Forum

CFS/ME Group Therapy

I finally started the treatment suggested by a Neurologist back in November!

Yesterday I went to my first CFS/ME group therapy session and I have to say that I’m quite impressed. There are just over ten of us in the group, run by a Specialist OT. An interesting point she made was that CFS is on a spectrum of disorders with Fibromyalgia (pain symptoms) one side and FND (functional symptoms) on the other. The course is run from quite a holistic viewpoint, which made me very happy. It is just a shame that such an excellent NHS resource is so under-supported. Only ‘2.2’ trained staff in Lincolnshire!

I have a relaxation disc (small donation made), an activity diary to keep, an information booklet for me and a separate one for my relatives/carers. The information is clearly presented and makes sense! Getting to the course means that I have to book an on-demand bus service a week ahead, for my 2 1/2hr course, and it makes for rather a long day.

In other news…not long to wait for my second neurology appointment, which I hope will be able to clarify my diagnosis one way or the other. I’m appealing my PIP decision soon, just need some supporting paperwork from my GP and OT. My mobility scooter is making a positive difference and my OT has told me to look at it as something that enables me, at the moment (I was worried she’d reprimand me for getting one!) and I’ve just hired a cleaner to do a couple of hours every other week. I was really struggling with housework.

Have any of you had experience with CFS/ME therapy?

Has anyone else here had a diagnosis of Chronic Fatigue?

hi

i dont have CFS or ME but i know quite a few people who do.

they go to the hydrotherapy and gym sessions that are run by bolton neuro voices, a fab group of neuro physios who really believe that hydrotherapy and gym sessions can and do help people with neurological conditions.

we are all agreed that it is good to meet people with other neuro conditions.

glad it seems positive for you.

it is a lot better doing physio in a group because it helps me to keep up with it.

good look with PIP

carole x

Anon - I’m interested to know who here has CFS alongside MS or being as yet undiagnosed. This forum and the private FND group are my main sources of help at the moment. I’ve looked at a couple of CFS forums but haven’t settled in quite as well there. Plus, I need to restrict my time on the internet in preference of real rest time :wink:

Carole - my CFS group is a mix of education, relaxation training and gentle exercise. I did aquanatal when I was expecting but currently, the thought of changing and drying off is tiring enough without the excercise! I used to have so much more energy and it is often a nasty surprise when I find I have difficulty doing that which I used to do without thinking. Thanks for your replies.

Iv got fibro, well was told it was over 4yrs ago. But I believe it’s more than that now, so hoping to see a neuro n see if they can look down the MS route too.

Saw my GP yesterday and he did a sitting and standing blood pressure test, which was fine, so that’s ruled out Orthostatic Intolerance. He’s also clarified that I have CFS rather than ‘ME’ (pretty much the same thing but my OT said last week that medical professionals prefer the CFS term. Bottom line is that the cause of my problems has still not been identified. Off to my CFS/ME rehab now. Lovely sunny day, eating lunch by a river. I’m feeling hopeful :slight_smile: