Sensory/Motor Disturbances
7.1 What are the Questions ?Following the exploration of changes in the severity of disability over time in section 7 of the questionnaire, section 8 (see Appendix 1) started by asking patients to describe the level of some of the sensory/motor disturbances they experienced in certain parts of the body. Some of the questions underlying the first part of this section are:
The table below lists the disturbances measured and the parts of the body for which they were estimated..
- Which are the most common sensory/motor disturbances experienced by this population?
- Does their severity increase over time ?
- How widespread over the body is a particular disturbance and is it uniformly distributed ?
An answer to the second question posed will emerge more fully as the monitoring of the survey population continues. At this stage an initial answer has been sought through partitioning the population according to year of onset of illness -
Type of sensory/motor disturbance experienced Part of the body affected Muscle pain legs/feet Tremor/judder/twitching arms/hands Tingling/burning/pins & needles shoulders/neck Anaesthesia (numbness) chest/back Stiffness face clerical work 14 The levels of severity of disturbance are defined as follows:
- Group 1: the 1990-onwards onset group of around 50 participants with a duration of illness of five years or less; and
- Group 2: the pre-1990 onset group of around 120 participants who have been ill for five years of more (one for over 40 years).
not present
aware of at rest or following activity
severe, made worse by activity
severe and continuous
7.2 Muscle painFor the vast majority, muscle pain is one of the most significant features of the condition. With the aid of the graphs a comparison of muscle pain distribution in the two populations can be made. At onset a similar pattern is seen (Figures 1 & 2) in the proportions experiencing different levels of muscle pain in the five specified parts of the body in both these populations, but the level reported appears higher amongst those who conracted the illness before 1990 than amongst the 1990-onwards onset group. It is not surprising that a number of the former group has not entered an onset level for their muscle pain (see Figure 2 because of the time scale of their illness; for some it began 40 years ago.
Figure 1 1990-on Onset Group: muscle pain at onset
Figure 2 Pre-1990 Onset Group: muscle pain at onset
Figure 3 1990-On Onset Group: muscle pain now
Figure 4 Pre-1990 Onset Group: muscle pain now
In this group, all of whom have been ill for more than five years, the increase over time in the proportion experiencing severe and continuous muscle pain in chest/back , shoulders/neck and face is marked (see Figures 2 & 4). A comparison of Figures 1 & 3 indicates a significant decrease in the numbers in the 1990-onwards onset group reporting no muscle in all five parts of the body specified. For both populations it will be noted that more extreme muscle pain is experienced in the legs and feet than elsewhere in the body both at onset and at the time of reporting, and, overall, a deterioration over time is indicated. Patterns of change will become more clearly apparent as monitoring progresses.
7.3 Distribution of other sensory/motor disturbances
In the previous section the pattern of occurrence of muscle pain has been explored in some detail. What follows is a summary of the overall picture, formed by comparing the distribution of the changes in level of severity of the other four disturbances mentioned above with the pattern of muscle pain which is established in Figures 1-4. Space does not permit in this introductory report analysis of the information recorded in the questionnaires concerning other sensory/motor disturbances. As a picture of the progress of the illness builds up through the monitoring process further reports will analyse different motor/sensory features on which information will continue to is be collected.
The patterns of occurrence and change over time of tremor/judder, tingling/burning, anaesthesia and stiffness over the body were similar to those of muscle pain to the extent that they indicated an overall increase in severity over time, and the decrease in the proportions reporting no disturbance over the period from onset to the time of reporting was around 10% throughout. The more marked changes in the pre-1990 onset group could indicate a direct relationship between length of illness and level of motor/sensory disturbance. In all the other disturbances, it is in the legs that the greatest deterioration is recorded for both groups. For the face the figures were similar for all five measurements.
There were, however, the following differences in the patterns of occurrence and change in the other four motor/sensory disturbances recorded in these five areas of the body:
7.4 Other questions asked
- around twice as many reported freedom from judder and tingling as from muscle pain;
- similar levels of tingling/burning were reported over all 5 areas;
- at onset in the 1990-onwards onset group proportions reporting muscle pain in legs and arms was well above all other disturbances over all;
- at onset less than 50% reported judder or numbness in any area, the proportions had increased by roughly 10 % in all areas by the time of reporting;
- in the pre-1990 onset group (except in the face) almost twice as many at onset and around three times as many at the time of reporting were free of judder as of muscle pain, level 3 judder was reported by around 10% fewer;
- tingling/burning showed the greatest increase in legs, other areas showing only slight increases;
- over all five, in both populations, little increase in the numbers reporting a disturbance level of 3 of any type for the face, but around 10%. fewer were free of disturbance there at the time of reporting than at onset.
The scope of this first report does not allow an analysis of the other motor/sensory disturbances recorded in the questionnaire (see Appendix I for the complete list - section 8 of the questionnaire) There is still a dense resource to tap in the questionnaires on such features as co-ordination difficulties, digestive problems, hypersensitivity to sound and light and changes in the texture and quality of the skin. The particular problems women reported with their periods might suggest, for example, that useful research could be done in the area of hormonal imbalance. These disturbances, and the others noted, will be analysed in detail in subsequent reports as a clearer picture emerges with the ongoing monitoring process.
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CHROME - Case History Research On M.E.