Nowhere fast with the NHS

Is it just me or have any of you had massive problems trying to get a clear diagnosis of fibro? 7 months on from a road accident that has brought on many fibro, symptoms had been identified by a physio from my local hospital, but he wouldn't commit it to paper as he said a rheumatologist has to make diagnosis (how?) and referred me to a pain clinic that just want to dose me up with every pain killer they can think of but don't listen when I say I am sleeping all day but awake all night cos of the meds!

After making a complaint as I was going to have to wait a year for a rheumatology appointment. I saw the Dr who xrayed my spine showing crushed vertebrae, I asked him about FMS and he referred to it like a mild headache? My GP won't deal with it and keeps passing it all over to the hospital, who if there is no damage to nerves/discs on MRi, they are done with me. Is this right??

Since the accident, I have chronic fatigue, anxiety, depression, weak limbs, agonising all over body pain with no day off! No energy whatsoever, I am forgetting stuff all the time and what I have even been saying, the list goes on but the hospital DR made it sound like a made up disease. So confused and dont know what to do now? xxx

6 Replies

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  • IT SOUNDS LIKE FIBRO, MY GP DIAGNOSED ME SHE WAS SO LOVELY AND UNDERSTANDING . TRY A CHANGE OF GP . I NEVER GET MORE THAN 4 HOURS SLEEP A DAY ITS GETTING WERE I CANT COPE IN THE DAY X

  • O ws diagnosed by a neuro surgeon for m.s then i had loads loads of tests.and ws confirmed m.e.

    Then my new g.p commits on paper i have fybro.

    Ive never seen a ruem?

    And change g.p find a nicer one.x

  • My doctor gave me a diagnosis about 2 years ago, she said there is no test for it, just a clinical diagnosis based on symptoms. She is really lovely but i sometimes think it's a bit this is what you've got I'll prescribe the meds and see how we go, I've never been referred to a rheumo, but thankfully so far it's not tooo bad, (touch wood), maybe she's waiting for it to jump up a level

    Take care all

    Jan H xx

  • I too developed fibro after a car accident and have all the same symptoms as you. My dr said in an off hand manner 'it sounds like fibro' then sent me to a neuro surgeon to rule out ms (family history). I was also re-referred to a rheumatologist. Upshot is I have fibro, diagnosed by symptoms, mri scan and x-rays.

    Apparently there is only one 'real proof' test available which is really painful involving taking fluid from your spinal cord. But there is a new test being experimented with at the moment which could prove/disprove fibro with a blood test. I know which I would prefer.

    All I can say is soldier on. I am attending pain management at the moment which involves very gentle stretching exercises and discussions about why pain persists, medication and how we can help ourselves.It isnt a cure by any means, but it has helped me to become more positive. It also set my mind at rest about the numerous meds I have been prescribed and there is a pharmacist involved when you discuss medication and she is willing to give 1-1 advice on what to take when etc..

    Go along not only will you understand the condition better but you will also meet other people living with chronic pain and it always helps to know you are not the only one.

    Best of luck with it all Tina.

  • exactly the same here,docs have said its fibro and thats it. i dread going to the docs as it feels like im there all the time,but they are not a bit interested to hear how the condition affects me. ive had the x rays.the physio(which made things worse)the osteopath,pain clinic etc etc and still, and still the docs are not interested

  • yip I will be 3 years post virus in jan2013 and still havent a definate answer , seen rheumatoligist , physiotherapist, psychologist, painmanagement , and occupational therapy . diagnosed with chronic pain , chronic fatique, and HJM syndrome . Fibro has been mentioned several times but they scoot about it and will neither confirm or denie this as a condition . Scotland NHS Lothian

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