Newbie hoping for some support

Kerr

Hi all

Just found this lovely group and let me introduce myself.

I am 68 having been initially diagnosed with RA at 28 yrs old after the birth of my son and a horrendous dose of flu.

Back then i was given Naproxen and not offered RA clinics so i carried on with no great issues until i was 2013 when i needed surgery for diverticulitis which didnt go well as i became very poorly.

Just as i was recovering from that the RA kicked off big time in my feet and hands. I was eventually referred to my local RA clinic where i was put on methotrexate which after nearly ten years has given me lots of rheumatoid nodules! ( apparently a side effect of MTX)

My symptoms etc dont exactly match up with typical RA i dont think. More palindromic. I get severe tendon sheath pain in one joint one day moving on to another the next. This will go on for a couple of weeks then stops. Rearing its head again maybe a month later. Maybe not. I have managed to snap a tendon in my thumb from this.

I am not impressed with the RA clinic! I havent seen my so called consultant for years and always see the nurse practitioner every 6 months who really doesnt give me any advice that i dont really know. ( i am an ex nurse practitioner) She is more keen on knowing how painful and stiff i am in the mornings! I keep telling her i am not!

Getting in contact with the clinic is nigh impossible. Calls arent answered. Luckily my gp is supportive but cannot override the RA clinic care.

A couple of weeks ago i gradually... over the day started to ache all over. The pain eventually settled in my ankle. It was red swollen and very sore. I couldnt walk on it for a few days then it slowly subsided. A week on and its still swells up and aches in the evening. Is this a more typical RA flare?

I am worried as i am a very active person and dont want this to slow me down if i can help it

Thank you so much for reading my long post

XX

[Deleted User]

Hi @Kerr

Welcome to our Online Community, thank you for taking the time to join us and hope that your experience with us will be helpful.

It sounds like you have been through a really tough time, especially the fact you have had the this condition for such a long time, and it took years before you started any treatment.

We are sorry to hear that you feel that you are not getting the support you need, just wondering if your GP would be able to refer you to a different Rheumatologist clinic if you don't feel confident with the one you are going to.

Do you feel that you medication isn't controlling your pain and that you could be experiencing a lot of flare ups, if so, it could be that you need a medication review as there is other treatments available.

A flare can happen at any time and usually brought on by stress or an infection, have you been in contact with anyone with a virus such as a cold etc or going through a stressful period at the moment?

Things you can do to help with a flare up:

• Keep taking your medication at the doses you’ve been prescribed.
• Do gentle exercises.
• Put heated items on the joint – these can include a hot water bottle or electric heat pad. See below for more information.
• Put cold items on the joint – these can include a bowl of cold water with ice cubes, a pack of frozen peas wrapped in a towel, or a damp towel that has been kept in the fridge. See below for more information.
• Let people around you know, so they can help and support you.

Symptoms of RA is joint pain, swelling, warmth and redness, stiffness especially in the morning, hopefully one of our readers who has experienced the same will be able to answer this question for you.

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

Best wishes

Chris (Moderator)