Finally here!

Finally after waiting months my rheumatology app is today, my pain and general feeling of illness has escalated this last month with fluid around my knuckles and my toes looking a sorry state, swollen with twisted nails which is so painful, I have been taking photos of how deep red my hands and feet go especially at night! I can only describe the pain in my heels as someone stabbing them with a knife and my hands ache and throb constantly !

I was having terrible tummy trouble so the doctor toldeme to stop naproxen, im currently on gabapentin and tramadol which does for about an hour ease my pains but the feeling of being wiped out is happening more and more! Im extremely nervous of my appointment, not because of what will happen but what wont happen! I recently had more bloods done and they came back normal even the esr which was high last time, my doctor has dismissed Ra as he said I'd know if I had it as its bad! Does he think im exaggerating my agony and fatigue? If im sent away without a diagnosis or even an explanation then I dont know how I'll cope! Also I have lumps on my fingers and elbow and my big toes are starting to bend towards my other toes! Ive wrote alot down and got photos of me at my worst, i was going to leave my medication today. But getting my children to school would have been impossible x

20 Replies

  • I hope all goes well. Your GP is just that remember, a General Practitioner not a Specialist. He's referred you to Rheumatology so obviously thinks something's going on so forget anything negative he's said & concentrate on today. Are you able to take someone with you? Do let us know how it goes. :)

  • No im going alone but im ok with that, and thank you nomoreheels for your advice and I will let you know how it goes x

  • Just tell it how it is! Hope it goes well, let us know. Good luck! M x

  • Good luck, if you tell him what you have said here and he examines you and will maybe take some blood , hopefully he will come to some decisions very soon xx

  • Thank you ive got everything crossed x

  • For what it's worth it's as well to remember that RA is just an umbrella term for what is probably a syndrome of different diseases - also that there are other rheumatic diseases which are seronegative but just as horrid. Even if the rheumy says same as your GP this isn't the end of the road. Some people take many years to get a diagnosis. So try to keep calm whatever the outcome and very best of luck to you.

  • Yes twitchy I have carpal tunnel also which along with this plantar thing, he said my esr was high so without the rheumatoid factor I suppose they just have to be completely sure before a decision is made, thanks for your input its always welcome and right now its quite daunting for me x

  • So I saw the rheumatologist, he was very thorough and said I definately have plantar fasciitis which is causing mu heel pain, he also said that it can be caused by RA, all my other symptoms point to RA and he wants to consult with the other rheumatologist and he's going to ring me next Monday, he said he'd rather lose a weeks treatment than start me on medication thats harsh, so I will have to wait until the phone call and see were I go x

  • Well, that sounds positive & better doing that than to over-med you. Sounds as though he's a good listener too! That's a real plus in my book. I hope whatever he decides on works & you do well on it. :)

  • Hi nomoreheels, he listened to me for nearly an hour, it was like a therapy session! And thanks xxx

  • Sounds as if it was a worthwhile consultation, probably as well to be cautious,even if it means that you have to wait a bit longer. At least you've been taken seriously. Hope he comes up with some effective treatment. M x

  • As Mavis says I think this sounds like a really good appointment because he was thorough but not wanting to rush to get you onto DMARDs just yet. I'm seronegative myself although my rheumatoid factor was mildly positive for the first year and I did have a high ESR and CRP. You know yourself when things aren't right so it's always a relief to be taken seriously and to be believed by the medical profession. Take care and I'll look out for your update. Tx

  • Thank you all for your advice, and I'll keep reading your posts and will post the results of the phone call xx

  • Hi Jackie, I'm so glad to hear your Rheumy is listening and he obviously has observed that there is a medical issue. There is nothing worse than having a GP who doesn't bliwve you when you tell them what's wrong, I wonder if it's because we don't look particularly sick.

    I find it very interesting your Rhuemy said plantar fasciitis can be caused by RA

    I myself had a very bad case of plantar Fascitis, so bad I could walk propelt for 3 months, went up and down the stairs in my hands and knees because I couldt put pressure on my feet. I was treated with Vioxx which helped, then when I tried to get my prescription refilled I was td that the drug has been taken away by the government as its causing deaths. It apparently dissolved the heart valves or something. I ended up twice a day soaking my feet in ice water ( and it hurt) until they went numb. Just to get relief.

    I find it interesting because I had player Fascitis about two years before I had any joint symptoms. My GP was just like yours. They treat for individule things separately but they don't put the whole picture together. But a Rheumy, can see the whole picture and how it's all related.

    It sounds like your in good hands now! Good luck with your treatment. Hope you get rief soon.

    Sorry I can not correct my spelling errors on my cell.

  • Hi hobbits, im assuming thats how they come to a diagnosis without the bloods showing the rhuematoid factor, although my first lot of bloods done a year ago showed it but I didnt have a clue what it meant and my doctor just gave me mild painkillers as the pain wasnt so bad, its not a quick fix ive realised that, and every pill or potion ive had to fight plead and beg for! And you're right we tend to put on a brave face, hide our pain well and people think you are well, I was probably even guilty of that before I got ill and now im so much more aware of people with silent illnesses xx

  • So glad you have started to see the light at the end of the tunnel. I had bi lateral carpel tunnel when I was diagnosed in Sept 2014--- since taking methotrexate that has improved a lot therefore proving that it was RD induced.

  • Maybe because the treatment is so harsh jackie they rule out every possibility! As the rhuemy said today he wanted to get together with another rhuemy to be absolutely sure! X

  • That sounds like a plan to me---- A good one at that. My bloods are always totally normal , making it hard to get a proper diagnosis. 4 years in fact. I hope you are not in too much pain before you hear back from the consultant x

  • Oh dear, 4 years? That must of done some damage to you not having it controlled x

  • Sounds like at last you are on the right path which is good but I am sure you must have a lot to take in.

    You may find actually talking to someone over the phone who has "been there, done that" helpful if so NRAS has trained telephone support volunteers and it can be arranged for one of them to call you at a mutually convenient time. Also if the consultant hasn't already given you it there is a really helpful booklet that NRAS produces for Newly Diagnosed RA patients. Give our helpline a call on 0800 2987650 to get one or order online at

    NRAS here to help every step of the way.

    Good luck

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