Published in InterAction 61, Autumn 2007
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Dear Doctor: Prickles ‘n’ shakes
I have occasions where my arms, legs or torso will shake, sometimes violently for an hour or so. This is not only very uncomfortable but quite scary as I cannot control my limbs. There have been times when it has happened when I’ve been out, which is very embarrassing. I also get pins and needles that feel as though parts of my body have gone to sleep. These usually only last a few minutes but are quite frequent. Are these two symptoms connected? What can I do to prevent them or treat them when they occur?
Professor Tony Pinching replied:
These are two sets of quite common symptoms, and yes in a way they are related, although not everyone gets both.
Muscle twitching, jumping, cramps, or sense of body tremor are different aspects of the same process, where muscles seem to get spontaneous uncoordinated contractions. This can also be associated with muscle pain, and may contribute to weakness, because the muscles don’t rest properly. They can be worse after extra activity and tend to occur at rest, and even during sleep. They may be one reason why people who are very sedentary because of M.E./CFS don’t seem to get as much muscle wasting as one would expect. These muscle symptoms seem to result from a distortion in nerve signals to muscles, as part of the impact of M.E./CFS on the nervous system, possibly resulting from the effects of altered activation of the immune system.
Pins and needles are altered sensations resulting from changed function of the sensory nerves from the skin. You can get similar symptoms when you hit your ‘funny-bone’ (which jolts the nerve that passes beside it), or if you sit too long in one position, pressing on a nerve. In M.E./CFS, it again seems to be due to spontaneous distortion in nerve signals, and also greater sensitivity to things like pressure on nerves. It may also in part be due to a central brain processing problem, analogous to the noise and light sensitivity that many people with M.E./CFS get; these seem to be due to a failure of the brain processing to be able to switch down sensory messages.
A way of understanding what is going on is to imagine that the nerves are transmitting signals from one place to another a bit like a radio. If there is interference, then ‘crackle’ will be detected as well as the intended signal. For nerves going from brain to muscle, it will cause as spontaneous contractions. For the nerves passing messages from the body to the brain, the brain will try to ‘interpret’ the crackle, which usually causes pins and needles, numbness, itching, and/or nerve pain often (with a burning or shooting character).
These symptoms are alarming but don’t usually signify serious damage or inflammation.
If the symptoms persist in one place and don’t seem to correlate with the ups and downs of your M.E./CFS, it would be important to check with your doctor, just to make sure it isn’t anything else. For example, pins and needles, numbness and weakness in the hand might to be due to carpal tunnel syndrome, a common condition where there is pressure on the nerve at the wrist, which can be relieved by a simple operation.
f you are pacing your activity carefully and avoiding cycles of overactivity (‘boom and bust’), then these symptoms often diminish. That is often the best way of preventing them. However, some people find they are bad enough to want to do something.
Muscle pain, tension and twitching can be helped by gentle massage, so that can be worth trying. A partner, family or a friend could perhaps do this for you, so it doesn’t need to be expensive. Gentle stretches or gentle movements in a pool can help too. Frequent cramps can be helped by quinine, and there is enough in a bottle of tonic water. Some people find that drinking tonic water each evening can reduce night cramps, but there are quinine tablets too.
Over the years, I have found that many patients with muscle twitching, jumping and pain can benefit from muscle relaxant medication, which probably works by filtering out the ‘noise’ in the nerves. This can be discussed with your GP or specialist. I usually recommend baclofen, as it is often effective and well tolerated by people with M.E./CFS. As it may be slightly sedating, you can take it mostly at night, as needed. Regular dosing can keep better control, and may liberate some spare energy! Methocarbamol is a less widely used alternative. Most of the other muscle relaxants don’t seem to help so much or cause more side-effects in M.E./CFS patients. Diazepam is sometimes used in short-term relief of muscle spasms, but shouldn’t be used regularly long-term, as it loses effect and causes dependency. A specialist may explore other options if the problems are major and don’t respond to these.
Pins and needles may not need treatment, but if severe or associated with nerve pain, then options include low-dose tricyclic agents such as amitriptyline or nortriptyline (these are called antidepressants, but are also used at lower dosage for managing nerve pain, poor sleep, irritable bowel syndrome, bladder overactivity, and migraine prevention.) Gabapentin (or pregabalin) and valproate are also very helpful for nerve pain; they are “anticonvulsants” reflecting that they can filter out some of the “noise” in the central nervous system too. Acupuncture is also often reported to help with nerve pain.
Should I refuse antidepressants?
In the May 2007 issue of InterAction, we promised further information about the various reasons why patients may be offered antidepressants. Professor Tony Pinching commented:
Very many patients with M.E./CFS tell me that they have been offered antidepressants and have refused them. It may be worth using this cue to reflect on what this exchange might actually mean in different situations.
If a doctor listens to a patient’s story and diagnoses depression and not M.E./CFS, then such treatment could be appropriate if the doctor’s diagnosis is correct. Not everyone who has depression is completely aware of it at the time. Sometimes a two-month trial of treatment can be useful to exclude the possibility, as any benefit should be starting to be clear by then. However, there are other treatments for people who prefer not to use medication. If the patient disputes the diagnosis, then a further opinion may be sought.
If the doctor has diagnosed depression when the diagnosis is in fact uncomplicated M.E./CFS, then the situation is different. Antidepressants are not an effective treatment for M.E./CFS itself in patients who do not have accompanying depression (but see below about their use in symptoms control). Many clinical trials with different antidepressant drugs have failed to show benefit in this setting.
If the doctor thinks that significant depression or anxiety are happening alongside M.E./CFS (whether as a reaction to it, or just as a separate illness), then antidepressants may indeed be useful. M.E./CFS can often feel much worse if you are also depressed or anxious. Again a trial of treatment can be useful, to help an individual determine whether they can benefit from the approach, before making a long-term commitment to it. We know that significant mood disturbance occurs in about 60% of people attending specialist clinics for M.E./CFS. The choice of medication should however be adjusted to a person who also has M.E./CFS, as many such patients are more likely to experience adverse effects. In particular, fluoxetine (Prozac), paroxetine (Seroxat) and venlafaxine (Efexor) are poorly tolerated, usually because they are too ‘activating,‘ disrupting sleep and encouraging ‘boom and bust’ activity patterns. Citalopram and sertraline, as well as mirtazapine, are better tolerated.
Finally, many patients may be offered very low doses of the tricyclic and related ‘antidepressants’ (eg. amitriptyline, nortriptyline, lofepramine, doxepin, trazodone) as symptom control treatments for pain, sleep disturbance, and some other symptoms. Sadly, many patients have refused the medication because of the category label, even though they are being used at a different dose and for a different reason.
With all these issues, the matter can often be clarified with a bit more explanation and discussion.
If, after due consideration of the rationale and options, a patient still wishes not to use this approach to treatment, that is of course their right.
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