New to this community site

Hi, I am new to this community site, not sure what help I can be to others with this condition as I'm new to it myself. I was diagnosed last year with RA and was given the usual literature from the specialist, but it didn't answer any of the questions I asked. I still have so many unanswered questions, and wondered if everyone has experienced the same treatment from specialists?

11 Replies

  • You will probably find more help here. Do cots are so darned busy.

  • Sorry that you are a member of the club. I have found that the people on here have a wealth of knowledge. I am only in my 10 month since diagnosis and this site keeps me going.

  • I too was given a leaflet, which was not very helpful. I just assumed that because I had correctly diagnosed myself four months before my official diagnosis (in January) that he assumed I'd also researched what the diagnosis actually meant. I had looked at a couple of sites - RA Chicks and RA Warriors, I think they were called, and what I read about day-to-day living with RA and its medications was so terrifying, I couldn't go any further. I just hoped I was wrong. After diagnosis I just focused on supporting my body, rather than finding out about the reality of living with such a frightening disease. A couple of months ago I plucked up courage to sign up here.

    The leaflet I was given seemed to downplay everything, as have the subsequent leaflets I have been given about the drugs. I suppose they don't want to frighten people though. The diagnosis is stressful enough.

    I take a list of questions to my consultations now - although I must admit my queries focus very much on the drugs rather than the RA itself. We can read up on the mechanics and processes of immune-dysfunction and how inflammation arises and what it does etc - but I suppose no one knows how each of us are going to be affected, what drugs are going to work, or what side effects we will suffer.

    The members here are very caring and supportive, and sadly, more than qualified to answer questions!

  • I love your user name and welcome to the forum, ftom that name you should fit in perfectly :)

  • Welcome! I haven't been on the site that long but have been in the club for the last 21 years, in fact it was this date I was admitted to hospital at the age of 14. There is a wealth of knowledge on here. Ruth

  • Hello, what I would do is phone the NRAS helpline and discuss all the questions you have with them. They are very knowledgeable and are very willing to help. My local NHS - MSK clinic are setting up a training program for people who live with RA to have one to one sessions with newly diagnosed patients so they can ask all the questions for which a doctor might not have a relevant answer to. I volunteered for the training and am looking very much forward to it. Maybe there is such a service where you live? It's worth asking. I've had RA for seven years now and am in remission. There is a lot of help and support out there, and from the wonderful people on this site. There is light at the end of the tunnel, believe me. All the very best.

  • Hello and welcome to you beautifulchaos :-)

    I was only diagnosed in June this year so an RA 'newbie'. Must say I found the forum so helpful not only for advice but for explaining things the specialists don't have time to tell you.

    For example I didn't know fatigue was a symptom of RA until I joined here, yet it is a major one with many people from what I've learned.

    Just 'chip in' when you like, you don't have to know all about it ;-) A lot of threads are just chat or peeps needing a bit of encouragement, they are just as useful as the med. stuff ;-)


  • even typing a keyword like 'fatigue' in the search nras button - above right - can steer u in the direction of info, and there's a section now to xplain common shorthand like mtx. welcome 2u , beautiful chaos. take heart from the infoyou'll gain from this site - knowledge is [almost] power.xx

  • Been on here from the beginning of my battle (and sometimes it is a bit of a battle) with RD (Rheumatoid Disease), it's a bit early to explain but you will as time goes on. For now all you need is information from the people who know the most about this disease.......the people who live with it everyday and all its complexities. As someone else said on here, if you want to just sit back and read, learn and absorb the information that's grand, speak up when your ready. Take care and all the best. J

  • Welcome to the site Beautifulchaos - you will find that you have much to share here and that everyone is very sweet about letting you do so as well as answering questions as they arrive.

    As for the rheumatologist, yes, you will find that many people have had the same type of experience. Just search on here and you will find many many answers, and if not, just ask!

  • Simply ask away as you will find a good bunch of people here with great advice and opinions you can take or leave. Welcome by the way xxxx

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