cfs/me

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cfs/me

Postby nikkinoo » Wed Mar 26, 2014 3:45 pm

I wondered if anyone who has CFS/me can tell me more about it?

I've been struggling with major fatigue, major cognitive problems, forgetful, can't concentrate, bad coordination, speech bad, can't remember words and what I was saying, seem to have constant headaches, dizziness, nausia which I take domperidone for but doesn't always help, I am so clumbsie too I trip, fall, walk into things all the time and drop stuff. Get sore throats and colds often and glands in my neck are often tender.
There is loads of other stuff too but apart from my pain I get these everyday too.

I have fibro but I wake pretty much every night, I never feel refreshed and struggle to stay awake during the day, I even fell asleep the other day watching TV and poured my cup of tea all over me!

I just feel it could be more than my fibro, and think if I go to the doctors they will just say its fibro.

Not looking for diagnosis obviously, but any advice would be appreciated. I have mentioned this to go specialist before but even with my meds its no better, also my pain has got worse over the last few months despite gabapentin 700mg daily taken in 2 300mg morn and eve and a 100mg in the afternoon.
Before you assume, learn the facts... Before you judge, understand why... Before you hurt someone, feel... Before you speak, think... This is my message to all who do not take the time to understand what we go through.
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Re: cfs/me

Postby Katie Louise » Wed Mar 26, 2014 6:28 pm

I've been struggling with these things too as well as very realistic nightmare that I remember because I am not fully asleep been putting off seeing gp because they don't listen it's about finding a good gp and having conference in them unfortunately they are few and far between at my local surgery hope you get some support even if you don't necessarily get answers xx

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Re: cfs/me

Postby nikkinoo » Wed Mar 26, 2014 9:05 pm

Thanks Katie Louise, my gps I have 2 are good with my FM but have had the whole its just the horrible fibro I'm afraid thing, I was warned about people blaming everything on my fibro.
Hope your GPS become more supportive for you.

X
Before you assume, learn the facts... Before you judge, understand why... Before you hurt someone, feel... Before you speak, think... This is my message to all who do not take the time to understand what we go through.
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Re: cfs/me

Postby denys » Wed Mar 26, 2014 9:59 pm

Keep a diary and record how you are feeling, pain levels, fatigue etc. make an appointment for a few weeks time and take the diary with you and hopefully it will give a fuller picture for your GP to look at and discuss :fingerscrossed: :fingerscrossed:
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Re: cfs/me

Postby nikkinoo » Wed Mar 26, 2014 10:07 pm

Hi Denys

Luckily I've been doing this since I was diagnosed with FM, its getting the GPS to read it, my rheumy wasn't interested...

X
Before you assume, learn the facts... Before you judge, understand why... Before you hurt someone, feel... Before you speak, think... This is my message to all who do not take the time to understand what we go through.
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Re: cfs/me

Postby denys » Wed Mar 26, 2014 10:19 pm

Maybe try to summarise the data, not sure how you would do it though. I can understand them not wanting to trawl through loads of pages as time is limited, but if you can say for instance out of 21 days I have had fatigue on a score from 1 to 10 of an average of 8 and my pain has been a 7

I have found that on the days of highest fatigue I have also had high pain etc. maybe they would be more likely to have a look :-? :-? :-? :-? :-?
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