CFS

[xkathx]

Hello Everyone, I have suffered from M.E/CFS for about 15 years and very badly for the last 6 years.I am 71 and I am looking forward to picking up and sharing tips that can help us all to cope with this terrible disease.

[Cowern]

Hello xkathx bit like u been suffering for 30 years, stress makes it worse and although I love the great outdoors, this year has been particularly bad because of the bad weather. I find it helps me to," act the way I WANT to feel" . try putting on some cheerful music u can sing along with and get your knitting out for an hour, its productive, positive and relaxing, so u don't feel guilty about what u can't do!😊

[mitty999]

Hello. ME is indeed a terrible disease. I have had it for many years. I have written loads on the subject. One very important point is not to exert yourself. Do only enough that does not cause serious repercussions . As this illness starts in the brain and causes havoc in all your organs. The brain appears to not allow your body to feed your entire body with oxygenated blood. In fact there is not enough blood to manage anything but basic life. Force the body, your organs will hate it and complain , you feel awful. The more you do the worse you will become. Please read The Hummningbirds` Guide to ME. There is absolutely no disease called CFS. This was invented by the USA. CFS is just a symptom, not a disease. People with Polio, RA, food poisoning suffer from CFS, it is purely a side effect of numerous diseases. What you have is Myalgic Encephalomyelitis also called ME.

Please write if you get desperate. I will try and help.

Please realise that most doctors know little or nothing about ME. It started in Iceland in the late 1920s. There in Iceland it killed quite a few people, there was little help and it was bitterly cold.

For a long time it was thought to be a kind of Polioyelitis. It presents very like MS and shares many symptoms. ME however seems to stand out because of this post exercise fatigue. Pain is very common and can be terrible. I take Morphine, Ibuprofen, and Paracetamol. This is a cocktail and it works !! Also protects you from taking too much of one drug.

Rest as much as you can, lying in bed is the best. You will find I hope that you can build up enough strength to manage time out of bed. But NEVER NEVER overdo things or you will pay for it : you will get far worse and inhibit the chance to feel better.

Hope this helps a bit. Mitty9

[myhealthneeds]

Hello, I support people who have ME/CFS in South Wales and by email elsewhere. We run a support group but most people cannot come to it, of course!

Planning a Concert on May 13th in Cardiff during ME Awareness Week with Cardiff Rock Choir and other musician.

Let me know what you want to know and whereabouts you, near to which City.

All the best,

Miriam

[Karenlynne]

Hi xkathx. Sorry for delay. Not always well enough to email even on tablet. M. E is supposed to be an autoimmune disorder. Sarah myhill book chronic fatigue syndrome mitochondria not hypochondria explains the theory and gives a lot of brilliant advise. I had a mitochondria function test which measures the amount of mitochondrial function in your body through Sarah. Mine is 0.09% of lowest of normal. Not good. A second test showed that I have insufficient mitochondria and those I do have don't work properly. Been on restricted diet.no gluten sugar and dairy products X 5 years. Bedbound 4.9 years!!! Now can just get to potty!!! Good days when no sleep followed by few very very bad days. Not sure if Sarah does the testing now. If you view ". I can't cope" I think. I've put all details re action for m.e addresses and any addresses I know where anyone may get tested. I do little unless no sleep!!! So I hope this helps you a bit. Horrible isn't it. Like you I'm at the older end of this life and retirement is no fun stuck in bed alone silent and in the dark most of the time. On bucket loads of supplements. Nothing helps though. Still got lots of praying time!!l All the best Karen

[xkathx]

So sorry to hear that you are mostly bedbound it must be awful for you, I bought myself a good recliner chair, expensive yes, but well worth every penny, I spend most of my day in it.I have come to accept the situation and believe that it is the only way to cope with this terrible disease.I now feel more contented than ever before.I will think of you and hope that you are in control too.lots of love and best wishes,xx