Has anyone had any success with treatment?

I was diagnosed with CFS/ME while I was at university and and now some 4 years on, like most people it seems I was offered no treatment. I have found holding down a normal job almost impossible as I become overwhelmingly tired and therefore can't concentrate/function, and a cold/flu will usually shortly follow and I have to take time off. Is there any real treatment available? And does any of it actually work. My main symptoms are fatigue, muscle soreness, sleeping problems, digestive issues and brain fog. Any recommendations would be most welcome. There seem to be a lot of suggestions but has any of it actually worked for anyone. Thank you for you help.

[ukmsmi4]

Hi. Your symptoms and situation sound similar to mine, although I am older and had worked full time for 30 years before I went off sick, like you, just over four years ago. Like you I was finding it difficult to work with very much the same symptoms but particularly the constant waves of fatigue and brain fog. I was finding more and more I had to write things down or I would never remember how or when to do them, even the simplest tasks. It's quite frightening when you know you are a reasonably educated person with many years experience but you can't remember even the simplest tasks.

Sadly it is unlikely that you will have been offered any real treatment because to a large degree there isn't any. That is partly because of the nature of the illness and partly because the medical profession don't actually know exactly what the condition is. Difficult to treat anything if you don't know what it is you are trying to tackle. Hence the condition is largely about self help and managing the condition yourself.

That said there are a few methods of managing ME/CFS available. Pacing is very helpful if you can get the hang of it. Avoid stress as much as you can, and where you can't try and develop techniques for dealing with it. Similarly try and avoid unsympathetic and negative people as much as you can. They will only bring you down and you need to stay as calm and positive as you can muster.

There are books available on the subject from your local library. I found one called Chronic Fatigue Syndrome - the Facts by Frankie Campling and Michael Sharpe which I have found very straightforward and helpful. I managed to get that one on prescription via my GP which means you get it for around 10 weeks which helps when concentration is difficult. Just ask your GP next time you see them. There is a lot of info out there but be careful to go for the scientifically and medically approved information (particularly on the net) because there is also a lot of bunkum.

One of the other main methods out there is graded exercise therapy. You will read much about this ranging from it being helpful to it makes things worse. Personally I had an epiphany about 18 months in and realised that I wasn't going to get better by waiting for it to happen so I decided to do something about it myself. I got to grips with exercising and eating healthily. It did work for a while. I lost three stone and started feeling better with more energy. Sadly I think I was my usual bull in a china shop self and overdid it and ended up having a big setback. I also had a series of setbacks for several other reasons and now find myself struggling to even manage basic things again let alone exercise. So it did initially work for me but if you do try it be very careful to listen to your body and take it at your own pace or you will pay the price. In fact be careful to listen to your own body with or without exercise.

If you get offered anti-depressants by your GP, don't do what I did and hold out because you don't like drugs. If your GP thinks you need them, give them a try. They can help with sleep and having a positive mood and at my age they also help manage some symptoms of the menopause. But it is better to try them as soon as your GP recommends rather than waiting till you absolutely need them like I stubbornly did. Like anything else if they don't work for you try a different one or just move on.

I let myself get so bad that my GP also gave me the details of Let's Talk who can help with depression. Through them I have been placed on a CBT (cognitive behavioural therapy) course specifically for people with chronic fatigue so hopefully I will understand a bit more soon. Though the course is not until September.

I think overall it is about seeing what you can find, deciding what relates best to you (your condition, your circumstances, how you generally approach things etc) and giving it a careful try. It might work it might not. Just learn from it and keep moving forward.

Hope you can find something useful from that. Remember, listen to your body, stay positive and keep moving forward. It's not going to happen on it's own, you have to take control.

Good luck.

Margaret.xx

[Calliepet]

I had very similar problems to the ones you describe. I agree with ukmsmi4 and would add:

1) Pacing is the number one help, if you can keep within your energy envelope the flu like symptoms stop. I kept thinking I can't possibly do any less than I am doing but I slowly learnt - never stand if you can sit, never sit if you can lie down, hoovering can be done every 3 months etc.

2) Understand the role of adrenaline. I think when we run out of energy we switch on adrenaline which causes all sorts of things and can make you think you can do more than you can safely do. hfme.org/adrenalinesurgetip... gives lots of info on this.

3) I recently read a study which eplained why we don't produce serotonin properly which explains why we benefit from SSRI antidepressants (Prozac etc.) I have been on a low dose for years and I find it helps.

4) I also use Amitriptyline to aid sleep - again a low dose 10mg or sometimes just 5mg I think it is the adrenaline that makes getting to and staying asleep difficult

5) I do a cheap,version of Sarah Myhill's methylation protocal. I use similar supplement products (usually Swansons) that I get online I think the cheapest is HealthMonthly. It takes some checking to make sure you are buying exactly the right thing. Docotr Myhill's website has a load of free info too.

You slowly build up a toolbox of things that help and once you get into an upward spiral things can change. I would also make sure the doctor has tested for other things it might be like Thyroid, Lyme disease, Low B12 levels three will be a much bigger list online somewhere. Maybe a sleep test to check for sleep apnea too.

I recently tried hyperbaric oxygen treatment for 4 months via the MS society. I found it lifted my mood but the time and energy it took was not really worth the benefit.

That's all I can think of at the moment. Hang in there it can get better.

[Hidden]

I became ill at university - that was 21 years ago. I know a lot of people with ME who have tried A LOT of different things. Very few of my friends have recovered over the years and I cannot attribute their recoveries to anything in particular. I suspect that most recoveries are spontaneous rather than caused by any kind of treatment.

The statistics are that most people who recover do so within 5 years of onset. It is very important that when people become ill they put their lives on hold and focus on becoming better. Of course, this is easier said than done... but, as Margaret has already mentioned, pacing and avoiding stress seem to be key.

There is also hope for the future as a phase 3 clinical trial has just started in Norway (Rituximab). It may not come to anything but phase 3 trials are to be taken seriously as they are the key for approval of any treatment.

[Mari66]

Exactly the same happened to my daughter but thankfully we found the cause, please see dramir.com in Putney and stories of ME, know it is hard to believe but he has found the cause and is rectifying this for many people. Know how awful it was for daughter but she is now back at uni and has a full time job in holidays and all symptoms a gone. I wish you all the best

[ladybabe]

hi there, I'm really sorry theres not much that helps. I was on gabapentin for nerve pain, for a while but it stops working after a while. I have just got back from holiday and ginseng has been suggested for brain fog. I haven't tried it yet, going to my gp on Thursday so will speak to her. I will let you know. Barbara

[Hannah2]

Hi Jennifer, was told 5 years ago that I had 'classic chronic fatigue symptoms, prior to that i assumed it was still post treatment fatigue - having had chemo. in hindsight I probably developed it 7 years ago when I tried to return to work after 2 years off on sick leave due to cancer treatments.

The medical profession don't seem to know what to do with us! I'm given pain killers for muscular and bone pain, peptac peppermint for nausea and offered anti-depressants - even though I wasn't depressed - I was so pleased to be alive after the aggressive cancer I had!

There is a herb called Guarana that I find helps with the fatigue, but it is acidic to the body and I try to follow an alkaline diet as I've already had 1 recurrence of cancer. Meditation can sometimes energize me a wee bit, but if I push myself too far, rest seems to be the only cure.

Don't believe the advice you may be given regarding 'graduated exercise', we all need a bit of course, but too much also brings on my fatigue. short walks (not challenge walks like i used to enjoy) yoga or Tai chi are gentle and help to keep us mobile.

There is an alternative theory that CFS/ME is caused by the immune system being on constant 'on' mode, even when we don't feel stressed and techniques to 'switch off' are meditation, tapping techniques on pressure points on the body, while thinking of feeling better, being calm in mind etc.

You might like to google the Rowan Centre, Suffock, an alternative treatment site that claims to be able to teach these techniques.

All the best,

Hannah