New, Confused and Bruised

Sonic

Hi everyone!

Firstly I want to say this site is amazing. It gives some comfort to be able to read and relate to so many others life’s with arthritis. I’m hoping to be able to better my own understanding but hopefully one day maybe be able to return some helpful tips!

Quick background on me: I’ve recently been diagnosed with a flare up of Rheumatoid Arthritis. I was first diagnosed at 3 years old and battled with it for 13 years till it apparently “burnt itself out” at the age of 16. Now I’m 32 and after feeling some persistent but strangely familiar aches and pains I finally went to the doctor a few months ago. Since then I’m sad to say I have no idea really what’s been going on. I don’t understand what Rheumatoid arthritis is. I ask doctors and I don’t really seem to get helpful answers. First GP I saw actually asked me what “Stills Disease” is… my rheumatology consultant looked at my history and pretty much came to her own conclusion that I knew what the hell she was talking about. I guess because I was diagnosed so young I didn’t have the capacity to fully understand what was happening and no one would have explained it. Now they presume I’m an expert because I’ve grown up with it but in actual fact I had no idea this would be a life long battle! I’m back on methotrexate and currently battling for help with chronic pain in my hip / pelvis but also locking joints in the night and it’s all rather overwhelming.

The current strain on the NHS has meant staff at all levels are overworked and it makes me not want to pester them with my questions. I want to do everything I can to help keep my body fighting fit so I’ve set myself a mission to find out for myself what RA is, what life changes I can make to help my body deal with it and what pain management options are out there as opposed to just medication.

Any tips or advice on how to live with RA will be extremely welcomed.

I have so many questions so you’ll probably see my name popping up all over this site!

that’s my long rant done.

Nice to meet you all, would be great to get to know you!

PeterJ

Hello @Sonic and welcome to the community. We are a friendly and supportive group and I hope that you find that as well.

I understand that you have Rheumatoid Arthritis and would like more information about it. Our website has a lot of useful info and a good search facility so please have a look around, to start with try this.

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

If once you have looked at this you require more don't forget we have a Helpline

https://www.versusarthritis.org/get-help/

They are not medical people but can direct to more sources of information.

Please do keep posting and let us know how you are getting on and I am sure others will connect with you to share their experiences as well

With very best wishes

Peter

stickywicket

Call that a rant, @Sonic 😉 BeIieve me, it's not, just a nice, clear statement of where you're at.

I don't know if this will help but I was diagnosed, aged 15, back in '61, with Stills Disease. I was told that, if you had RA before you were 16 they called it Stills. I don't think that's quite right. I think I was Stills also because I had the salmon rash and other stuff and also because, back then, I don't think they'd discovered, or at least distinguished JIA etc. So I remained a Stills patient but gradually it seemed to morph into RA and that's the term I've used ever since as it's more common and people - even doc people - understand better.

I've found, over many years, that I have to be clear with docs. Sometimes, maybe because I've had it for so long and maybe because I'm reasonably articulate and clued up about medical stuff in general, they do think I know more than I do about something. At that point I just have to stop them and ask them to explain. Parents often keep the worst of things from their kids and maybe yours did so you only have a sketchy knowledge of what was wrong in your childhood. That's OK as long as you tell the docs. Clarity all round really does help everyone.

Arthuritis

@Sonic Here are a couple of videos that my local GP surgery uses to both educate their own staff and patients.

For patients

https://youtu.be/Ksil9wI2a7E

Young Uk patient describes RA diagnosis and the condition.

https://youtu.be/hxkt-8gyyp0

The important thing is you are on a sufficient and effective dose of MTX to slow the damage that our misguided T enforcer cells much like marauding pirates like to do at night. (There are peacekeeper T cells (T-Reg) that are meant to keep the marauders in check, but when there are not enough you get autoimmune disease. A bit over simplified but its a key area of research).

Consider reviewing your diet as well, sometimes food items can trigger flares, I have already found a few trigger items.

There is some published info on mediterranean & anti inflammatory diets that might help.