New to site

Hi all,

I'm new to this site and still not sure what I'm doing however I was diagnosed with fibromyalgia in 2009 at that time I had never heard of this disease. I also have hypothyroidism and I recently found out that this could be connected. I have found this site very helpful as sometimes you feel very alone. I had to give up work 7 years ago due to this illness and I cannot see me ever getting back into work as it is not getting any better, I take a lot of medication due to this which only takes the edge off the pain, I have never experienced pain like this especially when I am having a flare up. Because fibro is an invisible illness I always feel as if I'm over explaining this to people especially the DWP I always feel as if they are questioning my illness. If only they could live a day in my body they wouldn't put people with this illness under all the added stress. I also have osteoarthritis, I've had 2 hip replacements and I've just recently (21st Dec 2015) had and anterior lumbar inter fusion on my spine. My mobility is limited and has been for a good few years now I can't walk very far at all and I can't stand for too long. Fibromyalgia has totally changed my life, I have no social life as I can never be bothered to go out, I struggle terrible with stairs by time I get to the top I feel like I've ran a marathon the aches and pains are horrendous and I also even struggle on the silliest of things like making my bed (when I am able to get out of it) if I shake my quilt once you'd think I'd been weight training once again I ache and I'm in pain, this is the only way I can describe the way I feel if I try and push myself at times I only suffer for days afterwards. I would never ever wish this illness on anybody it is the worst thing I have ever had to deal and live with , I could go on and on with this.

Deb xx

8 Replies

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  • Hello and welcome Deb!!!

    I have been diagnosed with fibromyalgia since 2006, and now manage my symptoms by pacing myself and accepting that I can no longer do all the things I used to do.

    I manage to work part time (12 hours per week, ) and doing gentle exercise, yoga swimming and walking.

    The hardest part is making others understand what it is like to live in our bodies!!

    Regards making the bed... I do it in stages.. put sheet on, then take a break, before the pillow case.

    Look on. fmauk.org for more information xxxx

  • Hi deb

    And welcome to the forum😃.

    I am sure you will find it a great help, just to be able to talk to others in the same position as you, and know your not alone with this horrible condition

    We are all here.

    Trace x

  • Hi there Deb, know just how you feel honey. I have Fibro, had it for nearly 30 yrs also arthritis, nerve damage in my back etc. As you say, it gets wearing trying to tell someone how you feel and the pain your in because you can see the way they look at you, thinking, "well, you look alright to me".

    I hardly go out anywhere because of being so uncomfortable, if I am not surrounded by pillows and cushions, preferably in a horizontal position, I'm in pain. So going out anywhere means pain and most of the time I think, "why am I going to put myself through pain" So like many of the others on the site, going through similar experiences. So your certainly not on your own.

    I'm same as you in the fact I had to give up work 7 yrs ago due to being so Ill. I stretched it out as long as I could but looking back now in hindsight I think I probably made my health worse because of the job I had.

    As Phlebo mentioned, it's good to swim, specially in nice hot pool, if you get chance to. Also gentle yoga and I have fitted sheet which I get my daughter to put on for me and I just sleep with a soft blanket, which is surprisingly light because I can't bear a quilt on me.

    Anyway nice to know you

    P eace, luv n light

    Jan

  • Welcome to this forum my friend I knew you would like it to help you to speak to others like myself instead of just me that suffers like yasel With fibromyalgia as well as our other ailments 😁XxxHoosa 😘

  • Hello there

    Welcome to the forum :) You have found a fantastic place to come and chat with like minded people who understand completely how you feel.

    I can see that you have been given the link for our mother site. It is worth a look even though you have had Fibro for so long.

    I have had Fibro, plus other debilitating conditions for over 34 years and yet I am still learning.

    It is always a good idea to lock your post for internet safety reasons. I have written instructions below on how to do this.

    I look forward to seeing you around the forum.

    Wishing you calmness and peace

    Lu xx

    Admin

  • Hi again

    Here are the instructions as promised:

    To lock a post when you've finished writing it scroll down to the bottom of the blue box and you'll see on the left hand side two options:

    o Everyone

    o Community

    If you click on the Community option, this will then lock your post.

    If you want to lock a post that you have already put up onto the forum, find your post and again scroll to the bottom of the blue box. You'll see a small downward arrow (v). Click on that and you will get an Edit option. Click on edit and then select the Community button as above.

    Lu

    Admin

  • Good afternoon Deb and welcome to the forum. So much of what you describe could have been written by any of us. It is such a debilitating unpredictable illness which is very hard to cope with. I am glad at least you seem to have an idea understanding doctor.

    At least you are not alone now and can come on here for company and hopefully someone fresh ideas.x

  • Hi debpatt29

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

    I am so genuinely sorry to read that you are suffering and struggling so much with this horrid illness, and I sincerely want to wish you all the best of luck.

    All my hopes and dreams for you

    Ken

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