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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Everyone,
Hello from me, I am Lorna diagnosed 5 years ago now...... wow is it that long. As you have heard or experienced, RA is mind blowing when it first hits you, but it is NOT the end of the world although it feels like it at times. When It hit me 5 years ago I was literally bed ridden within 5 weeks. I was unable to do anything, to go from being fit and active to bed ridden was a real shock to the system. Almost every joint was affected except my knees. I had lost the use of my right arm, I could not turn my head, I had to be helped onto my feet I could not hold or pick up anything, my hands did not work, they were swollen and solid. My inflammation levels were very high and I was on a bucket load of pain killers and still in agony.
But you know what I am NO LONGER like that, I am well controlled now having been on the triple therapy, my consultant believes treating an aggressive disease with aggressive treatment is definitely the way forward. I am no longer in any pain or on any pain relief. I still take 2 of the 3 drugs I was given. I take 6 MTX once a week and Hydrox 1 each day along with a vitamin tablet And I do everything I did before and stop when I get tired.
So please do not give up hope, being positive is as important as any of the drugs which you are prescribed, you have to believe they will help you and they will. Keeping a diary is great I did and you see yourself getting better. I was very lucky to be diagnosed as quick as I was, plus my doctor was really on the ball. My consultant is lovely and very thorough.
I hope reading about myself gives hope to those newly diagnosed because I know all too well how bad things can be: my consultant put her hand on my arm when I saw her for the first time and told me I would not walk out of her room as bad as I had just walked in. After my appointment I was given steroid injections to help me move.
We have a get together in May so note in your diary to come down and meet all of us, its fun and a good laugh. We go for a weekend and its worth the journey, we come from Scotland, and I would not miss it now, I have been for the last two years along with my husband and am looking forward to next year.
A big hug from me to anyone who feels low at the moment, hang in there it does and will get easier.
Love to all Lorna xx Smile
I decided to re post here as I think it was lost in the other column. x
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Lorna,
Thanks for your positive post, glad you are feeling so much better now.
My RA has never been as bad as yours, although I was in quite a lot of pain when diagnosed earlier this year.
I'm on MTX and Hydroxychloroquine and although I still have aches and pains am much better than before.
I'm sure your post will be great reading to many of the newly diagnosed people on the site.
Thanks again
Mary
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Lorna - that's a great post, thank you so much for sharing. It's great to hear that the treatments do work well for many people, and that's my experience too. In my case RA crept up slowly over a couple of years and I was RA negative according to the GP's blood tests, and by the time I was diagnosed I was in pain and shuffling, but not bed-ridden. My consultant said exactly the same as you " ... told me I would not walk out of her room as bad as I had just walked in." ... and she was right. I had steroids and now take MTX and HDX and am pain-free everyday. I've slowed down a bit and rest when I need to but apart from that life is back to how it's always been, and now I feel so much in control of my own health because I have much more knowledge - and that's a good feeling! A very warm welcome to all who are newly diagnosed and feeling low - Sylvia Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Mary and Sylvia I am glad you liked my post, it's good to be able to try to re assure people, it is... very hard to begin with. It's nice to talk and share experiences with you both. I did not come on the forum for about 3 years I was so traumatised when first diagnosed I did not want to know what lay ahead. Once I started with the drug regime I learned all I could about RA. My eldest daughter is a Scientist in Norway and sends me lots of research she has found on RA. The triple therapy was researched by Professor Thomas Skogg from Sweden. My daughter attended his presentation at Oslo Uni to pass on knowledge of it to me. I used to be on the forum lots but with working and my garden taking up all my time I have not been on for a while. But I am back and happy to hear from you. I find this time of year hard as I don't like the cold, wet, dark days. Well the rain has stopped and I hope the sun finds it's way through the clouds to brighten today and spur me on to get my begonias stored.  Nice to hear from you both again, Take care Lorna xx
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Lorna - hope you enjoyed your garden today. The sun shone in Devon and the autumn colours look gorgeous - love to all - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Newbie
Groups: Registered
Joined: 10/2/2011
Posts: 9
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Hello Lorna, Thank you for your lovely positive approach to RA - I was diagnosed two years ago and experienced very similar to yourself. I am on weekly 20mg MTX injections and take four sulphasalazine daily - having been on prednisolone for two years I have been weaning off them for the past few months. I have often wanted to share "my healing journey" through RA but guess I felt a bit vulnerable in doing so. I don't feel like that anymore and want to share with others that there is light at the end of the tunnel from such a dibilitating disease. Before the onset of RA I had a small, professional business as an alternative therapist and practitioner - I would often exhibit at major Mind, Body, Spirit Events. Then I was struck down with RA and my life was changed, having to give up what I so loved doing, helping and being of service to others. Yet over the past two years I have been able to be of service in other ways, the gift being in that I created a new website to share my knowledge and wisdom with those that are looking for peace and stress relief in times of chaos. This also included me writing an article on illness and disability from a spiritual perspective - this is not based on any religion or cult I hasten to add, and the writing of it helped me and enabled me to look for the deeper meaning to my life and life purpose I suppose. The biggest challenges we all have to face in life is coming to terms with grief and loss - we all have had to experience these at some level coming to terms with the life we may have had before the onset of RA. Yet life does go on and it is different. I now have time to "smell the roses" and appreciate the smallest things, and understanding what really matters in life. I am taking the liberty of enclosing the link to said page for anyone that may be interested in a spiritual perspective on dis-ease - and no offence intended. http://www.lightmessenge...illness-and-disability/
Love and blessings, Linda x
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Rank: Member  Groups: Registered
Joined: 11/26/2012 Posts: 19
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Hello Lorna Thank you so much for your post it is definitely a morale booster. I was diagnosed 3 months ago and have just just with the mtx and hydroxy and have been so scared that in will lose my sense of.normality reading that you do what you did before but know when to rest it exactly what I need to read your postiive words make the future seem less daunting for a newly diagnosed ra member !  Love momique xx
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Monique,
Welcome to the forum, sorry I have not been on for a while but I have had a slipped disk and I have been in agony with it. Good news is I am on the mend at last, still got to take care though. Its been a few months now I do hope you are much brighter in yourself.
Take care Lorna x
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Lorna - a slipped disk must be so painful. I hope you're getting good treatment for it. Nice to have you back online - I don't visit quite as often as I used to - life just carries on and now I'm in remission, RA takes a bit of a back seat - but it's nice to catch up with friends here once in a while. So very best wishes for a speed recovery to your back pain - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Sylvia,
Nice to here from you, this really has been a long journey. I suffered pain with RA but it was nothing compared to the pain I felt with this slipped disk. It has affected my leg and foot but we have turned the corner now. I am no longer in pain and I am no longer walking with a limp thankgoodness.
I am glad you are in remission too, long may it be that way. I had not been on much either due to my back and working before that. Its nice to catch up again on the forum.
Take care
Lorna x
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Rank: Newbie  Groups: Registered
Joined: 3/11/2013 Posts: 7
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Hello, just been newly diagnosed and feel a bit PANTS!!! My mum had severe RA, sadly she passed away five years ago so I can't talk to her. My hubbie is marvelous, but I'm 36 used to running round after everyone, working hard. Hate feeling knackerd, achey, stiff and generally crap! I know as soon as treatment starts I'll feel better (once sorted out right meds).
I feel at the moment that people feel I'm faking, or it's just an ache what are you moaning about, think I need some me time to chill, look after myself and feel better. The only problem with that is that I can't have time off work at the moment, wish that I could shake this crappy feeling.
Any good positive suggestions?
Thank you
Sarahkat
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2013 Posts: 144 Location: Dumfries
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Hi Sarahkat
I was just officially diagnosed last Wednesday and I'm 40. I know where you are coming from about feeling a bit of a fraud as that is what I had been feeling too. It is such an unpredictable illness too as one day you can be fine and the next another part of the body is aching that hadn't ached before. I am sorry to hear about your mum xx My husband is pretty special too but I was always running around like a blue-arsed flea until your body just says it's time to stop and rest.
The only advice I can give you is if you are up to going out when it is a nice bright day and just takie in the sights and sounds of the birds singing. I also feel listening to music or reading is very relaxing too. It's a pity you cannot take time off work but you must put yourself first.
I just started on my meds last Wednesday and feel the steroids have helped reduce the swelling in my fingers already.
Please keep in touch and we can all help each other
Lisamcb xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi! You need time off, to rest and recharge. I've got severe ra, I'm 37 and am married with 3 children. So I know 'busy' but you must stop as you need to. 3 key bits of advice, listen to your body- you cannot 'push through it' with ra pain, get your team to refer to an occupational therapist and get advice with energy conservation and joint conservation, get to see the pain clinic too Posting on here is a help Several posters are on fb and twitter too Welcome Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Sarahkat, Sorry to hear you have RA but glad you have found the forum. RA is a mind blowing diagnoses but it does not stop there, getting on the right treatment is vital for a good outcome. Ask your Rhumy about the Triple Therapy that’s what I was started on and it has made a huge difference to me now. Keep a diary on how you feel each day and and note down different moods etc. Try to do something each day no matter how small to keep you in the driving seat not the RA. Listen to your body it will need lots of rest or fatigue will definitely plague you. I keep well now but still get beaten down with fatigue whenever I do too much. Do things that make you happy and try not to get stressed, you will adapt to different ways once you get used to your diagnoses. Give yourself time to do to this. Take care and thinking about you, Lorna x
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Rank: Newbie Groups: Registered
Joined: 3/11/2013 Posts: 7
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Thank you for the good positive news, its good to be able to reach out to others for their experiences. I grew up with RA being in my life as long as I can remember, my mum got it at 27. So it's always been there for someone else, then 5 years after her death to the day I get the diagnoses that deep down I knew I had. My sister and dad were trying to be positive saying that I won't have it, sis came to appotiment with me and was great support. I was and still am very annoyed with the bloomin timing!!! I looked after mum all those years, caring for her bless her x, then I had to have a hysterectomy!!! (2 years ago) so decided on new career to do something that I really wanted which is vet nursing, taken ages to get placement and finally got it. I think thats whats really worrying me, not being able to do it, but DR has said once things are sorted theres no reason I won't be able to carry on, just need to be aware of what I'm doing and rest when I can. Work has been fab, since found out another member of team has RA, so got another person to quiz!!
Thanks again for supportive posts, hope you're all doing well
Sarahkat
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Rank: Newbie
Groups: Registered
Joined: 4/4/2013
Posts: 7
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Thanks Lorna, just read your post and feeling better already.I was diagnosed yesterday after 18 months of being told i had tennis elbow and to get on with it. I can cope with the pain but am really struggling with the fatigue, everyone including my husband and my mother think i'm just bone idle even though i am still working full time.
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Everyone,
Sorry I have not been on for some time, but due to my slipped disk it put me back so much in my garden. I have been utterly bogged down trying to keep on top of it. Hello to Sarahkat and Lisamcb I hope this finds you both well. This sunshine must have played a big part in how you are all feeling. ( everyone loves the sunshine.)
I am much better but still have a nerve problem in my heel caused by the slipped disk. It causes me pain but I just have to take it easy and rest when its sore.
I see from another post Lisamcb you are in Dumfries, I am in Fife we could arrange to meet up sometime if you like, let me know if you would like to.
Hope this finds everyone in good spirits.
Lorna xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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A lovely post Lorna, so important to have positive moments with this disease xx
I was like you, practically bedridden at first and in such a lot of pain, crippled and sad. But that was before diagnosis and years later ~ so much better now - i was lucky, aggressive treatment helped me too, good days and bad over the years but a positive attitude is SO important xx We're all in this together and it's good we can help each other through xx
Hope your nerve problems subside in your heel Lorna xx
Hello to all ~ Liz xx
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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HI Liz,
So glad you liked my post, as you said it is so important to have a positive attitude. I see you were like me bedridden in pain and unable to do much at all. This must be one of the worse feelings to be that incapacitated and not know what was wrong. But as you know help is out there and it is more advanced than ever before. Hopefully there will be a ' cure ' soon.
My leg/foot is better but not as good as before, but acceptance makes such a leap forward. It's ok as long as I don't overdo things and rest when it hurts. It will never be as bad as it was before last Christmas. The pain was the worst I have ever experienced. Hope you are well.
Take care
Lorna xx
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