Learning to live with fibro

Hi Hun, I'm so sorry for your losses, I can't imagine what you are going through and I send lots of hugs your way. I read posts on here everyday but this is my first post.

I can only speak from my experience and yes, it can get better!!! I've had fibro 10 years since I was 21 and expecting my first child. I could barely walk, sit, bend, had to drop out of my nurse training, spent hundreds of pounds on different opinions/ referrals/ supplements/ treatments!! The best opinion I was given (even though it didn't seem it at the time) was learn to live with it and exercise!?! I could have pulled the docs head off when he said that as I could barely lift my head!!! However, after finally giving in and trying amitryptiline, and pacing myself and slowly coming to terms with fibro, taking the good days with open arms n knowing that the bad days will come but they will go, I started feeling a bit better. I also lost my sister, my uncle, my auntie, two miscarriages and endless problems with my parents so I can empathise with you, I think! Counselling is great to help you come to terms with things, just talking and getting it off your chest, making sense of what's happening. I've blamed everyone and everything, tried to think why I'm like this!!! It's exhausting and the stress just makes it worse. Little achievements made me happy, like when I bathed my baby, I was in agony but I did it! Walking into town, so hard and painful but I did it. I remember saying to a homeopath, my dream is to run again... In tears. Slowly, (9 years after) I have slowly built my exercise up. Yoga, stretching, the wiiii, weekly massages, and I am now running, doing bootcamp!! I know it seems impossible but my energy levels are high most days. As long as I keep plodding on and moving gently, sitting is the worst thing I can do. I also now have 3 kids and they are what I get up for, I'm lucky to have a supportive husband too. I'm sorry to go on and on, meds have been important for me. Amitryptiline, citalopram and unlike others I can also take tramadol with it but only 1-2 per day, seem to keep my energy levels up, est very healthily, no alcohol ( or very little). I can cope with pain, I'm used to it, but the low moods and exhaustion and heavy foggy bubble head is the worst of all. Hope this helps, sorry for babbling on, just hope it will give you hope that it can get better and I hope it does for you, lots of lv, Angie xx

7 Replies

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  • Morning Angie,

    Thank you for your post, it shows us how hard life with Fibro is

    but also with determination and courage you can make your Fibro life into a good life. You have your three children who bring such joy, into your life. You are a feisty determined fibro lady and I take my Hat off to your courage! May your day be good pain free as it can be !!

    Live well Laugh often Love much

    xgins

  • Hiya, I've seen quite a few of your posts gins and remember them, also because gin and tonic is the best painkiller, however, I don't drink them as I can't cope with the days after and and couldn't live being dependent on it!!! Thanks for your reply, it's astonishing just how many people are living with Fibro and good to know others understand what it's like and it's not in my head. It definitely makes you strong, I feel like I'm struggling everyday but try not to think about it, the more I think about it the worse I feel. If I didn't have my kids I'm not sure how I'd manage, but hey ho, it's here n it's here to stay. We'll keep fighting on and I always think, I could be much worse off. The black cloud, heavy like lead, made of stone, painful days fill me with such negativity and venom that I can't even stand to hear my own voice, however, those days need managing and I've learnt to let my husband hold me, n have a massive cry, and eventually it passes!!

    I look forward to your future posts, hope you keep well and have a lovely day, ps my head is lead writing this... Bloody Fms!! Angie xx

  • Hi Angiedeaks

    I sincerely hope that you are feeling as well as you possibly can be today? Thank you so much for your inspirational post, I truly believe that there is one thing every human being on the planet has, and that is hope! I think it is the reason we go on living, and trying and striving? If we believe in ourselves then sometimes, we can do what seems like the impossible?

    I am so sorry to read of the losses that you have endured and the sacrifices that you have had to maintain to get to where you are now. But again, I believe they are an inaugural part of our lives, and they make us better people by learning from our pain and our loss, and you sound a wonderful and amazing person (and mum).

    All my hopes and dreams for you

    Ken x

  • Aww thank you ken, thank you to you too for all your support you give, I read your posts every day on here and you give some great advice. I feel lucky to have finally found some peace with Fibro, it won't beat me, ever! Even when the doctor told me not to have a third baby as I was struggling, I knew I could do it. as it happened I actually had a pulmonary embolism on my right lung( not linked to fibro but actually thrombophilia) and dr tried to make out my chest pain was stress. Point I'm making is for those who manage our condition, we get to know our bodies very well and having the confidence to say, please listen, I know this isn't normal for me. Ended well anyway as instead of going to "lay down" I rand nhs helpline and they found the PE 5 days later, me and baby we're fine ( eventually).

    All my hope and dreams for you too Ken, and for all other sufferers/ survivors/ battlers and foggy friends, just got to keep going. Have a good day, keep well

    angies deaks x

  • that's truly inspirational.

  • Good for you sweetheart!!! Hoping you continue to do as well as possible!!!! xxxx Mitzi

  • Thank you, same to you too x hoping for more good days, better than this one anyway!!!! need sleeeeep zzzzzz x

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