hello, welcome to our forum!
Nice to meet you.

Try not to get stressed! I'm having a bad flare up at the moment following surgery and being off some medication. Due to see consultant week Friday.

When I was first diagnosed I went on amazon and ordered arthritis for beginers and a few other books, these are in my bedside drawer to read for info/or remind me of foods to eat or not!
Also I have free booklets from the hospital I have kept. Ra and gardening for example.

Lakeland kitchen shop/online is good for helping aids, I have electric can opener and a multi tool to open jars and help with ring pulls from cans.

It's learning to slow down and change the way you do things in your way. An example ikea blue bags are fantastic for putting washing in, either I chuck it down the stairs or my husband takes it down. Once washing is dry and folded up, instead of carrying it up it goes back in the blue bag. Sadly I can't carry anything up at the moment, so I get my hubby to take washing up ready for me to put away!

I can't bend my knees to bath anymore (miss the heat soaking away!) I shower with hot water warming my joints up.

If things are bad, I shop online - choose sainsbugs cheaper delivery slots!

If you feel the cold get a snuggle blanket, they have arms and are fab at keeping you toasty! Wheat bags are good to go on your shoulders/neck or hot water bottle!

Its been mentioned on here recently foam memory products, I haven't tried this to see if it really works I was looking at a mattress topper haven't seen any I like!

Do you work?if so have you been signed off sick?
NRAS have a helpline to call (details on web page)
Write down questions for your hospital appointments.

What medication are you on?

I'm recent 40 year old, had ra after having my lovely baby over 5 years ago. Joined nras May, starting to feel ok to talk about my ra.
When things are bad I feel humour helps, laughing at myself!

Have you had ra long before your diagnosed?

Take care
You are not alone x
Jane
Xxx

Hi
Welcome from me too.
I was diagnosed September 2010 and I take leflumonide.
I have found this forum great for advice and knowing that there are others who truly understand how we feel.
Take care Debs

Hi - and welcome to the forum (although I'm sorry that we had to meet this way through RA!!). I'm 54 and was diagnosed about 2 1/2 months ago - so definitely a "newbie". I've got a hubby and 4 teenage kids all living at home, so life is pretty busy most days and having RA is a total pain in the neck!!!!! Grrr!!!!!

Having said that, I'm on Methtrexate and hydroxychloroquin plus painkillers and relevant supplements and together they are definitely controlling the pain and stiffness. I still get really fatigued and have to rest most days, but I've come to accept that and have found that having a really good nap (at leat 2hrs) really does help a lot.

Do you have access to a nurse helpline at your hospital? If you do, it's worth ringing them and explaining that you're having problems - maybe they can tweak your meds. By the way, what are you on and when did you start? The MTX can take up to 3 months to take effect, so maybe if it's early days then it'll start to help shortly and it's a case of hanging on in there!

Best wishes - Sylvia

Hello all!

Sorry i didn't write much yesterday - never been on a forum before!

Im jenny, 28 and was diagnosed in May after being unwell since November last year. It took my doctors ages to refer me as i was apparently young (27 at the time of becoming ill), and also have Hypermobility syndrome so they were also thinking there was a link to that.

I still work, only do 4 days but sometimes thats hard to do. Im an activity coordinator, so the jobs quite demanding and on the go. But have very supportive collegues :)

Im on methatrexate, and Lodine daily. I have a review on the 14th. Id been doing well on the methatrexate, took steroids for the first 5 weeks with it (which as you know has horrible side effects, so glad to be of them!) I started on the Methotrexate pretty much straight away at 10mg, and been on 12.5mg the last month.

Id been doing ok until last Friday (well some pain but i guess im never gonna be pain free) where i was in so much pain and have been since then. So tired to. Went to my doc on Monday for advice on how to deal with the flare and she thought it was to do with the fact that i was also run down with a virus that had been lingering for a few weeks, so put me on antiboitics. Tuesday night i had a bad allergic reaction to them, so back to the docs yesterday who put me on tramadol which still hasn't eased it at all.

Not getting stressed by it, as i take things in my stride but just want to know what i'm supposed to do during a flare, or is it a case of different things work for different people?

Its so great to talk to people who understand the pain we all go through. I do have a great network of friends, parents and boyfriend, who all want to help but sometimes just cant give me the answers i need if you get what i mean.

One thing i have learnt is that 2 of my biggest personality trates of being stubborn and impulsive don't nessasarily work with RA! But having the positive outlook on life i have does :)

thank you all again

Jenny

Hi Jenny - thanks for posting back with further info. You sound as if your attitude is brilliant - even the stubborness and impulsiveness can help and being positive is a must.

I echo Naomi's post - try and rest while pain is bad - you probably can't work your way out of it. And all the advice I've read says avoid too much exercise during a flare. Having said that, sometimes meds can help - when you say "doctor" do you mean your GP? Have you tried to talking to the rheumy dept - do they have a nurse-led helpline? It could be that you need some specialist advice in handling the flare. I know that my GP doesn't like to change any of my RA meds, although he's happy to twiddle with the other bits n bobs!

Are you having regular blood tests? I'm not very experienced and I'm still on weekly ones, soon to reduce to fortnightly - but I assume they might highlight if inflammation is up (can somebody correct me if I'm wrong on this one?).

Best of luck, and enjoy the Olympics - Sylvia

I dont take the DAS or paperwork to fill in as I always feel its asking too much, as it is the appointment is rushed, and its hard to remember everything. I do write stuff down to ask, but feel stupid getting out my paper to ask questions, so I forget!!
My nurse who takes the bloods doesnt even fill in my mtx booklet, I have asked her and she says she will do it next time, but it never happens. She is quite intimidating, and can be very rude to some patients.

As for holidays I can't help as we just go to the Isle of Wight, so don't really have problems. I hope you have a wonderful holiday, just try not to overdo it if you can, it will be hard with all thats going on though

Jenny

Hello and welcome to the forum but sorry you had to be diagnosed with RA to find us.

You sound a very determined lady and if there is one piece of advice I can give you, it is to stand your ground with your illness. The medical profession is there to look after you. You should never feel a nuisance and if things don't happen then make a fuss and get them happening. When you are in pain in bed and feeling miserable, the medical profession are not going to be a home worrying about you.

I was diagnosed three years ago and the first twelve months was full of bewilderment and dark days. It took a good twelve months to get my symptoms under some sort of control. I am afraid it is a steep learning curve with RA.

However, the good news is that this forum is a god send. I have learnt so much about RA from the people who have been there and got the t-shirt ten times over.

The biggest thing I had to come to terms with was changing my way of life. I worked five days a week, ran a house, looked after a Husband and teenager and ran around like a lunatic in my spare time trying to fit everything in. From diagnosis all that changed. I now work three days at work and the two days inbetween I work from home. The Husband and teenager have had to learn how to do housework, cooking, shopping etc. My spare time is now taken up with sitting hobbies which keep my mind occupied as well as my hands (card making and cross stitch) and days out are limited to once or twice a month shopping with teenage daughter (which is a task in itself ) or going on a day trip. I have to make sure I have plenty of rest either side of the days out and then I can cope.

The main goal of anyone with RA is to do a little then rest. On your holiday in Florida you are going to have to pace yourself and think beforehand what energy it is going to take to do a certain thing. Maybe split it down into half days instead of full days and get plenty of rest in between each activity. After all said and done we all are supposed to go on holiday for a rest, but normally come back and have to have a rest to get over the holiday. It is all about pacing.

You are going to have to give your medication and pain killers time to work. It is a question of taking it regularly and building it up in your system. Don't leave a dose off because you feel ok. This is when it will dip and then will take longer for you to get the pain under control. Take the pain killers even if you don't think you need them for a good period of time. You can ease off them when you body has had a rest from the pain. Pain as you know can be very tiring and depressing.

My life has changed incredibly since I was diagnosed but although things may be different, I have good quality of life.

Take care and keep posting.

Jackie
xx

Hi Jenny - I keep my booklet filled in and once my GP gave me a printout of all the results and other times I have rung the rheumy nurse and she gives me details over the phone. They always encourage us to take responsibility for as much as we can and I feel that keeping track of my blood results is key part of that so I'm never embarrassed to ask.

Re the holiday, my recomendation is to get some hiking poles and a little tripod seat. I use my sticks whenever I have to walk far, and they really help to walk briskly and with less effort than normally. I get far less tired when I use them and my feet hurt much less. I find that by using 2 poles I walk evenly without limping and so that is easier on my back and knees. At first I was embarrassed about them but I've now come to the view that I need a bit of help but I'm not useless and using the poles means I am in control and not a victim! After all, hiking poles are designed for fit people to help them carry heavy backpacks across rough terrain, so it's perfectly OK for me to use them when striding around the sights! I also get my hubby to carry a lightweight tripod seat and that is so brilliant when standing in queues - well I sit in queues now and am very comfortable!!!!! The seat means that I can sit whenever I want to, hopefully BEFORE I reach the point of exhaustion, and never have to keep on the lookout for public seats which are never just where you need them or are occupied by kids or pensioners! Again it's a case of me being in control! The airlines are also very good if you're slightly less mobile - I have no problems taking the sticks and seat on as hand luggage, so they are handy for the endless walk through the airport!!

Basically my view nowadays is that I have to take rest frequently and whenever I need to, and that way my family have a better time with me being less grumpy - I'm may not be as quick as I used to be, but I'm still good company and we all have fun together and that's what counts.

I'm sure you'll have a great time but do make sure you plan how to get rest - you'll feel so much better if you do. Have a wonderful time and let us know all the crazy stuff you get up to!!

Sylvia x

Another random thought, do any of you have those nights where you just cant sleep from pain?

I was like that last night, finally fell asleep about 6am. Just wondered do you get up out of bed when you feel like that. and try and distract your self from the pain? Or do you stay in bed? Usually i get up and go on my laptop and google random things, but it decided to die on me a couple of weeks ago. Currently having to use my boyfriends 'mac'. So i stayed in bed last night, which annoyed me more hearing my boyfriend sleep when i couldn't!! :)

Hi Jenny - sorry to hear you're not sleeping on top of everything else, and of course lack of sleep will add to the pain and make it even harder to deal with the fatigue. I don't often have trouble sleeping, but when I do it's usually because my mind is in overdrive worrying about stuff, so I get up and watch tv. I've generally got a few programs recorded and I find that sufficiently distracting to ease my worries and let me relax and eventually sleep.

Good luck with your appt - it's soon isn't it?

Sylvia