Do others feel let down

I went to the consultant last week and they said I most proberbly had Stiff Person Syndrome and explained why I feel so ill. They would set up Physio and OT for me to help!! I looked it up on the web and do fit all the catagories. However today I get a letter stating I have not got it,and they will see me again in 6 months to see how I am getting on. I have however got Fibro ( er I knew that ) and they are going to get me to see the management team for fibro in 6 months time.

The meds they gave me for SPS are also used for fibro so I can carry on taking them......I am furious I was told 4 months ago I had to have other tests and now I dont need any doing as I just need to learn to live with this.

I cannot walk ,Swim , Drive or do anything around the house or garden . If I so much as sneeze I go into a spazm.

The Meds I am on make me feel aweful and I have a dry mouth ( to the point my speach is affected ) I really cant see the point of taking meds that make you feel worse,for an illness you dont have!!!!

I am exhasperated !!!

Now I feel worse about me than I did before the medical.

12 Replies

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  • You are feeling let down because there is no magical answer and after so many years of days, nights and foreverness of pain you just want someone to say we can make it better - instead you get told you have to learn to live with it ....... at the moment you are feeling very low and depending on what medication you are on this sometimes takes time to help you find ways of dealing with the fybro - it is I feel the most under estimated illness - and should be renamned the restless syndrome for the mind and body are never rested. However on the up side you can come to terms with it providing you have good support around you i.e. family and friends - try to remain up beat about what you can still do and do not dwell on the things you cannot do - there will be better days sometimes and even the odd nights good sleep - we are all suffering here on this website and you can rely on that and our support to help when you need a few kind words of encouragement. I am on Quinine for the spasms and this has helped greatly however it does not take them away completely. Good luck to you.

  • hi sharon i could not of answered that question better myself and good luck rainbow dancer it is right fibromyalgia is so under estimated for the agony and truma it causes to us. jackie

  • I also agree - it is grossly underestimated. I'm 99% certain I have fibro (awaiting bloods to make sure there's not an inflammatory arthritic undercurrent), and I wouldn't wish it on my worst enemy. My boss, however, told me months ago (before my tentative diagnosis) that 'there's no such thing'! And she's a clinician! I'm planning a big presentation to the team, to assist learning and development, about arthritic conditions, fibro, and chronic pain - fingers crossed it'll open up some firmly closed minds.

    Sara xx

  • good for you sara i feel really let down if any of you get a chance read my blog on fibro and dla its headed THIS IS MY STORY.jackie

  • So sorry to read your message Rainbowdancer, we hear this so often with our fellow Fibromites. Have you considered telephoning your Consultant's secretary and telling her that you cannot wait 6 months, that you feel too ill to wait. Also that your meds don't help, they just make you feel worse. Really lay it on the line which I know is hard to do when you feel so poorly.

    I do feel for you, it's an awful situation to be in. Sometimes it's worth a fight, so if I were you the above is what I'd try, you never know it might just work! Wishing you all the best Rainbowdancer. :)

    (Well done Sara! ) :)

  • Well everyone has said all there is to say but I just wanted to give you a gentle hug as I know exactly how your feeling. xx

  • In your place I'd be pushing your GP to fast track this - it is hardly your fault the consultant made a wrong preliminary diagnosis so why should you be held back?

    It's a long road ............

    Recurrent mini-strokes ...... learn to live with it;

    CFS/ME ............................. learn to live with it;

    Fibromyalgia ...................... don't bother yourself - I know the answer.

    Anything the medical folk can't find an easy answer for is the same, the odd tablet or treatment and then the ultimate callous statement comes and smacks us in the face - I don't want to learn to bl***y live with it I want to be well again!!!!!

    AND don't tell me there is no cure, there is, it just hasn't been discovered yet :-(

    Julie xx

  • Hi Julie x

    My Gp's Idea of fast track is not good took him from late August till june to accept I was in trouble then just got my appointment last week .....don't know what would happen if I said it was not urgent lol .....He is a waste of space but we only have one surgery and they all work the same' When I first had CVFS I couldnt even get to the me clinic they never acknowledged it,I had to do all my resurch myself !!

    Thanks for your imput Julie X x

  • Quite right Julie! One day there will be a cure for Fibromyalgia, I am sure of that. The problem is they have to recognise our illness first, that's the main problem!

    It's hard to fight when we feel there is no fight within us, but we have to fight, to make ourselves heard, for all our sakes.

    Whatever effort it takes, bang on doors (not recommended literally I hasten to add), don't stop until you get the answers you want to hear. Get second opinions. If your meds don't help you, if they don't help you manage your pain, or help you sleep, ask to have them reviewed. If you are taking a cocktail of meds and you think you shouldn't be, question this. At the end of the day unfortunately it's down to us.

  • Cure..huh we can't even get the medical profession to admit it exists..let alone a cure..I'd settle for a GP who doesn't think its an illness cos they found nothing else and ask me when I'm going back to work!

  • Thanks for all your reply's ...

    I already knew I had Fibro and CVFS I have had them for over 15 years and untill Aug last year I was as you say living with it and winning. Then I got a coughing fit and all my muscles from head to toe went into a spazm and I was not able to walk or do anything for over a month. Never really fully got over it. I only have to sneeze or cough or turn funny and my muscles go !!!

    Now I cannot walk am in a chair and cant drive or do anything so that was why I saw the specialist .....ticked all the boxes for SPS and then got a letter saying I have Fibro I am not really well enough to spend 2 hours seeing someone to be told something I already knew. When I was paying for my referal ( cost out ran my insurance ) I was told that they would do all these tests now I am on NHS ....er....I dont need them I am told. That is what makes me so angry !!!

    Sorry but gone from living with fibro and CVFS to it ruling my life as now I can do nothing much at all....cant even wash myself or put on my own nics,so it makes it hard to stay up beat at all !!!

  • Just an update on my situation .Went to see the surgion and Because I have Fibro VCFS and am borderline diabetic and had a bonegraft on my leg they are afraid I cant have an op altho they agreed I definatly need one urgently. if I got another infection in my leg it would lead to amputation and he said he wanted to avoid that for as long as poss. I had a problem 30 years ago with bone marrow and apparently it can flare up again.

    I do try very hard to keep my chin up but each visit gets harder and harder and my daughter just says " Oh well stock up on the old paracetimols and a good laxative and you should be fine." laughs and then says there are loads of people worse off than you "think of all the people who are dying and cant do a thing about it !!" I know this is true but it is still hard to live with all this as you all on here know.

    I am having some healing next week am looking for a good diet plan .....I Will BEAT this !!!!!!

    Thanks for all your support xx x x

    Rainbowdancer

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