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Ataxia/Balance problems

Discussion in 'Neurological/Neuro-sensory' started by outdamnspot, Feb 13, 2017.

  1. outdamnspot

    outdamnspot Senior Member

    Does the presence of balance problems point towards a more specific, underlying cause of one's CFS (i.e. where testing should possibly be directed) .. or is this just a fairly common symptom?

    I'm surprised no doctors I've seen have taken this very seriously, since it renders me effectively physically disabled (at just 30); I can't walk more than 10-15 meters without feeling like I'm going to keel over. I have had a brain MRI which was clear, and a neurologist said it was probably just stress (!), whereas my own GP recommends exercising (okay ..).

    I know it's common with e.g. Lyme, which is why I ask, though my Lyme tests were negative as well.
    WillowGris likes this.
  2. charles shepherd

    charles shepherd Senior Member

    Problems relating to balance are a common question to the MEA information and support services and I've attached some standard information below, which should be of help here:

    There are a number of reasons why people with ME/CFS may experience problems with balance and staying upright.

    Balance problems are commonly reported in ME/CFS - and this tends to be more of an unsteadininess, or as some people describe it 'walking on rubber' - rather than a 'spinning round; vertigo.

    In ME/CFS, this may be caused by problems with the vestibular apparatus - a mechanism in the inner ear that sends messages to the brain about balance - and there is some research evidence to support a role for vestibular dysfunction.

    Your GP can test for a more general state of balance with a Romberg test and for vestibular dysfunction with a Fukuda stepping test in the surgery (see below).

    If you want to follow this up it is covered in more detail in the MEA purple bookl and in 'Living with ME' (Vermilion paperback, available free from any public library).

    Unfortunately, there isn't a simple and effective treatment for this type of balance problem.

    But there are prescription drugs that sometimes help and what are called balance retraining exercies - which could be discussed with your GP.

    The other reason for balance problems, especially if they are associated with feeling faint or sweaty, and occur when changing from lying to standing is what we call autonomic nervous system (ANS) dysfunction.

    The ANS sends messagesto the heart and blood vessels to control heart rate and blood pressure.

    If this system isn't working properly, as often happens in ME/CFS, blood pressure may fall on standing, along with a decrease in blood supply to the brain - which quickly affects your ability to stand up, which is called orthostatic intolerance.

    This can be assessed in the surgery by checking blood pressure in relation to posture, or by what is called a tilt table test in hospital.

    Again, there are drugs and exercises which may help, especially if symptoms are more severe.

    So you really do need to go and discuss what is happening with your GP because while your balance problem may be related to ME/CFS - as I've briefly described - it could be due to another problem that has nothing whatsoever to do with ME/CFS.

    In which case you may need to be refered to a hospital ENT department - who are the experts when it comes to assessing and treating dizziness, vertigo and balacne problems.

    Video of the Fukuda stepping test for vestibular dysfunction:

    Romberg test for balance:

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    Last edited: Feb 13, 2017
    PatJ and trishrhymes like this.
  3. Sing

    Sing Senior Member

    New England
    My GP carefully checked the nerves in the bottom of my feet and toes, at first for sensation and then for my awareness of position. I came out especially poor with the latter and do have to be extra careful about maintaining balance. I do sway some and have to work to correct my position. I have marked trouble with hypotension and when this is worse, my balance trouble is worse, but my sense is that ANS trouble and hypotension doesn't account for all of it. I could be wrong. I have tested out as having Small Fiber Neuropathy too. Could this be part of the balance problem?

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