Do we end up constantly in pain ?!!!! With no good days in between !

Cause I'm starting to get really scared, I hope to god it doesn't I'm not getting any good days anymore, I was soo lookin forward to finally havin a life once kids grown havin time for me ! Now this !!!!! 3 yrs diagnosed, yrs suffering but coping cause of good days, even good weeks occasionally, I can't remember last real day of bareable pain. Is this it ?

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  • Iv read this again, and I sound like a pity full narna ! Feeling sorry for myself, when it's really bad I always do !

    I have beautiful kids that iv raised on my own 23, 18 and a 12yr old, 23yr old daughter an son-inlaw are giving me my 1st grandchild in June (boy) I cant explain how happy I am, life is worth livin an pain well ! We have to live with it x

  • You don't sound pitiful at all and we all deserve a moan now and then! I am in kind of the same boat as you, only diagnosed since May last year but having pain etc. for a few years.

    Lately my pain is bad everyday and really bad some days and getting no OFF days any more.

    My children are all grown and I have one grandchild who is 3 years old. I am very lucky and very happy but I do get down days. We are bound to get down when we have pain and I like you wanted to do lots of things now my kids are grown. I have my husband too who is my rock but hate burdening him and feel guilty when I am not up to doing something or going somewhere. Even though he doesn't make me feel bad I feel for him. It's the same with the kids, last week I had to cancel lunch with my daughter, well it was her who said we'd do it another time cause she knew I wasn't up to it.

    I am only 49 and want to live my life, and yes I know there are people suffering much more than we are BUT pain can do a lot to the mind.

    I am a positive person but we can't be smiley and cheerful 100% of the time.

    Congrats on your wonderful news :)

  • Thank you pippa,

    I have lost so much and I am angry, sad, scared, lonely, so much more.

    Being able to put into words my feelings and knowing that when someone reads it they understand.

    Seeing how many people are on this site is mind blowing, reading their stories and yours pippa makes me realise I'm not alone and my story has been told in so many different versions and everyone suffers greatly.

    I'm new to this group pippa and I hope soon I will be putting something cheerful on here lol,

    Louise xx oh and his names going to be Seth xx

  • It's good to moan sometimes your not on your own I can't remember the last good day I had I have even been drs 4 times in 2 weeks because I can't stick the pain anymore off to pain clinic at end of month not looking forward to it as got to travel 2 hours to get to it but must keep an open mind again my husband is my rock he is so understanding and so is my sister she does so much for me I also have a friend that takes me to most my drs appointments but I do find it hard having to ask someone to take me somewhere or undress me as I can't do icy myself I am 30 with no kids xxx

  • Omg I'm sorry ur so young, I'm 45, being 30 and suffering with this horrific condition must be so difficult, I hope they get ur pain sorted soon I really do.

    Louise xx

  • I don't think it matters how old you are with this condition it is crippling to the individual as we all suffer with different symptoms and suffer in different ways I might only be 30 but I find away of just coping I do have pissed off days but I always look at it that there is someone out there in a worse state than me no matter how much I am suffering sometimes even being carted of in a back of an ambulance again for another 30 min of hell to get to hospital as they are not the most comfortable of things feel every bump as they go along but as I said we got to keep our chin up grit your teeth with the pain and try and smile when someone asks you if you are ok xxxx

  • I am glad that I am not alone in hating ambulances The swaying makes me feel sick and dizzy bringing on brain fog. Heck with the fatigue I dont even have the strength in my legs to get up the ramp. The paramedic put her hands on my bum and pushed me up :)

  • Hi Weesie and welcome to our fibro club, I don't recall seeing your name before so incase your new Welcome.....I've had fibro amongst other conditions since I was eleven year old I'm now Seventy two, ive had many days when I didn't think I could carry on especially when I had my two children, but you do, .. I never thought I would make it to the age I have as I had so many thoughts of doing away with myself. But the thought soon goes away, I'm so glad cos I have four wonderful grandchildren, so no matter how much pain I'm in to see my to children and four grandchildren makes the pain worth while, if that makes sense.....you don't sound pitiful at all, you rant and rave and moan all you like we will listen...we all know what you are going thru and can. Honestly say we do understand.....sending you gentle hugs and. Handful of sunshine....Dee x

  • Hi Weesie1968

    I hope that you are feeling as well as you can be? I have read your post with so much pain and sorrow for what you are enduring at the present time. Please do not think for one moment that you are simply feeling sorry for yourself as this is clearly not true.

    You are an amazing, wonderful, unique individual, who is the most important person in the whole wide world to those in your life who love you. From the sounds of it you have incredible and wonderful children and soon a beautiful grandchild that will make you feel so young once more.

    I would say that you have performed every parents dream in what you have achieved and you should be so proud of what an amazing job you have done! I sincerely think a little rant on here to alleviate some of your frustration about your illness is nothing compared to your successes.

    All my hopes and dreams for you

    Ken x

  • Hi Weesie, u have a good moan, that's what we're here for, it helps to get it off your chest and we understand!

    I know how you feel, long flairs feel like they'll never end. Do go and see your GP and see if there are any changes in your medication which may help. Also (if u haven't already done so) ask to be referred to a pain clinic, as they can help with pacing and relaxation.

    I was diagnosed 2.5 yrs ago (have had symptoms for almost 7 yrs, since my daughter was born. I'm 36 now). For most of this time I just got worse and worse and wondered when it would stop. However for last couple months, with a combination of pacing myself, coming off most meds & just taking gabapentin on an as needed basis for worst days, taking Vit d (I was deficient) and learning to accept my limitations (using a mobility scooter to get around & not expecting too much of myself), I seem to have gotten on an even keel. I still have flares, but luckily they only last a few days and I tell myself they will end. I also try to do something I love doing (a hobby) at least once a week which really helps boost my spirits.

    So in answer to your post, I don't think it is always unbearable for all of us, all of the time, there is hope! I think/hope you are just in a bad flare. Do see your GP and ask for help.

    I hope you find the right treatment plan for you xxx

  • Oh Weensie,

    I have such a feeling of sympathy for you. It is hard enough for us "oldies" but for you well you are a marvelous person and you must realize IT IS NOT ALWAYS BAD!

    All of us have bad bits but excellent bits too. There is always HOPE that tomorrow will be easier and can be get your meds right and your diet and most importantly your sleep patterns. When we sleep it is not as bad.

    So if like a lot of us you are a poor sleeper try an change that work on more sleep.

    Remember that we are not doctors and any thing we say is personal experience so always check with your doctor before taking any thing that he/she has not prescribed . So go to your GP and see if he can help!

    Let us know how you can on please

    xgins

  • hi there , yes the pain will always be there can not lair as I have had it 3 year with pain killers , but life goes on honey , you have to say to yourself when you open your eye am not letting this pain take me over , as if you do life end's , , as like you I give up at the beginning when it was bad , but when you have family that love you and grandchildren to look forward to you look at yourself and say stop I can do this for them , yes the pain , ace's so bad , but the laugh's you get from the children and family make it go away for a moment in thought , I don't know if I make sight as my spelling is bad lol... but I wish u all the best honey , we are here for everyone to chat anytime xxx

  • Some times flairs can last for months. the last realy bad flair i had lasted for months but did eventualy settle. It takes time to find out how much the the fibro monster will let you do before having a paddy. so for now I would say to try slowing down as much as possible be kind to yourself and try getting reffered to pain clinic. hugs sue

  • Thank you to all your replies, everyone on here sound like wonderful people and just knowing we are able to talk to one another is so comforting in so many ways.

    Cookie72 I think your such an inspiration to us all, your comments and your kind hearted ness filled me with such hope for the future thank you so much x

    And TheAuthor I could marry you lol, you sound amazing and made me feel so proud of myself thank you x

    Lovely to have connection with you all, Louise xx

  • Hehehe Nothing useful to add but here goes anyway.

    . Yes there are bright times in between flares etc. Why not join in some of the lunacy that crops up almost daily. It's healthily distracting.

    A big YES, this is the place for a moan, rant or cry without repercussion. Sounds like you have a lot to look forward to.

    There's barely a question that can't be answered by someone's experience so don't feel you need to hold back.

    I don't need fibro to feel pain, it came along as a bonus prize. I must have been really bad in another life.

    Gentle hugs :)

  • you? bad? rubbish

  • Oh, Sue. You've won my heart. You might not like the rest of me though. Not a pretty sight :D :D

  • Hi Weesie i think something to bear in mind is the time of year, the cold damp weather makes paim and stiffness worse and the lack of sunshine or qbility to leave th3 house mqkes us feel depressed. I seem to have managed two good days since christmas. Ialways think february is worse month of the year and thats why it is eo short, so we cwn get through it !!

    I have to remind mys3elf that spring will soon be here and things WILL improve. Chin up, xx

  • Hi Weesie and everyone else. New to fibro club although have suffered this type of pain for half my life (50 now) like many of you I'm sure, I've been to many doctors who don't actually acknowledge the existance of fibro and think of us all as hypochondriacs, that makes me so angry

  • Hello and welcome to the nuttiest fibro club going. join in with a rant, a moan, question or any thing else you can think of you are most wellcome.....Have you been onto the fibro action website yet ? If not you can get onto it by going to the top of the page then click on the yellow butterfly. There you will find lots of up to date info....hugs sue see you around.

  • Hello Jenny-Wren63

    I sincerely hope that you are as well as can be? I would like to say hello and welcome to the forum. I really hope that you find it as useful as I do. I look forward to bumping int you around the forum.

    Take care

    Ken x

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