I am new here and relatively new to the RA experience. I was diagnosed with Seropositive RA in April this year, having had symptoms for around a year previously. I currently take Methotrexate, Hydroxychloroquine & Sulfasalazine and I'm interested in hearing about other people's experiences of flares.
It’s still early days for me in terms of treatment, and pain for me is localised in my wrists and elbows, sometimes my ankles. I don’t get stiffness so much, it’s just the awful, burning pain, so on bad days I can’t, for example, hold a toothbrush, do up buttons, grasp a cup of tea and a million other things.
I was wondering how people experience flares, in terms of whether they have any warning signs, whether pain is localised to problem joints or is more widespread, whether a flare correlates with higher levels of fatigue etc, and how long they might last for you? I realise everyone is different, but I am not sure if what I think may be a flare is a flare or, whether it's a case of the disease not being well managed yet.
As an example, my pain levels are pretty low after a steroid injection and I feel pretty good overall for up to 4 weeks. But in the intervening months the pain in my wrists can hit really high levels for a 2-4 weeks, when I also get what my husband calls my KOs - basically the fatigue is so strong I will just pass out on the sofa at about 5pm, I do not wake up when he says my name (sometimes quite loudly!), and if I do make it to bed I sleep solidly for 10-12 hours. I am out cold and feel hungover the next day. This is repeated the next day, and the next, with the episodes lasting about 2-4 weeks. Then I am back to feeling a bit rubbish but not too bad, and able to function reasonably well - until the next 'flare' happens. I really struggle to do even the school run at these times, but I have no other options.
Can anyone identify with this pattern, or tell me about how flares affect them? I have tried getting advice from the Rheumatology Nurse advice line, but the voice message constantly says they are busy and you can't leave a message for them. I see the consultant just before Christmas, but in the meantime I would really value hearing about your experiences.
Thanks in advance, and sorry the post is so long!
Jo
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JoWa
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JoWa you will see many replies and many different aspects of flares so not one of us seems the same but might have a bit of this and that and a dollop of something else. First told July had RD and seropositive and now on MTX and pregablin vits and co codamol.
At moment nausea and diarrhoea with MTX but flares for me usually hands wrists and shouders and elbows. Knees on and off depending what my body throws at me.
I am learning stress and RD don't mix well.
I have learnt I can sleep for the UK or just pass out as per you. My hubby finds it funny as I can be wide awake and a brain fog fatigue moment kicks in and I am GONE.
I keep a diary as every day seems different and for my next consult I know this will help.
Great site this, as we all have good days and bad days in pain and mind set but here people get what you might be talking about.
I still not quite understanding flare but believe I will see a difference when I get a calmer week or two ..........
Hi Jo, welcome to this community though sorry you’ve also been diagnosed with this disease.
After four years of strongly positive anti-CCP Rheumatoid Arthritis (diagnosed Dec 2015 after being totally floored by crippling pain in all my joints in the few months from July 2015), I still don’t know the difference between a true flare and simply uncontrolled disease activity.
I know my body is in increased pain when drugs are not effective; when I’m attempting to do too much even though disease might be subdued (for short periods, as it has been); when I forget to pace myself, ensuring adequate rest alternating with activity; when stress hits me hard.
I don’t get stiffness much either, just horrendous pain and fatigue. My first experience of disease subdued was summer 2016 and then there was much stiffness all over which I reckoned was part of the aftermath of RA attacks. So I have taken turmeric curcumin along with boswellia capsules ever since; good studies have shown that to be as good as Celocoxib (NSAID). So I cut out that drug and Omeprazole.
We each have different experiences with RA but can pick up useful tips or have the occasional great insight from another here.
You probably know that getting RA activity ‘controlled’ with DMARDs takes around 12 weeks, perhaps 16.
You have been a cocktail that could well be very effective; that’s the recommended aggressive treatment approach that is believed to get earlier drug induced remission and prevent disease activity leading to damage.
I hope some of that helps you make some sense of coping and the unpredictability of RA.
Best of luck with your treatment plan.
Hi Jo and welcome. This is a great site and someone can help what ever the question....
Flares are very individual although we all share similar symptoms.
For me a flare could just be incredible fatigue and totally disabling. This could last for months as a symptom on its on or along side stiffness that includes joint and tendons with minimal flexibility and swelling or I get flash flares where I’m fine and from nowhere bang!!!! I hit a brick wall barely move and fatigued and I just have to stop and sleep then 1/2 hours later absolutely fine again. What sets it off?? Sudden change in temperature I get pain in my joints even in my sleep. Humidity causes no end of problems my body likes the cooler weather. Physically over doing things eg walking too far or coding housework. I now pace myself... Clean the kitchen floor then rest clean the bathroom and rest. Nothing else for the day and then hoover the next day and the biggie is STRESS .These things I know can set me off but then for no reason I get a flare. This is me but everyone is different and just when you think you have the upper hand RD throws you a curveball 🤷♀️
It’s not all doom and gloom some people do really well. It’s about getting the right drugs it trial and error.
yes, stress, processed foods, hot humid weather. I too can be ok one minute then so overcome with fatigue the next I have to stop and sleep for 1/2 hour..
There is no norm, no specific pattern. My own flares vary. Sometimes I would just be profoundly fatigued with no pain or other indication. My flares tend to start with a slow burn, joint begins to feel warm and a bit tender, then gradually builds up and it does the same when it goes, just a gradual relief.
If you're feeling that bad, your medication is not working adequately and you will hopefully be moving up to a biologic or something stronger.
I had a fabulous year up until September this year. Previously I was taking mtx, sulfasalazine and Pred and had burning pain constantly so I was put on biologics and stopped steroids. Year was great.
Then bam! Flare. Not the burning pain, but loss of flexibility in my knees, plus pain and loss of strength in my legs and could barely put my left foot on the floor and was clinging on to walls to get anywhere.
My tests are all fine. Incredibly stiff and find it hard to stand after seating even if I’ve sat for only 10 minutes. And depression.
My clients are mostly healthcare and they a group have banded together to say enough is enough. Tomorrow I see a counsellor to change how I think about this - he also thinks I may have a degree of PTSD, an osteo is going to help with pain management and a PT who understands RA is going to help with gentle strengthening of the muscles surrounding the joints, and a nutritionist to help with weight loss. Something had to change as I’ve not really seen a single person in two months except delivery and postman!
As you can see from all the replies, everyone is slightly different and you may not even have a flare which would be fabulous. It does take a while to get this beast under control.
I've had poorly controlled RA for around 6 of the 17 years I've had it resulting in serious joint erosion and some loss of mobility. I'm in varying degrees of constant joint and tendon pain and find it difficult on times to say if I'm having a flare or have overdone things and my damaged joints are playing up. The flares I do have seem random and I have no idea what brings them on.
You need to get your RA under better control than it is.
Thank you all for your warm welcome and insightful responses; and apologies for the delay in responding - after I posted yesterday I had a 'getting the Christmas decorations down from on top of a wardrobe' incident. I didn't realise the box was so heavy and it dropped down, taking my wrist with it, and wrenching it in the process. It has swollen up and I'm back to left-hand typing. I think this is something I'm starting to learn; don't over-do it, be less stubborn and pace yourself. There is no shame in saying, 'actually this is too much for me', or 'if I do this then I will probably feel worse, so I won't do it'.
I recognise something in what all of you have said, particularly about stress and pacing, and how fatigue can often come from nowhere and poleaxe you. I try and keep a diary of when symptoms are worse, to have something that may show patterns; besides which my concept of time, and when things might have been good or not so good in the months in between seeing the Rheumatologist, is fuzzy to say the least.
One of the hardest things is people (anyone other than my husband really, as he sees the impact and effects first hand) not really understanding this disease. It can be very lonely. I have a five year old daughter and there are days when you just feel so guilty for not being able to do everything she, and you, wants to do. I try and take things a day at a time, but do get upset and frustrated. Thanks again, all; I think this forum is going to be a God-send. Wishing you all a happy Sunday, Jo.
Very best of luck to you, Jo. I think the plan you've mentioned is the best way forward. Pacing is really important and takes a while to get used to! It can be so frustrating to have to ask for help, but better to do that than overdo it and end up knocked out for days!
I can imagine how difficult it must be to deal with this and a young child -I had severe depression when my children were young. Not the same thing of course, but I know how hard it is to be unwell and somehow have to manage anyway.
Thank you, attatel. Depression is such a tough thing to live with when it's just you, let alone when you're a parent, and trying and wanting to be the best for your children (I've experienced clinical depression off an on for 20+ years now). Somehow you just focus on getting through a day at a time. It is tough, I hope you are in a better headspace now, Jo x
Much better now thanks! Sorry to hear you've had to deal with that too. It really is a hard thing to deal with. I hope your depression is at least manageable at the moment. All the best, Terryx
Before RA, I dealt with pain and fatigue by caffeinating and pushing through. Those options don't work now. It takes awhile to retrain your brain and find what works for you and how much you can do at any given time. It's natural r.i.p overdo it at first.
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