This is a personal account of how I have dealt with spasticity following an accident causing spinal injury at C4/5 in January 2013. I have made no attempt to find out how typical or otherwise my case is; so I do not know whether the methods I have tried would work for others with spasticity from spinal injury or from another cause. Not a great deal of relief has been achieved. I am still in constant discomfort, although it has been possible to reduce some of my worst episodes of spasticity.
My purposes in writing this are these:
1 To share the methods I have found to give modest relief;
2 To ask whether anyone has any other methods.
Spasticity or continuous muscle contractions have been with me every minute since my spinal injury and paralysis below the chest. Spasms - sudden involuntary muscle contractions - happen many times each day but not continuously.
Muscle contractions are with me day and night but they vary in intensity from day to day and within each day. They are usually least intense between going to bed and falling asleep and in the afternoon. (Meals are usually followed by increased spasticity. I do not normally have any lunch). They are often most severe when getting up in the morning and in the evening following a meal - even a meal of only one modest course.
Continuous contractions are most noticeable above the waist, in the area that would be covered by a waistcoat, and in my hands. My fingers and thumbs are continuously clenched but with variable tightness. Without manipulation, I have very little movement in my thumbs and forefingers and none at all in my other fingers. My right hand is slightly worse than my left. With manipulation, all my fingers and both thumbs can be opened substantially but not fully. I practise this several times each day. This is useful to open the fingers of my left hand enough to grip the wheel of my wheelchair when I want to move it. They stay open for only a minute or so. I can not open the fingers of my right hand to do the same. To move my wheelchair I have to try to rub my right fist along the rubber tyre of my chair. I usually sleep with one or both hands partially opened out with the back of my head resting on them and acting as a weight. A problem with this has been that the pressure on my hands has resulted in sores, particularly on the knuckle of my right forefinger.
Up to the end of 2013 I used hand splints in bed. They would prevent me using the phone, which might be needed to call for help at night. I feel that it is doubtful whether wearing splints would have prevented the clawing of my fingers; whether they would or not, they would be a risk not worth taking and a further deterioration in what is already a miserable existence.
Muscle contractions in my legs are not as severe as above my waist. I can feel a pulling sensation along the lengths of my legs, especially above the knees but this never causes serious discomfort. Although I can feel that I have got legs, I am never quite sure how accurately my feelings represent reality. When in hospital in the first seven months after my initial injury, physiotherapists could carry out exercises on my legs without me knowing which leg they were working on, unless I could see. Now I have enough feeling to be able to tell which leg carers are working on.
I have almost normal movement in my arms but reduced sensation on the insides. Except when in bed, my arms, especially the insides, sting with a sensation of cold, even when they are not cold.
My spasticity has not changed appreciably since my spinal injury except that:
1 Movement in my hands has reduced. For several months after my injury I had substantial movement in my fingers, declining from thumb to little finger. I had a much better grip between thumb and forefinger than I have now. My present condition was reached 10-12 months after my initial injury.
2 My spasms have reduced. For about 18 months after my injury if I were to lean forward in my wheelchair such as to reach for something, a spasm would often develop and make it difficult to get back into a normal sitting position. On two occasions I fell out of my wheelchair in such circumstances. This does not happen now.
3 Self-induced movement in my legs has never been much since my injury but has reduced; my awareness of movement induced by others has increased but is still weak.
Despite having taken medication for spasticity almost since the time of my spinal injury, there are few conclusions which are clear and unambiguous. Certainly my muscle contractions have never been taken away completely but there have been circumstances in which they have been reduced. The reasons for lack of certainty are these:
1 I have no accurate way of measuring the severity my spasticity. I rely on subjective feeling and the ease or otherwise I can open up my clenched fingers on the arms of my wheelchair.
2 I have no way of knowing how severe my spasticity would have been without medication or with a dose different from that I took.
3 Some of the results have been inconsistent: sometimes a medication appears to reduce spasticity, sometimes it does not.
During my first few weeks in a spinal injuries hospital following my injury, I developed severe urges to move my legs but, of course, was unable to do so. I was prescribed 5mg Baclofen daily. It worked very well but for only a few days. After a week or two, the dose was increased gradually but spasticity became more severe. When it reached 50mg per day I began to feel drowsy. Several other patients looked as though they were in a worse state of drowsiness than I was. So without needing to mention names, I asked two nurses separately whether they were on high doses of Baclofen: they were.
In hospital there was some difference of opinion as to whether Baclofen reduces voluntary movement. The consultant overseeing my case said it does, the doctor issuing the prescription said it does not. Because of the accompanying drowsiness, my dose was reduced to 30mg per day by the time I left hospital in August 2013. Soon after returning home, I reduced the dosage to 20mg for one night. There was no perceptible increase in spasticity and the following morning my voluntary leg movement had increased. Recently my leg movement has become so limited that reducing the dose makes no difference.
Since returning home I have tried doses between 20mg and 80mg per day and occasionally, none at all. When I have tried higher doses within this range, I have not experienced drowsiness but beyond 30 or 40mg per day, neither has there been any reduction in spasticity. When I have tried less than 30mg, there has usually been some increase in spasticity, but not always. So for the time being I have settled on 10mg with breakfast, 10mg at teatime and usually 10mg (sometimes 20mg if spasticity feels particularly severe) at bedtime.
I have never been sufficiently desperate to request a Baclofen pump. The consultant at the spinal injuries hospital following my injury raised the issue with me, only to say that he did not recommend it because it would eliminate voluntary movement. I did not pursue the matter. I still have no intention of ever asking for one.
An interesting discussion between Baclofen users, including pumps, is available at this site:
I started taking Clonazepam about three years after leaving hospital, 0.5mg at bedtime. This was later increased to 1mg. The only difference in effect seemed to be that 1mg made me sleep more heavily but as this was not a problem, now I usually take 0.5mg. Occasionally I have tried not taking it at all: spasms seemed to result: so I am reasonably sure that it has reduced my spasms, but I am less sure whether it has also reduced continuous muscle contractions.
The reduction in spasms while in my wheelchair and the elimination of lurching forward when reaching forward has occurred at about the same time as I have been taking Clonazepam but I can not be sure that they are connected: I take Clonazepam at bedtime whereas the spasms occurred during the daytime including the evening.
Tizanidine and Dantrolene
I have tried both of these together and separately for periods of more than a year with no noticeable effect on spasticity, although the dosage of Tizanidine was low (2mg per day). There was no noticeable reduction in spasticity when taking them and no increase when I stopped taking them.
My spasticity has been more severe at times when I have had urinary tract infections. By preventing infections, Nitrofurantoin has eliminated this extra spasticity.
These were tried in my legs on one occasion at home. When the consultant returned to ask whether I had noticed any increase in voluntary movement I had to say that I hadn't. A physiotherapist accompanying him said she thought that her measurements did show some increase. I was inclined to accept her measurements in preference to my observations but the consultant did not take the matter any further.
I took the painkiller Ibuprofen from time to time when in hospital. It gave some relief. I have used it only very rarely since then. I have taken the view that although it can reduce discomfort, a painkiller does nothing about the muscle contractions causing it. In any case, a similar relief is usually possible using other methods.
In hospital, there were many times when I was in pain because I was in a position on my side to reduce the risk of pressure sores. If a nurse came to help, often I would get Ibuprofen with some relief half an hour later; if a physiotherapist came, I would get instant relief by being put in a better position; if the hospital changed the mattresses, I wouldn't have had the pain in the first place.
Since May 2013 I have had a suprapubic catheter. Faults in the drainage system do not happen often, but when they do, there is usually an increase in spasticity. I can not remember ever having any of these kinds of problem when in my wheelchair. They have always been when lying flat in bed. This might be expected, since drainage is almost entirely dependent on gravity.
The circumstances in which I have had drainage problems have been these:
1 when the tap between my leg bag and the night bag has been left closed;
2 when there has been an airlock in the night bag preventing drainage from the leg bag;
3 catheter blockages, until they were stopped in July 2016. An acount is written as a journal on this site.
I have been offered surgery involving muscle transplants from my arm to my fingers with the aim of increasing finger movement. My view is that even if it would work, the cost and trauma involved would outweigh any gains.
A Baclofen pump would also involve serious and repeated surgery.
Except when in bed or in a hot room, my arms always feel cold, and sometimes are cold, but the rest of me that can feel anything, can be too hot. When it is, spasticity is more severe. It can be reduced by opening my jacket to let out the hot air. As I cool down, spasticity invariably reduces.
Overheating usually follows a meal, even if only comprising one medium sized course: so my spasticity is usually worse in the evenings. Coffee seems to aggravate overheating.
EXERCISE AND MOVEMENT
Physiotherapy was available for an hour most weekday mornings in hospital and sometimes by visiting physiotherapists for about 10 minutes at weekends. A benefit of this was that physiotherapists were mostly very capable of eliminating pain resulting from position in bed - their method of preventing pressure sores was to turn the patient every 3 hours day and night. This often became very painful when lying on my side. Incipient pressure sores were blamed on the wheelchair and resulted in more time in bed. Since returning home with the same wheelchair, I have had a much better mattress which has eliminated the need for turning and the pain, discomfort, disturbance and the waste of staff time that went with it. About a year after returning home I wrote to the hospital to tell them of my lack of pressure sores following the change of mattress. They did not want to know.
Physiotherapy might have been responsible for the greater voluntary movement I had in hospital than I have now, but it is doubtful whether it reduced spasticity or had any lasting benefits for me, perhaps because I have not had any significant nerve regeneration.
Since returning home, morning carers give me some leg exercises for a few minutes while still in bed. These are always accompanied by increased tightening of the muscles in my hands. Twice a week, friends help stretch my leg muscles using a strap hooked over each foot in turn with my leg outstretched horizontally on a chair or on my bed, the other end of the strap being held by me in the opposite hand to the leg. I have not noticed any change in spasticity as a result.
Movement around my home and even about the room in which I spend nearly all my life, is difficult without anyone to help. Any effort to move my chair is accompanied by increased spasticity which subsides after a few minutes if I take a rest. Doing nothing at all other than thinking usually results in least spasticity. Even holding a newspaper for more than half an hour or using my computer for more than about an hour results in tiredness and increased muscle contractions.
Being so restricted, unable to control or even influence so much of what is happening to me and being dependent on other for so much is so often a cause of frustration and stress, which is normally accompanied by increased spasticity. It does not come naturally for anyone who has spent many years in control of their life to suddenly become dependent on others for so much.
Accidents such as dropping things on the floor are much more likely to happen to someone who is paralysed and are also more difficult to rectify without help. There have been occasions when my wheelchair has become jammed in furniture and I have just had to wait for someone to call. I am in distress to some degree for nearly all my waking hours.
I have had the services of psychiatrists at home and psychologists both in hospital and at home. A psychiatrist visited me four times each at about 3pm. The first visit lasted about 50 minutes; the other became progressively shorter. He was an amiable chap but did not demonstrate any particular skill or understanding of my situation. His conclusion was that I was 'a little bit depressed'. I had an offer of Sertraline but because it did not appear to bear a relationship to the preceding discussion, I declined it.
Another psychiatrist visited me, but not having read my file, did not know that I am paralysed, that I live alone, can not answer the door and that there is a key safe near my door, number on file. He left a note to say he had called but I was out, with a phone number to ring to re-arrange the appointment. I rang the number and left a message on the answerphone. I never had a response.
Two psychologists in hospital usefully represented me to the medical staff and helped my discharge by supporting my complaint to my M.P. about the health authority mismanagement of my discharge. Another psychologist visited me at home several times. The main theme was to try to divert my attention away from my discomfort and my predicament to matters less unpleasant. This was done with the best of intentions but did not progress far. I think I can appreciate how a psychologist might be able to reduce the stress of a patient who thinks the situation is worse than it is but not so much one who is not far off in assessing the situation.
Several nurses and others working with people with spinal injuries have told me that they know of former patients who have used Cannabis. I have never been tempted to take the risks. In terms of seriousness for me, spasticity is only a distant second to the devastating paralysis following spinal injury.
The methods of reducing spasticity a little outlined here are only tinkering at the margins of a fundamentally bad situation. I have not been out of my home since August 2016 (to hospital). The discomfort of increased spasticity resulting from the jolting along uneven surfaces outdoors has been a deterrent but I am not sure that I would have gone out in a wheelchair, even if I were free from spasticity.
My contacts with hospitals have not been successful. This has influenced my attitude towards treatment including for spasticity. My initial incarceration in a specialist spinal injuries hospital was my first stay in hospital, except for an initial four days in a local hospital before being moved to it. Even the move was bungled, leaving my belongings in the safe at the first hospital for two weeks. The only achievements resulting from 205 days in a specialist spinal injuries hospital were the installation of my suprapubic catheter and the introduction of Baclofen. Like all the other patients I met, I was offered no treatment for my injury, only for the after-effects, mainly spasticity and urinary tract infections. Since then I have avoided hospitals as far as possible. I have made about six visits as an outpatient or overnight such as when have fallen out of my wheelchair or once when excessive bleeding followed a change of catheter. The hospitals I have been in have cured my UTIs but only in a way involving drip feeds and much trauma, distress and staff time. I have never been offered Nitrofurantoin in hospital.
Ambulance services have been a deterrent to me. Twice I have missed appointments because the ambulance was late or the wrong kind of ambulance was sent. The four-hour service agreement is liable to turn an hour of physiotherapy into a whole day, possibly missing my teatime carer and getting nothing to eat or drink from breakfast one day until the next. Once when the ambulance was late I missed my appointment and was turned away. I then had to wait nearly four hours for an ambulance to go home - a day spent waiting in discomfort for nothing.
Perhaps my aversion to hospitals and in particular to surgery, has limited the reduction in my spasticity. Whether it has or not, I do not feel that the cost in terms of trauma would be worth paying, and the risk involved would not be worth taking.