My daughter has chronic fatigue syndrome. It seems to have developed folowing Glandular fever 9 months to her first symptoms.
However after 3.5 years, the syndrome suddenly became very severe and caused disability of her arms and legs ( 7 months ago) . anybody else suffering with this?
thanks Bonnie123456
I have had ME/CFS for years. There are a couple of groups on Healthunlocked but unsurprisingly they don’t have many regular posts.For me it all started with a viral infection of the inner ear and whereas I have had long periods of reasonable health it is still there in the background. I now have address health issues so everything gets mixed together. Difficult to know where one starts and the other ends….
But happy to talk with you either here or via personal messages.
Thank you BevvyMy daughter is 23 and has had a severe flare up for the last 7 months . Pain in arm muscles that makes it very painful to use her elbows, so cannt feed herself or dress/wash.
pain in hamstring leg muscles too. All negative on blood tests and MRI elbow scan. Trying physio and painrelief.
Regards
Bonnie
It’s very difficult I know 🙁. Have you had any specialists clinic support. I have been fortunate in receiving this from 2 different clinics, both of which are no longer operating.I have never found physio treatment very helpful. Either in relation to CFS or a long standing back issue. Some years ago I had some wax treatments on my hands and I found that quite soothing. Also I sometimes have a bath with salts to relax sore muscles and joints.
Have you had any OT input? I had rails put up,in the bathroom to aid getting in/out of the bath. Also have bath board,plus some items in kitchen as aids.
Finally is your daughter claiming PIP? Certainly if she can’t feed herself etc then she should be eligible for some financial help.
Hi Thank you. Yes, we are seeking help with OT and trying to get pip. what specialist clinic 's ( what type of t.t ) did you find helpful.
thanks
Bonnie123456
Specialist ME/CFS clinics. Had sessions re pacing, which I know isn’t popular with some but for me it helped. Especially understanding the boom and bust cycle. Had group sessions with other patients, considering pacing, health and nutrition, coming to terms with having a chronic condition, meditation…..also had some sessions with psychologist attached to clinic because I struggled not only with mental strains of CFS but also have additional serious health issues so was useful to talk through things. I also had some excellent gp support.I would certainly ask gp about local provision for CFS. I have to confess am astounded at number of long Covid clinics that have popped up and the apparent acceptability of the condition which certainly didn’t exists when I was diagnosed with CFS. The conditions are extremely similar and I would actually argue the same…..
PIP can be a minefield to obtain. It’s about how condition affects you not what condition is. BUT is also about how form is completed! You really need assistance from someone like CAB to complete forms for the first time. There is also an organisation called benefitsandwork.co.uk that can be extremely helpful when completing forms.
Am happy if I can be any more help if you want to private message me.
Thank youRegards
Heather
How is she getting on? How did her ME/CFS start?
As a CFS sufferer I had a stroke on mother's day this year. It is thought I have FND (functional neurological disorder) interwoven with my CFS. It's making recovery slow and painful...but I'm hanging in! On the ward there was another patient exhibiting the same symptoms (also with a history of CFS/ME); she was diagnosed with FND and discharged. Do look in to this. I think its a complication of the central nervous system, and needs a referral to a neurologist. All the best!
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