Hate fibro ,hate me , really hate being able to do nothing ,

Hi I'm new to the site but not new to fibro ,IV been diagnosed five years ,but knew all the symptoms but not the diagnosis ,after nursing my mum with early onset Parkinson's ,and undiagnosed fibromyelgia ,back to me I was diagnosed at 45 after my hectic buzy life just fell into a thousandfold bits of me ,I'm still struggling coming to terms with slow snail painfull usless me ,but in five years I have learned a very valuable lesson which is slow slow snail ,or flare so bad I cannot lift my head off the pillow xx

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  • Hi jacss173

    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 have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I am so genuinely sorry to read of how you are feeling about yourself, and I was wondering if you have talked to your doctor about this? Have you asked your doctor to tweak any of your medications to try and help you?

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • I have had fibromyalgia for twenty years and I have had spells where I felt totally useless and this led to me being in a very dark place alone. Thankfully through some friends and family I am back in the land of the living and pacing myself with activities that give me a sense of achievement, the opportunity and challenge of getting out and about and also an aqua aerobics group where I can exercise at my pace in water which is so good. That is my one tiring activity but it is also strangely energizing.

    My lifestyle has changed drastically gone is my karate, gymnastics was first to go during early undiagnosed stages, gone are my voluntary work with Air Cadets.

    I have changed to more sedentary activities which if someone said I would do I would never believe them. I go to two sewing groups one is the Embroiderers Guild, Do Not be fooled by the dated name fabric art of all sorts using all sorts of things including a soldering iron!!! I love it the other is a quilting group called the sew n sews great name great group and I was an absolute beginner at both embroidery and quilting. I also sing in two choirs and play in a community concert band. The musical activities are the only ones I have from my old life.

    The beauty of my groups they only last a few hours at most then I get home and rest feeling I have done something. The house will be there when I am not, I do what I can which isn't much as my husband insists I get rest regularly between activities. My week is now mapped out and I plan for my outings. Flare ups are the worst and I am not perfect I still overdo things and pay the price.

    I am sorry you are having such a rough time, I have been there and you honestly feel there is no way back. I hope like me you have some support. This makes a difference.

    If you need to rant, rant these forums are great as everyone here is going through or has gone through what you are. They can appreciate and empathize one hundred percent.

    Take care. Rest, eat well and plan do do something y o u enjoy even lunch out with a friend. Short times and rest after.. my rest times if I can't sleep I am an avid reader and I disappear into my books. It doesn't make your pain disappear but it gives you something to focus on.

    I hope you find relief soon. It took me years to get out of my dark place and I will fight to keep out now I have found a way to feel functional again.

    Don't feel bad about needing to rest and get to your doctor and make sure they are aware what you are going through. I suffered in silence through my worst period and they were unaware what I was going through... my fault entirely. If doctors don't know the severity of our flare ups they can't help.

    Gentle hugs and I pray that you find something in each day that gives you comfort and a sense of peace xxx

    Liz

  • Hello and poor you....I think we have all felt like a waste of rations at times and look at the future with fibro and wonder what comes next! I found distraction is good so when I cannot do say the gardening I paint and sketch and play with air drying clay...2 little granddaughters love it!!!! and I am an avid reader. I never do ironing anymore and nobody says I look scruffy, it isn't important and housework as and when I can right my name in the dust and nobody thinks my house is dirty! The things that seemed important to me many years ago I realise are not....fortunately I have a loving and supportive husband and family....I found out what is important to me with fibro and have after lots of trials found the meds that suit me....I wish you a warm and comfortable day and hope we talk again soon.....xx

  • Hi jacss173, Good morning, sorry to hear that you are having such a hard time at the moment, I am 46 I have had fibro for around 16years now and your right we just have to take things slow and find other ways of coping im back in my bed after getting up with my little boy although my other half sorts him out, i just like to get up and see him in the morning and take my cocktail of medication,

    I still get angrywith the world as i can't do all the things I used to especially having to stop working , sometimes when I first wake up ( that is if i have been able to sleep) I forget that I no longer go to work , but we just have to keep going and find new way of coping ,

    Take care wishing you a pain free day as possible

    Loraine x

  • Hi jacss173 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

    I'm so sorry you are so low my friend but I remember this feeling well after yrs of being told I had all sort of conditions & never really knowing & thinking I was losing my mind. All I can say my friend, is you have come to the right place and you will meet new friends & learn to manage your condition and it does get easier. Google the Spoon Theory, this helps a lot of members & teaches you about pacing yourself. I look forward to chatting with you on the forum.

    Peace, luv n light

    Jan xx

  • Hi jacss173

    You are so right the pain from over doing it is a nightmare learning not to over do it is difficult,and some day's not doing alot still leaves me in terrible pain.Looking on the bright side summer's on its way I'm hoping the heat will help.

    Sending you hugs.

  • Hello jacss, just remember the 'tortoise and the hare'. It is so hard to learn how to pace yourself especially if you are doing something you love or it is a compulsory appointment etc. I still fall into the trap of overdoing things and Ive had fibro for years. If you get a flare when you have done something great just lay back and enjoy the memory. If it was something boring and necessary then lay back and feel smug because you have got it out of the way. I like to break rules and I do against all advice - motto 'fun and flop' - but that is the way I cope. You will find what is right for you by trial and error - good luck and I hope you have as much pain free time as possible. Helen X

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