Chronic Fatigue Syndrome - Assessment

(8 Posts)
Furries Mon 20-Jan-20 12:04:51

I have an NHS referral to a CFS clinic this week for assessment. Just wondering if anyone here has had this and what I can expect to gain from the appointment etc.

OP’s posts: |
Hotelfoxtrot Mon 20-Jan-20 18:05:55

They will teach you pacing and offer general advice for how to manage your symptoms.

Egghead68 Mon 20-Jan-20 19:38:06

I expect they will just assess you and then decide whether they can take you on for treatment.

lisag1969 Mon 20-Jan-20 21:43:40

They will assess you. Ask you your symptoms and ask what do you want as an outcome.
I have CF and fibromyalgia. They have put me on the waiting list for Pilates for people with pain. X

Furries Tue 21-Jan-20 13:00:31

Great, thanks all. Have waited so long to get this referral. Think I’m pinning my hopes on being told what can be done to get my old life back. It sucks feeling like this!

OP’s posts: |
Absoluteunit Tue 21-Jan-20 13:09:13

I had an assessment about 10 yrs ago so it may have changed...They just asked me loads of questions and I was diagnosed at the end of the appointment.

I was given CBT, physio for graded exercise and saw an OT for advice on pacing.

The exercise wasn't helpful for me but the combination of CBT and pacing helped a lot.

10 yrs on I'm fine 90% of the time. I just need to be a bit careful not to overdo things. So if I have a big thing on I make sure I rest in the evening etc and be a bit selfish about me time.

Good luck OP smileflowers

Furries Thu 23-Jan-20 20:05:31

Thanks again all. I’ve had my assessment, been diagnosed and am going on a waiting list for OT - they’ve warned me it could take a while to get an appointment. They don’t feel CBT is needed at the moment, but will review again at some point.

Don’t feel quite so alone with this now. They were shocked that I hadn’t been referred to them sooner.

@Absoluteunit - with regards to the graded exercise not being good for you, how was this handled? Are you forced to continue with it, or are you allowed to stop if you feel it’s making you worse?

OP’s posts: |

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OvenGlovesWillTearUsApart Thu 23-Jan-20 20:51:23

I used the service for about a year. I went to about 3 sessions with the help of my (now ex) boyfriend, then had monthly follow-up phone calls. I didn’t find it all that helpful, personally, mostly because I didn’t really have the energy to engage in the first place. I found it really tough, and I ended up feeling really useless and frustrated for not being able to follow the (fairly arbitrary in my opinion) suggestions.

I have quite crippling depression and anxiety as well so that probably complicates things somewhat.

I think it’s great that it apparently helps some people though.

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