Why couldn't life be simple...

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Why couldn't life be simple...

Postby wrensgate » Tue Jun 19, 2012 9:23 am

Hello,
I have just registered - I've had a positive diagnosis for fibromyalgia, a month ago I had never heard of this condition now I am trying to figure it out in my head. I am 26 (not sure what age most people are who suffer?) and have been suffering with widespread pain for the last six months, other symptoms include sensitivity (light, some sounds, teeth, pain), TMJ dysfunction, fatigue, major stiffness, lack of sleep, IBS, swelling feeling in my throat and different joints... the list goes on.

I am being referred to a rhemotologist and have been perscribed amitripyline to take at night, which does seem to be having a postivie effect on the, usually terrible, first few hours of the day and less pain overnight.

Major issues I am finding - friends, family etc understanding - I don't feel that any of them appreciate what I am going through. The pain makes me angry, frustrated and very low, and I feel so weak - I cannot do things I could a few months ago. The speed at which I have deterirated has been hard to cope with. I am struggling to work, do the activities I enjoy and keep calm.

I've found my GP to be great, he is very supportive and sees me reguarly, the condition itself is annoying - there arent many facts (such as when will it go away!) and the general feelings to those that have heard of it is that 'its all in your head' or 'you look fine'.

I am hoping that some of the community on here will be able to give me some tips/advice and support.

Jenny
wrensgate
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Re: Why couldn't life be simple...

Postby denys » Tue Jun 19, 2012 10:45 am

Hi Jenny :wave: and :welcome: to the forum, unfortunately life never is simple :shock: :shock: :shock: :shock: FM does take time to get used to and the best piece of advice I have ever been given is to pace.

Whatever you are doing and however you are feeling carry out a task for 5 minutes then rest for 10, even if you feel fine you have to stop after a set period of time and rest up, it means you can carry on for longer, don't end up causing a flare but lets you feel like you can still do things :-D :-D :-D :-D

As for family and friends, print out some of the information from here and the NHS website and ask them to read it, one for the nonbelievers and the spoon theory are good ones :-D :-D :-D :-D
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: Why couldn't life be simple...

Postby Em c » Tue Jun 19, 2012 6:04 pm

Hi,
I only got diagnosed in April and, up until Sept last year, I was racing about teaching full time and looking after my 7 and 1 year old sons the rest of the time!

It all looks bleak at first, especially that it's chronic and doesn't really go away, but there is loads of info on here and lots of people who understand what you're going through.

I've found using the 'search' box in the right hand corner is useful if you want to look for something in particular. Otherwise it's good to read through the postings and you start to feel that you are not alone with the fibro.

Take care,

Em x x x
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Re: Why couldn't life be simple...

Postby shazq » Wed Jun 20, 2012 11:09 am

:welcome: to the forum Jenny :wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
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Re: Why couldn't life be simple...

Postby wrensgate » Wed Jun 27, 2012 6:15 pm

Thanks for your replies. I am going to use the search function to look up some questions I have.

I do understand the 'pacing yourself' it's just so hard - I don't want to or know how to, I live life fast and full (well did) and that takes getting used too. I am just so very very angry at everything and everyone.

Jenny
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