Molly1 Member Posts: 10
edited 11. Jun 2011, 15:00 in Say Hello Archive
Wondered if someone out there could advise me? I've been to see a rhuem consultant twice. I have pain in both my hands and feet. Each day is different, which fingers ache, whether I can only hobble or both!! He's taken various blood tests and apparently I haven't got RF showing up. He's finally started me on hydroxychloroquine 5 weeks ago and told me it'll take about 2 months to start working. He told me to keep taking ibuprofen but that doesn't seem to work any more. He told me that there was no diagnosis, it was still the exploratory stage. No other information. I'm not seeing him again until early July. In desperation I went to see my GP and was told I had sero-negative arthritis (no information about what it was!). He then gave me strong painkillers which put me on another planet the couple of times I've taken them. All the information I know about arthritis I've looked up on google! I feel totally at sea, nobody seems to want to give me information or help. I feel desperately tired a lot of the time and am struggling with primary teaching. Not sure if I should be attending a clinic or if there's a professional who could listen and advise me. Any idea what I should do?


  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Hi Molly...

    Welcome to the forum..
    My name is Tracy 31 who also has been diagnosed with inflammatory arthritis as i had no RF shown in my bloods..Mine was diagnosed through bone scan.. My rheumy has also put me on hydroxychloroquine, i was in an awful lot of pain , the hydroxy took about 10 weeks to work for me.. although i still not great i'm better than what i was.. My first symptoms started in my hands and was awful to get by as we use our hands for everything.. I found soaking my hands in warm water helped, deep heat gel and if your hands are swollen then ice pack for 20 mins to reduce swelling..
    I believe you should go back to your gp and discuss how you are feeling with your pain etc.. I am on alot of pain meds which have been advised by my rheumy and GP..Please don't suffer in silence..If your GP isn't helpful then request to see someone else..
    Sounds like your quite new to this.. mine has been 10 months.. so if i can help in anyway then feel free to pm me anytime..
    You are not on your own and they are a great bunch on here and will listen to you anytime..xx

    Your doctor could also refer you to physio that might help..
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Molly1, it's nice to meet you and I am so sorry to read your history. No wonder you are all at sea, this arthritis malarkey is a very confusing one and sometimes the experts are not the help they should be - I think they assume we, as patients, have a deal of prior knowledge which, actually, we don't.

    A sero-negative arthritis is one that does not register what is called a rheumatoid factor (RF). The inflammatory arthritis I have, psoriatic arthritis (PA) falls into that category but, luckily for me, my inflammatory markers (CRP and ESR) were always very high, so once I was taken seriously by the medicos they were happy to concede that I had a form of inflammatory arthritis. There are many different kinds of this dross, around about 200 I think, so diagnosis can be tricky.

    You are being seen by a rheumatologist so that is a good thing. Your GP may not be as able to help as much as you think as this is not their area of expertise: if the pain meds you now have are not suitable for you then he should be able to offer you an alternative. There are many kinds out there and there should be another option for you. I myself get by on 30/500 co-codamol, they are a mixture of codeine and paracetamol, for the rough times I have tramadol 50mg (they make me very drowsy) and for the I-cannot-bear-it-any-longer times I have a slow-release 100mg tramadol. I have never taken hydroxy but many on here do and find it beneficial.

    Tiredness is a factor of any form of arthritis, be it osteo (OA) or an inflammatory version. (Those are usually triggered by an over-active immune system.) Over time you will learn to pace yourself, resting whenever you can and for as long as you can is important in the day-to-day management of life but I am sure that this is having a great impact on your work (and vice versa).

    Right, I have to go now as tiredness has hit me and with some clout! Please feel free to ask me any questions, I will do my best to help. The LWA (living with arthtirits) forum is the place where questions about meds, doctors, treatments, suuport for appointments etc are dealt with, more people look in on that one than here so feel free to post any questions on there too. Rest assured we know what this is like, I hope you will learn more about this from reading and posting. Take care, I wish you well and I look forward to hearing from you - I'll check here again tomorrow. DD
  • Molly1
    Molly1 Member Posts: 10
    edited 30. Nov -1, 00:00
    Hi Tracy & dreamdaisy,

    Thanks both of you for your replies. It's really great to know people who can offer advice. I'll definately post questions and keep an eye on the LWA site. I think I'm going to make another appointment with my GP to sort out my pain relief. Hopefully, if I've learnt more about arthritis, then I'll be able to ask my consultant definate questions about my blood tests and what happens next.

    Thanks again, I'll be in touch
    Take care
  • barbara12
    barbara12 Member Posts: 21,279
    edited 30. Nov -1, 00:00
    Hi Molly
    The others have said it all, I just want to say a very warm welcome to this lovely forum, believe me you will get great support.
    If you want to ask more questions post them in living with arthur, more people look in there.
    I do hope to see you posting more very soon.