Flare ups

[Bianchi7]

I’ve had mild ra in my fingers for a few years but since feb have had pains in my wrists, shoulders and now my right knee is swollen. Is it normal to have flare ups in multiple places? How long do they normally last ?

[Hidden]

RA can flit from one joint to another or attack multiple joints at any time . Flares can last for an hour,a day, a week or months. It’s so individual and unpredictable. If they last for a week or more and don’t respond to painkillers or anti inflammatories don’t leave it contact your Rheumy team. Sorry your suffering.

[Bianchi7 in reply to Hidden]

Thank you. I’ve been worried about it for a while now and felt helpless. It’s so nice to hear from other people, thank you for your empathy

[Hidden]

It varies, some have full body flare ups that can last between days to months. Others might have flare up in their hands, wrists and fingers but nowhere else. We can have any combination of joints , for any length of time. Sorry I can't be any more help.

[Bianchi7 in reply to Hidden]

Thank you, just responding has helped as it’s given me perspective.

[oldtimer]

Flare ups can involve almost anything from everywhere to one joint, or starting slow and building up to waking up unable to move....

[Bianchi7 in reply to oldtimer]

Thanks for sharing. I am trying to figure out if the pains are ra or if they are just more ‘old age’ aches and pains. I haven’t coped well when they all come at once. I guess I need to learn how to manage that

[HappyD34]

Hi, may I ask if you are on meds? I have a high RF , being monitored but not on meds. However I’ve noticed over past few weeks that the joints in my fingers are more stiff and tad painful and my big toe painful. I have no idea if it’s a flare or if it’s time for me to call my rhumy consultant, I really don’t want to start on meds and put more drugs into my system but reading replies it seems it’s best to start earlier 😩. Hope you get relief and keeping well

[Bianchi7 in reply to HappyD34]

Thanks for responding. Sorry to hear that you are in pain. I share your reluctance to start meds. My consultant put me on a low dose of hydroxychloroquine a few years back and said it would slow the spread. It’s hard to say if it has.

[HappyD34 in reply to Bianchi7]

Thanks for responding too 👍, I suppose the answer is you’ll never know but it may have been worse without the meds. Strangely enough that’s what my consultant offered me. Looks like we’re on this journey, we can’t cancel it, we can accept it but try not to let it wear us down. That’s what everyone on this site will help us do when our chips are down. Take good care and big thanks to all for the good advice. I’ll make the call 👍

[Bianchi7 in reply to HappyD34]

I think it’s reassuring to hear kind words and advice from people with similar experiences. Doesn’t feel quite so alone. Good luck x

[Hidden in reply to HappyD34]

I have had uncontrolled RA and at the beginning I was sure this disease would not get the better of me and would often just put up with it... learnt my lesson there... I realised I needed to take whatever medication that would work . I had 18 months of life passing me by feeling isolated because I was not mobile and the fatigue meant I couldn’t communicate with my family. Conversation was beyond me I lived in a fog. I would rather participate in life than just let it pass me by and medication for me allows me a life maybe not as good pre RA but worth living

[HappyD34 in reply to Hidden]

Thanks J1707 , I have taken everything on board, in fact I’m calling the rhumy nurses tomorrow, tried today and they only work tomorrow 😱 . I have been fooling myself thinking I can stall it but obviously very naively so taking next steps now. Thanks again and take care 👍

[Madmusiclover]

The only predictable thing about RA is it is unpredictable. It sounds like your disease is ‘progressing’. I refused meds for a while but 5 years of trial and error resulted in one that helps a lot (though not 100%). Personally I would seek help and accept meds are inevitable and necessary to prevent long term damage. Good luck.

[Bianchi7 in reply to Madmusiclover]

Thank you, yes I will try and get in touch with my consultant, thanks for your help

[Leics]

Unfortunately RA flares are very unpredictable they can as others have said be in one joint or several and last for days, weeks or even months. The one thing I would add is that you should contact your rheumy team they may ask you to have a blood test and check your inflammation levels which can be an indicator of disease activity. As you’re pretty new to the journey which unfortunately we are all on with you I wouldn’t leave it to go away they rarely do and it sounds as though you may have other joints joining the party. It isn’t a good idea to wait and see best to get some advice if nothing else and maybe although you’re reluctant to be on the medication you’ve been prescribed joint damage because of lack of treatment is never a good idea. Please don’t leave it and see what happens go and get some medical help. You may need a review of your medication if things are progressing. They may be able to help you short term I think almost 5 months of suffering is long enough don’t you ?

[Bianchi7 in reply to Leics]

Thank you, I have been putting it off but I think it’s got to the point where it’s getting to down so I need to do something out it. Thanks for the advice

[Brychni]

Hi Bianchi7 - I was diagnosed in March and also started on hydroxy. Like you it seems that my symptoms are mild compared to other people but I am about to start methotrexate soon. I am pretty certain that 'mild' is slightly misleading, it probably means that it's been caught early on and I think without medication it always progresses. It doesn't just affect the joints, but the heart, lungs oesophagus and other organs, blood vessels etc.

I get 'episodes' that I am beginning to notice are getting closer together and are becoming more predictable. Also, I have a low white blood cell count which is getting lower and rheum. nurse thinks it is because of the arthritis, which is in itself an indicator that it is not under control. I have intermittent pain in various joints, today it's my left shoulder, just on the tip as opposed to under the blade as it was a few weeks ago when I thought I was having a heart attack. Also my both elbows and knees although right side is much worse. Wrists are occasionally warm and achy but I haven't experienced any sever pain there yet apart from with certain movements, totally out of the blue I occasionally get an electric pain in a finger just by grabbing the gear stick. My jaw angles have been bad too, with it going into my right ear cartilage and keeping me awake. But again that was isolated.

A while ago I had what seemed like a proper flare: hot bruises on my legs, sore lumps under my skin, the classic swollen fingers ( I took loads of pics!) and feeling that fatigue - which is not really tiredness but like a flat battery sort of feeling!

I've also got issues with toes, feet. As J1707 says below it's all so unpredictable and difficult to pin down, and after a really nasty painful episode the relief kind of makes you forget.

BTW my diagnosis was made after seeing inflammation on ultrasound of my wrists which, at the time I had never had a problem with but it is a key area for diagnosis and trumps the blood tests. I think I was lucky to have the scan as people usually have to suffer a lot longer before being offered a scan.

Also, pain can be 'creeping': I will often feel a little ache and I'll ignore it then half an hour later I'm thinking about reaching for the naproxen...

I have been told to stop taking the sulfasalzine as it was making me feel really, really headachy. I had reduced it to 500mg and the nurse said just stop, at that dose it's doing nothing. So now I am still taking the 200mg hydroxyc (although that isn't doing anything either hence the sulfasalazine but I read somehwere that it helps other medications) and waiting for a chest xray and more blood tests which will probably take a week or so and so I will be without meds for a while and it will be interesting to see what happens...

It's an old thread, but if you read it I would be interested to see ow you have got on.

Best wishes

[Bianchi7 in reply to Brychni]

Thanks so much for such a detailed response. I wrote my post as I was feeling helpless and not knowing what was happening. I finally had a telephone consultation on Friday and my dr wants to change my medication. I do find it all very medication centric. His answer to all my questions was medication, medication, medication. I am trying to understand what is making it worse and what I can do about it. I suppose I’m pushing back on the medication when I should just take his advise.

I know exactly what you mean about he fatigue. I used to be a morning person and now I just don’t feel refreshed and rearing to go at the moment.

I’m glad you got an early diagnosis and hope the medication you’re about to start controls the pain and makes you feel better. Sending you my best wishes x

[Brychni]

Hi Bianchi7 - thanks for your reply. I hate to be the bearer of bad news but the reason that they go on about medication is that RD is disabling and deadly and they are trying to nip it in the bud and prevent inevitable and permanent damage not just to joints but heart and lungs.

I also couldn't get my head around it in the beginning but after a lot of reading and finally googling life expectancy with RD I finally understand just how nasty RD can be.

When the rheum. nurse called the other day I did say I felt methotrexate was overkill and that I was nowhere near in as much pain as other people and she said very bluntly that 'we don't want you to get to that point.'

I get really nasty migraines and cluster headaches and if RD is the underlying cause I will take anything to get rid of them! But, like you I am apprehensive. Sulfasalzine gave me daily headaches and I think it made me a bit depressed because I feel a bit happier since I stopped taking it.

what meds are you taking at the moment? x

[Bianchi7 in reply to Brychni]

Thanks for your pragmatism. I probably needed to hear that. I’m on hydroxi at the moment on a low dose. My consultant wants me to go onto another one which I have been pushing against but I probably just need to come to terms with it a bit better. I appreciate your wise words x

[Brychni]

It's me again - the harbinger of doom, but I feel forearmed is forewarned - check this out, tells it like it is

hopkinsarthritis.org/arthri....

I'm off for a run!!

[Hidden in reply to Brychni]

👍 RUN!!! I can’t move 😂😂

[Brychni in reply to Hidden]

I run veeeery slowly!

It's odd because a week ago I went for a run after not going for about a week and it felt as though I was flying, hardly broke a sweat and didn't feel any pain (apart from the usual). The next day I went again and almost collapsed after 5 minutes. I felt so sick, light headed and stiff everywhere and my fingers swelled up.

My family and I have been going to a pool in the river nearby for 'wild swimming' during the heatwave and I can only do about 20 strokes before feeling totally drained and without any strength. My husband had to drag me out over the rocks because I had no strength in my elbows to get myself out. I haven't been swimming for a while but it seems mad that my arms are so weak - can that really also be RD?

[Hidden in reply to Brychni]

It can . If our mobility is impaired over time we loose our muscle strength. I use to do body pump which helped but since lockdown there have been no class and boy do I feel my muscles have weakened . My consultant encourages weight baring exercise kinder on the joints.