Living with fibromyalgia

To be honest I'm struggling physically and emotionally with this condition, I've got a few medical condition. But the loss of my former life, energy, walking and generally enjoying life. I'm finding it difficult that I have to slow down because It's to painful to go faster. Life is so exhausting.

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  • I was just thinking exactly the same!! I've given up my lovely job not too long ago and now every day is such a struggle that most people are not aware of. Apart from the fatigue,pain and stiffness, it's this constant heavy sweating that I can't cope with. I'm still in denial hoping things will get better or at least not get any worse. I would be having a wonderful life (for the first time) if it wasn't for this !!! I feel so angry with it today. Take care x

  • Thanks for being in touch with me magic stars. I've been struggling with the work thing for a couple of years but with hindsight I think it's been at least six years. I got to the stage where I couldn't give what was required to do my job and not let people down. Everything was put down to other conditions (crohns/menopause) but since been diagnosed with fm earlier this year, it all makes sense now.

    At first it was mainly the debilitating fatigue and stiff tendons/muscles( although twice my calf muscles tore for no apparent reason....maybe the fm was to blame for that) but recently pain has started to kick in so I think I'm in panic mode wondering how this is all going to pan out. X

  • I feel a bit overwhelmed at the moment trying to come to terms with it. Been speaking to my daughter earlier and decided to broach the subject of not being able to plan things as I have done. She thinks that it'll go away after a year or two,like remission,and I didn't have the heart to say that after reading posts on here that it won't.

    Am not on any pain meds at the moment except paracetamol. Have tried gabapentin and pregabalin but side effects weren't good. Decided last night to take amitryptaline again. Am on immunosuppressants and statins so am trying to keep the meds down to a minimum.

    How does this affect you and what do you do to cope? X

  • Have just seen you slipped a disc. Don't worry about replying ,you just concentrate on yourself and maybe get back to me when you can. Sending you a big but careful hug x

  • First let me thank you for taking the time to reply in such a heartfelt way. Second....how the heck are you after your back and fall???? and how did you get through at work today?

    I would never criticise or judge. Life affects us all in different ways(and I'm not into preaching either)

    My daughter is probably around the same age as you. She's a really caring,lovely daughter but she grew up (alongside my son) without a dad and is used to me being strong and in control. She can't bear to see me ill and this in itself puts a bit of pressure on me. She's under a lot of stress in her life at the moment so I play it down.

    I've also got an ageing mum who relies on me(only child) so much. I have got a great husband but he's not one for deep conversations and just plods on in his own way.

    Anyway,that's the jist. Next to you I don't think I can complain as I have had a great life up to the past few years. I've loved,laughed and lived. I did expect it to go on for a lot longer and that's what I can't come to terms with. Another chronic condition with no answers( I also have crohns) or cure!!!

    I have decided that this thing will not cause me to get depressed. I have seen a lot of that as I've worked for a mental health registered charity .you have obviously gone through it . It's a big load to carry at your age so don't beat yourself up. I think it's perfectly normal to put a mask on...pride I think. I don't think I'm going to discuss my health with people(except on this fab forum)as they seem to turn my symptoms into some sort of competition ending with their symptoms being much worse! Or telling me I'll get better.. you're right...people don't understand...how could they? I'm stopping rambling now. I really really hope you're not suffering too much. Let me know in your own time .xx

  • Really sorry to hear this hun, I know that Fibro can be a really lonely place and can sometimes make everything seem dreadful! I'm so sorry that you had to give up your job, I understand how important it is to have something in your day that keeps you focused! Do you have any hobbies or something you have always wanted to do? Xxx

  • OMG you sound like you going threw the same thing I did an still doing the depression is crazy I don't understand why me work hard for nice stuff savings new car all gone because disability can't pay for it try to keep spent all savings trying to keep stuff can't enjoy family no more time with grandkids limited. But you know it could be something worst so I think God he gets me threw each day

  • Hi Andreawest, it's common to feel the way you do lovie. I certainly struggled with it. I adored my job but had to leave as it was just too physical and was simply crippling me.

    I feel for you and wish I could do more. It's not much consolation but you do, slowly, get used to things you can/can't do bit by bit. I'm sure it's a long process but finding what you can still do, even if you do need to make adaptions, will keep you moving forwards.

    Sending hugs to you lovie xxx

  • I am sure we all understand how you feel and it is a hard thing to deal with. I thought my life had ended when my hubby came home with a wheel chair for me. I sat and cried and never left my home for two years. But I did find other things to do to replace the the things i had lost.

    I actually surprised myself with all the new things I had the time to take on board and learn. 17 years after that wheelchair was placed in front of me I can say with certainty there can be a life after fibro.

    It started for me when I stopped wanting my old me back. I knew it would not happen just like I would like to be 20 again and that sure is never going to happen LOL We all must go through some kind of grieving process before we can start to move on. Look if reinvention is good enough for Madonna and the like's it's good enough for us fibromites. {{{HUGS}}} xx

    Mo

  • Hi - we all feel that way. I've been battling it for over 30 yrs now plus other issues. You will find your way with it. My way has been to ignore it as much as possible lol. When I have a good day I latch on to that and treat the bad ones as something I've got rid of. The next bad day I treat as something new rather than another bad day in a long term condition. Just my way. I had no choice but to keep working but have to say that helped me no end. I am now self employed for the last 19 yrs and only work one day now but I am working one day - I also do what I can for others to keep my head out of my own problems and remind myself that it's not that bad compared to others. This forum is great - we all understand and all come to learn how to laugh at it. Once you can do that and refuse to let it rule your life then you're back in the driving seat and no one will be able to tell you that you can't do something again. Good luck x

  • Thanks Molly. I'm usually more positive. I haven't slept properly in weeks, I'm in pain and I'm grouchy. So I'm avoiding people lol

  • I know how you feel,it's like I'm grieving for my old life.And I think it's harder when people don't understand our illness.Iv been told so many times I need to learn how to pace myself,but I still want to be able to do everything like I did a year ago,but my body just won't let me anymore.If you ever need a chat I'm always here .

    Take care.xx

  • Thank you. Grieving that's a good word to describe how I feel. I either don't go out or I'm the first to go home because it takes so much effort to go out, I'm to exhausted to stay out. X

  • I know how you feel.I have a 50th anniversary party end of September to attend,bet they find me asleep in a corner at the end of the night.lol.Im just going to make sure I rest for a few days before.

    Xxx

  • Hey Andreawest,

    Thank you for your honesty and the bravery that it must have taken for you to write this post.

    I know when I was diagnosed at 19 I thought my life was over. I went into a very dark and scary place for a long time, as I almost mourned the loss of everything I knew. It was a difficult journey but I am now at a place where I can be grateful for the things that I do still have in my life.

    Like Dizzytwo said I started to rediscover a love for reading that I had lost. I joined this forum, met loads of people and started to post and realised that I was actually helping people just by being me. I still work full time, and have even started (2 years ago) my accountancy degree, I have my fifth exam in two weeks time, although its taken me a long time compared to most people I am so proud of everything that I have achieved and continued to achieve and I believe I am a stronger and more compassionate person because of what I have gone through.

    I'm not sure what you take (painkillers) and if you use any other methods of coping, but it's good to speak about that with people on this forum as they will be able to share tips with you that they use etc. I hope you find some comfort in this forum and if there is anything that I can do please let me know :)

    I have inserted our Mothersite's website which has loads of useful information -> fmauk.org/

    Xxxx

  • Fight for your life , Don't let fibro beat you

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