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.

Wednesday 19 June 2013

MY Aunt has fully recovered

My aunt is an oncologist in South Africa. She became ill several years ago. She was so ill she had to have a chair lift fitted and my uncle once commented that if she were an animal we'd be merciful and put her out of her misery. Luckily he didn't because she made a full recovery in only two years!

She worked with a physio in SA. She started by making herself walk one metre a day. She maintained this and then when stable increased it. She did this until she could walk up her own hallway. But the thing that she thinks made the biggest difference was the water therapy. This was what the physio really helped her with. She started by spending 1 min in a warm pool three times a week. When she had maintained that for a month with out getting worse she upped it by a minute. Sometimes she maintained that time for a month, sometimes she maintained it for a week depending on what she and her physio felt was right. She says that when she started this it made the biggest difference. She would walk in the water until she got to being able to stay in the water for 15 minutes. Then she started to swim alternate visits. In this way she has made a full recovery. She is the fastest recovery the physio knows of but she has seen a few other people fully recover using this approach.

I think the water does two things. If you are experiencing Orthostatic Intolerance where your blood is pooling in your feet and the lower part of the body - and some doctors think 80% of us will experience it with all its other symptoms - the pressure, the weight of the water is helping to close the blood vessels down etc and push the blood up into the rest of the body. Secondly, I think that because the brain, the nervous system, etc is in freefall the sensation of the water on the skin, combined with the pressure confuses  the brain. It means the skin is sending different signals to the brain about what it is sensing, distracting it from sending messages like tingle, thrum, adrenalin release, heart rate speed etc. I will blog again about my experiences of water therapy. I am finding it very helpful.

Wednesday 12 June 2013

Subjects coming up

Let me know what you want to hear about...

Gupta Amygdala retraining - is it worth trying? I tell you my experiences

My partner had M.E for 16 years, now she's 100%, but my aunt made a full recovery after two years - how?

Pacing - how do you do it effectively?

Hydrotherapy - what is it? How to do it? And what a big difference it makes?

Does diet make any difference?

Orthostatic intolerance - never heard of it? Up to 80% of us are affected by it!

Are you and us and them-er?

What does the success of the cancer drug indicate about M.E?

Tuesday 11 June 2013

Welcome to M.E



Firstly, I hate the term chronic fatigue syndrome. I was a parent for four years prior to hitting the M.E wall. Being a parent is to be chronically fatigued - having M.E is very different. If only my single symptom was fatigue. If only the fatigue I experience as a baseline of my illness were like any tiredness I have ever experienced. As you will know if you are reading this because you have M.E it isn't like that.

In the run up to hitting the M.E wall I was experiencing periodic symptoms, days when I felt like I was wadding through treacle, days when I couldn't understand what was going on and felt scared. I had had three major abdominal operations and never quite recovered from the last. I kept pushing through the treacle, but one day I hit the wall. I couldn't get out of bed. To move felt like every cell in my body could not work, it was very challenging to even get to the bathroom, my body felt alien and over taken with weird and strange sensations. Over time I began to unpick what was going on and differentiate between symptoms and what was going wrong, but not why.

I have observed my body and my illness for over two years now and I am convinced that what is going wrong is in the brain. The brain controls everything, it controls whether adrenalin, sugar levels crashing, pain pathways, nerve sensations are switched on or off. There is no pathology in the organs involved in these symptoms, my blood sugar levels are recorded as on the floor some days but the endocrinologist can't replicate this and there is nothing wrong with my pancreas. My blood pressure is high/low for no reason, and my heart can race, jump do very strange things, but there is no pathology in the cardiac system of my body. My body can tingle and thrum as if every single cell is vibrating, yet there is no nerve damage or problems like with MS. So for these symptoms to randomly come and go means by brain is instructing the organs to behave in this way. There is something wrong with the brain not the rest of the body.