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new fibromyalgia diagnosis

Posted , 5 users are following.

chrissyboo
chrissyboo

It has taken a very long time for me to get a diagnosis and along the way i have lost all my friends and all my confidence and self esteem. I have spent the past few years in my living room with very occasion trips out in my wheelchair but i endured it because i thought that once i had a diagnosis there would be some kind of action plan and i would be on the road to recovery. What actually happened was kind of "there's ya diagnosis see ya !" I feel so isolated and cannot bear the thought of being stuck here forever. I've been searching for support groups but there isn't one by me ( no suprise there !). My doctors aren't even worth mentioning ! I have no idea what to do next, any ideas would be grately accepted.

1 like, 19 replies

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  • tiswas24537
    tiswas24537 chrissyboo

    Posted

    i am in north yorkshire and in the same situation have no friends and no out lets 

    .i am hoping to move to scarborough this yr i am in filey at the moment ,theres more to do there and closer enough to get to more things by taxi without it being extremly expensive. 

    i dont know what to suggest hun, the isolation of this condition is the worst part.

    could take up a class just once a week or something just to get out something like art , or yoga for beginners . sorry cant be more help .just thought you would like to know your not alonelol

    • chrissyboo
      chrissyboo tiswas24537

      Posted

      Thank you it does help to know your not alone :-) although for your sake i wish i was. I have tried organising a class but something seems to go wrong. Either taxis not turning up or class being cancelled, which somehow knocks my confidence even more. I'm in wales btw
    • tiswas24537
      tiswas24537 chrissyboo

      Posted

      yes i know the feeling thats what its like in filey, its a really small town 

      really a retirement town , so nothing much happens ,thats why i feel the need for a move to a bigger town , with a bit more going on .eek

      would it be possiable for you to move area to where there was more happening . i wish we were closer we could at least go out for lunch once aweek smile, with not being able to work iv made no friends since i moved here

      . people say they understand but they dont. so it would be nice to have a friend with the same problems at least we could allow for each others bad days etc .

      you would think all the people on here you would be able to link up with folks in your area wouldnt you not found anyone eles in north yorkshire .theres been people on here from wales but then would they be closer enough to you .

      . its very lonely i have my music and my kareeoke i do at home that blows the cobwebs away when iv got the energy . cool i am more of a rock creek than a rock chick nowadays but still love my music .

       iv started doing pictures with just lots of colures i can t draw so its just pages of colour.biggrin i bake when i am up to it ,smile and i lke  to to do quizes 

      iv brought an old menza book and work my way through the pages just in the hope i dont loose my mind as well lol and i also do spot the differance advanced ones . but it still dose not fill the gap of a friendship  ,but i suppose its better then nothing .cool 

    • wendidly643
      wendidly643 tiswas24537

      Posted

      See my post   May be someone just around the corner from you  You never know  Good luck x
    • chrissyboo
      chrissyboo tiswas24537

      Posted

      Sorry for the late reply i fell asleep. Thank you very much for your ideas. I have my hubby who does everything for me but is always too busy to talk to and when he's not he just doesn't get it. I also have two small boys plus a teenage stepson (who is a godsend) so

      i dont have much time to do things for me although i do try to, i make dolls bags etc when my arms and hands are behaving but i miss having friends to confide in or simply just have a giggle with and really need to talk to someone who understand. All these replies have really helped me feel less isolated so again i thank you so much :-)

    • tiswas24537
      tiswas24537 chrissyboo

      Posted

      hope you are had  a better day today and have a plesant evening .iv managed a hairderssers appointment didnt think i would because after a about a 4weeks flare of non stop pain twitching and stabbing and extreme tenderness , iv gone straight into stomach cramps and nausea , 

      honestly if i was a horse they would shoot me .razz

  • wendidly643
    wendidly643 chrissyboo

    Posted

    Hi Chrissy

    I know that feeling exactly but today whiilst nosing about online I found a support group on Facebook  https://www.facebook.com/pages/Fibromyalgia-Support-Group/100304333690?fref=ts        ; They list where each person is from and I have happily found one lady not too far from me  We hope to meet up and at least keep each other company now and again   I am really looking forward to having someone who understands my illness to talk to   Will be my social life as I havent been out anywhere interesting for a while    We are all here Take heart and good luck x

    • chrissyboo
      chrissyboo wendidly643

      Posted

      Thank you so very much for your reply i will check out that site. It makes a difference just knowing lovely people like you are here :-)
  • wendidly643
    wendidly643 chrissyboo

    Posted

    My earlier post has gone to moderator as it included an email link but try looking on FB   I found a site that lists where FB sufferers are and have found a lady very close to where i live  We will at least go for lunches and have an ear to share our illness and its effects with   Site on FB is Fibromyalgia Support Group and every so often they do a roll call asking people where they are so pockets can get together   Good luck and remember we are all here for you   
  • wendidly643
    wendidly643 chrissyboo

    Posted

    May be a good idea if this site done the same   I am on the Wirral between Liverpool and Chester btw
  • anne90395
    anne90395 chrissyboo

    Posted

    Hello Chrissyboo,

    So sorry to hear your story, I think it is a familiar one for us FM sufferers. I also have become very introverted since my diagnosis, but am very lucky to have a lovely family. We need to keep positive, I think Tiswas ideas are great for keeping mind active. Praps you could try again with groups, or put a notice in doc surgery or local village, asking if there is anyone nearby.

    I think Wendy's idea about putting where we are on here is good, also. I am in Hampshire no good for you Iknow!

    Take care, Anne

    • chrissyboo
      chrissyboo anne90395

      Posted

      Thank you very much for your reply. I have my own family, hubby and 3 boys but their lives seem to go on around me if that makes sense. I suppose everyone just wants to be able to talk to someone who understands. I miss simple things like taking my boys to feed the ducks or going for a walk for no other reason than to walk, silly really :-)
  • Flowerlady
    Flowerlady chrissyboo

    Posted

    Hello Chrissyboo..Know exactly what you mean, I have no friends or confidence either, I have a grown up family in their late 30s and grandchildren. We recently moved to a new area, my children don't visit as they say its 'too far to travel' Its half hour by car so therefore I don't see 4 of the grandchildren, My eldest grandson '18' comes on the bus every Thursday and has his tea with us, and we take him home later.. All I do daily is drink tea, and look through the window at all the birds on the feeders we have..With this Fibro, I have gone from a healthy happy working woman..to a miserable lonely grandmother, gazing through the window..So sad...sad
    • tiswas24537
      tiswas24537 Flowerlady

      Posted

      i know its the crushing fatigue that gets me ,when ever i try to do stuff it just puts me of trying again . i go all reclusive then i have another mad rush at things ,i know how those animals feel stuck in them small cages now i feel so frustrated , all i want is to walk and walk walk i love being out side and being physical .its just not me being sat on a chair looking out at a world having a life .eek
    • chrissyboo
      chrissyboo Flowerlady

      Posted

      Oh i'm so sorry that you are isolated too. My parents don't bother with us, maybe see them for a couple of hours every month and my siblings have both moved away and i see them rarely. If notjing else ot showed me that my best buddies were really just fair weather friends so that's a lesson learned. Thank you so much for replying and you can feel free to contact me if you want to :-)
    • chrissyboo
      chrissyboo tiswas24537

      Posted

      Yes totally agree ! for christmas day i decided i was going to carry on like a normal person no matter how hard then spent the next couple of days either asleep or zombie like ! The worst is if i have to go to a medical appt and then can't get a taxi straight away to come home, I then get cold and it takes all day for me to heat up and im exhausted and achey like flu for a couple of days ! Hope the mild weather hurries up :-)
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