CFS clinic

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CFS clinic

Postby Gingermama » Wed Mar 04, 2015 9:07 pm

My GP is referring me to a CFS clinic and I wondered if anyone has experience of it and if it helps?

I'm finding the fatigue really hard to handle. It's getting me so down and I keep getting so cross with my kids. The youngest is at that difficult stage of being ready for school but still has 6 months til he starts.

It's like every little tantrum he has is just making my life more difficult and more exhausting than it all ready is! Then I hate myself for feeling so negative about him when I love him and my other one so much. The eldest is better and will help me out but at 7 is still having tantrums of his own on occasion.

I'm so tired of fighting with them to tidy up, do homework, eat their dinner etc etc that I end up throwing my hands in the air and giving up, leaving my poor husband to do it.

Anyway I'm just hoping they can give me some strategies to deal with the fatigue now that the worst of the pain is being managed!
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Re: CFS clinic

Postby FluppyPuffy » Wed Mar 04, 2015 9:36 pm

I was referred to the CFS Service covering my area when I was given my CFS dx in 2012 and found it really helpful. For me, it involved something like 8 individual one~to~one sessions as I couldn't make it to the group sessions that they were running at the time I don't drive and my chauffeur/OH works shifts so couldn't guarantee being able to get me there each week.

We covered things like types of activity that we do, how to rest properly, bedtime routines, exercise and how to increase it and a host of other things. The important thing that I got from the sessions was how to allow for fatigue in determining what I can do, and working that into my daily activities and doings alongside allowing for the hurtys. Not always an easy thing to do, but it can help.

For me, it was very structured and ordered, an approach that we worked on because it has always been the way I have found I can work to my best.

My sessions were with a specialist physio who also had knowledge of FM, and altho FM was covered by a different team/dept, due to the way that the 2 conditions intertwine for me, some of the work we did included it.
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Re: CFS clinic

Postby natmac73 » Wed Mar 04, 2015 9:37 pm

Hi there...yes I used to attend a clinic...They give you advice on all sorts from pasing yourself, diet,relaxation exercises you can either have one to one or group sessions. ..It also helps just to talk to someone else ....They ask all sorts of questions about what you do in a day and what you would like to achieve. ..its about trying to get your life back or a better quality of life....understanding your condition and body..learning to cope x
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Re: CFS clinic

Postby Zia2014 » Thu Mar 05, 2015 2:39 pm

I was referred before my Fibro diagnosis and they turned me down because my main symptom at the point my GP referred me was pain - even though that is interchangeable with the fatigue! But I am attending a chronic pain clinic which by the sounds of it does similar, and it's so helpful.
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Re: CFS clinic

Postby lynlyn1212 » Thu Mar 05, 2015 7:30 pm

I did a 10 week chronic pain and fatigue management course at local hospital which was a group of 5 of us on a Monday 10-2 or 3pm. We had a key worker each who spent 20-30 mins 1-1 time, physio/exercises, class room type discussion and activities and came away with a folder of learning and ideas to support us after. It was helpful and they were really nice. Unfortunately despite that I still find everyday life as challenging as it always has been. I do make more time for me now though as I didn't before. You have to be prepared to put the effort in as others in my group just seemed to be a bit negative and didn't do the homework tasks between and seemed to think they would be magically cured at the end. Surprisingly it didn't work for them!?! I have benefitted a bit but I have found my chiropractor has done more for me but that might not be an option for all. Good luck.
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