What Tests did everyone else have to diagnose? Not sure they got it right with me

I have never had a MRI , seen a neurologist or had any other tests done! I saw a rheumotologist who basically prodded my shoulders, I said ouch and she said you have fibro?

My dr didnt even know what it was! This was 12 years ago, Do you think I should ask the Dr I have now to make sure this diagnosis is right? (shes a lot more understanding)

21 Replies

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  • Hi Coco68

    When I was first diagnosed that was about all I had for a diagnosis. I probed further on advise from other sufferiers and also friends who had ms. I then had MRI some seven years after initial diagnosis and lots of blood tests and a few others i can't remember. The thing is that you don't really get any further tests unless you push for them.

    The presure point tests are what the rheumotologist does to quantify his diagnosis but mainky it is a case of ruleing everything out with blood tests first.

    Hope this helps.

    Elaine

  • Hi I was diagnosed with fibro over 20 years ago I kept having severe chest muscle and ligament pain ... Went to my dr convinced I was having a heart attack he pressed all the trigger points for fibro...... Peeled me off the ceiling and said you have fibro myalgia and all the pains in my chest were linked to it. official name chostocondritis . He told me to take pain killers and do gentle exercise. Have moved quite a few times over the last 20 odd years every dr has agreed with my initial diagnosis though over the years have got other things on top eg osteo arthritis 4 years ago that's when I first saw a rheumatologist had loads of blood tests but basically my first dr all those years ago with his simple test got it right in one diagnosis.

  • Hi, I started going to the doctor after hysterectomy last October with symptoms of fatigue and joint pains,tests were done for menopause ,arthritis etc, came back normal, symptoms stayed the same with new symptoms, more tests were done same as above plus thyroid bit defo envy plus a few more this was done another twice more to rule out any other nastys, then new doc diagnosed me, I believe you need a history to go with the diagnoses so there's no other cause as fib is hard to diagnose on its own, so you could push for another diagnoses for your piece of mind, hope this helps

    Kind regards Nicki x

  • Thanks guys :) I'm seeing my dr tomorrow for a checkup so I'll ask her, doesn't hurt to ask does it x

  • Hi i think you are in your rights to ask for another round of tests and a chat with your Gp to confurm after all this is like many other conditions and we need to be sure they have it right xx

    gentle dyslexic hugs

  • hi,

    i am very new to this but i was told last tuesday by the pain clinic that i have fibromylagia which i wasnt expecting! i have had all the blood tests done and i was advised by my remedial massuer amd my mum (who also has fm and alot of other health issues) to ask the doctor to be referred to see a neurologist which i was told no that i had to wait untill i was seen at the pain clinic. so i mentioned this to the specialist at the pain clinic and she agreed that it was in my best interest that i did not need to see a neurologist as more testing by different people etc would end up me getting lost in the system!!!! she also applied pressure on certain parts of my body and after peeling me off the the bed and the wall in front of me she said that the pain the pure and utter fatigue and extream tiredness etc and the recent flare up and continued flare up of ibs was all tied into having fibromyalgia.

  • I wrote down how I had been feeling, pain, tiredness etc and he diagnosed me by that and just gave me pills! I went to another doctor in the practice just last month as I'd heard he was more sympathetic and listened. He put me on Gabapentin and said he wasn't just giving me this and punting me out the door, this was just the beginning of my pain management and I've to go back in a month. x

  • mine was also diagnosed by a Physiotherapist who cheched all the pressure points also have myofacial syndrome and cochondretis (chest pain) everyting else is ruled out been going to doctors for years with pains just glad i know what it is now my aunt also has as well xx

  • This is how i found out about my Fibromyalgia after going to the doctors for 5yrs but now i know what i have xx

  • The Rheumatology doctor listened to me describe my symptoms which come and go, vary enormously in severity, can last for a second or for weeks on end; he then tapped on a couple of trigger points, peeled me off the ceiling and said I think it is Fibromyalgia but we'll do some blood tests to rule out other things, he had 10 different things tested a month ago and I've heard nothing since - need to chase him up this week and find out what is happening.

    Julie xx

  • I wad finally diagnosed 6 months ago!!!! Woo hoo I am not mad and it's not all in my head!!! Diagnosis after ruling out everything else using blood tests, I was then sent to see a Rhuematologist who did pressure point and trigger point tests. I love the phrase everyone has used " peeling off the Walls and ceiling" it's so like that!!! I was relieved and still am as I know the diagnosis could have been much worse. Within hours though the realisation hit me what the diagnosis meant with no real treatment........ I was put on Amitriptyline and am still waiting to start the raising from 10mg. No real change other than it did at first improve my sleep. For the diagnosis gave me back control in many ways, when you know your enemy you can fight it!! I work full time in a stressful job dealing with clients with support needs. I have to fight that stress and rest a lot to be able to continue. Weekends and evenings are used to recharge as much as possible. I am also caring for a wonderful 21 year old son with Aspegers and have a gorgeous Grandson. I try and enjoy things when I can. This is my 1st post so Hi everyone x

  • Welcome Mandajane

    Julie xx

  • Hi i would go for another up date and to check that it is fibro if you have doubts.

    When i asked last year my Dr's said we are on the road of Fibro but to rule everything out ie MS etc i seen Rheumo, pain Management, Neurologist, Neuro surgeon and now i am with a clinical Neuro physcologist which i want to give a go at to give my experience to others!

    So i think from one prod of a shoulder which could also be Muscle Tension.

    I have jsut been given Diazepam as my neck went again and i was very bad as Dr told me all over. anyway I wish you much luck to give you some relief of if it is or not .

    But say thing i was Diagnosed with other things 23yrs ago and never questioned any of it since.

    xxxxxxxsoft huggles cazzie xx

  • If you're not happy Coco you are entitled to a second opinion. I had to change Consultants as I wasn't happy with him not diagnosing me with anything when everyone could see at that point how ill I was. I went through the process of changing Consultant Rheumatologists, it took a while, but the new Consultant gave me my diagnosis, changed all my meds for the better and it really helped me.

    By all means have a word with your Doctor and see how you get on there. However if you need a referral to see someone else, request this at your Doctors. I hope you get the answers you are looking for, take care. :)

  • I went to rheumatology about 10 years ago, was told then I have poly arthritis, (basically all over). As the years progressed I got worse and worse, so assuming it was arthritis getting worse, but then found out about fibro when about 5 years ago now I started with costochondritis, so I had a myriad of tests done to rule out everything else. My daughter sent me a link, she has CFS and was reading about that, saw a link, so I produced the GP with information I printed off, asked if he accepts fibro is an illness, 'Yes', I said I have pain in all the 18 points, so yes I have it, 'simple'! A really technical diagnosis, but I still think it's right, because of all the research I've done, and everything fits. I go to rheumatology again next month about arthritis, but I will ask about fibro as well. Suppose it never hurts to get it confirmed if you can.

  • Hi guys,

    just got back from my gp and she is referring me, she says it doesn't hurt to rule out other things, and thinks it should have been done before :) It'll probably still come back as fibro but at least we'll know we got it right this time

  • Well done Coco, that's great news! At least this time you will feel more confident that they've got it right! Best of luck to you and well done! :)

  • HI COCO

    It took 2 years for diagnosis and many disagreements from medics. GP sent me for bloods, nerve conduction tests, x rays on effected limbs etc. It was then that a privately employed rheumatologist diagnosed chronic pain syndrome. He said he didnt like labelling folk with fybro badge. The GP still recorded fybro after I challenged him on why he had prescribed an antidepressant which axcted as a muscle relaxant. He then after I couldnt cope without it due to muscle spasms decided he would state I had fybro!

    That was 4 years ago after some 2 years of pain after a RTA.

    The neurologists now say I have functional weakness and disorder due to being in a chronic pain syndrome for so long. I have had nothing bar 6 sessions of physio delivered 3 years after the accident from the NHS. I am now awaiting hydrotherapy from NHS as was recommended from neurologist BUT they are agrueing over who is going to pay. I have heard that there are some pretty neat rhumatologists in a london rhumatology dept. that would be worth a try, but for me getting anything other than anti depressants from the GP including a straight diagnosis was a nightmare.

    Basically I failed the fybro test on the prod me and i dont squeal bit. After exclusion tests ie work out what you dont have) they then rely on the prod and squeal technique! Its based on the pain points you should have, BUT they may not be there all the time!

    If you dont think the label fits, then dont wear it! Try and work out what you think causes your pain and go with remedies for that. I managed drug and pain free for 10 months :)

    Good luck

    NN :)

  • Hi coco, a rheumatoligist confirmed my 18 points of fibromyalgia last February, this week I was promised by his secretary that she would give me a cancellation apointment and would ring me by Friday, so I'm exited about that, I thought his Feb., appointmet was a bit rushed, my doctor has thought all along I had it but wanted the Rhumy to confirm it xx

  • I was told by the first rheumatologist that I had 'arthralgia'. I didn't tell him that I knew that this was a symptom, not a diagnosis, but I did go to my GP for a referral for a second opinion! The second opinion has repeated all of the bloods and tentatively said fibro, provided that there's no other causes highlighted by the bloods.

    As far as I know, I've been tested for antibodies (these are usually indicators for inflammatory arthritis, lupus etc.), CRP/ESR (inflammatory markers), thyroid function, full blood count, vitamin D deficiency, gout and a couple of other tests that I can't remember from my quick memorisation of the bloods form! I also had ultrasound scans, but I know others have had a variety of things from X-rays to MRIs, so I think this varies dependent on the symptoms and the consultant.

    Good luck! xx

  • Hello....Im a "newby" ... joined some months ago but not been on as been sooo unwell as most of you will understand....rhumatologist diagnosed me in 2010 but I havnt had scans for vit D or anything really ... my gp says there are no tests for fibro ( I also have ME or CFS whatever you want to call it ) and VERY bad IBS which I am now thinking is not IBS but may be food intollerance or from something called Giardia I had many years ago .... havnt been tested for antibodies SootyB but I know a strange antibody appeared 9yrs ago after my 4th child was born and never did understand it maybe I should look into it ????? no idea ????? ............ currently my total lack of energy to do the most simple things is very depressing and soul destroying altho my current gp doesnt support my claim for DLA as she filled the form in with no problems in looking after children and getting to surgery so havnt the energy at the moment to do the appeal.....basically my good husband cooks and cleans etc and drops me off at the surgery funnyily enough I dont have a habit of visiting the gp to tell her everytime I cant do anything as Ide live 24/7 at the surgery....think cos she is woman with 4 children also she has no sympathy so going to try the new gentleman gp see is he is any better............now Im worried by my total lack of tests !!!!!!!!!! doestn seem much help at all on the NHS does there !!!!!!!! giving up all my meds apart from basic paracetamol and just been told to take D-Ribose as an energy booster has anyone tried this at all ??????????

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