Is it normal in ME to collapse?

[SarahG11]

I've recently started being investigated for ME and over the last few weeks I have been collapsing, losing all use of my arms and legs, my face becomes slack on the right side and I am unable to speak. I am like this for around an hour, completely unable to move, and slowly things start to work again. However full recovery from it can take up to 36 hours. I have also noticed since these episodes have started that when I become more fatigued that usual I develop a tremor in my right arm/hand, the right side of my face droops and my right leg becomes pretty useless. Is this normal in ME?

[Dr Charles Shepherd]

Sarah

One of the very characteristic features of ME/CFS is what we call orthostatic intolerance (OI)

This means people have difficulty with standing and may feel faint, dizzy or sick when they change position to standing or try to stand upright for a long period of time

OI is related to problems in what is called the autonomic nervous system - a part of the nervous system that controls pulse rate and blood pressure (which may fall to much when moving from lying/sitting to standing) as well as other organ systems (including bowels and bladder)

We have an MEA information leaflet that covers OI in more detail - along with how to manage orthostatic intolerance and hypotension

However, what you are describing is something rather different and more severe. So it clearly needs to be properly investigated - either by a neurologist or by referral to a hospital based ME/CFS clinic

There is a full list of UK hospital based referral services for people with ME/CFS on the MEA website: http://www.meassociation.org.uk

[SarahG11]

Thank you Dr Shepherd for your very quick response, I'm at the hospital clinic on Monday and will tell them about it then.

[mary lou]

In my early days of my illness I collapsed quite abit. I was tested for tia's then referred to a neurologist. I still find this can be a problem when I get too tired of I move around too quickly.