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 Post subject: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 12:29 pm 
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Joined: Fri Oct 14, 2011 10:05 am
Posts: 580
I wonder if anyone can help?
I have recently been very unwell, I had glandular fever end last year, then 2 quinsys and a very sudden close family bereavement ( a suicide). Have felt truly awful for months but kept going as much as I could. I was also diagnosed with coeliac disease last year. I am very strict about my diet. After endless tests and with me taking increasing days off work where I literally cannot get up, and my joints and muscles are so sore etc my GP now thinks I may have CFS or ME. does anyone have any experience of this? I have to keep cancelling really lovely social events as just not well enough to do them! I feel like a fraud as sometimes I feel a little better, do a few things but within 24 hours I am feeling worse than ever. It is taking a toll emotionally and I worry that the DC see me in bed or dragging myself around a lot. Not great for your love life either! I am never sure whether to force myself on or whether to "give in" to it. Any help very gratefully received!


Last edited by neveragain* on Wed Jun 20, 2012 12:58 pm, edited 1 time in total.

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 Post subject: Re: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 12:53 pm 
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Joined: Wed Feb 27, 2008 8:59 am
Posts: 2001
I've moved your post as requested.


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 Post subject: Re: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 12:57 pm 
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Joined: Fri Oct 14, 2011 10:05 am
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Thank you!


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 Post subject: Re: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 1:46 pm 
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Joined: Wed Aug 01, 2007 11:19 am
Posts: 888
My dh had it, and they talked then about "graduated exercise" iirc. I.e. try to make sure you do something every day and increase it very very slowly, but rest as much as you need to in between. Sorry you've had such an awful time of it - you sound like you are definitely in need of convalescing and getting a bit further through your grief, whether you actually have cfs or not. Are you working? Dh started working one day a week from home, and I'm not at all sure he would ever have recovered if he couldn't have done that.


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 Post subject: Re: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 1:51 pm 
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Joined: Thu Aug 19, 2010 12:57 pm
Posts: 1446
I can't add anything but I wanted to say that you need to give yourself time to grieve and to heal and give yourself a break. Hugs x


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 Post subject: Re: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 2:48 pm 
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Joined: Thu Nov 08, 2007 9:57 pm
Posts: 1167
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Last edited by Belinda on Sat Nov 03, 2012 5:03 pm, edited 1 time in total.

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 Post subject: Re: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 3:02 pm 
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Joined: Fri Oct 14, 2011 10:05 am
Posts: 580
Awaiting appt at frenchay hospital for CFS clinic, low in folate, have a benign pituitary tumour. That is what the tests have shown, but as you say the emotional issues big too. Def not depressed though - feel like an active energetic person in an exhausted old shell!


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 Post subject: Re: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 3:43 pm 
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Joined: Tue Jul 21, 2009 9:56 pm
Posts: 8228
I would think the benign pituitary tumour could make you feel terrible if it is affecting your balance of key hormones. Good luck with everything.

Also are you strict enough with your diet - no gluten contamination in the cooking process etc?

Hope you feel better soon and get the best treatment for the pituitary. A relative had a benign pituitary tumour; of course I don't know if it is the same as yours.


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 Post subject: Re: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 3:46 pm 
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Joined: Fri Oct 14, 2011 10:05 am
Posts: 580
I am stringent re diet - separate toaster butter dishes etc. couldn't be stricter! I am seeing endocrinologist re tumour which a prolactinoma so yes has some impact no doubt but not the main culprit! Thank you mystery!


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 Post subject: Re: M.E? - Any advice -
PostPosted: Wed Jun 20, 2012 4:48 pm 
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Joined: Thu Nov 08, 2007 9:57 pm
Posts: 1167
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Last edited by Belinda on Sat Nov 03, 2012 5:04 pm, edited 1 time in total.

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