Do "flares"get worse over time?: Morning y'all. My... - NRAS

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Do "flares"get worse over time?

kellymomcars profile image
30 Replies

Morning y'all. My third year since diagnosis with PsA, and having a rough time. I've been doing so very well on Rynvoq so I was caught off guard last night when I felt like I was shutting down. I made dinner and crawled off to bed. Everything hurts this morning. My fingers are burning, my knees and hips are sore. Even my eyes are burning (I've been told this is due to inflammation too).

I thought I had flares before,but this is a whole new level...

So, my friends, do these flares only get worse with time?

Luckily, I decided to take the morning off from work (since we own the place I have that power 😉). Got my coffee, came outside to watch the bees, and thought of you all.

30 Replies
Sunshinereturns profile image
Sunshinereturns

Sorry I have no answer for you but awaiting replies with interest. I’m one year in. On my fourth flare and each one worse and last until I get a steroid and each time we up my medication. I just want to get to a controlled state. Steroid yesterday so hoping I’ll get a lovely couple of well months. Thinking of you and sending coping vibes.

kellymomcars profile image
kellymomcars in reply to Sunshinereturns

Hoping you have a couple of well months, too! The first year was such a roller-coaster -- trying to learn what's going on and feeling so bad and a little scared most of the time...

Deeb1764 profile image
Deeb1764

Mmmm for me I am weather based with flares as I have Fibro with the RA and Reynauds. So last night a real heavy downpour and high winds and I was up most of last night in pain and this morning hands and joints not feeling happy at all. The humidity here is mad today already.So it could be to do with weather maybe as I am not too sure where in US based but maybe track whether you get a bad flare on certain type of weather days.

I also feel my body does a thump back at me to remind me I have RA there is no rhyme or reason to this but I get some ongoing flares but then out of nowhere a really bad flare kicks in.

Some people say certain foods trigger a bad flare too.

I feel it is point the finger in the air and see what sticks on some days as there are so many possibilities for flares.

Have a lovely be kind to yourself day and see others feedback too and something might make you think this is what did it!.

kellymomcars profile image
kellymomcars in reply to Deeb1764

Well, I'm based in Texas close to Houston. So.... weather is hot a humid 9 months out of the year (especially this year). I've never heard of food triggers -- I'll have to pay more attention.

bpeal1 profile image
bpeal1

I have had RA (rather than PsA -but I assume they are similar in respect of flares) for 15 years. During that time flares have varied greatly both in severity and the length they last.

kellymomcars profile image
kellymomcars in reply to bpeal1

So at least it doesn't look like they just get worse and worse -- up and down more like

Hey 👋

Sorry to read you are in a flare, I've had RA just over 2 years and I have absolutely no idea whats going on!

Some flares are worse than others, last longer than others and i can't work out what triggers some of them!

Last month I went upstairs something happened in my ankle and I couldn't get back down, next day it was fine 🤷‍♀️

Inflammatory arthritis is a fickle thing,glad you've taken a rest from work and I hope it passes quickly. Plug that heat pad 👍

kellymomcars profile image
kellymomcars in reply to Marionfromhappydays

Shoot, going outside at 7:30 in the morning is like walking into a body wrapping heating pad where I live. Actually, it's not too bad and feels kinda comforting until about 9:00.

This was one of the worse ones yet. Hoping I don't have another for a while

smilelines profile image
smilelines in reply to Marionfromhappydays

I can be walking along and suddenly I get a sharp pain in my ankle for absolutely no reason. It hurts so much I cannot walk on it. Then for no reason it gets better . This sudden sharp pain happens so often that I am losing confidence in stepping. Is that what yours is like?

Marionfromhappydays profile image
Marionfromhappydays in reply to smilelines

Yes exactly like that, boom out of nowhere intense pain and it starts swelling. Normally later or next day its gone.It does definitely affect your confidence doesn't it. I was thinking of getting a fold up walking stick to put in my bag when I go out just in case

smilelines profile image
smilelines in reply to Marionfromhappydays

I bet when I tell my GP and rheumatologist they will just shrug and say they don’t know why this happens. I tried a cane last time and honestly it didn’t help. It just hurts too much. I had to sit down in the middle of the sidewalk.,

Marionfromhappydays profile image
Marionfromhappydays in reply to smilelines

Yes they don't seem to be bothered do they.

Yeah I think the idea of taking a collapsible in my head is probably to provide some psychological help as like you say its SO painful I cant walk on it.

Wonder what causes it to act so suddenly, bizarre x

holly-willow profile image
holly-willow

I wish I knew the answer. I am feeling so dreadful with pain just now that I honestly don’t know what to do with myself. I had no sleep until after 6am this morning & now I am awake & in severe pain again. It has got so that I can’t do anything & every movement causes pain. I am on a high level of pain killers & have been told there is nothing else that I can be given. Life doesn’t hold much to look forward to. My husband has to dress & undress me & help me to have a bath. I can’t even make a cup of tea now. I was diagnosed with inflammatory arthritis 10 years ago but am sure I had it for years before that. I used to think it was bad years ago but I had no idea of how bad it was going to get. No one seems to understand how bad the pain of arthritis can be. Sorry for the long ramble.

kellymomcars profile image
kellymomcars in reply to holly-willow

Oh Holly, I'm so sorry to hear about your experiences. I do notice when I have a flare ( even mildly), I get all blubbery with my husband and just thank him for his understanding and help. My head plays messages about what a pain in the a** I must be for him -- and he just tells me how much he loves me. I am so grateful for his love and support. No, he doesn't understand how this messes with the brain and body, but I'm grateful for y'all. Here's where I get that support.

oldtimer2 profile image
oldtimer2

In my long experience of Rheumatoid Arthritis my flares have varied widely. Sometimes just affecting a few joints and not being too severe, to affecting many joints and being so bad they feel as if they are exploding. I had not quite realised how limiting they were until I recently when I haven't had one since November (now on adalumimab). It's wonderful!

kellymomcars profile image
kellymomcars in reply to oldtimer2

Almost a year without a flare ... let's not jinx it by talking about it! That's great news!

AR50cyclist profile image
AR50cyclist

Hey there. It’s rubbish isn’t it? I’ve had RA 4 years now, seem to get flares 2-3 times a year usually linked to viral infections or vaccines. I’ve had Covid twice and 4-5 wks after it all flares up. Like others on here at the weekend it was so bad that I had no sleep, had to get husband to dress me and brush my hair!! It made me wonder how people on their own cope?? I had to go to work as there were no other staff, luckily I have very supportive colleagues so it was bearable and I did as little as possible. A few days into steroids now and feeling a lot better, doing housework with wrist supports on. I’m determined not to let it spoil my life but the pain is very limiting at times. Hope you feel better soon. It helps reading other peoples stories on here. Xx

kellymomcars profile image
kellymomcars in reply to AR50cyclist

Interesting that it's may be attached to virus or vaccines. I also just got over Covid (started 6 weeks ago). I ended up going to work at 9:30, and being around these great folks helps me to keep my mind engaged on anything other than me. (I'm actually quite bored thinking about me and my body all the time)

Bluegolf1975 profile image
Bluegolf1975

Hey Sorry to read you are having a flare up. It really sucks. I’ve had RA for 3 years now and get Varying issues with my RA but generally during the Summer I get little pain. But I do struggle with fatigue I hope you feel better soon. Ben

kellymomcars profile image
kellymomcars in reply to Bluegolf1975

Morning Ben. You know, I personally think the fatigue is the hardest to explain and cope with sometimes.

Bluegolf1975 profile image
Bluegolf1975 in reply to kellymomcars

Amen to that

Angjoplin profile image
Angjoplin

I've had RA for over 20 years. I find flares are generally not as bad now as in the early days. This is because I now recognise the signs and know when to stop and rest. It's a learning process and everyone is different. For example I have my fitbit set to go off at 8000 steps so I know to take it easy. I know if I get a cold to not make plans the week after because I'm at risk of a flare. With some people it's certain foods, I've not found that to be the case for me. Over time you will learn your own triggers and be able to manage them.

kellymomcars profile image
kellymomcars in reply to Angjoplin

I think you are on to something. I don't know what the triggers are yet, but coping (mostly resting) and letting my husband know that this is a flare (and nothing but a flare) helped tremendously this time. It's like "I know what this is, be helpful please, and this will pass quicker" worked.

Sunshinereturns profile image
Sunshinereturns

This is all really helpful. So much to learn. I second vaccines bringing on flares plus staying out late does it for me for some reason. It’s a journey to learning your own triggers I guess. Love the message saying the flares improve as your knowledge and response improves. Here’s hoping for us all.

kellymomcars profile image
kellymomcars in reply to Sunshinereturns

And there's comfort in knowing that these flares are just part of our journey -- nothing to get excited about.

I have had RA for 21 years and gradually my RA flares developed to a point when all of my body would just seize up making it impossible to continue without steroid injections and painkillers whilst waiting for the Biologic self injections to arrive and then to begin to work. I am currently on Orencia self injection once weekly and this worked for me 8th week in with no extra pain relief. It all depends on the individual - there is no automatic rule of thumb - so no way of knowing what you will experience. I do hope your flares do not increase and am sure your self awareness of how you are suffering will tell you when you need extra help . Best wishes.

kellymomcars profile image
kellymomcars in reply to

Oh gosh, I sure hope you have found your new fix in Orencia, and that it works along time for you... Best wishes to you, too.

pauluk60 profile image
pauluk60

hi kelly i have stopped going to bed to stop pain/flare just seems to be worse when i do go to bed and then have to take pain killers all day to get going trouble is i have to go when leg swells to get it down catch 22 anyone else do same

kellymomcars profile image
kellymomcars in reply to pauluk60

Morning Paul. Is it something like this for you..? I lay down on my right side, and my hip and shoulder starts to hurt. Rolling to the left does absolutely nothing but make my left hip and shoulder hurt. And my hands start to go numb from either side. If I lay on my back, my toes and calves start to cramp, so that's no good. And the neuropathy buzzing starts in when I finally get quiet -- feet and legs mostly, and some nights all the way up the back of my head. It's a wonder we get any sleep. My mother, who is 86 and has PsA sleeps in a sleep chair now, and that has helped her a lot.

pauluk60 profile image
pauluk60 in reply to kellymomcars

hiya kelly no trouble in the night except chest which is another mystery its when i try to get out of bed its cruel to say the least and it does not go away easy other day pain killers all day over did it but it worked but if sleep in chair not as bad as that wow you and mam going through it hope you get help

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