M.E Recovery: Orthostatic Intolerance

Monday 24 June 2013

Orthostatic Intolerance

Some doctors - the ones that believe in ME obviously! - think that at least 80% of sufferers experience orthostatic intolerance. It means the inability to tolerate being upright, in particular standing. Standing or being upright causes you to feel increasingly worse and in me creates that driving panicky feeling that I must lie down, I must get flat asap. Recognise it?

My understanding of what is happening is that for some reason the body's blood is pooling in the lower half of the body. Our hearts are constantly pumping against gravity to distribute blood as evenly as possible throughout the body, if that isn't happening efficiently gravity pulls the blood downwards into your feet. So the brain is lacking blood producing an array of nasty symptoms. As you can imagine not enough blood to the brain could be why you experience brain fog, but it could also mean that your brain tells your body to release adrenalin, in order to make the heart pump faster in an attempt to correct the imbalance, making your heart race for no apparent reason, and giving you that horrible feeling of pressure in the chest and wired feeling. It can also be responsible for the malaise you may feel.

At it's most extreme a person will not be able to tolerate being upright and will actually faint and many ME sufferers when given the tilt test will momentarily pass out. The tilt test is where a doctor straps you to a table and tilts it suddenly backwards. Orthostatic intolerance is a recognised condition hence the existence of the tilt test, however it is not commonly recognised by GP's etc as making up the landscape of ME.

For me finding out about orthostatic intolerance has been enlightening as it makes sense of so much of what I suffer from and gives me the knowledge that the drive to lie down that builds after I've been up and about for 1-2 hours is not my imagination but something tangibly wrong with the function of my body. When things are bad with me I will feel the need to lie down sooner, when I've had some really good days - one or two so far - I don't get that sensation at all. For me I identify it as starting with a feeling of pressure in my chest that I associate with a release of adrenalin. I call this feeling adreanliny, but the longer I am upright the more symptoms build like a Tsunami that only I can sense building and building with that feeling that drowning is inevitable if I don't get flat and quiet soon.

Hope this helps some of you.

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Six Things I Wish I'd Done at the beginning!

1. STOP - if you haven't ground to a halt of your own accord then stop now. If are limping on and keep pushing at it so you yoyo up and down STOP. STOP & rest and find a proper schedule, learn to PACE, get other people to do as much as possible!

2. Not been frightened - I spent the first 6 months pretty terrified while I identified what on earth was my body doing now, thought about what if it were something fatal and believed all the M.E stuff that you mustn't move, that there is good reason to be frightened. This pushed my brain into further fight or flight mode. I now know I am not going to die of M.E. I am not going to damage my body if I do too much. The fear is more damaging than anything, but of course this isn't to say you or I can just push through it. That sadly, is simply not possible, but being terrified all the time that one is damaging oneself is the opposite extreme from pushing at it. As my aunt showed, from even a bed bound place one has to try to slowly build in movement else the body just gets iller.

3. Learn to PACE properly- I think this is the hardest thing to do and I have only learnt properly with the help of a SA physio who helped my aunt make a full recovery. I will be doing a detailed post.

4. Use meditation to both help your body/mind heal and to assist you in learning to cope with what is undoubtedly one of the most mentally challenging thing you will ever experience. And I put it top of my life above childhood trauma, infertility & miscarriage and near death illness. www.getsomeheadspace.com is brilliant and you can start with 10 mins a day for free.

5. Use water therapy. It sounds like hard work, it sounds counter intuitive and just another graded exercise. IT IS NOT. I will be posting about how to do this properly and the difference it makes!

6. Read Faces of CFS if you can get a copy to make you understand the facets of the illness and help you feel less insane. And Painful Yarns by Lorimer Moseley - available on Lulu.com to give insight into how the brain might be working against you!