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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Hi everyone. I'm Mairead but everyone calls me Maggie  Er, I'm not actually sure when I developed this disease as I've had a catalogue of weird illnesses and joint problems since about 1999. I had suspected Meniere's Disease then (idiopathic endolymphatic hydrops, or in layman's terms my inner ears are destroying themselves). It was confirmed last year around the same time as my RA symptoms started showing up bigtime. As MD can be caused by autoimmune diseases things are starting to make a little sense. Over the years I've had problems with my knees, wrists, hands, fingers, feet. Apart from the knees and wrists none of the problems lasted particularly long and even the knees and wrist problems seemed to go away by their own accord. Then 18 months ago I got hit with what I thought was either gout and/or dislocated toes. Over a few months I developed severe pain in my fingers and thumbs before it finally settled in my left hand. I also developed what they still think is an impingement in my right shoulder but I wonder .... To cut a long story short I was lucky to have a very good GP who decided the locum who'd advised me in no uncertain terms I didnt' have any symptoms of any kind of arthritis was an idiot and packed me off to an equally good consultant who diagnosed seronegative inflammatory arthritis fairly quickly - within 6 months. An experiment with sulfasalazine last year nearly killed me after I developed symptoms of Stevens-Johnsons syndrome (luckily I had the brains to stop taking it immediately) and I refused any medication for about 5 months. In the meantime the disease has now spread to my right hand and back to my left knee. For some reason it likes my left side more than my right. Now I'm 4 weeks into methotrexate and kind of getting used to the way my life is going to be from now on. I had about 6 months of quite severe depression and fear for the future. I'm lucky to have a very good husband who has been very supportive and fairly good employers. I'd hate to think what it would be like if I didn't. My life has changed although I don't let it dictate what I do or don't do. Some physical things I enjoy doing I simply can't do any more and some things I used to enjoy i haven't the brains, energy or interest. But I'm a fighter and when I was told by a consultant my Meniere's would destroy my balance I pretty much said that I'd fallen over plenty times when I was drunk so where's the difference? I've totally taken control in managing this disease and find medical practitioners much more open to discussion and less defensive when I challenge them armed with the knowledge I've gained about the disease and its treatments. So now here I am after attending a Workwise workshop recently and being relieved that I'm not alone. Nice to meet you all. I'm sure you've all been where Im about to go so bear with me while I give out and whine!! xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Maggie, I'm Lorna married for 28 years to my husband Ken, we have 3 daughters who are grown up now, the youngest being 16 years. Sorry to hear you have RA, you have certainly had a bad time of things. I was very ill in the beginning almost 3 years ago, I was on the triple therapy MTX, Sulph, Hydrox, and Folic acid. I no longer have the Sulph, I no longer need it, I am so much better now. I do still get aches if I do too much so I limit what I can do and I keep well. Welcome to the forum, looking forward to reading your postings. Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 176
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Hi Maggie, and welcome to the forum. You seem to have had a tough time getting the diagnosis. Don't apologise for whineing, we all do it every now and again. It is quite normal to fear for the future, but the more I learn, the more in control of the disease I feel. It seems to end up in a blancing act, of what I can still do, and recognising when to rest. Good luck with it all, and feel free to ask all questions that come to mind. There is alway some one to answer you.
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 51
Location: Blackburn, Lancashire
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Hi Maggie
My name is Lisa, aged 42 and I have had RA for 9 years, now have brittle bones as well. Sorry to hear that you have RA and that you certainly have had a tough time. Hopefully now your RA team will be able to sort out the medication combination you need so that you can keep things under control.
If you need to have a good old moan than this is the place to do it. We all understand what you are going though and it does help.
Lisa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Maggie,
Welcome to the forum!
I am 60 and have had RA for 9 years, now on mtx and humira.
Looking forward to getting to know you.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Maggie,
Welcome to the forum. I'm sure you will get lots of support and advice on here. Looking forward to seeing you post in future.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Maggie, and a big welcome to the forum. Now that you have found us all - keep posting! Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Maggie, welcome to the forum!!! sounds like you have really had a tough time, thank goodness for a sensible gp!! I saw 4 gps 9 times over 5 months, and was still told "its just osteoarthritis, learn tlo live with it" before finally getting one of them to send me for the RA factor test. The rest is history. I am 56 married to Roy with 2 adult sons 1 adult daughter and 1 17yr old daughter doing A levels. Am on triple therapy, mtx hydroxy and sulfa along with pregabalin for fibromyalgia. Looking forward to seeing more posts, and definitely come here to have a moan, thats what we are here for, to support and try to give a little advice x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Maggie welcome im Sophie 35 , you will find this forum very helpful x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Maggie
And a very warm welcome to the forum - but sad to hear you have RA and MD. That sounds really nasty.
Mtx has been my wonder drug and, having been confined to a wheelchair for 6 years, I can now walk short distances and even climb the stairs, which is wonderful. It does take time to "get into your sysem" though - so you have to be patient!!
I'm 66, married to Steve with one daughter, Lucy, great SIL and 2 super grandchildren aged 5 and 2.
Love
Jeanxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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And a warm welcome to the mad house from me here in W.Yorkshire! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Maggie,
Welcome, I'm a newbie as well only joined last week, just taken my fourth dose of MTX yesterday, took my first dose the day I was diagnosed, but think the RA started last July.
I'm 50 but often feel 100 maried with two teenage boys and a foster boy.
You will get all the support you need on this site everyone is so helpful and they don't mind if you moan.
Anne x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello Maggie and welcome, I'm Glenys, 56 had RA over 10 years now. I'm sorry that you have it too. You will find the Forum very friendly and a great help.
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Rank: Advanced Member Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Thanks everyone for the warm welcome and kind words.  I forgot to say I'm 45, married, no kids but a cheeky little cat called Pickle runs our lives. I'm a quality assurance/contract compliance officer for a charity in Birmingham so lucky for me all this rubbish doesn't affect me too much workwise. I also have pretty good employers (apart from a couple of unsympathetic managers)so I don't do too bad. I hear some horror stories so I know how lucky I am. xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 157 Location: TYNE AND WEAR
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Welcome to you Mairead, I'm Alison had RA for 4 years now....Look forward to reading your posts, Lots of helpful advice and people on this forum, take care, Alison xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Maggie,
Welcome!
MD is absolutely horrid- my dear friend has this and it was suppressed by a starnge chicnese herbalist and then by a pregnancy! She lost all hearing for a while in one ear but it has returned now.
MTX is the no1 med for RA currently- it is so well tried and tested and they will monitor you on it very carefully. I am sorry about the slz...many people diosagree with this one too.
I am married to the lovely Mark and we have five sweet children and a a new baby on the way which has caused huge joy and happiness! I have had RA since childhood so have gone through all my babies with it...
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Maggie Welcome Im Melly RA,since 17 now 38 recently diagnsoed sle lupus,fibromyglia. Im cat amd got 2 1 male inky oscar my soppy cuddly kittie,1 female sweetpea tabby the wild hunter. currently off mtx had eben on it 2 eyars stopped to try for child. on planequil. take care workwsie great heard alot about them hope very ueeful to you,so good your hubby so suportive. take care Melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Maggie I read your post with interest, what a time you have had! At last you have a firm diagnosis and hopefully the revised meds will bring you some comfort and release from the pain and distress the RA causes. I have been on Methotrexate for well over 10 years both on its own and in combination with other drugs. It has worked really well for me over the years. I'm Lyn, married to Mike with four children in various stages of education. We live in Lancashire. I was diagnosed with sero-negative RA 22 years ago after the birth of my first child. Since then I feel as though I have run the gamut of medications and a number of surgical procedures. I am currently on Enbrel, Prednisolone, Naproxen and a few other bits and pieces to keep things ticking over. Have just been taken off methotrexate (wiped out my neutrophil count) so waiting to see what happens next!! So pleased you have joined us. There is a wealth of information here and lots of friendly, knowledgeable folk. Look forward to getting to know you better. Take care, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 357
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Hi Maggie, Welcome to the forum, some wonderful people here. What a time you've had, but it's good to hear you've got a good GP and consultant to help. I think I may have been sat with you at the Brum Workwise Workshop :) I've had RA since I was 26, and it's now largely under control for the last few years on Enbrel (if only it had been around 15 years ago!) Can I also plug the Birmingham NRAS Group.. Our next meeting takes place on 24th June more details on www.brasg.org.uk where Angela Lown from FunkyArthur will be showing off some gadgets to help with everyday tasks. Best wishes Jo. 2012 Fundraising for the National Rheumatoid Arthritis Society (NRAS) http://uk.virginmoneygiving.com/RoboJo
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Rank: Advanced Member Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Hi Jo! I'm rubbish with names but never forget a face I'm hoping to come to the next Brum meeting. The charity I work for are also brokers for volunteering in Birmingham. We have a couple of projects at the moment working with people who are employed but on sick leave, people who are employed but need a change in career and people who have been unemployed for more than three months. We also have an exciting new project starting where people who are claiming incapacity benefit will be supported into volunteering opportunities and beyond. We aim to increase physical and mental wellbeing as well as giving people the skills and experience to find paid employment. The organisations we refer our clients to are all vetted and trained to make sure they can provide the additional support needed and we refer people on to further training and any other support they may need. The idea is to help those in most need, or with those who face the greatest challenges in gaining employment. Seeing how many people at the Workwise events were not working, having difficulties at work and/or needing to change roles but perhaps not having the skills/experience to do so made me wonder if we could help out in any way. We found that people who volunteered found their mental health increased dramatically - whether employed or unemployed - and self-esteem, self-confidence and happiness levels were far greater than when they started. On top of that 20% of the unemployed people we supported actually found jobs afterwards. It's only a 30 hour placement to be taken over 12 weeks so it's not too much of a burden. It's something I hope to bring up at the meeting and if people are interested in hearing more I'll get one of the project managers to come in and give a presentation
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