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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I am really confused about what exactly defines a flare up  . I developed severe symptoms of RA almost overnight during April and May 2011 which saw me forced to take 7 weeks off work. I could hardly move at all and was in agony at times (and I am not using that word flippantly). Since then I have had steroid treatment and the symptoms have calmed down but are still grumbling away. I seem to go up and down a lot. Sometimes I just have mild pain in my hands, feet and shoulders whereas at others I reach for the Tramadol as the pain becomes much worse. I have good days and bad days and within a day the mornings and night times are quite bad too. I think that obviously the early period was a severe flare but what about when I get a bad day. Is this a mini flare or not? As this is all new to me I'd really like to gain greater understanding of the terminology used when talking about RA, especially as I keep reading advice about taking action when you feel a flare coming on. I'd be very grateful for any wisdom from more experienced people than me who have RA.
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Naomi
I am afraid this is typical. You can be ok one day and feel like you have been hit by a truck another. How long they last varies. Unfortunately there is no set pattern. You may have a flare up that is over in a few days or weeks but that doesn't mean it will be like that with the next one. It doesn't matter how long you have had RA we are still all in the dark most of the time. Sometimes, if you feel particularly tired sometime, a bit fluey or down that might indicate the start of a flare up. As for being flippant. We all know when it comes to the pain, it is total agony. No-one will think you are exaggerating because we know you are not. I always used to think that there can be no worse pain than childbirth. I was wrong. At least you get something nice at the end and it is shortlived. I would call the pain of RA aggressive in it's truest sense. You can also have flare ups that are quite minor. The best thing to do, with this disease, is take each day as it comes. Do things when you can and rest when you can't and don't forget the most important thing is to pace yourself.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hello Naomi,
Sorry I haven't introduced myself or welcomed you before but things have been a tad hectic here in Cornwall, not a good thing for my RA but ultimately it will be, I think! Anyway enough of me.
Jenni, posted a really good thread on flares which should be easy enough to find. It really is THE definition and so, so identifiable.
Up and down seems par for the course I'm afraid especially since, as I recall, you're not yet under control? Sorry your disease not you, although in my case its often me that's uncontrollable as well as the disease! I've tried to analyse my ups and downs to death but still behave just as badly as my immune system and end up in bed. Its that old pacing yourself business I'm afraid. But sometimes there's no rhyme nor reason I can come up with and although frustrating just got to come to terms with it I'm afraid.
So have you started your MTX yet? Getting your disease under control is the first step to getting used to some sort of new normality but this takes time. I started mine last November, it kicked in after about 4 months I would say, and after a few tweaks with painkillers and anti-inflammatories I reckon I'm sort of on as even keel as its going to get for the mo. So its taken until now for me to start thinking that I'm getting to grips with how to work out this disease so I can work with it rather than against it, its a right old roller coaster I'm afraid.
I don't want to scare or upset you, I'm a plain speaking sort of girl and although its different for everyone the outlook is pretty good if you find a DMARD which works and with MTX the percentages are good. Hold on in there Naomi and try to go with the flow as much as you can.
Take care Sara
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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I've bumped Jenni's thread for you Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thank you all I will look for Jenny's thread on flares. I am due to attend the methotrexate clinic for the first time on Friday 16th September. I actually feel quite positive about it as I believe it's the correct next step to try out.
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010 Posts: 384
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Hi Naomi,
Totally agree with Sara, although I was only diagnosed May 2010 I have found by reading this site that it really affects us in different ways.
At the beginning the pain was at times unbearable, but once the MTX kicked in I felt so much better and now I can occasionally forget I even have RA, but it can rear its ugly head at times.
Last weekend went to a friends 50th anniversary and danced for most of the evening, but my word have I paid for it this week.
I remember I put a post such as yours on the site and someone said that you can't have a flare until its been under control.
Really hope you feel better soon.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello there,
Agree everything Sara has said. Everyone and every pain is so different. I hope that mtx will be the drug for you it certainly works as a 'gold' treatment if it suits you
Good luck with the clinic
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thanks everyone. I am starting to really understand the importance of 'pacing', partly from my experience over the last few months and also from what everyone has said on this site. It is quite frustrating trying to get this across to some other people though. I am finding that unless people are really receptive to what I say about fatigue or unless they have had personal experience of RA (themselves or close friend/family) they do not understand how desperately tired and in pain I can become and how imperative it is to rest and space out chores. I know that people on this site really understand though and that helps me to feel less isolated. I am writing this in the early hours as I have woken up in pain and feel really speedy too because of the steroids. I have a nice cup of camomile tea by my side and will take some max strength co-codamol at 3.30.....and then I will pray for some much needed sleep.
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Naomi, i agree it is hard to get others to understand about pacing i have had ra for 15 years and i still find it hard work at times.
Bevxx
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Rank: Newbie
Groups: Registered
Joined: 7/12/2011 Posts: 6
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Hi Naomi Flare ups are so different for us all I have had 25 years of RA and still get bad flare ups in time you will get to know which is the best way for you to deal with them, sometimes if you have a really bad one you just have to give in and have complete rest while you body recovers. Everyone has their own medication which they find is best for them its a bit like living with the enemy!!! but it makes the good days very precious. Good luck to you. NinaX
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Rank: Newbie
Groups: Registered
Joined: 7/12/2011 Posts: 6
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Hi Naomi Flare ups are so different for us all I have had 25 years of RA and still get bad flare ups in time you will get to know which is the best way for you to deal with them, sometimes if you have a really bad one you just have to give in and have complete rest while you body recovers. Everyone has their own medication which they find is best for them its a bit like living with the enemy!!! but it makes the good days very precious. Good luck to you. NinaX
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