Got my diagnosis, so now what!

Ok so after a long time of doctors saying there was nothing wrong with me, all tests came back clear so of course that meant I was lying and making it all up in my head!! I have found an amazing doctor, and he said yes you do have fibromyalgia, said my other doctor was an idiot as some of the stuff she said to me was completely untrue (regarding medication and symptoms etc). Then he said I also have something called T4! which is apparently something to do with the 4th vertebrae apparently. He has booked me in again to see him in a few weeks to have a chat about it all and he said he was going to show me some stretching exercises to help

So I have had a few days to let it sink in, at first I was just thinking how great it was to finally have a doctor that was listening to me and had me diagnosed in 20mins when I have spent a year trying to get other doctors to understand how bad I get. But now it is starting to sink in that I have this for life now I am only 28 and a bit scared about dealing with this long term! I have been so focused on getting a diagnosis that it was such a relief, but the relief is starting to wear off and turn into a bit of panic as to how this is going to affect me in the future. I am probably over thinking it, thinking too much into the future and just need to deal with it day to day but feeling bit scared and confused now. Not how I thought I would feel.

x

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  • I was 25 when diagnosed with a really wel informed gp cos that was 27 years ago.... I think I was lucky as my only symptoms back then were chostochondritis ( rib pain) and ibs which would come in flare then I would be fine for weeks manged swimming driving working full time... Them at 32 I hit all sorts of problems had to give up work at 35.... Then had another 8 years not too bad still getting about driving swimming cycling, then 4 years ago I got osteo arthritis and that together with fibro sent my body into meltdown .. Now walk on sticks and have a mobility scooter and disabled bus pass..... I guess I am trying to say if you can exercise I found however small it does help keep fibro under control if you have trouble sleeping get an anti depressant that suits you I had to try 3 and getting sleep makes all the difference I also take a small dose of muscle relaxant... Also less sleep makes me feel much less stiff in the morning... Just recently discovered this... 6or7 hours sleep is plenty... Any more and I seize up.. But that's just me... I guess what I am trying to say is you may be lucky and once you get the right meds in place you may be able to have good quality of life for some years yet..

    Good luck and see you on here again.... I am up early to watch live F1 and it suits me to get up around 6 am.

    VG x

  • Firstly it's okay to feel scared, worried, concerned, apprehensive and all those emotions thats going on inside your head at the mo.... it's normal and fine to feel this.....!!

    Maybe take some time out to just digest it first and think right, well i have fibro, thats a good start to at least know what you are dealing with... then take it from there... !!

    You will get plenty of support on here from everyone. I only joined the site a short time ago, although havent posted much (been having a rough time lately) but have read lots and it does help to hear how other folk are dealing with this... So you will be okay... take it a step at a time...!!

    I waited years before i was told i had fibro, osteoarthritis and irritable bowel, but after years of being ill i realised that to be honest although it is a relief to feel that someone is taking you seriously and doesnt think your just off your head, it's also nice to have someone talk with you about your illness and validate it.

    When it comes down to it, you are the one that is dealing with the symptoms as they come and go or stay, whichever the case may be for you and you will find that no matter what support you get (although support from family and folk you mix with on a daily basis is a great help and it is important to educate those folk how it affects you, what you are feeling, what you need from them as a support and to be able to be allowed to feel what you feel without being judged, or someone coming up with a magic cure, as folk who care tend to do that, but it just exasperates your mind and body, when it doesnt work).

    You have to find a way to manage your own symptoms, finding out what you can do to ease them and help yourself in any way you can, tons of information about fibro, possible things to try like, diet, light exercise, meditation, a quiet space, talking about it on here....etc... and like someone mentioned what medication that suits you best to relieve some of the symptoms you have.

    The best thing i read about years ago was to learn to pace yourself. its easier said than done, depending on what commitments you have, but if you can take it a step at a time, deal with things as they crop up, but in the meantime, enjoy the good things and do what you can to think positive.

    Make sure if you can, surround yourself with positive people too...!

    YOU CAN STILL HAVE A LIFE WITH FIBRO... you have to try and learn to manage it as best you can and whatever works for you.

    I am still learning to do that (since 1999) so dont feel bad if it is a constant thing for you.. Dont be harsh on yourself.. be kind to yourself and you might find that you have to think a little selfish sometimes, its not a bad thing, as that is you caring for your own body and health and others who support you will understand. So if you feel ill and your friend wants you to pop over, you need to say 'no' i cant today i feel unwell. Don't think that, that it is wrong to say no to folk sometimes, or a lot of the time, it is very important that you care about yourself.

    I've rambled on some there, sorry about that.. i wish you well... try and stay positive and make the most of life as best you can. Keep talking to anyone and everyone that will listen and trust yourself, that you will find a way to cope with whatever comes your way.

    Hugs..... x

  • Thank you so much for the advice. I really appreciate it. Yeah I know that I have to try and find my own way of dealing with my symptoms, and I guess that is is just going to take time and trial and error.

    I had to give up my job because of the pain that I was in, I already feel in the year since I have been bad I have lost friendships, as they got sick of me cancelling all the time so they just stopped asking. I don't think they really understand when I say I am too sore/tired to leave the house let alone go on a night out a meal or even for a coffee. Even when I am saying it I know it must sound crazy to them that I can't even go out for a coffee, but as I am sure people on here will understand just how much that could take out of you, something so simple. So in a year I have already lost a certain amount and I think now it is sinking in that I have fibro I started to panic about what else might happen.

    I think you are right talking to people who understand what you go through is a big help. I am lucky in the respect that I have a very supportive boyfriend, it has taken time, but he understands that on my bad days I really can't do anything, and even on my good days I have to be careful not to do too much or I will have even more even worse bad days!ha I try my best to keep a control on things but when I have a good day I just can't help wanting to get busy and do loads of things I have missed out on when I have been too sore. And this is something my new doctor warned me against that on my good days I need to be just as careful with what I do.

    It is just going to take time I guess to deal with the fact that my life is just different now. It isn't all bad since I had to stop work I took up crocheting and now starting to sell the bits that I make, and I really enjoy it. And it is not something I would have done if I was working as I was always so busy. So there is some positives I guess!hehe. It is just such a weird thing to have fibro, and I think people struggle to believe me or understand what I am going through (family and friends). But hopefully now I have a diagnosis they will also have to come to terms with this.

    The new doc has put me on some new meds, so fingers crossed they might be able to get the pain etc under control.

    Anyway thanks again, good to know there are always people on here who have been through it all themselves

    xx

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