MESH cornwall Forum

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Hey,

After finally getting fed up with my local doctors and getting refered to Prof Pinchings dept, i figured i'd sign up on th MESH forums aswell.

I'm Nick 35 and in Cornwall. I was diagnosed with ME/cfs about 8 years ago now. the doctor explained that she didnt believe in ME but if she did then that is definatley what i had....

That was my first of many negative experiences with GP's. Since then i have slowly done away with making doctors visits as i always come away from them somewhat disheartened as if i must be a little mad in the head to suggest my severe tiredness and confusion is an illness.

My illness tends to come and go where i may be fine for months as long as im careful and then over a period of a few days i can feel a knowing ache or my eyes start blurring or i get severe numbness in my legs along with the usual fatigue. having to prop myself up against a wall to do the dishes is my latest telltale signSmile.

Im lucky that im self employed and limit myself to 15 to 20 hours a week. I occasionally manage the gym or walks etc but they are often responsible for huge relapses. i havent had any severe confusion or "brain fog" in a while. it used to get so bad that i couldnt speak coherently.

Guilt was a big problem for me for a long time thinking that i must be just lazy or unfit or something and my siblings not understanding was hard to deal with.

Staying inside and not being social led to a number of anxiety problems and i guess a bit of depression however, i seem to be really on top of those negative aspects these days.

Im lucky to have a partner who is very patient and understanding (plus a degree in counselling helps lol).

other silly or maybe important things ive noted are

*i take omeprazole for jumpy acid and if ever i stop taking it i ALWAYS get my ME/cfs symptoms back for weeks and weeks

*I have signs of having had glandular fever but have no re3collection of this

*illness started as severe flu after wild camping in the lake district however the doctors tell me not to even consider lyme's disease as its really rare.( this i have tried fighting as prior to thgis i was an outdoor instructor and spend many weeks of a year in wales/scotland hill walking and camping etc etc).

*I disagree that CBT is effective in treating ME and have found the easist way is to start by doing NOTHING and then slowly create a routine and add to my daily routine and just monitor how im feeling.

Anyways. this was only meant to be a quick introduction and a chance to say hi but guess im feeling vocal today.

Its great to have found a forum linked to this and i really cant believe i didnt think about looking for one before.
Hi Nickyboy,

I am pretty much same.. 35yo living in Falmouth, diagnosed 8 years ago, was extremely active before this and was in to all kinds of sports. I have managed to hold down jobs for the duration but only just, and have decided to take the summer off this year to focus on gettng well once and for all.. I have tried CBT, Lightning Process, Mickel Therapy, Reverse Therapy, EFT, Optimum Health Clinic, hypnosis, anti-candida diets, nutrition, etc etc etc and have read dozens of books on the subject...I've even completed an M.E./CFS Practitioner training course with the Optimum Helath Clinic.. I know I am almost there except hectic work schedules keep me from building up any energy reserves, hence the summer off. Hopefully this will be my opportunity to completely recover.

If you want to share any info I would be happy to chat. I live in sunny Falmouth.. give me shout.

Cheers

Gary
Hey Gary!

Sorry it took time getting back to you. Password issues on here combined with man flu etc etc.

Wow, it looks like you have tried a lot of the therapies. i think that due to my bad experiences with doctors and then CBT i kinda put little more thought in to treatments other than basic pacing.

Hey well i'm a local falmouth guy too so maybe have a proper convo about it all sometime.
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