In agony but test results only weakly positive

Jen76

Hi there,

After waiting over a year to see a Rheumatologist I have been told that I have no abnormalities of the hands and feet, a negative anti-CCP antibody test and a weakly positive rheumatoid factor antibody. My issue in being diagnosed with mild rheumatoid arthritis is that during periods of lengthy flare ups I was in complete agony and can only described the pain as like having both my arms twisted up my back. I couldn't use a knife or fork, butter a sandwich, or provide for my own personal care during flare ups, let alone work or sleep. I have been left with a limited range of movement in my arms and yet it seems because I had little inflammation that I am categorised as being on the very mild scale.

This leaves me with a sense of doom that if this is how bad the pain is when it is mild how much worse does it get when the condition worsens. Also it leaves me feeling like the amount of pain I was in is just not reflected in my result and so therefore like I am a bit of a hypochondriac in the view of the medical professionals. I am however now receiving medication for the condition (hydroxychloroquine and amitriptyline) along with physiotherapy which seems to be helping. I just need some reassurance in terms of why these test results are not reflective of the pain I have been experiencing.

Many thanks

Jenny

[Deleted User]

Hi @Jen76 and welcome to the wonderful online community!

You have certainly come to the right place to air your frustrations- let me assure you that you are not alone in all of this, many of us have had exactly the same experience that you speak of. Personally, I have been made to feel like I'm treading through treacle trying to get an answer or any help at times, but it will all pull together eventually. It is a huge journey, getting a diagnosis, treatment, empathy or just understanding, and you will never go it alone here!

I understand that you are frustrated and being told that you have a weak result does make you question a lot of things, but never doubt yourself or worry about what the professionals will think of you. Of course the medical professionals do what they can, and what they are allowed to do, but you also know your body. It's great that you have started medication and physio which seems to be having an impact, but remember that a weaker result doesn't lessen the significance of the experience for you.

We have some information that you might find useful here:

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

Flares are never a great experience- no matter how long they last so please do take a look at the tips for managing symptoms and do just keep talking to us!

Take care,

Sarah

helpline_team

Dear Jenny

Thank you for your posting on the forum. I am sorry to hear that you have been in so much pain but I see that you are now on medication and this should begin to help manage the condition. It may be a while before you notice the hydroxychloroquine working – possibly a few months. It is important to keep taking your medication during this time. It may be as long as 12 weeks before you notice the benefits.

I am glad that you have started physiotherapy and this is beginning to help, exercise is very important when managing arthritis. I can only reiterate what Sarah has said in her post. If you’re having regular flare-ups, you should mention this to your doctor. It may be that you need to review your treatment. I see that Sarah has put a link in for the information about rheumatoid arthritis and about managing this condition that I hope is helpful to you.

I have also put a link in for our information on pain and arthritis. RA is a very variable condition so, doctors do not start all patients in exactly the same way on the same drug regimen.

Managing Your Pain - Treatments and Self Help

I hope this is helpful. If you feel you would like to talk things through with one of us here on the  helpline team you are very welcome to call us. You can contact us on 0800 5200 520 (Monday – Friday, 9am – 6pm).

Best Wishes

Dawn Smith

Helpline Advisor

Jen76

Many thanks for taking the time to respond. I guess I just don't want to feel alone in having symptoms that are not truly reflected in test results. I guess the fact that there is no one test for RA is possibly a reason. Thankyou for making me feel welcome and for the helpful links you have provided. 😃