My husband has a brain injury from RTA in April 2016. His formal diagnosis is PCS. His neurologist suggested approaching the Chronic Fatigue Syndrome service. Our GP was surprised to be asked to do the referral but willing to try. We met with the CFS service yesterday and he was told he presents as typical of someone with CFS and they will help him with a six month programme of support so he can understand and manage it better.
I'm posting this for two reasons. Firstly there might be people who are suffering with the same fatigue issues who haven't been signposted towards this type of support. And secondly to ask if anyone else has experienced this support and how useful they found it. xx
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gabbycat
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Hi there, I found the the CFS service extremely useful but needed to travel too far - Fareham - to avail myself of the full service. I was disappointed I couldn't participate in the 'Meditational Group' on the course but the OT specialist in Neuro injuries who was on the ball, agreed to meet me nearer to home (in Winchester). I still suffer with CFS but I'm much better able to manage (with pace and rest) and have found a level of acceptance now. More recently, last year, I was referred to a Neuro-psychologist (for fatigue management) who I found very helpful too. They compared the results of my mri which gave a better overall picture of the raft of symptoms I've been dogged with. It gave me the insight and acceptance which was long overdue, and put paid to others who might have thought "I was swinging the lead" when in fact, I had genuine cause for feeling so damn awful some days.
Chronic fatigue is a "rollercoaster", best way to manage it is to mindfully keep returning to your "baseline" to find your equilibrium and to 'gently' push those boundaries; not to exceed your capabilities and crash. I also subscribe to the Optimum Health Clinic (CFS), based in London. They send weekly updates and videos on the subject. Below is this week's useful gem!
I've used my local CFS service, nowhere near as comprehensive support as with some post concussion clinics I've found out about privately and the ones offered to very severely affected people very soon after injury.
Offer was a structured pacing programme to help me work out how much I could do without making symptoms mcun worse whilst keeping myself alive and washed and if possible working from home in a less demanding job.
Also offered mindfulness medication and peer group support.
It’s been a long time since I wrote that post. We have remained under the CFS service and a neurologist for migraines. All other support has stopped. The diagnosis was originally mild TBI which they say will have healed, developing into Post Concussion Syndrome which developed into ME. Saw lots of experts as we progressed through compensation claim and although they couldn’t agree whether the ME was physical or psychological in the end it made no difference. Now we just treat it as ME and no longer discuss the original brain injury.
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