Undiagnosed Fibromyalgia

Hello nice to meet you all. My doctor refuses diagnose fibro but all my symptoms all indicate it. I have swollen cartilage between my ribs makes me feel I have cracked ribs or something. I have hip pain groin pain. I find it difficult to move around A lot sometimes I have weird tension headaches my doctor has done all kinds of blood tests etc and I have low vitamin D which is also another indication but he still refuses to diagnose I am 32.. do I keep pestering him or just leave it?

17 Replies

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  • Ask for a referral to a rheumatologist.

  • Thank you I will try that they told me to refer myself to physio but I was told by a friend it's not physio I need so thank you ☺

  • Hello and a warm welcome to our friendly fibro forum where you can get advice, support, help and understanding.

    Have you seen our Mother Site fmauk.org ? Here you will find a wealth of information about fibro including guides and links.

    Low vitamin D can cause bone pain and many fibromites, (that's us) do suffer with it, also costochondritis which does sound similar to the rib pain you are experiencing. You may also have a touch of arthritis. I am not medically qualified so cannot give you a diagnosis.

    Do you feel your doctor is not making a diagnosis for fear of giving you a label? Some doctors are hesitant as they feel the patient may get depressed about a long term, chronic condition with no hope of a cure.

    On the other hand it could be that he truly does not know much about fibro. If you think this is the case then go to fmauk.org and follow the link to send an Information pack anonymously to your surgery.

    Fibro tends to be diagnosed when all other tests come back negative. You can ask for a referral to a rheumatologist to confirm this. If your doctor resists, then choose another in the practice or consider changing the practice altogether.

    I advise you to lock your post for your internet security. Simple instructions can be found to the right of the screen under Pinned Posts.

    Looking forward to seeing you around the forum

    Kay

  • He is reluctant to give the diagnosis.. He did say that once it was diagnosed that was it there was nowhere else to go... I have no clue what he meant but it sounds like yes maybe he doesn't want to label me I guess thank you It helps talking as I speak to my friends ds who don't understand really x

  • I have undiagnosed symptoms. Been 2 years of various tests and going back and for to the GP. He won't give me a diagnosis of fibro. All my tests MRI scans nerve conduction and bloods are all normal. Mine won't even refer me to a rheumatologist. I'm in the process of changing GP!

    Keep on until you get a referral

    J xx

  • Thank you I will make that appointment and try again and good luck I am starting to realise just how it can be I really hope you get somewhere keep us posted ☺

  • I have found this forum really supportive, it has given me a lot of strength to not give up. And so much good advice.

    Good luck, and you keep us posted too ☺

  • Hi there and welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does take quite a long time to diagnose Fibro I'm afraid. What normally happens is your gp would take blood tests to check for other conditions that Fibro mimics the symptoms, like RA. Lupus, Limes Desease, MS etc. If they all come back clear and after about 3 mths of you having Same symptoms, your gp should refer you to a Rhuematologist, then there is normally more testing.

    Some doctors don't diagnose Fibro and they will refer you to a specialist but you can ask to be refered. You do need a doctor's support, is there another gp you could see maybe

    Peace, luv n light

    Jan xx

  • I have had A certain number of blood tests that are all clear except the vitamin D I will be making another appointment son as today I just felt like left was cracked could barely move just wish things could move quicker sometimes thank you so much for replying it seems like A fab forum love and light also ☺ BB

  • Your welcome ☺ I just hope you can sort things out and finally get a diagnosis, if you have got Fibro, then you can begin to understand and manage it. There's nothing worse than being told there's nothing wrong, when you know there is. It is very frustrating and as I say, push for a referal but bare in mind, you still may not get a diagnosis straight away. It takes some weeks before you get an appointment with a rheumatologist. If you have pain where you can hardly move, your gp needs a shove.

    Do you take any medication or pain relief ?

    Luv Jan xx

  • What you're describing could be many things. I was diagnosed with Fibro about 18 years ago. At that time....the tender points were of primary concern. I believe there are eleven on either side of the body. It took forever for a diagnosis. For the most part.....Fibro wasn't recognized by most doctors.

    I now have GCA and PMR. Diagnosed 28 months ago. I suffer from costochronditis and ( I believe) Vit. D. deficency although testing doesn't show it..

    I'm 70 year old and live in the States. Perhaps there's a reason you'd like to have a definitive diagnosis. For me, it would have been better not to. I never took meds for my condition and never made a doctor's appointment for Fibro in particular. Yet, it cost me a fortune over the years until I was old enough for Medicare, Might be something to think about.

  • The reason really is that I have had so many other tests that have all come back clear.. I suffer anxiety and my main fear is my own general health I have 5 children and it scares me to think I could have something that can cut my time short with my babies... stupid I know but for me the diagnosis would help my anxieties at least I would know what is going on so it's more Peace of mind than anything certain pains to me are A case of could it be this could it be that I am not saying what I am feeling is nice by no means and I hate it

  • Asked your GP to refer you to a to a specialist, do not give up, I got my diagnoses 2 weeks ago after suffer for 30 or more years. I took a print out of symptoms of fibromyalgia to my GP and made her read them, then asked her to look at my medical history, she then agreed and referred me, and I was right. If your GP still does not refer you complain to the medical board, the last time I did this it was at Sloan square in London. Good luck Joy x

  • Thanks so much I will definitely be speaking with him again ☺ thank you x

  • Hi Gemsdenise84

    Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of this and I agree with your other respondents about asking for a referral to Rheumatology. I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi Gemsdenise84 and welcome here? Can only echo what the others have said, have a look on the NHS web for your area and see if the there is a Rheumy consultant who has a special interest in fibro, then push to be trfetrrd, I've also heard some forumites mention that they were referred to a pain clinic and that the physios were helpful in getting referal and diagnoses.

    As far as your friends are concerned, it's very frustrating isn't it? Just having an 'off' day really doesn't cover it! Have you googled the spoon theory? I downloaded this and have it to my BF and family to read, it made a massimassive difference to their attitude, also the info leaflet from the mother site here, all useful stuff.

    Good luck and keep us posted, sending soft hugs

    Wendy.x

  • Keep mithering, asked to be referred to a rhuematologist. Don't give up. Once your diagnosed you can start to manage. Remember that although a lot of GPs seem to think they are akin to a god they are just people. See another doctor if you can. I was considering changing doctors until I was diagnosed. For years I was looked at like I was lying, I got referred and diagnosed and hey presto Im treated like a human being again.

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