Wondering what to do now?!: Thank you... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Wondering what to do now?!


Thank you all for taking the time to read this, I'd really, really value your input and advice.

I am not officially diagnosed with fibro but I have an 'undiagnosed joint problem' and I would like your advice on what you think I should do next. Can I say, fibro has not been ruled out.

My joint pain started in Jan of this year, I was aching all over like I had flu and it never went. My knees and wrists are the worst culprits but any joint is susceptible to the pain.

Eventually after four months of pain April '13 I was referred to Orthopaedic Clinical Assessment Service (OCAS). The lovely lady did the tender point test which I presented with 12 of the 18. She told me I needed a referral to rheumatology.

I saw rheumatology in July, they gave me Vitamin D3 tablets and told me they'd see me in three months time and ordered an ultrasound of my hands/wrists. When I rang up to find out when my follow-up appointment would be, I was told I'd been discharged because nothing inflammatory showed up.

On the 29th August, my jaw started hurting and I mean REALLY hurting, struggle to chew, yawn, talk... You name it! Anyway, you guessed it, I have TMJ and was prescribed amitriptyline. But I still don't have an official diagnosis.

I have decided to switch GPs because my last one didn't know his bum from his elbow, I felt so anyway. I'm due to see my new GP on Wednesday 18th Sept. What I really want is your advice on what to say to this GP. I'm sick of being fobbed off.

Thanks you in advance.


9 Replies

Hi, I also haven't been diagnosed with fibromyalgia and am waiting to see the rheumatologist on the 30th of this month.

I know how you feel when it comes to the gp's my doctor that has know me since I was born just keeps telling me I'm depressed or that I am overdoing it. I then went in 2 see another doctor who was a complete waste of time telling me all different things so I called 2 speak 2 the doctor on call who called me in and told me my B12 was very low and need the injections.

After having the injection I was still the same pain, fatigue, headaches, stiffness, IBS, brain fog so I took it apon my self 2 take 2 google when I came across the nhs page so I then took that in and showed it 2 her and she has agreed that it might b that.

My advise is 2 the doctors everything that u hav put on here and stand ur ground until they listen. I think like everyone I no the doctors also think its all in your head and ur making it up but until they actually take a walk in our shoes 4 a day there will still b a handful (I hope that's all it is) of doctors treating as depression.

I hope ur appointment goes well 4 u on the 18th. X

I have an appointment on the 27th with a rheumatologist, although the gp's have said they think it's fibro and gave me a load of info on it.

That you have so many of the symptoms is suspect but my advice is to go in armed! Not literally but with all your symptoms written down (it's easy to forget something) and if you can, go with someone for support. GP's are notorious for taking you more seriously when someone else accompanies you. Even they you can get the odd difficult one. I had one tell me to eat less and do more exercise! As this was at the very start of it all and the following doctor found a bacterial infection in my system within the week, that was very bad. Needless to say, I do not see her any more. She has tried to make it up to me since (it's a practice and she's a senior partner) by rushing in to the room with a prescription for (another) infection when I went in for yet another bood test.

I took me three doctors before I found the right one. Hang in there. They will do tests to rule out other things and you may get referred back. Good luck!


Hi I was diagnosed with Fibro after 5yrs of various tests and appointments and 3 different g.p's. I was repeatedly told it was Rheumatoid arthritis and was finally referred to a rheumatologist who diagnosed Fibro. I was then referred to a Pain Consultant who confirmed the diagnoses and prescribed strong painkillers etc. I would echo what others have said write everything down however trivial it may seem, make sure they know as much as possible. Its extremely unlikely that your g.p will diagnose you with Fibro even if you do have it. I would explain your symptoms to the g.p and ask to be referred to either a rheumatologist or a pain consultant.

Hidden in reply to fanakerpan24

I was treated for RA for 12 years then told it had apparently burnt itself out and I now have fybro, I still have terrible pain and waiting to go to a pain clinic

I had a similar journey myself. It was only when I was referred to the pain clinic, I started to get the answers and support I needed.



Hidden in reply to jillylin

Hi Jilly, I see in your profile you have HMS, I've been trying to work out what this is LOL?

Hypermobility Syndrome. It has many parallels to FMS and can go hand in hand.



Hi jillylin, what a coincidence - I've just replied to a post about if fibro runs in families & mentioned how my daughter has hypermobility of her joints. Now I'm even more sure that she is heading for fms later in life. (The later the better in my opinion!)

Julie xxx

Hi I think because fibro is a syndrome made up of an enormous list of symptoms it takes a while to get a positive diagnosis, I feel doctors feel you need to present with a few before they take you seriously. It took my GP and consultants 6 years of various symptoms going back and forwards spending a whole year off work with still no positive diagnosis, my GP did however have me on all the meds for fibro I think she had an idea eventually after many blood tests X-rays scans I was diagnosed with OA then a year later with FMS. When I went to see rheumatologist she was in no doubt that's what I had, it was as if my GP had suggested it and she had agreed without me knowing. My auntie was the district nurse for my practise and friends with my GP so maybe that's what they were doing. when I saw her she was looking for other things like lupus as my auntie had it. I was given info RE. Fibro but having read all blogs and agreeing with a lot of other people's symptoms that I also have I think that they need to rewrite the info. My other GP admitted that not a lot of people know enough about fibro(she seemed to know, which was good, however she has since left) . The key is not to give up and be really honest about how you are feeling, I need to take my own advice because I often feel I don't want to bother them or they'll think I'm a hypocondriac

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