Published in InterAction 59, Spring 2007
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Dear Doctor: Speech problems
Speaking for only a couple of minutes leaves my tongue feeling swollen and my lips numb. People mention their speech slurring, but not what I experience when I strain to speak for too long; when the body shuts down and you can’t produce a sound. Not being able to communicate or socialise is incredibly distressing. This has been my worst symptom for almost a decade now and yet there is hardly any literature on this problem.
After receiving this letter, InterAction asked Noticeboard readers if anyone else had experienced speech problems. Shirley told us: “I had major problems being understood – speech was very slow and badly slurred. Only close family understood what I was trying to say. My speech still changes according to energy, stress etc.”
Jeanette said: “My voice becomes very weak and faint, and my voice breaks up, so I have to stop talking. The only thing that helps is to rest more, and gradually my voice will return to a more normal level. It usually occurs during a relapse or when I am very tired, or when I try to talk for longer than usual. I also have trouble with swallowing and chewing.
Sarah added: “I tend to experience speech loss when my muscles are having ‘muscle fatigue phase’ – the sensation is that my tongue seems to become too large for my mouth, and my jaw muscles become sluggish. I have to get the words out quickly before my jaw gradually becomes slower and slower and then stops working. The other type of speech problem I get is part of a migraine ‘aura’, usually when I have had to overdo things. I tend to feel as though words get stuck behind my teeth – I begin stuttering and stammering, and it becomes increasingly difficult to talk.”
Professor Tony Pinching commented:
Your correspondents outline a range of speech problems, which are among the less common, but yet more troubling symptoms of CFS/M.E. The additional impact of speech difficulty to the isolation of CFS/M.E itself can be understood. While word-finding problems are common, serious difficulty with actual speech production is surprisingly uncommon; it is most likely to occur in those who are more severely affected.
Speech represents one of the most complex functions of brain and body and this illness can impact at different levels. At the ‘voice-box’ end, the very fine muscle control and coordination on which we rely for fluent speech can be affected, much like muscles in the arms and legs. Even quite subtle changes in function can affect the volume, tone and accuracy of speech production. Swallowing is sometimes affected as related muscle and nerve groups are involved.
If sensations in and around the mouth and throat are affected (again, as sensations often are elsewhere), then speech can be harder. This is because the brain gets confused about how to produce sounds, as it depends on feedback from sensation.
CFS/M.E. can also affect the function of the speech control centre in the brain, much as it can cause ‘brain fog,’ memory difficulty, sleep disturbance, or poor temperature control. This may be at the level of instruction to the voice box, giving rise to stammering or stuttering. Or it can be at the level of word and sentence formation, which can cause word-finding problems, jumbled words and sometimes spoonerisms [in which letters or syllables are swapped eg. saying “a lack of pies” instead of “a pack of lies” – Ed]. Wider problems with brain fatigue may mean that the whole process of putting together and producing speech is too much. A migraine aura (before the headache) can indeed affect speech too.
Finally, I should mention that sore throat is, of course, quite a common symptom in CFS/M.E. This may be an echo of the triggering infection or could be a bad dose of whatever is going around. I have seen a few people whose illness has been triggered by viral laryngitis, with loss of voice as an early feature; for them, relapses may show up with voice problems.
Each person with CFS/M.E. will have their own version of the illness. If speech problems are a feature for you, they should determine how you plan that activity, just like any other energy resource. Apply the principles of pacing, including true rest and relaxation breaks, to speech just as you would to anything else. If function is limited, make sure that you use it to best effect. Save your voice for saying things that make a difference for you as a person (maybe recite a haiku that you have been composing for weeks?!). Asking for a cup of water, or for someone to turn the TV down, could be done by pointing at a pre-written request list, for example. Find a signal system that suits your situation.
Various patients have found that particular solutions or therapies can help them, through trial and error. As is often the case with other difficulties, these may be particular to them and may not work for the next person. If speech problems are major, it would be wise to seek help, if necessary a referral to a speech therapist. Whilst they may not have seen many people with CFS/M.E., they are expert in the ways in which illness can affect speech production, and will have valuable skills that can assist adjustment and recovery, regardless of the cause.
Keith Anderson, M.E./CFS Clinical Nurse Specialist, Fife, said:
As if M.E./CFS was not the cause of enough disabilities, imagine not being able to tell a doctor how you feel because you have lost the power to speak. Speech loss is one of the more rare M.E./CFS symptoms but it is frightening for those who experience it as it robs them of another potential coping resource.
More common are communication difficulties such as losing the thread of conversations, being unable to recall a word or tiredness at the point of an important discussion – ‘brain fog’ if you like that term. Very often these events are strongly associated with the onset of increasing fatigue and as better spells come these symptoms are less common. However other forms of speech disorder are more prolonged.
Speech disorders belong to a broad category of disorders called communication disorders that also include language and hearing disorders. Communication disorders affect about one person out of every ten. Speech disorders refer to difficulties producing speech sounds or problems with voice quality. They may be characterised by an interruption in the flow or rhythm of speech such as stuttering, or by problems with the way sounds are formed, also called articulation or phonological disorders, or they may involve voice problems such as pitch, intensity or quality. Often, there is a combination of several different problems.
Speech disorders can either be present at birth or acquired as a result of stroke, head injury, or illness. Many are temporary, some transient because of the nature of the condition. The production of intelligible speech is the result of very complex InterActions originating in the brain.
In trying to provide a form of management for this symptom there have been a few suggestions in literature and from anecdotal sources in my patient cases. One suggestion is based on an ENT (Ear/Nose/Throat) surgeon’s approach that when speech becomes sore the tendency is to rest it. However, this often prolongs the speech loss and it is then better to ‘use it or lose it’ and continue trying to speak. This would be inclusive of increased fluid intake, gargles with soluble asprin (where appropriate), reducing or stopping smoking and breathing and speech therapy exercise.
Other methods used by some include a pro-active rest approach that includes speech, as an activity that is paced in the same way as any physical activity, such as walking, would be. Important discussions or communications with people like bank staff or DLA administration are planned into the day as a single tiring activity with little or nothing planned around the rest of the day. Regularly review any approach you choose as your condition changes often enough to render certain methods obsolete.
Even the 2002 Chief Medical Officer’s Report into M.E./CFS officially recognised that a number of serious and unusual neurological symptoms and signs do sometimes occur in more severely affected people with M.E./CFS. These can include double vision, blackouts, atypical convulsions/fits, loss of speech, and loss of swallowing. When these neurological symptoms and/or signs occur, it is always important to exclude the possibility of the cause being another neurological disorder. In these cases consult your doctor or GP for further guidance.
Dr Sarah Myhill, M.E./CFS specialist, responded to Sharon’s letter:
Speech is a complicated process requiring intense neuro-muscular co-ordination. Speech, together with balance and short term memory are highly energy-dependant processes going on in the brain. Let us face it, when somebody partly switches off their brain with alcohol the first things to go are speech, balance and short-term memory! This is because they are highly energy-dependant processes.
In order to speak there are several mechanisms that have to go in place – first of all the brain has to formulate the thought to create speech, this thought then moves to the speech centre where the necessary messages are created, which pass down the spinal cord to the mouth and throat. Just think of all the muscular activity with respect to ones lips, tongue, jaw, which are necessary to shape the air flow that is created by the vocal cords. All these movements require very fine control of the muscles.
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