My name is Sylvia and I'm 54. I've been struggling for nearly 3 years, but didn't know what was the problem. I finally saw the consultant rheumatologist last Monday, and it was like a huge release from the mire of frustration, pain and confusion. When she confirmed that I have RA, I almost cried with relief. It's not that I relish the prospect of having a chronic disease, in fact I'm rather scared of the future, but at last I'd found someone who understood and she explained clearly what the treatment will be, and promised that I'd "feel 80% better by the weekend".

I am delighted to say that she has proved right so far (early days obviously and I'm on Prednisole so I know that is "doing the talking") - I've started hydroxychloroquin sulphate and will start methotrexate in a couple of months, and I'm being realistic about how things might progress. However, I feel that I've got through a horrible initiation and I've emerged knowing how to pace myself and take rest as and when I need it; I've accepted that I need to use sticks some of the time and I've accepted that I will need meds for the rest of my life; I've also already lost 2.5stone and am at a comfortable target weight; I've got several pairs of smart "comfortable" shoes with insoles and am a new fan of "Hotter"; I've realised that I have a high pain threshold and can cope with discomfort as long as I get rest and most especially I've learnt to ask for and accept help.

I hope that what I've been through recently won't recurr too often, but I don't really know what my baseline state will be after I finish the steroids. But now I have a confirmed diagnosis, I feel reassured that NRAS provides information and a link with others in a similar position, and I'm looking forward to making new friends here and helping out if I can

Hi Sylvia, and a warm welcome to the forum, though I`m sorry you have had to "join the RA club."

Sometimes it seems to take a long time for firm diagnosis, though I was lucky in that my GP was very much "on the ball," and got me referred quickly. I hope your meds work , and you continue to improve.

I`m Kathleen, age 61, and married to Nick. We have two sons, two little grandsons, and we live in Durham. I`m currently taking humira, for over 4 years now, along with various other bits and bobs.

Take care,

Kathleen x

Syliva

It is lovely to have you as a new member. The forum has been a god send to me, especially in the early days when I was first diagnosed. You will find so much help, information and support on here and someone will always be able to answer your question.

I think I have had RA all my life but was only diagnosed three years ago. I am 49. It was like a great burden had been lifted off my shoulders. I had felt so unwell for so long. I was beginning to think I was losing my mind and imagining it as every time I went to the doctors they could not come up with an answer. Luckily one day I saw a doctor who was more clued up and bingo he recognised my symptoms and immediately launched into action. Like you say, no one wants to be diagnosed with a incurable, chronic condition but boy was I glad I finally had some answers and a goal to work towards. It has been a rocky road, but I am a great believer, that knocks make you stronger. I worry about today only and let the future take care of itself.

There are many drug options out there and now you have to have the patience to find the right one for you.

Good luck and keep posting.

Take care

Jackie
xx

Hi Sylvia

A warm welcome to the forum. I am sure that like me you will find it an invaluable source of help advice and encouragement. I am 57 and have been diagnosed nearly 6 years. Currently I am on Methotrexate and Enbrel.
I hope that your condition will be quickly stabilised, you seem to have a positive attitude which is good. I too discovered Hotter shoes. Buying shoes takes on a whole new perspective these days.

Look forward to hearing more from you.

Sue

Hello Sylvia

A big WELCOME from me.

I'm 54, nearly 55 and I was diagnosed four years ago and like you I was so relieved that I had a been told what it was, had medication to treat it and I wasn't a hypochondriac. I am sure my GP thought this, he was as useful as a chocolate fire guard. Didn't believe me about the pain, he did do blood test but wouldn't test me for RA, even though I kept asking him to, according to him my hands looked alright so I hadn't got it. Didn't advise me on how to take over the counter pain relief, didn't offer any prescription for stronger pain relief, I ended up going private and well the rest is history.

It's good that you have realised that you have to ask for help or accept it, I've only just started to do this, I just like to be Miss Independent, have realised that I must not try to struggle to do things and use the various things I have for opening bottles, jars etc, rather than struggle to do it without and then end up paying the price the next day. Took me four years for the penny to drop, you've realised this early and that's good. I still think I haven't really accepted this illness and it will one day be all a big mistake. Stupid, yes I know but we all can dream.

Steroids, yes, I've just started taking them and I think who ever invented them should of been Knighted, they are a wonderful instant pain relief.

Please keep posting, asking question, nothing is a silly question, we have or are still on the steep learning curve of RA.

Paula x

Hi Paula - you have just made me feel great! I too was beginning to feel like a hypochondriac and felt that my GP just wasn't seeing the real problem. The only obvious sign of swelling was my left knee - but that has a pre-existing skiing injury and a massive baker's cyst, so always looks a bit misshapen, but as result he referred me to a knee surgeon - by the time I'd gone through all that waiting, MRI scan, and 4 steroid injections in both knees, nearly a year had passed. He thought my hands looked fine and the x-rays confirmed only minor damage, so he thought any signs of inflammation were secondary and caused by osteo-arthritis, not the other way round. However, now I'm on the steroids weight has dropped off me and this week I appear to have lost 5lbs - probably fluid, and all my joints look really skinny and bony - clearly they were all inflamed and slightly swollen, but to an untrained eye they seemed "OK".

Although I've only just had a confirmed diagnosis, I feel that I've known for well over a year that it's RA, so I've had time to come to terms with it. My biggest issue has been accepting that I'll have to take a cocktail of meds for the rest of my life - I hate having to be dependent on "someone else" - but obviously they do help and I'm just relieved to be feeling better and thinking clearly again.

Hi Suzanne - you sound so reassuring, thank you. It's good to know that others are on the same meds as me (well almost the same, as I'm not on humira). I did enjoy scrolling through a few posts yesterday and seeing how others have got through the problems that have plagued me too.

Well I must be off to Slimming World now - I'm a target member and help out in group, so it's a busy few hours, but I'll get back and have a quick nap so I don't get too tired.

Many thanks - Sylvia

Hi Sylvia,

I am Lorna, I am married to my husband Ken for 30 years in July, we have 3 beautiful girls who are 18, 24, and 28. Our eldest just got married in February, a truly amazing day was had by all. I have had RA for 4.5 years, I was hit quite suddenly with mine. In the course of 5 weeks I was bedridden, it was horrendous I actually thought I was dying. I was going downhill fast and nothing showed up apart from raised inflammation. Initially I thought I was doing too much in my garden, but realised very quickly it was more than that. I think I had a total of 3 blood tests and it was in week 5 when I had become so ill that it was noticed and the doctor called me that evening with an appointment fitted in to see a Rheumatologist the following day. The bit that lives with me is when she put her hand on my arm and said I would not walk out her surgery as bad as I had just walked in. At this point every joint except my knees were affected. I had lost the use of my right arm and my hands and I could not turn my head. She gave me a steroid injection followed by 3 more at 2 week intervals if I remember right. I had little movement after a few hours.

After a thorough examination she told me she thought I had RA, I had said I had never heard of it. I was to know in 2 weeks after more blood tests. Sure enough it was to be, I was devastated, but I had faith in the triple therapy I was to be put on. ( the same as you but all together in staged doses. ) I was ill for along time but I am in control now not the RA.

GOOD NEWS is I'm not like that any more, I keep really well and I am no longer on Sulph this was stopped after 1.5 years as I no longer needed it. I do everything I did before but I try not to over do it. I have NO pain now so being positive does really help.

Glad you have found the forum ask anything, anytime nice to hear from you.

Lorna x

Hi Naomi - I'm in Newton Abbot - just round the corner really! What's the best way to get in touch with you? I'm on facebook and check in most days, perhaps we could meet up and have a tea and a chat... My full name is Sylvia Dell

I've been contacted by the hospital to get started on Methatrexate next Thursday - TAIRU seems really on the ball and getting things underway really fast. I'll be part of a clinical trial for new MX users. I've been feeling so brill since starting the steroids and the nurse said they want to get my DMARDS sorted out before the course of prednisol finishes - I want this feeling to last forever, it's been so long since I felt well that I'd forgotten what it was like to be "normal". Suddenly I've got my brain back and I'm bubbling over with plans for the summer, and looking forward to spending time with my kids and the rest of the family - even shopping is enjoyable again. Speaking of which, I had to laugh when the nurse rang me, and I could hardly hear her as I was shopping in Poundland with hustle and bustle all round me! She was totally unfazed and calmly explained the details - so reassuring and, well, NORMAL!

Sylvia, I've just sent a friend request to you, and I'm so excited now to be building a network of RA supporters. I only knew one person with RA, a male colleague, before getting it myself. I now have a few fb groups I belong to and have many fb RA friends to swap support with. It would be really nice to add you to my network. I have a had good experiences of Torbay hospital and of Dr Mckay. The nurses there are great too and one of them, a research nurse, was so kind in helping me to get to grips with injecting my Mtx. She really made the experience bearable....and now I'm totally relaxed with this aspect of my treatment. Good luck with the Mtx. I just restarted my Mtx treatment yesterday and am feeling really positive about it. Can't wait to 'chat' on fb with you x

i so agree Paula. I know my experience over the last year would have so much harder without this group and my face book groups and friends. Most people have no idea what we go through......and frankly some really don't want to know and don't care. Other people who really get it keep me sane (ish). Naomi x