Glad I have found this group

Hi I just wanted to say how glad that I am to have found this group, I have been diagnosed for about 4 years now but in my area there is not much support, although I do have very good support from family and friends including my husband most of the time but as much as they sympathise they do not know what it is like to cope with this horrible condition, to not know moments after you took a tablet which tablet it was you took, or to be in so much pain that you just can't sleep even though you are exhausted, on top of everything else my Dr now thinks I am suffering from IBS I just feel like I just can't cope with anything else going wrong with me, I realise that even though I have been diagnosed with this for some years now I still mourn my old life and all the things I used to be able to do and I get so frustrated in not being what in my head I think is normal...sorry this has turned into a bit of soul bearing, anyway I am sure that I will learn lots from this group and get lots of support too, I'm glad you exist :)

Ness x

8 Replies

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  • Hi NessH

    Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! I have pasted you a link below to our mother site, FibroAction which hosts loads of useful Fibro information:

    FibroAction Website:

    fibroaction.org

    I am so sorry to read that you are struggling and suffering with your Fibro, and I sincerely hope that you can find some resolution and relief to these issues. It may be beneficial to discuss your pain etc with your GP or Medical Specialist, as it could be that your medications need tweaking? Or a complete overhaul? I want to genuinely wish you all the best of luck, and I look forward to seeing you around the forum.

    All my hopes and dreams for you

    Ken

  • Welcome Ness!

    Even with years of experience in coping with fibromyalgia, we can sometimes feel overwhelmed.

    So glad you are here!

    I hope you will feel free to share whatever is helpful for you to share.

    Ken has written a great welcome with an important link enclosed.

    Join in here wherever you feel led to do so!

    Make yourself at home here.

    Crazy_Horse

  • Morning Crazy Horse I thought you had disappeared How are you? ginseng

  • Morning NessH,

    I completely nderstand where you are coming from when you say "Morn for the life you had" You know I think we all understand and have the greatest empathy for this.

    Sometimes when we are down we sit and reflect - this is not always a good idea. sometimes it just makes us hanker after how we were.

    Hard though it is we all need to reflect and move on we have to make life as it now as good as we possibly can.

    I think that is where this site and other bits of fibroaction.org have helped me to be focused on helping others as much as we can.

    So you are having a hard patch at the moment well say to your self it will get better I will be able to cope. You are a brilliant person and you need to use positive self talk to encourage the grasping of how your world is now.

    I hope this helps a little

    Try and keep your spirits up

    Ginsing

    Administrator

  • Welcome indeed. Do look at Ken's links and share as much or as little as you feel like on the forum. We're all in the same boat, maybe different parts of it. There will be someone who can link up at any time.

  • I just wanted to thank you all for the lovely warm welcome and all the advice and links, I will certainly be looking at those. I am off to a training session at a hospital today to help students learn about our condition, I am really nervous about it but glad to be helping in anyway I can...wish me luck xx

  • Hi Ness :)

    Thankyou for such lovely words about our community and I'd also like to welcome you into it :)

    I hope that you find the friendly advice and support that you need here

    ...............there is always someone just around the corner who may be able to help or offer a hug for support when needed :)

    The following link takes you to our FAQ's where you can find information to help you navigate your way around the community and find many useful links for many other things too. I thought it may be useful to you :)

    healthunlocked.com/fibroact...

    When it comes to medications I have that problem a lot in fact on a daily basis and often cannot remember whether I've taken them or not. When it happens I end up not taking them until next dose because I don't wish to take a double dose by accident :o

    I struggle to keep to a medication routine for many reasons one of which being the erratic sleep pattern that comes with the CFS and Chronic pain issues. I have recently discussed this problem with my GP to make him aware of how many doses I am missing because the obvious consequence is that I can't get the pain balanced as a result. It's catch22 all the time :(

    However, with the right support networks like the one you have it can make a huge difference to how we cope and balance everything to the best of our ability

    Take care and look forward to seeing you around.

    Fluffies and smiles :)

    xxx sian :)

  • Hi Ness,

    Welcome to the site, it's a great support &, like the others have said, there will always be someone to talk & listen to you. When I read your post, it was like looking at my own life over the past four years! I still think about my old life BF (before fibro, lol) a great deal, I had a great job as a Careers Adviser, loads of friends & loads of social outings. Now, most of my so called friends have disappeared, the invites out soon dried up, as people get fed up when you have to say no to flamenco dancing, going to the gym & going on a pub crawl!

    I have gained other things from having fibro, though, I'm much more sympathetic towards other people, I have started painting, I've started making Christmass tree decorations & I now have more time for what has become my favourite thing, listening to music! I used to be passionate about birds & went all over the place bird watching. Now, I watch the birds in my garden & I feel fortunate to have them there but it's not like it used to be. I have also been diagnosed, all recently, with IBS, calcific tendonitis & an inflamed gall bladder, which might have to come out! So I know how you feel, especially when my gall bladder started last weekend, I just thought, not another awful pain to deal with, on top of everything else!

    Well, I hope you like the site, it's a great source of comfort to me & I hope you will feel equally comfortable over the coming months. You sound like a fighter to me & Im like that too, only now I choose my battles very carefully, hahaha. I wish you the very best of luck & it will be great to bump into you on here from time to time, if you need to talk about anything, feel free to offload here.

    Love & gentle hugs,

    Tracey.

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