HELP IM CONFUSED

Samantha15

Hello I’m 28 back when I was 23 randomly one day when I was 8 weeks pregnant I woke up with the worst pain in my wrist it was very swollen and painful doctor diagnosed me with tendinitis on and off my whole pregnancy it was sore but after I had my baby It soon went in to my feet shoulder and wrists (more like a Carpal tunnel pain and swollen tendons) had test which all come back negative just my inflammation levels a little high by this point everyday was a struggle I could barely walk and had a new baby to look after. Finally after 2 years I got referred to a rheumatologist who carried out lots of blood tests for various things all of which have come back negative for anything. Yet they are still treating me for arthritis which none of the medication they have put me on has helped including methotrexate I’m so just confused if all my tests are showing negative why they are treating me for it? If the medication hasn’t worked and I’m still in tremendous amount of pain surely that’s an idea that maybe it’s not arthritis and there’s actually something else wrong? No one is listening to my concerns. Please help if you have any advice or heard of anything similar
Thanks for reading 😊

helpline_team

Samantha15 wrote:

Hello I’m 28 back when I was 23 randomly one day when I was 8 weeks pregnant I woke up with the worst pain in my wrist it was very swollen and painful doctor diagnosed me with tendinitis on and off my whole pregnancy it was sore but after I had my baby It soon went in to my feet shoulder and wrists (more like a Carpal tunnel pain and swollen tendons) had test which all come back negative just my inflammation levels a little high by this point everyday was a struggle I could barely walk and had a new baby to look after. Finally after 2 years I got referred to a rheumatologist who carried out lots of blood tests for various things all of which have come back negative for anything. Yet they are still treating me for arthritis which none of the medication they have put me on has helped including methotrexate I’m so just confused if all my tests are showing negative why they are treating me for it? If the medication hasn’t worked and I’m still in tremendous amount of pain surely that’s an idea that maybe it’s not arthritis and there’s actually something else wrong? No one is listening to my concerns. Please help if you have any advice or heard of anything similar
Thanks for reading 😊

Dear Samantha15

Thank you for your post. I am sorry to hear that you are in tremendous pain and nothing appears to be helping at this time. It sounds as if things have been very difficult for you. It sounds like you have already raised concerns over your treatment and your diagnosis with your rheumatology team but it is important to talk to them again about your confusion and concerns so that you can be clear exactly what you are being treated for. Perhaps making a list of questions and ticking them off as they are discussed. It may be that this is no longer relevant for you but there is information on the different types of tendonitis on the NHS Choices website on the link https://www.nhs.uk/conditions/Tendonitis/
It may help to look at some of the information concerning diagnosis and different types of arthritis. We have information about what is arthritis on the link https://www.versusarthritis.org/about-arthritis/conditions/arthritis/
We also have information on coping with pain on the link https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/
I hope that this is helpful and would like to encourage you to call us on the helpline so you can talk through your concerns with one of our helpline team. You can do this by calling 0800 5200 520 (Monday – Friday 9am – 8pm).

Best Wishes
Dawn

dreamdaisy

Hello, I am not a member of the helpline, just a forum member. I have psoriatic arthritis, an auto-immune kind which comes under the heading of sero-negative, i.e. rheumatoid factor is not present in my bloods but arthritis is evident in my joints. There are some people on here who are diagnosed as having sero-negative RA so it could well be that you are in this group but we are not docs and cannot diagnose. I am in my 22nd year of it, I began aged 37 and have been taking injected meth for eight years together with another medication.

Auto-immune nonsense can begin at any stage of life, I was born with eczema and went on to develop asthma so the arthritis was not the shock it might have been. Both my parents' families were affected by auto-immune conditions which they missed but thoughtfully passed to me. Pregnancy is a recognised trigger for RA which is not fair but life is anything but.

You may find the Living with Arthritis board on here of interest, more people look in on there as that is where the members deal with diagnoses, meds, appointments, setbacks etc. I wish you well. DD