Appointment with rheumy tomorrow, last minute request for advice please!

Dear All, Don't post much as have been waiting for 'proper' diagnosis from nice (I hope!) rheumy. Didn't realise appt was tomorrow & panicking cos have been waiting so long & don't know what to ask for. I have been relatively well lately (warmer weather?) apart from sore left hand...tend to ignore stuff if it doesn't need immediate attention (my trouble, methinks!) I was in great pain months ago & had appt to see rheumy in QEQM Hospital in Margate which I missed due to bus trouble. Nasty receptionist put me down as DNA even though I was there but late! To cut a long story short I couldn't face her again so I asked to be seen at Kent & Canterbury Hospital which is easier to get to. This time rheumy was nasty ( have posted this story before so forgive me for repeating myself) so back to QEQM tomorrow.

I would really like some advice on what to ask for in the way of pain relief & meds to prevent deterioration in joints. I am so (relatively) well at mo compared to others, I know, but as I look after my lovely 3 & 1 year old granddaughters several days a week I need to keep mobile!

I would like to try natural remedies, high dose vitamin D, cider vinegar etc. Has anyone tried these or others with any degree of success? Really would appreciate any advice, apologies for short notice, memory bad!

8 Replies

  • Yeah I know about brain fog! It's maybe a good idea to get a firm diagnosis of your problems from him and a plan of action. I think when they work out what type of inflammation they then taper the drugs to you, although in most cases methotrexate seems to be the gold standard choice.

    Write down some thoughts , problems and questions tonight so you can ask at he appointment. Also if u have any photos of the swelling take them too.

    I hope they r kinder to you tomorrow though, have u got someone that is free to go with you tomorrow? I find they r often nicer when I am accompanied!!

    If they have done blood tests ask what the results are?

    Good luck, let us know what they say xxxxxx

  • Dear Allanah, thanks for your prompt reply! The blood tests ordered by nasty rheumy indicated I have inflammatory markers but information has to be prised out of them, it seems! Nobody to accompany me, hubby not very supportive...need a knight in shining armour!

    I do write things down but if rheumy disinterested as nasty one was I tend to disengage & seek an escape route!

    No swellings at mo so no 'evidence' either but have had previously. Should I ask for a scan?

    Thanks so much for kind thoughts, will report back! xx

  • Fingers crossed for nice rheumy.... I think writing things down is v helpful, and also helps to get thoughts in order. It would be useful to be able to quickly set out how it's been for you, ie what pain have you had in which joints and for how long, whether you struggle to get moving in the morning and so on. I rarely swell, but my rheumy can tell that joints are "boggy" by feeling them. They'll make diagnosis based on the blood results, what you tell them about previous symptoms and what they can see/feel when they prod and squeeze bits of you. And quite often you don't get a definite diagnosis straight away as it can take quite a while for the specific type of inflammatory arthritis to show itself. But if you are told you have a form of inflammatory arthritis, and they offer drugs, then please do think very carefully about rejecting these for natural remedies. Despite lots of stories of people doing v well with natural things, it's never entirely clear what type of arthritis they had to start with. And while it does seem that one or two people can get a positive result, that's only one or two out of the many thousands of people with inflammatory arthritis. Instead the research really does show that if you hit this hard with drugs in the first couple of years, then you can often go into remission for a long time, and avoid damaged joints, and decrease the drugs. But you have to do this at an early stage, and if you wait until it gets out of control then it can be very hard to manage.

    Oh, and the doc will decide if you need further tests, and more like x-ray rather than scan.

    Hope it goes well. Polly

  • Hi funkyfran has your rheumy taken any xrays yet. I ask as am in kent like you so i am assuming policies will be similar by nice. First time i went my feet hands and chest were xray. I had another blood test done too. Then consultant arranged ultra sound on my hands. I was seeing consultant in the first few weeks every week for around tree weeks!! Then i was started on the meds.

    If you have any pictures of swollen bits take them with you. For me my hands were a bit puffy that was all the evidence i had and pain. I have tried alternative medicine. Have to say it did not help me. Its not to say you might benefit. Hope you get on ok tomorrow tell us how it went xx

  • Thanks Miss & Polly, bit worried about having x rays...know I'm old(ish!) but not keen on radiation exposure...wouldn't a scan be a safer option? xx

  • Think that depends on how many you have had recently. xray that is xx

  • And the amount you get in x-rays now is really not that great. With MRI scans they often inject you full of a dye so that the inflammation shows up, and I reckon that's just as bad for you as a nano second of x-rays.

  • Do make sure you describe your symptoms at their worst. It's in the nature of inflammatory arthritis for symptoms to come & go and I've often kicked myself for joyfully telling doctors how great I feel, only to come crashing down a few days later. Good luck! Luce xx

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