Results from rheumatology :(

So, I went to the rheumatology department on Monday at my 'local' hospital, (sorry it's taken so long to get back on here, not that I have regular readers but still, apologies :P) all ready to moan and complain after being in COMPLETE agony and the depression really getting the better of me despite my constant attempts to pretend to be happy for the sake of others, she was very nice actually, she sat and listened, wrote EVERYTHING down I was saying - a rarity among health care professionals, is it not? - and really took notice of everything. I was V. impressed, and told her so at the end of the appointment.

She poked and prodded asking me if this hurt and that hurt and how much I could do etc etc. And of course, everything hurt - my God the pain in my shoulders, upper and lower back and collar bones was searing! I didn't even realise that it was so tender! And then she proceeded to sit me down. (after i had made myself half-decent again)

[I should probably point out at this point that the referral was made because my mother wanted to know if I DEFINITELY had fibro, because initially it was just a "Fibromyalgia - ?" situation and we really needed to know before applying for DLA etc.]

You know when a doctor takes a deep breath and looks at you in THAT way before telling you something after examining you and you just want the floor to eat you up, you don't want to hear whatever it is they have to say? Welcome to Monday the 5th of November afternoon at approximately 5pm.

She quietly and calmly told me that it was absolutely certain that I had fibromyalgia, she has also told me that the dose of amytriptalyine I was on was nothing like the the dose I should be taking in order to help me sleep, and help the the 'level' of depression I am 'suffering' from. I also got told, after getting a certain negative diagnosis from my GP for hyper-mobility, that I have one of the worst cases she's ever seen and apparently, she's seen hundreds.

Great, this is all I needed after everything recently.

My heart fell through the floor. I'm pretty sure it's half way to Australia now. How do I manage? How do I tell people that not only do I have fibro that is limiting anything and EVERYTHING I can and can't do, but now I am aware I also have something that is pushing my already-on-breaking-point muscles and joints up and beyond their limits?

I have been exceptionally fortunate actually, I had my friends BEGGING me publicly on facebook to return to college after half term )I couldn't manage the first two days of my four day week) which really spurred me on and encouraged me, but I'm paying for it now :( Oh well, only one more day. They are all walking extra slowly for me to the train station and around college and such, they're amazing. I can't believe I ever doubted their loyalty and whether they did actually like me, or they were simply putting up with me. I'm ashamed, but over the moon at the same time - the care and love they've shown me today was amazing. Let's just hope it lasts? :)

11 Replies

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  • I'm realy happy for you that your friend are all pulling together to make things a bit easier for you,sometimes its just the little things that can make a big difference,they've always been there for you despite what you may have thought!as for the results...well I think now you have got confirmation it may help you to try and except what you have got and try and start finding ways to make life a bit easier for yourself...with the help of your friends,oh and I'm a regular reader of yours and I'm sure there's plenty others who like to hear how things are going for you,and remember we are always here for you!

    (((((((((((((Soft hugs Hun)))))))))))))

  • It's utterly ridiculous how happy that made me ^^ thankyou :)

    My tutor has understood things a lot more now as well because I asked the specialist to just write me a little note to my tutor just explaining how hard I'm finding things at the moment and that whether she thinks it or not, I'm doing exceptionally well to be coming into college at all and she took that pretty seriously fortunately :)

    Thankyou!! :)

    Likewise<3

  • Hi haapy for you that you got the diagnosis atleast it makes things more to light of what you do have and now you can focus on what help you are entitled to as it is extreemely frustrting not knowing what you have and bieng passed from pillar to post!

    It is not nice at same time getting diagnosies but in a sense it does give some relief to the pain you are suffering too.

    It is lovley you got support too as not a lot of people do have support and live alone and have to cope (i cant imagine) Depression is not nice either and the best thing is having htat support around you aswell as many steer clear of things like this when their world is all happy happy and dont understand you.

    I had depression 16 years ago after giving birth i was at an all time low but the hubby am wiht now helped me out of that ..but suffering now with no breaks or a little release to what i feel is so frustrating and i get mad (another side of me that likes to pop out at times)

    I was diagnosed with BHMS i am luck i dont have the life threatening one 'vascular'

    but i have all this and its so frustrating as my time now is getting even less in tryng to run work and staff its so hard and my physical abilities in this cold weather is progressively getting harder to the state i feel i need to sit all the time and even that i be on bubble seat soon ..

    I went for Blue badge assesment on Monday 5th November and by did i suffer and in bed alll day Tuesday!! herendous.

    all of us have added illnesses and we just need to be there for one another no matter how little we have knowledge of each condition but jsut the support and a smile and a hug is lovley and the understanding too ..

    Bless and rest as best you can as no point saying hope you feel better .my best words are i hope you can get some relief in some way!

    I take Lyrica and not a lot of ppl think this agrees with them 'granted' as we are all different but for me its being 'Magic'!! but now am struggling so much. I was on Amitryptiline and was taken off, then Neurontin and made me so unwell.

    then i took Lyrica and i persisted i did not give up because i have my work to contend with so if you get the opportunity to try this please do!!!

    i am nearing the maximum dose now but it has been a great help not a cure but a help!!

    soft huggles and so sorry for the long long reply xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  • I know what you mean, it was just a little 'shaking' if that makes sense? And I was VERY sore from her looking and prodding everywhere and very teary before getting everything else hurled at me as well. But I'm getting there now :) I'm fortunate my mum was there with me really, or I'd probably have completely broken down xD

    I'm glad you had and still have your husband for support, everyone needs someone, no matter how independent they are. I'm like that with my parents, sometimes I just want to get away but obviously, not being able to I always ended up snapping at them and feeling terrible after. But they're very understanding. For which I will be eternally grateful.

    Yeah, I know what you mean, however sitting down all the time tends to aggravate my fibro, having said that though, so does moving around or standing up - you can't soon!

    Oh I know that feeling!

    Thankyou, and likewise :) I think all we can really ask for is help and a little relief until something big happens and people start really recognising it as a serious condition if you know what I mean?

    Take care and stay safe - and warm!! :)

    Don't worry about the length, I like reading :) xxxxxxxx

  • Morning Bethy,

    It is strange is n't it but to have it confirmed as Fibro is a relief. At least people can start to understand what you are going through every day. I had looked for a reason for the pains and the headaches, IBS all the rest of it for ages and when the rheumy agreed it was a variety of things but Fibro particularly it is as if there is a light at the end of the tunnel. It does not go away but we learn how to cope how to talk to our friends, when we need to just cuddle down and rest and rest. I am so glad your friends are with you and trying to help they will be a marvelous support.

    We are all here and we have been going through the fybro dance for some time so never feel alone just pop on and have a chat with us.

    Good luck hun xgin

  • Yeah, a real mixture of feelings really. But I think relief and shock were the biggest. Ah well, onwards and upwards :)

    I most certainly will do, thankyou ^^

    Take care and stay safe - beth xx

  • It is great that your friends are taking you seriously as I think this makes all the difference for you. And good on your mum for pushing for the diagnoses. I am what my hubby calls a 'FibroVeteran' lol. Basically my body is having its own private war, sometimes it wins, sometimes I do. Very rare I win but after 26 years I have kind of gotten use to it. I hope you get some meds that work for you, there is nothing left for me to try now and having stomach and duodenal ulcers prevents me from being a guinea pig anymore. But good luck in college and good luck with your DLA claim too xxxxx

  • It's made a HUGE difference, it's actually meant I can go out again! I went out this weekend and we just sat and had a calm, girly night in having a good bitch and moan about life, boys and college - something I've sorely missed as silly as it sounds. But it's really helped my mood as well, especially with hearing about how one of friends goes into a MASSIVE mood when I'm not at college and refuses to talk to anybody because she misses me so much. Sounds silly but it just makes you feel a little special, you know? :)

    Yeah - I can see that. I hope you keep winning as much as possible hunnie.

    Thank you very much, I'm sorry you can't keep trying pain killers and I REALLY hope you're feeling better soon.

    Take care and keep safe - Berthy <3 xxxxx

  • Well at present I am 5 weeks and 1 day into a fibro flare, 3 weeks and 4 days into a COPD flare and my cluster headaches are back lol, any other illnesses want to join the party? But I get used to it and I keep going, it is all we can do. The COPD may kill me one day but the fibro certainly won't. After all this time I would say I tolerate the fibro, and it lives around me and not me around it. If I want to do something desperately enough I will go ahead and do it and pay the price later. I think if you have people who understand what you are going through and are willing to see you through it then all is good. I have my family and a few very close friends as well as many new friends on here, so I am lucky. But some sufferers are out on a limb with no one to turn to. And this is sad, it should notbe this way for anyone. You keep up the good work and you keep having fun, that is what life is for, the fun times xxxxx:)

  • So pleased that you have such understanding and supportive friends Berthy, that will help you no end. You won't feel alone and isolated all the time you have good friends which is so important, but more so when you're so young.

    So pleased that your tutor is being understanding too, that will help you enormously and hopefully stop you worrying so much about college.

    Make sure your meds help you manage your pain sufficiently and that you get enough rest etc.

    You're dealing with all this so well, here's a gentle pat on the back from me to you and also a hug (((hug))).

    If there's anything at all we can help you with, just ask, happy to help any time.

    Wishing you all the best with your DLA claim. :) xxx

  • It's something I never really thought i would have after I got SO ill I couldn't go out, but it's been almost definitely decided that I'm going to uni now as well, with one of my very close friends I didn't realise was as good of friend as she is...if that makes sense?

    She's now not telling me off for always being late as well, she just shakes her head and smiles because I grin at her and keep on walking (always been told I can get out of any situation with my cheeky smile - it appears so :P)

    I've been put on anti-depressants and had my amitriptyline dose upped, but unfortunately I was unable to go to college today, fingers crossed for tomorrow :)

    Hmm - many, including myself, would beg to differ, but thank you :) it means a lot ^^ Returned :)

    Thank you! I REALLY home something happens - for the better. For one, the money is DESPERATELY needed for transport and such because I'm trying my hardest to have a social life and fortunately, my friends are so understanding this weekend, I was able to go out because all we did was sit and talk for hours. I've missed that more then anything I think, Nothing beats having a good old girly talk with your friends, face to face. Facebook and texting will never best that in my mind.

    Take care and keep safe - Berthy xxx

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