I'm new. Think I'm having my first RA flare.How long ... - NRAS

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I'm new. Think I'm having my first RA flare.How long does a flare last?

wineandlattes profile image
9 Replies

Hi. Im probably jumping the gun but i need to talk to someone, I haven't been properly diagnosed with RA yet, my first blood test was clear and now awaiting CCP result . I am also being tested for glandular fever, which if it is that then I am really fortunate and I can stop worrying about RA. GP says that if its not gf, even if CCP is clear she will refer me to a rheumatologist. After reading much info online, I believe that I am having a RA flare. Its been really frightening, I have been in so much pain for nearly three weeks. Pain first in neck, shoulders and back, then pain moved to arms, elbows, wrists and hands felt inflamed with a horrible fuzzy type of feeling. Arms bit better now but elbows hurt and wrists feel sprained. Now this week terrible pain in backs of knees, calf muscles and arches of feet and same swollen inflamed feeling. Can only walk a few steps with knees partially bent. Also felt fatigue, occ dizzy and my eyes sometimes hurt. Am taking ibuprofen. I know that I mustnt worry until I get the results next week, but its hard not to. I keep panicking about what's happening to me. Three weeks ago I was so active, heavy gardening and renovating our house, I completely overdone it. Could that have caused this? Last June, i hurt my neck badly whilst gardening and it has hurt on and off since then. I went to a physio who said it was 'mechanical' rather than muscular. Maybe that was related to this? My husband is being supportive but I still feel so alone. My legs feel a bit better today , do you think its going away, or will it return tomorrow?

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9 Replies

Seems to me that my psoriatic arthritis (similar in many ways to RA) really likes going for joints that have already been strained or slightly damaged.

If you have inflammatory arthritis, this could be the very worst time for you, with all the apprehension and without treatment other than ibuprofen. I've had only one major flare in 4 years - that's right - one! And that lasted way too long but began tailing off once I started a short course of steroids and then Methotrexate. I'm not sure how many people are lucky enough to have just one big flare, but I'm here to say it does happen!

Just hang on in there in hope .... there's a very good chance that effective treatment will make a big difference. Meanwhile, be as kind to yourself as you possibly can be - if you can get someone to spoil you rotten and listen patiently to the fears you're bound to have, that's ideal. There's a helpline on here too - just grasp any helping hand you can find during this tricky time.

If you can keep moving - gentle walking or swimming or something, you might find that helps, difficult as it can seem.

wineandlattes profile image
wineandlattes in reply to

Thankyou for replying, and for your advice. I think I just need to try and stay calm until I have a proper diagnosis. I didn't realise there were so many different types of arthritis. I guess the rheumatologist diagnoses what type people have. Hopefully this flare , or whatever it is, will end soon.

Jora profile image
Jora

I've got nothing intelligent to add what Postle2 has written below, except to say that I now how frightening it can feel. In answer to the question, though "How long does a flare last?" , my understanding is that it can be hours, days, weeks, months. The beast doesn't let on how long it will be at the beginning. My flares are usually a couple of weeks, but the pain and fatigue can fluctuate within hours. It is devilishly unpredictable.

Hang on in there and do ring the NRAS helpline if you feel it would help.

Jora

wineandlattes profile image
wineandlattes in reply to Jora

Yes, the unpredictability is horrible. I think my husband, and I, are having trouble understanding why one minute I feel a bit better and then two hours later I m lying on the sofa in pain and need help to hobble to the loo. Its not like anything i have ever experienced before. My heart goes out to everyone who's had to suffer this for years. I have got lots of good friends and family but they don't really understand how I'm feeling. I will ring the helpline next time I feel really low, I think it will help. Thankyou.

As Jo and Postle have said - it's the unknown that scares many of us most. When I was at your stage I was desperately hoping that it was a post viral arthritis (I had suffered acute gastroenteritis followed rapidly by Swine Flu - and then pushed myself far too hard to travel and teach before I was ready to).

GP took my rheumatoid factor and full blood count including inflammatory markers and said he would get back to me shortly (24 hours I think). So I spent two weeks thinking that this must just be post viral arthritis that was making me navigate stairs like a crab and sport basic shop bought wrist splints.

When the phone call came it was late one Thursday evening in early April, four years ago. In a way I was relieved. The shock came later after my GP had referred me straight away and put me on a disease modifying antirheumatic drug. I hadn't a clue really and just took the drug and ended up having a scary sunlight reaction to it. With hindsight he should probably have waited and given me a steroid shot - as he later did. Unfortnately this masked my RA symptoms for my first rheumy appointment.

So I've learned that it's best not to pre-empt anything - not to panic or push for treatment before you've been seen and assessed by a specialist. I had some bad flares of polyarthritis until it finally settled in my hands and wrists - 9 months after it started. Then methotrexate got it under control. It took about 8 months to stop mini flare ups.

Keep notes of symptoms day to day and try to photograph swollen joints, skin changes and rashes etc.

All autoimmune diseases flare and wain to an extent. Hoping yours isn't inflammatory arthritis of any kind of course but the very fact that your GP has taken your anti CCP and says he will refer you to a rheumy whatever the outcome is a very good start - shows you are in safe hands. Hope this helps a little.

Twitchy x

nomoreheels profile image
nomoreheels

Hiya wineandlattes, you've found a place where people understand how you are feeling so welcome & I hope we can help you feel not quite so fearful. You're in the position I guess most of were in the beginning, what the heck is going on & what can be done to take it away? I have no quick answer for you for where you are just now except to say believe me it will get better, you're in the worst place you'll probably ever be regarding how you're feeling, no positive diagnosis, not knowing what you face or need to fight against. Once you've seen your Rheumy & he's taken the time to explain fully what it is you have & how he intends treating it then, given a little time, you'll start to notice subtle changes, for the good that is! I'd advise you take along your husband with you, not only for support but to remember put your heads together afterwards to go over all you'll be told. It's difficult enough coping with a diagnosis but many of the words will be medically related & probably unfamiliar, not easy to remember with everything else swimming around in your head.

If you take a look at the NRAS website nras.org.uk it may help you work out what's going on, your husband may wish to as well to help him also understand why you are as you are, he'll be finding it as difficult as you not knowing how to help you for the best but it will get better, honestly it will.

If you have any questions don't hesitate to ask, even if they feel silly believe me I've wondered if anyone would understand what I mean at times & hey, they do!

wineandlattes profile image
wineandlattes in reply to nomoreheels

Thank you all, feels like I've been given a big hug. Feel a bit better today, more normal in myself, managed to get dressed and put on makeup! But legs painful, cant stand for more than 5 mins, have to keep sitting in bed with pillow under my knees. So bored. Was almost easier lying around last week when I felt so ill as just wanted to sleep all day. Gp has prescribed naproxen 500 strength. Not used to taking any medication, good for the pain but took one at weekend and it just knocked me out completely, scared me, didn't like how it made me feel. Gp said I can cut them in half. Should I persevere with them? The ibuprofen isn't taking pain away. How do you all manage with all the really strong meds?

nomoreheels profile image
nomoreheels in reply to wineandlattes

If the ibuprofen isn't helping but the naproxen is then you'd be better taking that but not both, halve the tablet if it helps. As you've not really needed anything before it may well make you feel woozy so just be careful, more aware really, but you're better with that than the pain of inflammation if you can cope with it. You may find after a few days your body's getting more used to it so you could if you wish try a full tablet but again be aware & best not to be driving after you've taken your dose if it's knocking you out.

If there's anything else, even if it's just a virtual hug just pop on & we'll do what we can to help. x :)

wineandlattes profile image
wineandlattes

Thank you x

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