So. I was just sitting thinking. And I felt compelled to write this down.
I've had a horrible 4 years. I've been struggling with varying degrees of pain, disability and exhaustion. I've been on pretty much every tablet known to man and delt with nearly every side effect known to man. I thought I was going to die. And sometimes I wanted to. Hell - I even tried to kill myself a few times.
I am however pleased to say, that I am declaring myself officially in remission. A title I've decided to apply to my fibromyalgia. I haven't been on disability benefits since October; I've been working near full time since before Christmas and I haven't taken any prescription level pain medication regularly since 2012. I'm no longer on antidepressants or epilepsy medication and I don't take anything regularly now except the occasional mutlivitiamin
So does this mean I'm pain free and full of energy? Am I cured? Sadly I have to tell you that that is a dream way away. If it ever happens! I still hurt everyday and I still wish I could spend my life in bed BUT it isn't as bad as it was - and I think I've come to terms with this being like this forever. Why did it get better? What did I do?
Some tweaks to my diet and some significant changes to my attitude seem to have given me some freedom but I choose the word remission because I'm fully aware that at any time this could all be snatched away from me again. I could choose to live in fear - or I can party whilst I have the chance.
I have my husband, I hav my cat and I have my family. I'm back focusing on my degree and working my way back up the career ladder. I am so lucky to be given a second chance. I would still kill to have my old self back but I feel now as though that guy is dead. Gone.
Why am I posting this? God knows. I just wanted to write that. My fibro has been in remission for 6 months. And I'm happy.
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fibrosam
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Why are you posting this?....because its fantastic news and you wanted to share something positive for a change with us,well done you for taking the plunge and giving things ago,I'm sure your remission will stay with you for a long time with that positive attitude,thank you for sharing it with us.
Pinkblossom..xx
That's fantastic news long may it continue, I had what you describe as remission for 7 years and I would love you to beat that..keep going
What lovely, positive, good news!!! And a great way to start my day, reading your story. Thank you so much for sharing it with us Sam (NOT Fibrosam) I wish you the very best. Long may your 'remission' last
Mel
xxx
Keep up the positive vibes and mix with positive people
A brilliant, wonderful share....one to fill us all with hope. Keep posting, keep sharing.... I never speak for others but on this occasion I have to say that I am sure that your post fills us (the Fibro Community) with hope..
Personally speaking I really need to know that 'hope' for remission is not some pipe dream but an actual possibility, a reality.....because its that dream, that hope that keeps me and others going.....
So a big thank you Sam, I love your share, its brilliant news.
Fantastic!! ACCEPTANCE is the word for it. Like you say in your own words you have come to terms with it. You have been strong and learnt to MANAGE your life and are not allowing the fibromyalgia to manage you The hardest part for me is "sticking to it every day" but I have been, like you, building my "new life" by pacing and only take the occasional pain killers. One day I suddenly realized that if I was to have any life at all then this was the way it had to be. My Second life!! I try not to grieve for my "old life" but try to live for "the here and now" The hardest part for me is getting my family to understand -- my husband gets angry when I can't do all the things I used to do. My son still does not accept that fibromyalgia exists. But "hey" so long as I can live with it then there is no point worrying about it . I work part time, eat healthy and do gentle exercise (walking, yoga) I am happy that you are happy well done xx
This horrible illness needs acceptance and strength to carry on moving!! I still work full time and determined to stay that way. Some days I walk through the door and straight to bed!! I have made dietary changes and just this week weaned myself off Amitryptaline. It didn't help me sleep or relieve my pain so after a year trying I decided the side effects weren't worth it. The only thing I struggle with is additional Excercise. Something I need to work on!!
I was copying very well with my fibro , couldn't work but managing to achieve something every day !! Even learnt a new skill. Baking couldn't bake a thing before now I'm making cakes people love and that makes me feel good !! I am however paying the price when I bake I'm in terrible pain and exausted but never the less pleased with
Myself !!
I was feeling bit low this morning had very painfull night and I may have lost the plot !!! ?????Because having just read the message remission I'm not of the Same view as the rest of you ???????? When its good to hear that that persons better its made me feel sick because I've had a positive attitude for yrs and many people congratulate me on it !!!!!
I've also looked after my diet , so why can't I hold down a job and return to the land of the living ?????? I've tried on and off the meds and on is better i wouldn't do as much as I do without them ???!!!!! So am I the only person that feels as if my nose has been rubbed in it ????? And am left feeling rather useless ???? If I am then I must have a different illness ???
I don't believe that as I've read so many other people's story that sounds so much like mine and only the one that's the same as above !!!
Please don't get me wrong power to you if something you've done has made you better
I'm just worried that reading it can have the opposite effect on someone it could cause people to feel lower than they already are ??
If we could hear about the tweaks then that would be usefull ??
Hi I just read all the replys and it is very hard when you too are doing all of those things, yet not getting anywhere fast!
I have had Virol fatigue Syndrome for 18 years and fibro,for a while I was suffering with all of it and I one day decided to say "I am living with it " and for a while maybe 6 years I struggled but kept saying I am living with it. ....Then I had an acute fibro and CFS and ended up not being able to walk or drive my car,It had now taken over my life this was 2 years or so ago now .....I did have a hard week this week 4 hospital visits in 4 diff towns for 4 diff things.....Today I am aiming at living with how I am and hoping that one day I can again say " I am living with it !" rather than it has taken my life over.
This is only day 1 but we will see, Please don't let this positive post make you beat yourself up,as it is different for us all and even if we get a little chink of hope from someone we can build on that.
My daughter says to me Oh Mum just think positive ! but when your butt is up against the wall you cant always feel that and its then we are all here to help in any way we can x
I hope you soon feel a lot better and if you ever need to let off steam we are all here for you.
Gentle Hugs to you and don't be so hard on your self easy said but we all need reminding at times x Take care!
Great to hear you're feeling better, Fibrosam - and long may it last! I've had a couple of remissions from fibro and live in hope of another one ... soon!
I look back and can never think of any factor either mental or physical which caused the easier times - it was all very random.
I still think that eating as healthily as possible, and trying to maintain a positive attitude is always a good thing - it may not cure you, but it maintains you in the best possible condition to enjoy any remission that may come your way!
So - Allpained out - don't lose heart. We all just have to keep plodding along and hoping for the good times - they do happen!
Thats great news Fibrosam. My only concern is that the powers that be will read your blog and it will confirm what they are always saying about fibromyalgia. It is not a life-long condition and we can heal ourselves. Absolute rubbish !!!! You have either not been suffering from fibromyalgia or you have found a cure. Both of which is absolute crap !!! I have suffered from this for 13 years and no matter how much postive thinking I have employed, I still suffer extreme pain 24/7. It makes me mad when people who are not true sufferers come on here and place blogs like this. In all the 13 years of having this condition I have never had any sort of remission. So if you could let us know your amazing cure I'm sure we would all be overjoyed to try it ourselves. I for one am fed up with waking up in the morning unable to get up and get dressed. I am fed up with not being able to even walk around the house. I am fed up with having accidents because I can't get to the toilet quick enough !!! So please post your cure so we can all have our lives back. Thanks !!!!
I understand where you are coming from hollykarma, but please be careful with your reply.
we are all individuals and have different pain levels and threshholds. sometimes the stresses or reasons we have fibro can ease or be eased be reduced by a change of med's or circumstance.
I am not in any way diminishing how fibro affects any one of us, nor am I hailing anything as a cure - as far as I am aware there isn't one.
However, I am aware that remission, or if not that, reduction is possible. I live in hope for me.
I've done the positive thing too and just found my self fighting a losing battle.
I've "pushed" myself beyond my limits , only to end up passing out &/or throwing up. I've also ended up too ill to sleep,move, turn over, let alone get up or get to the loo.
let's hop we might find th right med's to ease the fibro and maybe achieve a remission.
The key with treating Fibro should always be to get as good symptom control as possible and to optimise your quality of life. That is not saying that there is a "cure", but better symptom management is certainly something to aim for.
Remission, afaik, would mean not having symptoms whilst also not being on regular medications.Remission from Fibro is very very rare, but is possible - my Fibro is in remission. I still have it and have flares occasionally. I will also always have to take care of myself. But I don't have daily symptoms.
I would therefore argue that Fibrosam is not in remission if they are still experiencing symptoms. But having the Fibro under control and able to achieve a better quality of life is brilliant and is what all treatment (by which I do not just mean medications!) should be aimed towards. Let's try to not knock those who find a better quality of life.
OMG Thank you so much for telling us this I Have been to all the places you went to and I am still fighting and in anger about loosing the other me!!! But your post is like a light at the end of the tunnel and I thank you. Take care and carry on. Enjoy.
That's so nice to hear, remission no matter how long is a great gift, glad you are making the most of it and sound so positive. I have has fibro for over 30 years and there have been times ( more when I was younger) when I had spells where things where better, but I agree with hollykarma that people assume this is all in our control which is rubbish. Take care and enjoy it as much as you can with your family. Also kudos to you for forging ahead with your studies.
Meanwhile I like many people am struggling, pain, depression and all associated fog and rubbish, the one thing I really believe is that fibro is different for everyone and the level to which it impinges on their lifestyle, if it were the same for everyone then we would have much more understanding from the medics and everyone else and maybe there could be definitive medication or treatment' but it isn't and so we each have to learn to cope in whatever way we can.
Allpainedout sorry to hear your not doing so well on the positive pill! Sometimes it helps to hear others are having a good day (or days) and sometimes it makes you feel worse. Personally it depends on how I'm feeling at the time I read it. Sometimes i skip the positive stuff cos I want to hear of others going through the same as me. It hels me feel less alone. Other times reading the positive stuff makes me feel hopeful, and reminds me of my good days.
Great news fibrosam I am so pleased for you keep up the good work,and maybe let us know what you tweeked in your diet....I could certainly do with a tweek lol x x x
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