Flare ups- is there a trigger?: Diagnosed with an... - NRAS

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Flare ups- is there a trigger?

26 Replies

Diagnosed with an aggressive RA last year and recently started on Simponi which worked absolute wonders, the last few days I have been so so tired and last night wakened to every single joint hurting again, almost like the first onset of this disease.

I am making the assumption that this is a "flare-up".

My question if so, is , how long do these typically last and is there anything that you have found that specifically causes it

Guess I just need some reassurance this morning

Katie

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26 Replies
wiliby profile image
wiliby

Hi Katy, It's so scary once you have the disease under control then your hit with a flare! although I have been good for nearly 2 years I have had 2 or 3 flares normally lasting no more than 2 days thankfully. One I was sure was caused by eating turkey! one by wine (but I can drink beer I have discovered!) and at the moment I have flaring and it is without a doubt caused by humidity, I'm willing the thunder and lightening to come to clear the air, it's in the distance at the moment. I'm not sure these are triggers but feels like it!

I have had one or 2 days where I thought oh no, here we go and by night time I'm totally fine again.

The dogs hiding now, thunder getting close :)

Hope you recover soon!

in reply to wiliby

Thank you so much....I am totally convinced this is what it is and will be right as rain in a few days

Katie

in reply to wiliby

Hi again, do you really think the humidity is a factor? Like you we have been having horrendous thunderstorms and certainly the humidity which normally is about 80% has gone way up now..... Might just keep a diary and see what happens

Hope the dog is not too scared....mine just look at me, make sure I am there and then go back to sleep

Katie

wiliby profile image
wiliby in reply to

Hiya, I think for me it's too much of a coincidence, we were in Fuerteventura last month which is a dry heat and I had no RA whatsoever, my RA is normally 90% under control but on holiday I woke up each morning completely normal, felt amazing. The year before we went to Portugal which didn't make any difference.

Think keeping a diary is a good idea and plan do that now, good idea thanks :)

Our thunder didn't come to much boooooo! still hot and humid. My dog's a drama queen!

fingers crossed this doesn't last much longer.

Thank you Debbie,

Was just a little panicked last night, fell asleep on the sofa as I was so exhausted and when I wakened every single joint just screamed at me....same today, however that is what pain meds are for. Spoke the Simponi nurse today...went through everything and definitely felt a whole load better and happier after that...this is just a blip and quite normal in the early stages. It will be fine... Thank you for your reply- makes me whole load happier knowing this will be away by the beginning of next week.

Katie xx

samjam profile image
samjam in reply to

Sometimes stress can cause a flare. You get into a circle of pain and the more you worry about the pain the worse it becomes. It took me a long time to come to terms with my flares as it was all doom and gloom. Now when I have a flare I go to bed and tell myself I will feel better tomorrow and find that providing I get a good night's sleep, which I appreciate is not always possible, when I wake up I generally feel a little better and am able to cope with what the day brings. On the days when I still feel bad I stay in bed longer.

in reply to samjam

Tank Samjam,

I am typically not a worrier and always try to stay positive. I am starting to think though that stress is a factor for me.....need to start looking at that..

Hope you are ok and this is not a day for staying in bed

Katie

I do often panic that I'll flare up but it never seems to happen like this for me. I did have a nasty period of a few weeks when I had a month off MTX and came off Hydroxy for good - and after 3 weeks my wrist suddenly became excruciating and my knuckles all swelled up and I couldn't turn my wrist at all. But I took Naproxen and it quietened down again after a few days. A few days after this I stopped taking the Naproxen and it came rudely back in my thumb and then a few days later in my elbow and shoulder - all on the right hand side. But then I went back on MTX and weaned off the Naproxen slowly and that's the last real pain I've had - that was in March. I put it all down to the fact that I was working really hard on stitching after a period of time off it.

However I do get very tired and unwell feeling just now and wake in the night with very sore feet and Achilles tendons and last night my wrists were achy and sore. I don't think this could be called a flare up yet but I am worrying I'm heading for one? It's like looking at a map and thinking you know where you are heading - only to find that you've missed it or that there's a new sign saying "flare up" round the corner I think? I always find something to blame as a trigger but ultimately I think there's often no rhyme or reason to why RA suddenly waves at us unpleasantly and unexpectedly. I hope yours goes away very soon Katie. Tilda x

in reply to

Thank you Tilda..laughing with you about your analogy about road signs....although I am still so very ore tonight, I am so hopeful that in a few days it will settle

You need to take as much care as you can....you are going through a bit of a tough spell just now

Katie x

Ha ha I think this came from our recent holiday in Cornwall - staying in the middle of a maze of tiny single track roads with very high hedges and depending for dear life on these old fashioned, wooden road signs with different Cornish names pointing in all directions! In Orkney you can always see where you are in daylight because there are no hedges or trees to block the view but we seemed to spend an awful lot of time toot-tooting round tight bends trying to get to unattainable places. X

earthwitch profile image
earthwitch

Weather changes can definitely help trigger flares in a whole lot of diseases - its not so much about the weather apparently (hot, cold, rain, sun), as the air pressure changes, - so this hot humid weather is not good. I think though there are as many causes of flares as there are people with arthritis, and length of time of disease flares can also be incredibly variable.. Lets just hope that this flare of yours is one of the short, relatively mild ones. Look after yourself, and don't push things.

Its probably a good idea to make a note when you flare, and what was happening at the time. That way eventually you might be able to put some kind of pattern on it and be able to predict (and avoid) it a bit. Its always useful to have a record of dates and severity of flares to tell the rheumatologist on your next visit too.

in reply to earthwitch

Thank you Earthwitch....time will tell I suppose. Up till now I have not believed the weather is a factor , and in Scotland we certainly tend to live with higher humidity than the rest of the UK,. I will keep a note however guess I am kinda hoping for complete remission. Yes I will take things easy although that is probably the hardest thing to do

Katie

oldtimer profile image
oldtimer

Although I think that humidity and changes in pressure affect the amount of the pain that I have, my flare-ups proper don't seem to have any rhyme or reason.

I had a bad flare starting on April 8th - just before i was due to go away with my grand-daughter for a few days - I thought it might be stress related, but it lasted until June 1st when it suddenly improved, but again when I was much more stressed about going away to Bulgaria for a dancing and singing week. i couldn't determine what might have caused the bad flare, or what had happened to make it go away. The consultant said it was the change of medication finally kicking in - but that had been increased at the beginning of February, so I don't think so!

After many years of this disease, I don't think I will ever understand it.

in reply to oldtimer

Thank old timer....think your last sentence says it all..smiling

Katie

Neonkitty profile image
Neonkitty

Stress always does it for me. Have had so much stress it has been bringing flare ups most weeks. Or just one continuous flare since February, due to RA not being brought under control by my first biologic. I am sure yours is a blip and maybe it is pressure/weather doing it to your joints as I can feel it in mine when it is due to rain and rains (who needs a weather App when I've got these crazy weather responsive joints!!!) When it is dry I am much better. Also, additives in food if I stray from my good eating, and red meat, chili and citrus. I dohope you're feeling back to normal very soon, Katie. xx

in reply to Neonkitty

Neonkitty, you actually may have just highlighted something......my work got incredibly busy with a tight deadline for a project....had not thought about that...time for a little reflection here.

Thank you

My diet is fairly healthy and always prepare food from the basics...never buy ready made, well rarely. Little red meat, much more fish and chicken always with lots of veg. Lots of water,but actually maybe when I am really busy I do not drink as much as I should.....starting to feel better, but then I have been off a few days

Maybe as OldTimer says, we may never understand this disease

Take care and hope you have a good day

Katie xx

Neonkitty profile image
Neonkitty in reply to

Just the way I hold myself and tense, tells me I can make it worse. I am calm in the outside but hold the tenseness in. I am switching to Humjra ASAP. Saw the rheumy today. Given it three months and no joy as such. Not much at all! Hope you soon back on track, Katie. ;-) xx

Neonkitty profile image
Neonkitty in reply to Neonkitty

Sorry, given Enbrel three months but no joy, but anyone reading this on early Enbrel don't despair. We are all different and respond differently.

in reply to Neonkitty

am getting there Katie....just so tired however the pain is reducing. Hope you can get sorted out very soon

xx

Grymalkyn profile image
Grymalkyn

Stress/fear always sets it off for me and set it off back in the beginning, in 1983, too. Just had another flare after being very worried about possibly being put onto Ritoxamab - possible things that happen to others with the infusions as well as side-effects. Am just getting over it now, it bgan on Wed night, but am still aching, shaking and getting through 2-3 nightdresses/night with sweats. I do flu-like symptoms with flares.

Sometimes over-use of the joints will set it off. Am also a weather-vane so low pressure can set it off too.

Grymalkyn

in reply to Grymalkyn

I don't really think I know what a flare is? I have had episodes of excruciating pain in a few closely related joints that generally goes after a day if I hit it with Naproxen - is this what you call a flare? If so mine have usually been random or to do with overworking my hands or my knees. On a couple of occasions I've found my fingers have gone white or blue and I've been chilled to the core and then the terrible fracture-like pain has come on - mainly during winter and a few times when I've got stupidly worked up about things.

I also have times of feeling as if my joints and skin have been injected with something burning and corrosive and there's a deep heat tingle in my hands and up my arms and thighs, calves and feet. And i feel very stiff. That's where I'm at tonight actually. Don't find out what my ESR is doing until tomorrow but these symptoms usually relate to a rise in inflammatory markers. But I only get odd flashes of throbbing pain with this and the triggers are usually changes in doses of RA drugs or uncontrolled RA with me - or so I think?

Are any of these what you mean by flare or am I not really getting it? Sorry if I'm appearing obtuse - I genuinely don't know if I have RA sometimes despite a firm rheumy diagnosis.

Tilda x

in reply to

Hey Tilda,

I have heard so many people here talk about flares...I have not been free from pain since September until I started on Anti-TNF...then almost overnight it all eased to the point where I would say I did not have pain, albeit helped with pain meds. Suddenly out of the blue last week I felt unwell and exhausted, slept for an hour or so and when I wakened realised that every single joint was hurting just as it was in the beginning. it has now eased and have made the assumption that this is what everyone calls a flare.

Hugs

Katie xx

in reply to

Hey Tilda,

I have heard so many people here talk about flares...I have not been free from pain since September until I started on Anti-TNF...then almost overnight it all eased to the point where I would say I did not have pain, albeit helped with pain meds. Suddenly out of the blue last week I felt unwell and exhausted, slept for an hour or so and when I wakened realised that every single joint was hurting just as it was in the beginning. it has now eased and have made the assumption that this is what everyone calls a flare.

Hugs

Katie xx

in reply to

Reading your description makes me think I don't really have RA like others do. I have only had extreme pain for periods that is so bad I couldn't walk, drive or function briefly. In fact twice it has been like this in my right wrist and I've actually thrown up - like being tortured. But these day long (or night long) episodes have all but vanished while I've been on MTX (I came off for a month in march and bam my wrist and knuckles were subjected to torture against and off for a few weeks until the MTX kicked back in!).

I think my RA must be quite mild mostly - yours sounds awful no wonder you panicked with this latest flare. I'm glad it seems to be abating for you now. Xx

Grymalkyn profile image
Grymalkyn in reply to

Yes, the burning sensation, chill, excruciating pain are all things that happen to me in a flare. We're all different though and the way RA hits one person is not necessarily the same as how it hits another. It can change over the years too. I've had it severely, in every joint, since 1982.

rheumatoidymummy profile image
rheumatoidymummy

I find stress sets me off - my last flare co-incided with my husband being ill and incapable so I had to take up the slack on the housework and childcare as well as working myself. All the extra workload plus a bucket load of worry over my husbands condition was enough to set me off! Fortunately I get very few flares,

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