No one wants to know!

I'm not sure if it's just me, but every time I go to the doctors with something wrong, even something simple, they put it down to Fibromyalgia? It worries me that what if someday I did have something wrong (Which I hope I won't.) The doctors will take no notice and just assume it's Fibromyalgia again! It's like they're not interested, once you've been diagnosed, that's it! Does anyone else have this problem?!

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  • Hello Emma, I personally think many of us can relate to this to some extent. It almost seems that as long as there's a name to attach all our symptoms too, Fibromyalgia will do.

    Have you considered seeing another GP at your surgery, this might help your current situation? Failing that perhaps asking for a referral to a Rheumatologist might help so you could be fully assessed and any problems worrying you could be discussed then too and hopefully you would receive treatment for these.

    Please know that we are always here for you and we do understand. Admin and Volunteers here have Fibromyalgia too, so we all sing from the same song sheet.

    I hope you manage to see someone who understands you and is sympathetic to all your symptoms very soon. Take care.

    (((hug))) xxx

    Libs

  • Hi Libs.. It really is irritating, I have seen other doctors but they all seem to be the same! The only time I've seen a Rhuematologist was when I was diagnosed, and to be quite honest, once I was diagnosed, it was like she couldn't get rid of me quick enough! Her exact words were, "There's nothing really we can do to help you with Fibromyalgia, you just have to learn to deal with it, all we can do is help you get the right diagnosis, and now you have this, we will no longer need to see you again." And that was that, a bit rude if you ask me! Lol.. Hopefully I will find a doctor soon enough who doesn't put everything down to Fibromyalgia, but until then, it is what it is!

    Emma xx

  • You are entitled to a second opinion Emma, try another GP at your surgery first is my personal advice. :) xxx

  • dear emma - congratulations you have ended up in the too hard basket - the one thing we all have is grit and determination - yes you will have to find a compatible health care person and other people with the syndrome because nobody else can really get their head around this. My initial diagnosis back in the late 50's was growing pains - my father then took me to a younger dr who diagnosed fibrositis - no cure but some effective treatments and it does come and go so you may have large chunks of time where you can get on with your life. It affects people in different ways - no two people are the same. take care look after yourself - very important principle - don't push yourself - pace yourself best wishes xxx

  • Im new on hear so leas bear with me as I'm very Dyslexic & my memory is shot which doesn't help . Thank u x

    Right i think every one is right it took 6 years & 4 Gp's that refused to c me (time. Waster) to get diagnosed . An then another 12 months to c a rheumatologist for a 10 min appointment can i touch my head then my toes . Answer u have fibromyalgia your doctors right keep taking the tablets . I have 2 slip disks sponerloses of the neck somthing which i can't say or spell or say with my feet & now a underline problem with my heart . Some how i think he missed something ?? Im going back to my gp an not only switching specialist in switching hospitals . Im tied but ill never feel eny better if i don't get the help i need . So i say just keep trying as much as u can &

    Good luck Emma x

  • Try taking someone with you. Having someone who can back you up and help remember what advice was given makes a lot of difference. I was treated better for a start. It seems like they think you are more able to sue if you have a witness is my guess!

  • Hi I can relate to the fact drs put everything down to fibro !! I went for months with slipped disc and sciatica drs just kept saying flare up fibro !! But I couldn't put foot to floor !! So I paid to see consultant. Then paid for m, r I scan over £400 in total but at least he then put me on his nhs list and I've had 2 injections to date !!!

    I've had a very bad knee since and dr did send me to hospital but when I went to gp for result she said that the consultant had said I probably have a torn cartlidge but because I've fibro they couldn't be BOTHERED TO TREAT AS PULLING ME ABOUT WOULD HURT THE REST OF ME !!!!!!! I complained and now I'm having MRI scan in feb !!! The moral of the storey COMPLAIN BE FIRM NOT RUDE GET YOUR POINT ACROSS !!! Just because we've fibro doesn't mean we won't have other things wrong with us in the future !!!!!

    We know our bodies and we know when it's not fibro !!!!!!! Take care out there xx

  • well said

  • Absolutely right!

    Fibromites get ill just as much as anyone else, and if you have symptoms that are new for you, and they don't clear up rapidly with sensible home treatments, then you must tell the doctor exactly that.

    My doctor isn't sure she believes in fibro, but nevertheless, she is very kind, and if I have an appointment will always check me thoroughly to see if anything new has cropped up.

    She has been a lot happier since I was diagnosed with both osteo and rheumatoid arthritis - I feel that she knows where she is with those conditions!

    I suppose we have to remember that doctors are people, and people are very strange. As you say, we have to be firm, polite and persistent with them!

    Love ...Moffy x

  • I love you Moffy. You are so lovely in the way you put things. Your last sentence puts me in mind of the fact that if we are talking to people who do not know about FM then we become the teachers/parents and yes, speak politely and explain patiently, even if they are rude [like teenagers can be] and hopefully you will get past their ignorance and get the help you need. My doctor is very open to learning, thankfully, and brushed up on his knowledge prior to diagnosing me, but it was like being a guinea-pig with all the tests to count other things out. It was nice though. Someone was finally taking me seriously and listening to me [so long as someone else was there and I wrote everything down - keeping a copy!]

  • Hi Sarah.. I know quite a fair bit about Fibro, I read up on the illness and learn new things everyday, this is what I meant, only WE know how we feel, which refers back to my question, 'Why do doctors say it's probably to do with the Fibro?' When we know it's not, otherwise we wouldn't be there in the first place! It does irritate me, but don't worry, I'm very, very rarely rude to people, let a lone my doctor who has known me for as long as I can remember :) I'm going to make an appointment next week with him for something that's not related to Fibro, so if he does say it's down to the Fibromyalgia, I will just politely explain that I know how my body works, and I feel this is something out of what I would consider 'ordinary,' and I'll see what he say's!

    Hope you're feeling as good as you can be :)

    Emma x

  • The thing I say to my doctor is.. 'it is probably my fibro but we should probably rule out everything else first shouldn't we, just in case?' It seems to work. And my doctor has actually said to me once now, 'you can't just put everything down to fibro' . I am sticking to that doctor like glue now. She will have missed me this week, it's the first week I haven't been in for ages! LOL.

  • Hope your good health continues Mel.

  • Lool, bless you! At least she know's that Fibro isn't the ONLY reason we go to the doctors! You should definitely stick with her, she sounds like she understands you fully :)

  • You have had some good answers here. If your doctor is not helping you, you need another opnion. But maybe try taking someone with you first, and take a list of ALL your ailments as you are not a doctor and cannot, therefore, know which is linked to which. Good luck.

  • I definitely have got some good answers, it's helped me! I will do, I usually have my mum come in with me (Like most teenagers do!) Lol. My mum has Fibromyalgia as well, so then at least she can explain that as a Fibro patient, she has never come across what I am experiencing, I'm not going to say what it is, as it's kind of embarrassing! But I will definitely let you know how I get on when I go next week :) x

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