CAN SOMEONE HELP AT ALL? CHRONIC FATIGUE SYNDOME / CFS

As is mentioned on many web pages about CFS, the challenges that CFS patients face are hard to understand by healthy people. One of these is the problem that this disease is quite invisible to others, yet if you'd follow us through the day or week, you'd see how much fun we have lying in bed. We didn't choose it to be that way, it just is.

I myself did 500 km cycling during one holiday week in July. I had neither muscle pain nor strong fatigue during that week, but boy I got sick afterwards. I was nearly comatose for two days, and thought I would not recover properly for 10 days. After that I have been very cafeful. Now I cannot cycle even a short distance to work without getting ill. So how come I can cycle on holiday and then crash when I get back home and to normal life? According to the CFS specialist I'm seeing, this is indeed possible: your high spirits /holiday, etc. can keep you from crashing for some time, but eventually you'll have to pay, and the price is heavy. I do not have strong joint or muscle pains, just a persistent elbow pain which is gradually spreading to my fingers.

By the way: graded exercise and CBT are total nonsense and have even been shown to be harmful to patients. As my own example shows, getting ill is not related to physical fitness in any way. That means you cannot improve your health by trying to improve your fitness, unfortunately.

Reddevil1968, Although I do not have CFS, I would like to tell you a bit of my own personal experiences. 3 years ago, I was in the similar mind set to yourself as I had never heard of the condition. I met someone online and we started to message each other. She had had severe ME for over 14 years, something I initially couldnt understand as she always seemed to be very bubbly and full of energy when I spoke to her. Even when I started doing some research I wasnt sure about it.

After a year of being in contact we met each other and ended up dating for a while. Not dating in the normal sense, rather I used to go up and we used to have dinner at home and then she went into a rest for a bit, then we spoke for about 30 mins, then back in a rest etc... It was not something I had ever experienced before. What people without the condition take for granted can be a great deal for an ME sufferer e.g. after she brushed her teeth, she felt exhausted and had to rest for 30 mins before being able to get dressed and then she would have to rest again as she would have used up all her energy getting dressed etc...

Anyway, quite often we would get carried away and talk for more then her allotted time and she seemed to be fine, oh boy was I wrong. The next day she would, as Avocado mentions, pay the price and would crash all day. Quite often she would try and do more than she could handle by going into adrenaline mode, paying for it after.

I have seen her when she has been in a bad way and I really do feel for her. Due to her bubbly-ness and wanting to do things that non sufferers take for granted, she always does more than she can physically do, so people may initially think she is fine but they do not see what happens after as a result.

She has had days where she can walk for 3 mins to her parents house and also days where she cant even get out of bed.

I have met a lot of people with ME in my own little crusade to see what I could do to help her. Not everyone is the same, not everyone has the same symptoms. It is a very complicated condition indeed. I would tend to agree with Avocado in the fact that trying to improve your fitness will not necessary help. I even met a poor little 13 year old who could not handle the sunlight and could only get out of bed for 1 hour a day so would spend the whole day in a dark room, how her parents cope, I do not know.

I came across a video which was produced by a mother and brother of a ME patient especially to help educate people as to the condition. It is an amazing documentry that may help you understand it a bit more. The film is called Voices from the Shadows and a link to the website is http://voicesfromtheshadowsfilm.co.uk

Please have a look at the film and it should give you more of a realistic insight into ME. It is free to watch online.

I used to be a sceptic when I first heard about ME but now, after a bit of research and my own experience with the ex, plus meeting other ME sufferers, I realise that it is not a nice condition to have and I would not wish it on my worst enemy.

Looks can be deceiving, smiley faces can hide a multitude of issues and its like the old saying, never judge a book by its cover.

I am a male 48 years old from India ME/CFS patient suffering from upper back ache, palpitation, always feel tiered for the last 30 years since 1983 when I was doing my graduation. I am married with one 13 years daughter. I took treatment from many psychiatrist. One psychiatrist trained me self hypnotherapy. I was better for sometime. Then few years back again consulted one more psychiatrist. As per his prescription I am now taking medicine and practising self hypnosis. I am managing my life somewhat. I could not satisfy my wife. She expects me to be a normal person. But I could be. I accept these suffering and bear it. I have no hope to get cure. I pray God to help me to bear these pains.

Joerathinam: It is not possible to cure a neurological disease by psychiatric treatment. CFS/ME has been recognised by the World Health Organisation (WHO) since 1969 as a neurological disorder with the code G.93.3.

In some parts of the world, LDN (low dose naltrexon) is being used effectively as a treatement to CFS. The correct dosage would be 1,5 mg twice a day. For some people, even a smaller dose may be enough, whereas in larger than 4,5 mg/day doses this medicine becomes ineffectual for CFS patients. I hope you could try this medicine in your home country. Yet it will not work for all patients, unfortunately.

Avocado: Thanks for information and suggesting to use LDN. Now I am taking Venlafaxine 187 mg per day. This medication is a selective serotonin and norepinephrine reuptake inhibitor (SSNRI), prescribed for depression, generalized anxiety disorder, social anxiety disorder, and panic disorder. It increases serotonin and norepinephrine levels in the brain that help to maintain mental balance.

I have M.E. it is a very dibiiltating illness. I do go on my bike but not too far. I need to rest afterwards. I rest every afternoon and go to bed early. If I over do things like when I go on holiday it take me some time to get over it. I do not use my M.E. as an excuse for not doing things, I just suffer afterwards. I try and pace myself it is the only way I can cope.

Most people do not understand and I thnink they think I haven't got M.E. but I assure you I have and I which I hadn't

Alison

Hi

I have been suffering (literally) with CFS for several years now. I'm a twenty something year old and I like to keep active, although finalising my PhD has eliminated any chance of physical activity recently.

Prior to that I would play football, squash, basketball and mountain bike at the weekends. These are quite physically intense sports. I have no problem keeping up during the activity itself. In fact, I consider myself to be as fit or fitter than some of my contemporaries. However, the payback was pretty severe. A hard cycle in the morning meant I was pretty much wiped out for the rest of the day and for sometime the following day. There was no pain, but fatigue and the feeling of being able to sleep for a whole day or two manifested shortly afterwards, along with brain fog.

For me there's a definite trade-off between staying in touch with friends and keeping fit and suffering the repercussions as a result. Personally, I'm prepared for some occasional suffering for a good day out with friends.

I am a sufferer of CFS. I came from an athletic background training 3-6 hours a day competing in endurance and triathlon events. I was quick too! My training changed where instead of recovering within a few hours became a few days then a few weeks. I ignored all the signs and went for a 120 mile spin with some friends on the road bikes. I woke up that morning and the rest is history. My worst point was, I was unable to talk or sit up in bed. After 3 years I am limited to around 20 metres and out of breath after 5 metres. I still have my muscle definition except the muscles do not work and feel like they are destroying themselves, literally pulling themselves apart. Lightheaded from talking from too long too. I used to go out and run that hard until I could not move for the pain or go swimming in icy lakes to get a kick out of extreme stuff. Now going to work and sitting in the office is extreme for me. Everyday I remain positive that I will get better and enjoy life with much restriction. If I did not my condition would be unbearable.