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how to get diagnosis?

Posted , 6 users are following.

beth_littlebear
beth_littlebear

Ive had a constant headache and neckache for nearly 4 years. Have been to hosp and had xrays/mri/spect scan but still no help.they seem mire concerned with the weakness in my right hand/arm.

It all started 4 years ago. Also im constantly tired and now have an intolerence to alcohol(previously was party girl and drank my body weight!)

Have had previous back and knee surgery but told unrelated.

4 years of constant head in a vice and a rigormortis neck is driving me insane!

It was my boyfriend who found out about fibromyalgia and so far only 1 healthcare prof has said is poss.no one else listens or they say its too hard to diagnose. Any ideas?

it controls my life(have tried all alternative medicines)

0 likes, 20 replies

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  • tiswas24537
    tiswas24537 beth_littlebear

    Posted

    if it is fibro than surgery you had is related surgery is truma to the body

    lets face it you wouldnt want it done while a wake would we .

    i started going down hill after a hyesterctomy it took 6 years to get diognosed and even then the meds arent from what iv heard much use . 

    i doubt if you have tried all alternative medincine as iv tried tons of stuff and i know theres more out there. 

    have you had a chriropractor have a look at you they might be able to help .with your neck .

    there is a pain point chart on the net for fibro diognoses if you have most or all of them you defo have it ,  

    • beth_littlebear
      beth_littlebear tiswas24537

      Posted

      Oooh thanku will take a look.

      Due to back surgery was told big no no to chiropractor.

      Do hope you feel better soon.

    • tiswas24537
      tiswas24537 beth_littlebear

      Posted

      well there you go hun if you have had big back surgery then 

      that is trauma to the body , and as fibro is normaly brought about by truma stress or serious illness, then i think it very likely to be the case 

      no chriopractor proberly would be agood idea ,.but you can bet the neck problem is linked to your back .

    • beth_littlebear
      beth_littlebear tiswas24537

      Posted

      Yes i think linked to my back but they all saying no as 1st back op 15 years ago and 2nd 10 years ago and they saying was too long ago(i was 20 1st op-moved a heavy wardrobe and im 35 now).

      Have always believed its linked.

      Could it still be fibromyalgia this many years on?

    • tiswas24537
      tiswas24537 beth_littlebear

      Posted

      they are not going to say its linked to the op hun 

      that makes them acountable ,

      the ops caused pain stress to your body you have proberly had minor symptoms 

      on and of for years .i had my op in 97 and had minor problems since then now i was diognosed with fibro 2006 and have got worse since the stiffness being a reall problem

    • tiswas24537
      tiswas24537 beth_littlebear

      Posted

      have you tried heat for back and neck 

      i found that infra red heat  lamp very helpful  

  • loxie
    loxie beth_littlebear

    Posted

    Someone on another post about fibro posted an article about research into better ways of diagnosing it, hopefully eventually finding a way of using a blood test.  they are sample testing sets of twins, one which does and one which doesnt have pain syndrome symptoms.  one thing they did say is that fibro is usually only considered as a diagnosis if the whole body is affected, not just say one arm or one shoulder etc., which are usually signs of something more specific, like trapped nerve or a variety of other causes.  do look online to check your symptoms on the pain point analysis charts.  fibro has no cure, many other causes of localised specific pain syndromes DO have cures so its to your benefit if you find a realistic alternative reason for your very specific symptoms.
  • SteV3
    SteV3 beth_littlebear

    Posted

    Hi Beth,

    I jusft wrote this to someone else, but it may interest you - regarding people that specialise in Fibromyalgia.

    ====

    Your arm locking sounds like "Rheumatoid Arthritis" which could be related to "Fibromyalgia Syndrome", and is normally diagnosed by a Consultant Rheumatologist or a Consultant Neurologist. Some hospitals do have "Consultant Fibromyalgists", but finding them in the UK is rare.

    Rheumatoid Arthritis would be normal in a middle-aged person, but if you suffer from "Fibromyalgia" then it is more likely linked. All I have done is looked at your messages and noticed from a certain perspective, the symptoms do point that way.

    If your doctor said it wasn't anything to worry about then get a second opinion from another doctor , or change doctors and get a second opinion. Even GP's know very little about Fibromyalgia, so it is best to get referred.

    ====

    Regards,

    Les.

    • tiswas24537
      tiswas24537 SteV3

      Posted

      r/a is a strange one les ,my gran had it all her life her joints became very bad over the years ,my eldest daughter got diognosed at 27 .

      and i was about 45/6 when i was diognosed with fibro .

      ihave to go to the hospital for a medical for my benefit next friday dreading it . as they have been turning people with terminal cancer i feel is it really worth trying. but if you dont then they win by default .

      its all so unfair a system put in place to protect the sick and injured

      now being run by a buisness to make profit , how this fair ?

       

    • SteV3
      SteV3 tiswas24537

      Posted

      Hi Tis,

      What you want is to go to the assessment with a positive attitude, if I had known I would said request a home assessment - that way they see you in your own environment and how you deal with obstacles.

      Remember ATOS Health Assessors are really no one that knows your body more than you, they haven't experienced what you have and do not even have the qualifications of a G.P.  ATOS Health Assessors are either ex-paramedics that were bought off the NHS by ATOS, and offered an easy 9-5pm job and £30k, whereas a standard paramedic is on roughly £23-£24k. A paramedic doesn't know all the disorders caused by your disability, they only have one diploma behind them. Or it could be worse ATOS went as low as emplying nurses, physiotherapists and even nobodys without qualifications in Jobcentres!

      The reason why you see many people getting put on lists that are terminally ill is because the data that is made during your assessment is changed by the DWP. This is why many people are fighting the DWP back by recording their assessments - then if they get a letter stating everything was very different, people are then phoning the DWP and stating that the letter you sent me saying I had no points and other details were all wrong - I can prove it, I recorded the whole assessment. This guarantees they look at your assessment again and this time they turn the award in your favor. Yes, that's what it's come down to these days.

      Hope that helps..

      Regards,

      Les.

      Regards,

      Les.

    • tiswas24537
      tiswas24537 SteV3

      Posted

      trouble is les if they think you have enough about you to record the interveiw they think you have enough about you to get a job .

      they have you always

    • SteV3
      SteV3 tiswas24537

      Posted

      I meant you take someone with you, and they record it. Not you!! Sorry, I should of been a bit more clearer there.
    • tiswas24537
      tiswas24537 SteV3

      Posted

      my husband is coming with me .so i can ask if he would . 
    • tiswas24537
      tiswas24537 SteV3

      Posted

      its at 10.05 in the morning so i will be half dead any way 

      as i shall have to get up about 6.30 to even be able to move or focus my eyes.

      so i wont have to act like a zombie i will be one .

       

    • SteV3
      SteV3 tiswas24537

      Posted

      Well, I will wish you well Tis! Remember, they know bugger all about your symptoms.. your chance to teach them. No GP knows evrything, so an Health Assessor will no nothing hardly... The highest they do go to is a doctor, but not a General Practioner Doctor (that takes 10 years of training!) and they would not work for ATOS for £30,000 a year!! Perhaps, if ATOS added another £100,000 a year they might attract one or two... but it wouldn't pay them.
    • beth_littlebear
      beth_littlebear SteV3

      Posted

      Thanku les

      Have another neurology apt next month so will keep on at them.

      Thanku for your help and advice.

    • tiswas24537
      tiswas24537 SteV3

      Posted

      do you

       have to let them know your recording them 

      les

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