I am new to this site and RA. For years I have suffered phases of extreme pain in my feet, hands and elbows.

My blood tests showed nothing, but I saw a locum doctor who said there is research that not everyone who has RA has the marker in their blood. I have an appointment with a rheumatologist next month. My pains are much worse in the morning; I sit on the edge of the bed for a few minutes to get my feet 'working' and struggle in the shower to open shampoos etc. I have chosen shampoos and shower gels not because they are good for my hair but because they are easy to get product out! At the minute my hands are really painful, but my thumb joint on one hand is swollen and very sore. I have had shoulder surgery recently andI must say, pain in this small joint is just as ad (for such a small joint). Not sure what the future holds, I am 46 and feel 70 when I get phases of worsening joint pain. It's good to read some of your experiences. I will undoubtably continue to use this site. My husband is quite devastated by my diagnosis. His mum had RA and when she passed away was in considerable pain from it.

25 Replies

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  • Welcome to the site and hello., yes it could be RA not all people have the rhematoid factor in the blood myself included, there are lots of drugs that can be used which can help you with the symptons x

  • Thank you Summer :-)

  • Yes welcome Lorna and don't despair, as summer has said there are many drugs to help you and I'm sure your Rheumy will get you some pain relief asap. Take care of yourself in the meantime and keep in touch with how you are getting on. xx

  • Thank you Luthien

  • Hello and Welcome Lorna,

    Sorry to hear that you also have dreadful joint problems. As both previous post state, there are some excellent treatments to help stabilise this condition. Lots of good information on this site, also lot of friendly cyber faces. Always someone here to help with questions and queries.

    Carole

  • Thank you Carole :-)

  • Hi Lorna....Sorry to read that you may have RA. I can identify with a lot of your story because if it hadn't been for a locum doctor at my surgery who arranged for a ultrasound scan of my hands I might have still been waiting for a diagnosis I had swelling in my hands but nothing much showed in my bloods..... I know as others probably do just how you're feeling right now..... all the very best for your appointment next month and keep in touch :) x

  • Thank you Amanda :-)

  • Hi Lorna, I am also new to this site and have had RA for just over a year so still learning about it all and finding my own way. Before diagnosis and medication I could barely use my right hand and thought it would never get better. But now my symptoms are controlled enough so that i am back at work and do most of the things i did before. I still have some issues but generally getting on okay. Good luck with you appt.

  • Thank you Charlotte :-)

  • Lots of us are sero-negative, so that we don't have the RF marker in our blood. There is another blood test that is done by the consultant rheumy called anti-CCP, and that can be more sensitive but people are sometimes negative for that as well and still have RA. But it's the combination of blood and physical symptoms that helps docs make the diagnosis.

    Hope you get an appointment soon. In the meantime use anti-inflammatories such as ibuprofen (or ask you GP for a good NSAID and a stomach protector), and hot and cold packs also help.

    But the modern treatments are completely different from what your husband's mum was probably given, as things have changed massively in the last 10-15 years. So don't panic too much. It's a horrible disease, but doesn't mean a life of pain and suffering. Most of us respond well to the drugs and are back to nearly normal after 6 months or so. Try to stay positive if you can. Polly

  • Thank you Polly :-)

  • Hi Lorna,

    I was diagnosed two years ago, and felt like you do re hands and feet. I am the same age as you and it was quite overwhelming at the start. I've tired several different meds along the way and now hopefully have found one that likes me and so far is making a difference. I was told when I started that now a days it is actively treated to prevent the pain and disfigurement that probably your husband remembers. Good luck on this journey x

  • Thank you :-)

  • Hello and welcome to this site. I am sero-negative. Even my ESR stays below 20 which is normal. The only thing that rises a little bit is my CRP but not by much. Yet before treatment, I was so ill that I had to give up work because of pain, being exhausted and depressed. Now I'm on leflunomide and all that is gone. I'm back at work and on the bicycle! Life can still be good even with R.A.

    Good luck!

  • Thank you :-)

  • Sorry you've got RA - it's a horrible condition but it treatable these days but welcome to the site!

    Yes I'm another person who is sero negative - it seems to take longer to get a diagnosis as the drs do like to have a positive test result!!!! However the good rheumy drs can see beyond this & start treatment.

    A lot of us struggle to get going in the morning - do you take any pain relief? It's worth taking something to help.

  • Thank you Pauline :-)

  • Thank you soooo much for all your responses. I now feel like there is support out there, apart from medicinal! I have been prescribed Naroxen, omaprozole (for side effects of anti inflammatory) and Zapain which is 30mg Codeine and 500mg paracetamol. These are not working yet :-) but will persevere. When I get a phase of increased pain and joint inflammation, I struggle at work; feeling absolutely exhausted and hot sweats. I will stay positive and know things have changed since my mum in laws time. To make things more complicated I am on statins for high cholesterol (hereditary) and beta blockers for arterial disease which causes angina. It feels like I hit 40 and everything went pear shaped! Thanks again for all your responses, it is very much appreciated.

  • Hi Lorna

    I currently feel just like you, I am 47 and feel like 70, I was finally diagnosed with RA last week after years of pain in my hands and feet, this year has been terrible with increased swelling and stiffness spreading to my wrists, ankles and knees. The fatigue and general feeling of being unwell has left me struggling at home and work, earlier this year my GP diagnosed me with depression and didn't even consider RA because my earlier bloods were clear.

    I was finally referred to a rheumatologist because more recent blood tests did show inflammation.

    I have also been worrying about what the future holds, it has been really encouraging to read all the replies you have had.

  • I was really reassured by finding this site and by all the replies. Given my husbands experience with his mum who was a sufferer, I guess I am not sharing with him how I am feeling and exactly how much pain i am in. I will feel better when I see rheumatologist next month. I am staying positive. Hope you get the same reassurance from the people on this site x

  • Hi Lorna, I'm late to see this post but just wanted to echo all the comments above. I'm also sero-negative. The early days can be really difficult, but for me the diagnosis of RA was a relief as I was feeling so dreadful and was relieved to finally know what I was dealing with. Things will get better and you're not alone :-}

    Cece x

  • Thank you Cece. You are right, now I have a diagnosis I can at least move forward; I did feel like I

    Was leaping from feeling really ill with lots of pain into another episode and stopped telling people how I was feeling. As I said before, feel so much more reassured for sharing it here and having so many responses :-) hope you are well at the minute x

  • Hi Lorna. I am sorry you have been struggling to come to terms with having RA or something similar. As everyone here has pointed out that things will get better for you when you are diagnosed and treated then there's not much I can usefully add, apart from welcome to this site and good luck for the next lap of your journey. Tilda x

  • Thank you Tilda x

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