Plz describe your flares

Hi Brainscribbles,

I too am usually fairly tolerant of pain, but when it's constant, even if it's not super awful, it is exhausting which doesn't help with the fatigue already associated with RA. In fact, the fatigue is almost worst for me than the pain. I am always curious about what a 'flare' really is, as well. I've had times when my hand (usually it shifts from one hand to the other or just stays on one hand) is so swollen and so painful that I can't sleep at all and lying down makes the pain and numbness even worse so I end up walking around all night long (literally all night long) usually in tears from the pain. It usually subsides after 24 hours, but I always know when the 'flare' for that part of my body is coming. It's the same with my shoulders. Usually that's where my bad 'flares' tend to go---hands/wrists and shoulders.

I am hoping to get on a clinical trial for Humira or Xeljanz but that process has been frustrating to say the least. I'm on Methotrexate, but I hate it. I was on Leflunomide prior to being on the MTX and the leflunomide helped more and it was cheaper. MTX brought on *more* pain and makes me even more tired than I already am from RA, but the clinical trial insists the patient be on the MTX for at least 4 months to get on the trial for the biologics. 

Before I started any of the drugs, my feet had it the worst. I could barely walk in the mornings and although the pain would subside, it was fairly constant and awful. So I guess what I'm saying is, I have no idea if there is an 'exact' pain to consider a 'flare'. I'm always swollen, especially in my knuckles and my Rheumatologist has mentioned that THAT is a flare up....so I think it's different for everyone.

I don't have any damage at this point either, which is the good news. I know there are people who have done very well on the biologic drugs and have resumed their active lifestyles. I would LOVE to have mine back. I used to walk/jog Half Marathons and do Pilates 3-4 times a week. Now I'm lucky if I have the energy to walk a half mile.

I hope others respond with their dealings of flare ups because I am curious too! Good luck to you. I think you will find this forum very helpful. The people here are great!

 

hiya scribbles

ra is definetly life altering but try not to let it define your life. i have had ra for 5 yrs now and am on retuxiflab (or however it is spelt) infusions i find it has really helped but it does take ages for your consultant to find a drug that works for you as we all seem to be different. i would advise to keep on reporting back to the rheumatology dept we have a ra nurse at ours and a helpline number we can call if you dont badger them they will assume you are coping ok.

learning to pace yourself according to the pain is essential ask to be refered to your local hospitals pain clinic they are a godsend with many different depts to help from psycolocgists to physio i am going for my first hydro session soon i wish you good luck

I am the same as Vanda. I am on the biologic rituximab and it has made a significant difference. Yes I have painful shoulders and feet when I first get up but it wears off and I can now go line dancing and walking and look after my grandchildren!(although still some fatigue and adaptations to be made)

.I totally agree, keep telling them exactly how you are if things aren't helping. After diagnosis in March 2014 I had a terrible time for months. I was on mx for 3 months, sulfasalazine and prednisolone steroid added, then 3 months later hydroxychloroquine added. But I was still in a lot of pain so next onto a biologic which I'd heard from others really did change things. My physio at the beginning warned it might take a year to find what works for me. It does seem to be different for each person as methotrexate on its own works for some. Some people have to try several biologics. But the outcome for people with ra now is so much better than 10 years ago.so even though it s horrible at the moment there s every possibility the right meds to help you will be found.

hello brian

all my flares are different and change all the time. i have tried several dms and am finding although mtx working for my feet are not making me completly pain free. i would say persevere as it takes ages to find something that helps and weather it helps for long is a different story. i have had a constant flare in my right wrist but have had some light relief, with the pain not being so intense. it may be it is just a bit better in the summer. i have to take liquid morphine and co codamol when its really bad and some times it is a contant excruciating pain while other times it is a wave like pain and sometimes burning/stabbing, it just differs. all of it is bloody nasty. wish u well buddy. xx

Thanks for the replies.  To be a bit more specific, I'm wondering how much pain a flare causes and for how long? How debilitating? I have lots of denial and doubt.  Sometimes I convince myself that I'm just being a whingy sad sack, yet I fear a worse, more constant pain.   I am not ready to ask for morphine (yikes! Lou! You poor thing!), but I cannot ignore this pain either.   How much pain did you experience before the meds started working?  How have things improved?  Between flares, is everything OK? 

I need the morhine when the flare is constant for example sometimes it can last as long as 8 constant hrs. ive been in that much pain with it that i have to start my breathing techniques and have phoned 111 as im just to climbing the walls. even the morphine and the co codamol doesnt touch it. im not sure if this was nerves or what but its the worst ive ever had and i gave birth with out pain relief!!! When the swelling is starting it can last for months or days but im on 20mg mtx and so have noticed it has dampened it down a bit. my wrists and hands seemed to have been in a constant flare for about a year. xx

Hi BrainScribbles

I’ve been living with RA for the past 10 years and like you was never sure what a “flare” meant. I was recently given a second diagnosis of Palindromic Rheumatism which has helped me understand what a flare means for me and I think might be of interest to suelmc222, emmaholder and hopefully, yourself. (Check out the Arthritis Research UK website and search under Palindromic Rheumatism)

With me the pain started in my feet.  It was fairly low level but constant and in addition I had chronic fatigue.  I was eventually diagnosed with RA and put on Methotrexate which helped with both symptoms.  However during that time I also experienced severe pain that would affect one joint at a time in my shoulders, wrists, hands and feet.  The pain would build, peak and be excruciating.  No pain killers touched it.  24 hours or so later the pain would go leaving no evidence that it was ever there.  12 months after taking the Methotrexate, a second drug called hydroxychroloquine was added which helped bring these episodes under control and I lived relatively pain free for a number of years experiencing only a few episodes which were treated with steroid injections (4 occasions over the past 10 year) which helped to settle things down.

Unfortunately these “Palindromic” episodes have come back with a vengeance and last week I experienced a flare on both shoulders at the same time.  The pain was off the chart and I am looking to have my meds tweaked to bring it back under control.

RA in all its forms is an awful life changing disease that is difficult to live with, however it can be brought under control with drugs and some changes to lifestyle.  I hope you find the answer you are looking for, if not in my post, then in the many other helpful ones here.