cowsrockAdministrator10 years ago

Control, knowing when to rest, pacing yourself, when your feeling good that is when you do the housework, I do push myself a lot though pain, it does come back a bite me me some times, but not all.

stevespoc10 years ago

I am just about to start Homeopathy

Acupuncture helped but only lasted a couple of hours

budgiefriend10 years ago

I should have marked Other also on mine. IN addition to Progressive Muscle Relaxation, Meditation/Relaxation, and Counselling, I have had acupuncture, Thai massage therapy, and some CBT.

I had the Thai massage in the first year after I was diagnosed. It was 2x a week and very costly. It was also horribly painful. Along with it I had 2x a week acupuncture in the Chinese tradition from a highly skilled doctor. Again costly, but it did seem to get me back to a significantly better level of function and lessen my pain. However I cannot afford this now that I am divorced, and so have had only what the NHS could provide.

NHS acupuncture is not very much like what I had privately and the NHS acupuncture sessions were not helpful in the least for me--too little attention to how it was done and too few needles, with one acupuncturist using needles that were far too big and just sticking them into me in a seemingly hurried and less than careful way, In both courses I had through the NHS, sessions were spaced too far apart, and only for a short period of weeks. I think this is wasted money when given to people with ME/CFS and Fibromyalgia as it currently is offered.

CBT? I think some of what it does, if properly administered by a compassionate and understanding therapist who is experienced with these illnesses and believes what patients tell them, might be beneficial to some people. But I suspect for many like myself, who struggle constantly with public presumptions about the illness, family and friends' lack of understanding, and their own fluctuating feelings of despair, hope, frustration, and self doubt, CBT is like a match to a flame. I believe it is harmful overall, and that extreme caution is needed when any treatment is give which tells people to stop monitoring their symptoms or to carry on and disbelieve what they think their body tells them when it is saying to stop and rest.

The meditation and counselling helped only to the extent that they enabled me to accept what I cannot change, and to stop and feel my body and to be kind to it and to myself mentally and emotionally too, after I had been just trying to carry on and block it from my mind.

Sometimes I think feeling what you are feeling is much healthier (and by this I don't mean going without pain meds, but the pain and exhaustion you can't manage with pain meds), than just gritting your teeth and trying to distract yourself endlessly from it. What I found was that in doing that, I was also blocking important signals and sensations like when I needed to go to the toilet, until I had bladder pain or even an accident!

Or at other times I would avoid turning out the light and trying to go to sleep, so would stay up all the time, because when I tried to sleep, I had nothing to distract me from the intense pain I am in.

So, for me, mindfulness meditation and a mental shift to a sort of serenity that accepts what cannot be changed, have helped me cope. and in my heart I believe this is the most valuable thing I have done, apart from taking prescribed pain meds. These are not easy mental states to achieve and I think it is not possible to learn to do it whilst in a massive flare-up.

However, if one can try them in the simplest and smallest ways first and especially in good times, create a memory of how these states feel and the peace and pleasure one feels with them, then little by little, one can try to bring those to mind during painful bouts. There is no way to do it every time, but each time it is possible makes a big difference.

How I wish I could go back to the excellent Chinese doctor who made me cry and nearly scream with his Thai massage and many needles, but who got me feeling and functioning better for a period of a couple of years.