Where do I start...?

All your fibromyalgia experiences, questions and answers.

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Where do I start...?

Postby Timmy » Fri Aug 01, 2014 7:34 pm

Hello, my name is Tim.
I have never been on a forum before, so forgive me if I get things wrong.I am now 48 years old, when I was 16 I was told I have fibrositis, not nice.Now, the silly thing is I forgot about, I have had pain on and off for ever. I have also been told that I have arthritis, so for years I just thought it was arthritis that was causing the pain. Never could understand why the pain was in my muscles...

Went the GP last week, and I remembered about the fibrositis, she said good, because I think you have fibromyalgia. I did not really know what that was, she gave me some fact sheets, one of the sites listed is this one. So here I am. Pain clinc is the next step.

I feel very silly that for all them years, I have had pain and never remembered about the fibrositis..Writing this from my bed, because my body has said no more, too tired to move, so rest it is..

Fatigue and pain are the main issues with me, no sense of smell, memory issues, do not like noise, flashing lights. Anxiety is also bad, worse because sometimes I cannot sleep due to pain in hips and lower back. I really feel useless, for years I have been called lazy by people that I no longer have contact with, at least I now know why I have needed so much sleep. I have always worked, for myself and for others, never claimed in my life. Dragging yourself out of bed to go to work is no fun, but it have done it for years..
That is the quick story, so where do I start..?
Pain clinic, went to one once about arthritis, and they treated me like a fool. Three of them sat in front of me, if you remember the kids program, Rainbow, the 3 people that sang the kids songs, well that was what they were like.
I got up and told them I feel a lot better, don't bother me again, and left..
Really my next visit is better, live in a different place now...
At the moment I am in pain just typing this on a iPad..
So that's me.
Hello from Tim.
Timmy
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Re: Where do I start...?

Postby denys » Fri Aug 01, 2014 7:50 pm

Hi Tim and :welcome: to the forum you wont go wrong if you read the basic rules for membership, hopefully we can offer you some support along the way and dont feel bad for all those forgotten years, its the same for a lot of us. Struggle through until you cant anymore, the important thing to remember is to pace, do an activity for a few minutes then rest at least the same length of time.

Break tasks down into smaller chunks, it does take longer but at least you end up completing something instead of having to give up half way through. Look forward to reading your posts :cow-wave: :cow-wave:
Denys

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Re: Where do I start...?

Postby rubes » Fri Aug 01, 2014 7:54 pm

Hi Tom,
I am new on here, had FM for about 7/8 years the pain and the exhaustion is depressing I feel a lot like you, my hubbys fanily told me to pull myself together, contact is now rare my hubby is still mortified.
I have found acceptance has done me a lot of good, took away the pressure.
All the best.
Back off to bed so tired.
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Re: Where do I start...?

Postby Tally1068 » Fri Aug 01, 2014 9:09 pm

:-D Hi there. Sorry you have this debilitating condition. There are lots of us in the same boat and I've found it a great place to moan/celebrate the little successes and just generally know that people understand. The worst thing I think is being told or feeling that you're lazy. It's soul destroying, as is not being believed as yet another symptom rears it's ugly head.
I spent hours reading the forums after I joined as I wanted to know just what fibromyalgia involved. I'd never heard of it. It's been a revelation and a huge help and I don't feel alone.
All the best.
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Re: Where do I start...?

Postby Timmy » Fri Aug 01, 2014 9:45 pm

Thank you for taking the time to reply to me, very kind.
I will have good read of the posts and advice.
What I have seen so far is good, some sad bits, but good info.
Nice not to feel so alone..

Tim x
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Re: Where do I start...?

Postby iblinkin » Sat Aug 02, 2014 12:30 am

Hi Tim and welcome aboard! there are some really great people here on this forum and trust me you won't feel alone here. I have posted a few things on this forum and if you get a chance please take a look at them as i have some important info that may help you in the long run. Stay strong and remember we are all in this together.
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Re: Where do I start...?

Postby Susan Stokes » Sat Aug 02, 2014 9:50 am

Hi Timmy - welcome to the club. It's a very exclusive club for people who outwardly look normal but have a life-changing disease. It's a club where people can come on and have a good moan and not be told 'buck yourself up', 'sort yourself out'. You will find that there are varying levels - some people are able to do a lot more than others. With so many symptoms to choose from it's difficult to decide which ones to have (as if we could). However, listen to the advice given above - pace yourself - I was diagnosed in 1993 and am still struggling with that one. If I have a better day I go and ruin it by doing too much. My advice is to fine something really absorbing, it doesn't make the pain go away but by changing your focus it doesn't seem as bad. I make jewellery (it has to be a sitting down thing) and I get completely lost in the gemstones and trying to make something beautiful. I also like to get lost in a good book - preferrably lying down. It's a difficult thing to live with but you will learn as you go along what works for you. We're all in the same boat so feel free to have a good rant. Good luck.
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Re: Where do I start...?

Postby dazzleship » Mon Aug 04, 2014 3:50 pm

hi Tim

welcome to here :-) I haven't been here long but I have found this forum very helpful so far. I'm not the sort of person who can sit in a group and talk to others face to face so a support group wouldn't suit me.

so I joined this forum instead.

and I've found it useful not only because people help me with questions I have but also because I am able to offer bits of support to others and that also helps me.

hope that makes sense. anyway welcome.
dazzleship
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Re: Where do I start...?

Postby rich44 » Sat Aug 09, 2014 8:41 pm

Hi Tim

I've been suffering for 10 year and past 12 months I've gotten a lot worse so finally been referred to the pain clinic.

First appt was the group session where they explain everything to you (waste of time because 99% will have researched things already)

Went back for 2nd appt thinking this is it & was a ten minute chat about the previous session and my next appt arrived today for..... December!! Livid doesn't begin to come close esp as the gp essentially said oh the pain clinic will sort you out now and wouldn't prescribe painkillers.

Hope your next experience is better than mine to date.

Good luck
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