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Where to turn

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mags_65850
mags_65850

Recently diagnosed with fibro but believe I've had it for 15 years ! Back and forth to the docs for years complaining of horrendous pain and fatigue ,pain ful periods and terrible IBS , I have been tested for everything several times over the years !just to be told I was A1 fitness !! Then I developed vertigo and had several panick attacks ,felt my life was not in control anymore and struggled to function properly on a daily basis so went part time at work ,just so tired no matter what I did . Four years ago I was sent to see a rheumatologist who diagnosed me with Hypermobility syndrome so I was put on a physio course , I have exercised every day since with Pilates at home in my own time ,somedays it's very painful ,however if I don't exercise my pain becomes much worse as does the stiffness . 

Rcently I'm having trouble getting up the stairs and walking every where ,even to sit on my bum or strand has become unbearable . I have been on Prozac for four years and recently placed on Gapapentin which gave me side effects so now I'm on Amitriptyline on a night 50 mg ,this helps me to get to sleep but I still wake up with pains in my hips and back and carnt get back off I have been on Esa since last April as I could no longer do my job ,recently I had a work capability assesment which I failed with no points so I appealed and still got no points ,they have made me claim JSA but I'm not fit to do any sort of work at the moment according to my doctor , What do I do next ,I feel totally lost and depressed , I've worked all my life and now when I'm poorly I'm being penalized as if I'm telling lies . Dont know where to turn !!

0 likes, 16 replies

16 Replies

  • marshall71
    marshall71 mags_65850

    Posted

    Have chat with CAB and your local mp your Gp with back you up with hard evidence for your case its so bloody unfair I still wating for a medical since dec14
    • mags_65850
      mags_65850 marshall71

      Posted

      Thank you ,I didn't think about CAB I will give it a go .good luck with your assesment .
  • jeanne81532
    jeanne81532 mags_65850

    Posted

    Hi Mags. I really feel for you. I am also at the 'unable to work anymore' stage. I have found a website called 'benefits & work' very helpful with how to answer questions on forms for PIP and ESA. I don't know if you can appeal again, but suggest you look at the website. Other option- citizens advice bureau are very good. I know what you mean about having worked all your life. I had to give up my nursing registration a year ago after 36 years, and take a temporary post as a ward clerk. I've struggled with the job in the past few months and my contract ends at the end of March, and I will be claiming ESA. I wish you luck. x
    • mags_65850
      mags_65850 jeanne81532

      Posted

      So sorry to hear your at that stage too ,I carnt believe that I've got to this stage and that the docs have allowed it to progress . I will take a look at that website and contactCAB . Thank you for your advice x 
  • marshall71
    marshall71 mags_65850

    Posted

    Mines the same its been that long since October 2013 physio hydro took a year too get a MRI scan seen 8 Gp's none have said what it is mri scan results where vage no talk of treatment that can't understand where my pain is coming from ?? Begs believe now my toes and feet are numb my fingers and hands are starting too suffer I've worked hard all my life was self employed

    Went to the Gp today told him my feet are numb and hands "nothing I can do until you see the specialist " what is it ? I don't know

    Iam still don't know what's wrong with me

    • mags_65850
      mags_65850 marshall71

      Posted

      So sorry to hear that , what makes the illness worse is the amount of times you are back and forth to the docs  trying new medications and not getting anywhere makes you more stressed  which inturn makes the pain increase !! 
    • marshall71
      marshall71 mags_65850

      Posted

      I feel everybody that is ill is fighting another battle with the NHS the system is so wrong So many post on This site And others I'm on I see the same pattern of pushing for things to get done us the patient are the ones that suffers not them chronic pain is horrible thing to have Live with
    • mags_65850
      mags_65850 marshall71

      Posted

      I'm beginning to see that there are so many people that are suffering due to lack of knowledge about Fibro .Do you know if any research is going on to help us Fibro sufferers or is it always going to be the mystery illness ? X
    • marshall71
      marshall71 mags_65850

      Posted

      There is on going research going on a goverment e- petition for research T3 /T4 plenty of info on the uk site
  • christine26761
    christine26761 mags_65850

    Posted

    Hiya Mags, I've had Fibro now for 22 yrs, diagnosed that is..I know I had it for years before too, Rhumotologists diagnose it quickly..but didn't know that then..I have vertigo 24/7 for 11 years now..grr the Nuro said that it was that the fluid in my ear had crystallised and that it would correct itself in time..still waiting....grrr ...but was sooo glad it was nothing sinister..gave up driving license...that was a grieving time.....must be on flat even ground..everywhere we go I check it out first,,,have a very caring supporting husband....was in a wheelchair for a little while.just on walking stick now and a walker when I go shopping..but even though I have that and other issues...I just look at those people in third  world countries and see just how hard it is for them to cope, let alone get meds or docs. Anyway I'm on Amitriptilyne too 25 mg pernight before  bed, have been on it for 16 years now, really works well for me..great pain free sleep. Which certainly helps you deal with your new  Fibro day..I am in Australua, so maybe things are called something else..I take a Osteo Oanadol 2 3x's a day...that's slow release stronger than nirmal paracetamol...over the counter...wouldn't be without it...but the Fibro brain fog sometimes makes me forget when I had it last..because it's 3 times a day and my meds are twice a day only...so I have to write it down...also vitamin d3 and magnesium are a must...I take twice as much than they recommend,,I found that info on this blog too..I would maybe try a higher dise if Amitriptilyne or maybe not.....you are on a rather high dose already...I really hope and pray   you get some reall help soon...you sound like your having a horrid time..we will be praying for you....keep blogging..it's such a great source if knowledge and encouraging support..:-) xxx also remember..stress free is the key....with Fibro..
    • mags_65850
      mags_65850 christine26761

      Posted

      Thank you for all your info it really does help . I had no idea about magnesium and vitamin D3 I will look into that . Any pain relief that I've have tried has beem completely ineffective ,the best thing so far is a hot bath but alas it dosnt last long .Im trying to stay positive as I'm that way inclined anyhow ,thank you for your kind words X
    • christine26761
      christine26761 mags_65850

      Posted

      Yes hot water bottles are great too."everywhere"... I have used them even when travelling in a car at times..lol..hasve a great day :-) xx
    • mags_65850
      mags_65850 christine26761

      Posted

      Hot water bottles ! That's a great idea ,carnt think why I didn't think of them before .i shall purchase some tomorrow and let you know how I get on xx
    • christine26761
      christine26761 mags_65850

      Posted

      That's what makes this site amazing.,don't forget to let us all know how you go...be blessed.,:-)xx
  • clurbur
    clurbur mags_65850

    Posted

    Hi Mags,

    I'm so sorry to hear of your troubles with ESA and the medication issue.

    You are not alone in this situation.  I was dismissed from work due to continuing ill health & have been waiting since Mar 14 for my ESA assessment, I'm not looking forward to eventually having the assessment, especially after hearing stories like your own.

    There are a few options for you. CAB are good in assisting with benefit queries and now you are at appeal stage I would say use them to gather as much evidence with you as possible to take to appeal.  

    Do not give up on the ESA as you just need someone to help you explain your illness and how it affects you. Often the benefit assessors do not ask the questions in such a way that make it easy for you to explain the complexity or variables of Fibro and other conditions combined which means it comes across inaccurate or less severe than it probably actually is.

    There are a few good websites

    http://www.turntous.org.uk

    http://www.disabilityrightsuk.org/

    http://benefitsandwork.co.uk/

    http://www.youreable.com

    Are all good sites for advice on benefits, working, forums and advice.

    If your GP is saying you are not fit for work and providing you with Med3's I'd argue that you are not fit to work, irrespective of the ESA assessors and I'd hand them in to the JSA adviser, at that point it has to be checked again. 

    If you have to stay on JSA (for money assistance not because you are actually fit to work) push to speak to the disability advisor in the Jobcentre and ask them to assist you in finding a job that suits you, I think they'll find it quite hard with what you have decscribed, but it shows you are trying.

    Please keep fighting for this and let us know how you get on. xxx

    • mags_65850
      mags_65850 clurbur

      Posted

      Thank you for this valuable info I will keep up the fight, that's for sure .Hopefuly you will have more luck than me with you're assesment .Good luck .
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