Hi Christine,

My name is Anne 51 years old and I was diagnosed last May. Like you have always been very active, a working parent with two lads 19 and 20 and a foster carer.

I have found the hardest part is getting my head around this disease and coming to terms with it. I am taking 25mg MTX weekly and for me it has been great apart from a slight blip when I had an infection.

I think it is true we will never be the same as we was before and have to adjust to life with RA, I can no longer go for a full days shopping with friends to bluewater, and whilst the weather is poorly I have had to give up watching my boys play football on a Saturday as standing for long periods in the cold weather just doesn't agree with me anymore and I will pay for it later.

But you know what I am so glad that I didn't get it until I was 50 years old.

You will get so much advice, information and help on this site which has been invaluable to me personally and I have managed to cope because of it, I'm sure it will help you to.

With regard to CMO, not sure what this is all about but I'm quite happy with my MTX at the moment, and if this was true and it can be cured then why havn't we all heard about it yet ?

Will be interesting to hear what others think.

Take care

Anne x

Hi Christine
Welcome to the forum where you will find lots of advise, encouragement and empathy.
It does take time to come to terms with this horrible disease!!
My name is Sue and I am 56 and have had RA for the last 5 years. Like you I found it difficult to come to terms with and it is frustrating accepting the things you can no longer do.
However I think we are fortunate to have it now when there is so much available to prevent the disease progressing as it would do without them.
I have been taking Enbrel for the past 6 weeks as well as methotrexate and sulphasalzine and it has improved my mobility to a great extent but I think you will find that any damage already done to joints cannot be undone. Like you I still struggle with my feet and cannot walk for long distances anymore.
However you will find so much support from all your friends here and will realise that some people suffer so much more and still manage to keep going and give encouragement to others, which is a great inspiration to us all.

Best wishes to you

Sue

Hello

I am 35 and was diagnosed in 2007 18 months after the birth of my daugther. At first I was in complete denial - I remember telling my consultant soon after I was diagnosed that I was planning on going on a walking holiday in the Lake District which must have sounded rather silly as I could hardly walk a few yards at the time. After that phase I kept thinking when they get my meds right I will be back to normal. It is only recently that I have realised and accepted that I will never be 'back to normal' and that I have to learn to pace myself.

I now find it quite amusing that 1 minute I am discussing which are the best jar openers, etc with my nearly 90 year old grandmother and the next minute crawling round on the floor with my 18 month old son.

It sounds to me you are coming to terms with RA very well. As the others have said this forum is very supportive and very friendly.

Becky

Hi Christine

Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us and NRAS!

I'm Lyn, married to Mike, we have four children, Abby 23, Ian and Jake 17, and Louis 16. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with sero-negative RA nearly 23 years ago and have since run the gamut of medication and had lots of surgical procedures along the way. Currently on Enbrel, Leflunomide, Prednisolone and Naproxen, and a wagon load of pain killers! Struggling at the moment after knee surgery last summer, a major flare in Cyprus of all places, two lots of knee aspirations and joint injections in 7 weeks, a depomedrone injection last week and a further referral to Orthopaedics, appointment on Monday, but heyho...

I was extremely fit and active before the RA. Played various sports at club level and athletics and swimming at county level and took part in national gymnastic competitions in my younger days. I also enjoyed fell walking, cycling, running, in fact anything energetic!! I'm the geek who used to look forward to PE and games lessons when everyone else was trying to find a way out of it!! RA certainly brings you down to earth with a bump! Thud!

It's sad when lives are affected so drastically but alas that is life! There are always plenty of other things in life to do, things that in the past you might not even have considered. RA, whilst closing many doors has without doubt opened at least as many new ones for me. Try to look on the bright side and remain positive , now's the time to try something new!

A referral to a podiatrist would be useful. He will be able to make your feet more comfortable and guide you on appropriate foot healthcare. Also good footwear, with arch support is a must as it will help protect the fragile bones of the feet. Yes here I go, back on feet again!! You only get the one pair so do try to look after them

Cetyl Myristoleate (CMO) is a supplement which is considered to have anti-inflammatory properties (well in mice at least!!). It has never been the subject of adequate testing to my knowledge and is certainly not going to 'cure' an auto-immune disease like RA! If in fact it did deal with the inflammation aspect, which I doubt, it is unlikely to have any affect on the disease itself. This is the most important part of RA, disease control. Anti inflammatories deal with symptoms, pain killers deal with the pain, but DMARDS (ie methotrexate) or Anti-tnfs (ie Enbrel) slow the progression of the disease.

In the very early days, before todays modern drugs appeared, I tried all sorts of 'cures' and supplements from New Zealand Green-lipped Mussell to white willow bark. Needless to say a small fortune later, no cure and a significant amount of joint damage! Moral ... stick with advice from your consultant, they are the ones with the knowledge to get you through this relatively still intact

Methotrexate rules ... if only I could get my hands on some !!!! (sorry Christine, others will understand after recent problems!)

Keep posting Christine. Look forward to getting to know you,

Lyn x

PS Sorry I do ramble at times (I blame it on the drugs)

Wow!
Just logged on and am overwhelmed by all the replies from so many of you! I can't thank you enough, especially for the honesty in the postings regarding getting back to 'normal'. It is good to hear from people who understand all that goes with having RA: pain, fatigue and weakness being a few that aren't always obvious to friends and family.

It is apparent that I need to stop being focussed on the things I can't do and look for alternatives. At the end of the day it was stressed that there are 3 departments involved in my management and treatment: Rheumatology prescribe, advise and refer to podiatrist etc, my GP monitors and the rest is down to me. Excercises, learning to pace myself, recognize good/bad days and accepting my limitations.

There: easy to say isn't it ... the hard part is remembering!

Heartfelt thanks to you all and I shall continue to look at the forums.

Hope you all enjoy what is left of the weekend: don't do anything I wouldn't do !

Take care

Christine

Hi Christine

Welcome to the forum. You will find lots of advice, help and support, and yes straight talking on here. It has been so useful and helpful to me since I was diagnosed in October 2010.

I live and work on a farm in North Devon with my Partner David. My daughter Teresa aged 23 lives with us and one of David's children Ben aged 18 also lives with us. He wants to work on the farm but we can't afford to employ him so he works on a local dairy farm. But now with this diagnosis we could really do with him at home. But we feel it wrong to ask him to come here for less money when he is earning so much milking etc.

I am on 15mg of Methotrexate and take folic acid and co-dydramol for the pain. I am just beginning to get the benefit having been on it since the end of December but still get bad days if I overdo it.

The hardest part for me is accepting that I will never be the same again and even harder is convincing other people that you aren't, especially when you have no symptoms to show
them apart from a pathetic limp and lumpy knuckles! When I asked someone to look under my bed for my slippers the other day they looked at me as if I was putting it on. I said I can't kneel down on my knees without pain and if I got down there I couldn't get back up without a hoist! All I got was an "Oh it's that bad is it????"

Look forward to seeing more posts from you

Take care x

Julie

Hi Christine,

Welcome to the forum, we are a friendly crowd with a wealth of tried and tested experiences. It is difficult to get your head around things at first but you will in time.

I am Lorna, I was diagnosed just over 3 years ago, I went from being fit and very active to bedridden and unable to move and in so much pain I thought I would never be 'Normal' again.

But the good news is I was started on the triple therapy right away and I am as good as I was before, as long as I do not overdo things. Keep focused and be positive you will get on top of things.

It was a long haul for me too but the difference is amazing, I could not hold a cup, or brush my hair or pick things up it really was dire. I lost the use of my right arm and could not turn my head and was bent over with the agonising pain that I was in. But as I said it's history now, I hope I never go back there.

Take care and keep posting things will improve.

Lorna xx