New Here : Hi all, I'm new to this community and... - EDMESH

EDMESH

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New Here

ButterflyPrincess1 profile image

Hi all, I'm new to this community and thought I'd introduce myself.

A bit about me: I'm in my late twenties and have two children. I had to leave my job as a Care Assistant in September 2012. My physical health issues include migraines and joint pain and I am also thought to be Dyspraxic.

Since having my second child almost 10 months ago, I have suffered with extreme tiredness, to the point where I can easily sleep up to 18 hours a day (my Husband is at Home to help with the childcare and other domestic responsibilities).

I find that sleep/rest is not refreshing and I struggle to stay awake most of the time.

My memory and concentration are very poor and I find simple tasks like reading and typing difficult. Most of the time I struggle to even brush my hair.

I have had numerous blood tests and all have come back fine.

I am doing everything possible to help myself and I am not sure where to go from here...

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ButterflyPrincess1
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5 Replies
ME65 profile image
ME65

Hi Becky. Sorry to hear how ill you are. I know how difficult it is to feel so ill and have youngsters around. Have you been able to be referred to a ME/CFS clinic? Ask your doctor. Unfortunately they are few and far between but I was able to have a home visit as I am too ill to go out anywhere. They would be able to help you with pacing and you can have CBT over the phone. I found the CBT useful for helping me to come to terms with my limitations and find different ways to manage. But do not get drawn into Graded Exercise Therapy. You are too ill to be doing anything more than gentle stretches to ease the tightness in your muscles.

Failing that I would suggest you have a look at the Action for ME site actionforme.org.uk/

Here you will find info on how to pace and lots of other issues. There is also a very friendly forum where you can get advice and support from others who know what a struggle this illness is.

Wishing you well x

ButterflyPrincess1 profile image
ButterflyPrincess1 in reply to ME65

Thanks for the reply, ME65. I will have a look at the link you posted.

I plan to make another appointment with my GP next week to discuss things.

I have done some googling and have managed to find the details of my nearest ME/CFS clinic. However, something tells me that it will be a struggle to convince my Doctor to send me there :(

ME65 profile image
ME65 in reply to ButterflyPrincess1

Have you discussed ME with your doctor? If he has the attitude that it doesn't exist (there are still some dinosaurs out there) or that ME is a psychological issue, change tack and ask for a referral either to a neurologist because of the migraines or a rheumatologist for the joint/muscle pain. Insist that you need a referral to get to the bottom of why you feel so ill and why your body can't function. Or would it be worth trying a different doctor in the practice who might be more informed about ME?

Good luck. Let us know how you get on. x

myhealthneeds profile image
myhealthneeds in reply to ButterflyPrincess1

Hello. You can ask you GP for a referral. He ought to refer you as it is relevant to your health need. Which part of the Country do you live in? I'm in Wales, near Cardiff and we run a Support Group. These Groups can be helpful too. You could ask Action for ME if they know of a Group near your location. I'm away for a week now but let us know how you are going on. We have a meeting in the Welsh Assembly on July 13th and Clare from Action for ME is attending that with us. We are invited by Julie Morgan AM to hold a lunchtime meeting. If you can reply tonight I will be able to read it. All the best,

Miriam

Thanks both. I'm in North West England (Lancashire). I have not discussed M.E with my GP. I am seeing a Neurologist for the migraines and have been sent away with a fourth type of medication to try. I will be reviewed in November/December this year. I have previously been seen by the pain clinic and my GP is reluctant to send me back. I have no idea why. I will be preparing a list of my concerns/questions and will also be taking my Husband with me to see the GP.

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