Just Looking For Information

[sabethea]

My extremely loved sister-in-law has just been diagnosed with RA. Any advice on good websites, useful information for the early days of RA - anything, really, would be welcome. I just don't know where to start at the moment.

Comments

[meaux30]

I like Humira Junkies on Facebook. And not specific links but my advice is to be careful about getting caught up in internet madness about RA. It is a life changing diagnosis but people LOVE to talk about bad news online. I got diagnosed last year and for a while got so caught up in horror stories I was miserable. NOW I specifically look for real scholarly research from source like- Amercian College of Rheumatology and the Lancet. There is little doubt that early, aggressive treatment shows REAL promise. I can't beleive how great I feel after a several years of just not feeling "right." The Areican Arthritis Foundation site can even be a downer as it makes reccomendations like "get an occupational therapist" and "take naps." My life right now is 100% normal - I feel great, I do not have pain, I have tons of energy and RA is just a side note not my day to day existence. Sorry not exactly what you were looking for but good luck to your sister in law. I have actually purged most of my RA links becasue NOW that I have done the research I

[meaux30]

ANd I don't know if this is weird - but I am happy to correspond about my RA experience - just message me and we can emial. I am not an expert AT ALL but I have tried a bunch of different meds and some naturopath stuff and exercise and am happy to just talk about what it has been like. Sorry for the typos above - I am a horrible typist!

[sabethea]

This is just the sort of news I was looking for :) I'm very pleased for you - and yes, I have every empathy with you about the web thing: I have CFIDS/ME and there's a lot of downright nonsense out there. That's why my first thought was to come here, rather than try and google stuff myself (well, I did a bit of that, too) because I reckoned people who live with the illness would know what's true and what isn't.

Thank you! Thank you very much. It will be good to have something positive to tell my husband when he gets home (it's his little sister: she may be in her 40s, but she's still his little sister).

[meaux30]

OF course she is his little sister!!! Funny thing - I just turned 42. At 40 before I knew there was actually something wrong with me I was so achey and stiff and sore and depressed all the time I thought THIS IS WHAT IT MEANS TO GET OLDER - NOW I know it is jsut the RA - I do not feel like that anymore - I feel like I did at 30 or 25 just plain old me. Treatment makes a HUGE difference

[sabethea]

That's brilliant. Getting diagnoses like this is a bit like walking into a brick wall: for a while you're too stunned to do anything but stand looking at it. Now I feel like we're beginning to climb the wall a little...

[meaux30]

It is like walking into a brick wall - I would think you had expereinced something similiar with CFIDS/ME? Seriously I jsut thought I was OLD - so while it was a relief to know NO, not old, sick - it was still such a profound change in how I saw myself

[sabethea]

My diagnosis came at 15. Not sure whether it's better or worse, but the fact is I don't actually remember what it's like to be ill. (17 and a half years and counting...) I thought I was mad, rather than old - everyone said things were easy but they weren't. For me, a diagnosis was a thing of joy: at last, proof I wasn't totally crazy!

[meaux30]

One more thing that I think is important to mention just occured to me - ALOT of the RA statistics available are based on historical data. This was one point I have discussed multipe times with my doc - The biologic drugs (whihc have only been widely used for about a decade) are changing the course of the disease. Historically you may read that 30% of people with RA are disabled within 10 years of diagnosis - Many poeple - my rhuematoligist in particular -don't beleive these statistics will remain true going forward, PLUS there is evidence accumulating that the biologics mitigate other risks like heart disease.

[sabethea]

Brilliant. Thank you. I am so glad I came here - I am feeling considerably more positive than I was, and hopefully I can pass the positivity on :)