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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi All
My Name is John and looking at the forum there seems to be an influx of john's. I was told I had RA this year and it felt as if I had been kicked in the gut in the past couple of month's I have been there and back asking why me and feeling sorry for myself because this time last year I was working full time and now feel nothing is going right.
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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Hello John
I hadn't noticed the influx of john's but I guess we'll have to start numbering you all if that's the case - seriously though welcome to the club, but sorry you had to get diagnosed with RA to join. I have only been diagnosed just over a year ago but completely understand how difficult it is to come to terms with it. I think for the first six months it was my waking thought every day but as time has gone on, it is not the first thing on my mind but undoubtedly this rotten disease impacts on your life in a big way both emotionally and physically. I hope that you will find the forum a great support, it is somewhere that people do understand what you are going through and any drug regime or questions you might have somebody here will be able to help you through their own experience. You are never alone!
warm regards.....eve
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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John, welcome to the forum. It really is a helpful and supportive place to be. Its understandable that you feel the way you do, I think its fair to say that all of us have been there too. When you are first diagnosed its absolutely takes over your life, you want to talk about it, read up about it, look on the websites. This is helpful, but some information can be scary and its better to come on here and speak to people who are going through the same thing. I would be lost without the support and advice I get on here. It will get better, it takes time to get the meds right, but please dont think that you wont ever get the answers you want  BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Welcome John. I am also recently diagnosed and struggling to come to terms with it....so I truly understand what you're going through. Like the others have said this is a place where you can be amongst people who can support you and where you can 'feel at home'. I'm sorry about your diagnosis. Best wishes from Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Welcome John Sorry that you have had this horrid diagnosis but I am sure you will find this forum an invaluable source of help and support. It is so good to be able to share with people who know exactly what you are going through and understand when you are down or need to rant and rave. I have been diagnosed 5 years and am currently on Methotrexate and Enbrel which is working well for me. Hope they manage to get your medication sorted quickly. Look forward to hearing more from you. Best Wishes Sue
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Welcome John,
Sorry you have RA but glad you have found this site. It is great for all sorts of reasons - friends, advice, and
comparisons. Make good use of it.
I am Rose diagnosed in 2008 but still not sorted. Due to start Rituximab in 2 days - ekk. I am married to
Mike for 33 years.
Rose
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Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
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Hello John,
I was diagnosed in March'11 and soon put on triple DMARD therapy - first MTX then Hydroxy then Sulfasalazine.
Sorry that you've had to join this terrible club of sufferers.
RA has taken away my normal life and I feel a lesser person now.
I saw a noticeable improvement in late August and September. But now have ongoing problems with specific joints especially following any kind of strain on them.
So it gets better after the treatment starts but I don't know if it stays better.
- darshin (male 46, married 2 kids)
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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010
Posts: 77
Location: Hampshire
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Hi John
Welcome to the forum which I have found to be really helpful with people that understand how we are feeling. I was diagnosed a year ago and before that had always been very active.
Take care Debs
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi John 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 'kidults' Abby 23, Ian and Jake 18, and Louis 17. We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with RA over 23 years ago and have since run the gauntlet of medication and had several surgical procedures along the way due to joint damage. Currently on Prednisolone, Methotrexate and Naproxen, (been on anti-tnf for 8 years but just stopped due to lack of efficacy, being assessed for Rituximab) and a wagon load of pain killers and other bits and pieces! But heyho... It is quite normal to feel low having been diagnosed with any chronic condition. However, these days RA isn't, for the main part, a life sentence. Gone are the days of severe joint damage and uncontrolled disease. Modern medicines can control the disease and once the right combination for you is found things should start to improve. Try not to dwell on the whys and wherefores, they do not provide answers nor do they change things. There is no cure but much is available to help you live a near normal life. I would suggest reading up as much as you can, NRAS have some very helpful publications you can request, use this forum to keep in touch with others with RA and if you are able, join a local NRAS group who will provide both support and information. Keep posting and reading John ... Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi John
I am Sheila aged 60 and diagnosed with RA 9 years ago. I am currently on methotrexate (mxt). I am so sorry you have been diagnosed with this awful condition. It is a big shock at first but you will feel better as you get used to the idea and your medication is sorted out. I do think that although the physical symptoms are dealt with immediately and efficiently most of the time, the emotional side of things are not dealt with at all. That is why you have done the right thing joining the forum. Not only will you get good advise, hear other peoples experiences and complaints but it is a great emotional support knowing that others have gone through what you are going through now. You didn't say whether or not you are on mxt yet and how you are doing physically.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hello John, and welcome to the forum, though I`m sorry you have just met the criteria for membership. I think we`ve all been where you are - I found the first few months after diagnosis were very "dark" indeed. There are so many drugs now, but it`s a slow and frustrating process to find the one, or the combination, that will work for you. I was lucky in that I have a very good GP, who kept me sane, and did his level best to get me through that early period. I`m not sure how long it takes - if ever - to come to terms with RA, but with good treatment, things will improve. I spent 18 months being unable to pick up and cuddle my little grandsons, which was soul-destroying, but four years down the line I can mange that now, thankfully - so there is hope. Take care, Kathleen C x
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi all Let me say first thank you to all of the good people who very kindly replyed to me posting my first mail.This would be the time to say I am 63 years of age and to be told I have Ra is a kick in the teeth as I was looking to get my open top merc and do the tour of this great country as I have only seem bits of it from the cab of a 44 tonne lorry. I am on mex and I seen the tales other people have on this forum it must be my lucky day as I have been great for a few months now with no side effects. I have been trying to lose weight as my doctor has told me but in doing so I seem to have fallen foul of the rules from the DLA in that I can now virtually walk (to coin an old saying it feels like I have a large brick in my shoe). I have been turned down twice and this time I have appealed and would love the chance to go to a tribunal and state my case of how I feel. In my trade union days I trianed on employment law and in the many cases I helped with we never lost one I was known as the beast to my company and of the members I helped from other companys and it felt good to be helping people. So this will not beat me and I will get to drive my open top merc and laugh at all the faceless men who decide who gets what up the revolution my sign will be from here on 
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Go John Go I'm all for such positivity.  Good luck with the appeal Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi John,
welcome.
think we can all relate to how you feel when diagnosed .. i lost half a stone in that week with the stress.
been diagnosed 18 months and with a very supportive Rheumatology Department i feel i am in a better place than at the beginning.
i've failed on Methotrexate and Hydroxy and have started on an Anti TFN Humira which has shown an improvement in the first month.
i try and not think ahead as i know this illness differs considerably from person to person. i take it day by day, i was partially disabled with Osteo in both knee's so i have been used to needing a wheelchair for distance.
i have found such a lot of information on the Forum and support when needed,
do keep posting and we will get to know you more.
Suzanne
P.S. I must have been typing my reply as you posted,
i have to say i lost a vast amount of weight took me a year but it did really help my knee's and to be honest i think i would be housebound now if i hadn't .. so it is well worth it. you can eat well and healthy and still not go hungry.
hope to hear that your car will be more than a dream one day .. keep positive.
we are all here to support you.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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A warm welcome from me John.
I was diagnosed in May 2008, still trying to accept it all, don't think I ever will.
I'm married with two grown up daughters and two grandchildren.
Good luck with your appeal.
Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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John
Welcome to the forum but sorry you have been diagnosed with RA. Yes it is a kick in the guts and you will go through a period of mourning. BUT there is life after RA. The options of medication are far and ranging. It is good that the Methotrexate is working for you.
The biggest piece of advice I can give you is to keep busy. Maybe physically might be a problem, but keep your mind busy. It will stop you dwelling on what is happening with your body.
I was diagnosed two and half years ago, have failed on many medications, had a total knee replacement in January and need the other one doing. I am working full time, three days at work and two days at home. I am sure that they only way I have coped with this awful disease and its ups and downs is to keep going to the best of my ability and to have something else to occupy my mind. Your road trip (in short bursts) sounds wonderful.
The DLA people need a good dose of RA to understand that this disease is very good at disguising itself. You can look fine on the outside but be awful inside. Yes you can walk but I expect your a dosed up on pain killers and gritting your teeth. Today could be a good day but in minutes, hours or days, this can change dramatically.
Good for you that you are appealing.
Keep us posted
Jackie
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hey John! Up the revolution eh?! I like your style :) I'm jenni, severe crappy ra. 35yrs old married with 3 children aged 16, 14 and 3. I'm currently in hospital after having knee surgery. Looking toward to more 'up the revolution' type encouragement :) how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi jenni Sorry to hear about your knee op I hope it works out for you, I suppose my reason for getting mad about the faceless people is because after a lifetime of fighting these people in the working environment they are still with us in our not to good days when we all need some help. And yes I do get angry at stupid questions on forms that you need a degree to fill in and the phone call from the faceless man that ask's you how far can you walk when you have spent hours trying to fill in the form I felt like saying look at the ruddy! form I think we are the the people they would like to forget about and as I feel ok at present I would like to shake a few of them keep fighting!!
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Rank: Member
Groups: Registered
Joined: 10/13/2011
Posts: 12
Location: oldham near manchester
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hi john it is very frustrating filling the forms in .like u say too many stupid questions and too many forms .i have 1 staring at me on table and just feel arghhhhhhhh another 1 ..... and as someone else has already said go john go .I was diagnosed about 10 years ago and too be honest didnt realise what RA was .i wasnt in pain just a swollen knuckle every now and then so didnt follow it up ......then about a year ago boy did i find out everyone gets a bit down when u think of it but it really does help chatting to others in same boat .chin up john and can i be your passenger on your trip woo hoo never been in open top car  ann xxx
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi Ann The ruddy forms do get you down when you hear of all the people who get caught on the fiddle and people who need the help have to fight all the way. I suppose you could say I was in the same boat as you when it come's to knowing how long you ave had RA when I had sore knee's and hand's all I did was take some pill's and get on with it but in the long run it gets to you ho well never mind. you have never been in a ragtop you do not know what you have missed sun ray's wind in your hair and great rock and roll music what a time keep the faith.
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