and favourite games. But the consequence seems to be some pressure under my thighs – despite the use of a special padded toilet seat. I have wondered whether this has implications for my sensation in my legs, my ongoing loss of muscle and muscle tone, as well as my increasing difficulties with proprioception – that internal sense of knowing exactly where your legs and feet are in space, added to the feedback when moving around.

The fact is I walk less steadily and with less certainty, and there are emerging problems with my stride – it is not so long or strong, and my right foot has a tendency to flick to the outside as I land it. Probably worse than this, I have less feeling in my legs and feet. To be clear, I can feel hot and cold OK, I feel pain and pressure OK (enough to withdraw before some damage is done), but I have an increasing ‘woolliness’ in my legs and feet. I also seem to have a stronger withdrawal reflex to touch, which looks much more like the response that infants and small children have before their nerves are fully myelinated. I conclude that I am losing more of my myelin sheath somewhere along the nerves.

Exercise does help a bit, but also tires me out. I have one of those electric foot stimulators that seems to help not only the blood flow through my feet and lower legs, but also the sensation I have been describing. But it does not seem to last.

In the past, my beloved soulmate Jan has done some massage to my feet and lower legs. That has always been helpful. It tends to bring back some of the sensation, but also has a tendency to send me into a deep sleep – which I am sure does me no harm as long as we choose the timing carefully (I am more than usually useless in terms of household chores if we get the timing wrong). Sadly, Jan tripped and fractured her left wrist about 8 weeks ago, and this has caused her severe pain, needed a series of attempts to reset the bone under local anaesthetic, a number of plaster replacements, and endless Xrays and lengthy visits to a hospital about an hour down the road. That, of course, put an end to massage (and rightly so).

Jan had her plaster removed about two weeks ago, and has been working hard to recover her range of movement, and the power in her arm, hand and fingers. Part of this has been visits to physiotherapists, part just her sheer determination to recover. I have not wanted her to drive just yet, but will not be able to resist her pressure to do so much longer. So, Jan offered to massage my lower legs and feet yesterday morning. With some trepidation, I gave in. She uses a body moisturizer, and does a gentle massage before focusing pressure on an area on both legs at about the inside calf, which has always been very sore to pressure. She massages until the soreness ‘goes away’. She then works on some painful areas on the side of my feet under the ankle then a sore area across behind the toes – again until the soreness goes away. She then works on the toes individually. I guess we have been influenced in our understanding of where to look for trouble, and how to do the massage, by some scant knowledge of both acupuncture and reflexology. But, mostly, it is a question of learning from experience.

Anyway, Jan had always been unsure that her massages did much more than send me off to sleep, and dribble (a bit). But yesterday after my sleep, sensation in my legs was very much better, my sense of where the bits are has improved out of sight, I have a buzzing throughout the lower legs and feet, and my walking and steadiness has very much improved. And the feeling has continued for more than 24 hours. I am enjoying the slight ‘pins and needles’ sensation. And, of course, I have been encourage to do more exercise – which I am sure will, in turn, provide more benefit. We decided (or rather Jan did) to do the massage three times a week as a routine – to see whether we can improve my recent deterioration. I have concerns about the pressure on her left hand and wrist, but she says it is good physiotherapy for her. Maybe this is  ‘win-win’ situation. If it does add substantially to the pressures of daily living for Jan, we will try to find a professional alternative. I can’t think why we did not ‘get’ this so forcefully before. I guess it was the 8-week break, and then the impact of the massage.

Anyway, I would be interested to hear of others who have had similar experiences.