Posted in flare-up, rheumatoid arthritis

Learning from experience isn’t as easy as it sounds

This past weekend I found myself struggling with a very painful and exhausting flare-up.  It has been quite some time since I have encountered a flare this bad so if anything, it was long overdue.  The extreme exhaustion kept me in bed for two days.  Drifting in and out of sleep, I wanted to write down what I was feeling down mostly because I knew that if I did I would feel less depressed but I was too tired and too weak to even check emails.

I am not sure what I did differently to ignite this flare. I was trying to figure out if I made a bad food choice, if I had gotten enough sleep or if I was unusually stressed.  I wanted to pin point what caused the flare so that I would learn from experience.  I also wanted to track my progress during the flare so I can try different options the next time a flare came along.  However, I was not able to that because I good barely stay awake long enough to think about it.  A part of me was too busy giving into the flare to recognize what I was doing wrong.  All I can tell you is that it was a rollercoaster of pain, fatigue and depressed emotions.

During this experience, I did make a mental note of the things that stood out for me. The first day, I just felt like I couldn’t get comfortable and I didn’t want to be touched. Even my sheets touching my skin made me nervous.  By the time evening rolled around, I was just felt like I was coming down with something.  I became extremely exhausted and couldn’t fall asleep. By the time the weekend rolled around, every joint in my body was inflamed, I was extremely exhausted to the point where I couldn’t even stay awake, and had a fever and chills.  If not for the joint pain, I would have thought I had the flu.

Between the pain and fatigue, the depression was evident. At first, I started to feel sad but by the time the worst of the flare came, I felt defeated.  Here is the thing, I can say over and over that I will not let the flare win but it always does.  I can take try to take lessons from the last flare and try to make things better the next time around but it seems every flare is different so coping becomes hard and even my best laid plans fail.

By the time I realized what was happening, the flare had reached its peak with all the different types of pain you can think of: stabbing, burning, aching, etc.   My muscles and my joints seemed to be equally affected. The extreme exhaustion would put me to sleep easily but the pain would wake me up.  I got to the point where I only got up to use the bathroom because the pain and fatigue were too much to tolerate. To make things worse, my whole body was under attack.  My eyes were extremely dry and blurry, my face was sore and sagging and even my gums and teeth hurt.

I eventually found relief as the flare subsided.  I swear it was like going through a dark tunnel feeling tired, weary and hungry.  It was not until I saw the light at the end of the tunnel that I realized I was getting better.  The pain subsided, the swelling decreased and I had more energy.  I still have a lot of pain (stabbing pain) and stiffness in my joints, especially my hands, wrists, feet and ankles. What is interesting to note is that the flare started to subside, it was like had a burst of energy but I am still feeling a bit tired. I erred on the side of caution with the energy burst because I was afraid to repeat the entire process.  I am also still aching but the worst of the flare is gone.

All these years living with rheumatoid arthritis, you would think I would learn from experience but I really have not.  This flare was one of the worst I have had since the first year I was diagnosed so I am still reeling from it.  My hands still hurt as do my feet and ankles.  It hurt to put my seatbelt on this morning and it has been a very long time since I have had any major issues with my hands. I am slowly but surely getting back to some kind of normal.  Have I learned from this experience? I hope but I won’t know how much until the next flare comes around.


8 thoughts on “Learning from experience isn’t as easy as it sounds

  1. Lana: So sorry for your pain! I know exactly what you mean about the power of the flare every time it hits. And like you I always resolve to be better prepared the next….I have finally let that go along with the notion of finding some rhyme or reason for it. I really believe that the “stars align” and WHAM flare time….I tired journaling what I did before….etc. and nothing seemed to link the flares…so I decided that I would let that go and try to just get through them with rest, heat, hot soothing baths, guided imagery, patience and an occasional glass of wine…best of luck…Nan

    1. Hi Nan, Thanks for coming by. During the flare is the hardest time to think clearly. I have a cheat sheet on how to respond in my medicine cabinet but that usually goes out the window when the worst of the flare hits. And rest, heat, baths, imagagery, etc. are some great ways to get through the flare.

  2. If I could figure out what causes my flares I would bottle the answer and sell it to make a fortune. There is no rhyme or reason in my case. I do find that stress for me is a big problem and can trigger a flare but it can take up to several days after the stress for the flare to kick in. I think the stress wears me down somehow and invites the flare to overtake me. I sure hope you can figure out your flare triggers. And if you do, do tell. Feel better!

    1. Hi Deb! I wish I could figure it out but I think that the fact that no flare is the same is the reason who cannot figure it out. I believe that in my case it is stress and diet that do a number of me and cause flares so I try to steer caution but it does not always work. Thanks for coming by.

  3. Lana, it seems like we are paralleling each other lately. I am just coming out of the worst flare I have had since being diagnosed nearly 9 years ago. The longer I live with RA, the more I realize I’m helpless against flares. I hope you are feeling better by today.

    1. I was thinking about the parallel part when read your post Terry. Despite our diagnoses, we have been fortunate that we can still continue to work and enjoy our lives with some setbacks. My diagnosis was only four years ago but I struggled with symptoms for nearly 10 years. Because I do not have a Rh factor, it was so hard to diagnose me. But anyway, we have been pretty lucky (I am knocking on bed as I type this) and I think that is because RA has different severity types – mild, moderate, and severe. I think we are right in the middle and I am grateful that I am not a severe case and that RA has not taken away everything. My plans had to change but I still have plans and I glad for that. I am still helpless with the big flares (and this was one of them) but I manage to get through the small ones. I hope you are feeling better as well.

  4. Pain and flare-ups can be so depressing, frustrating, and scarily unpredictable. Sometimes I just reach the point that I stop asking what caused my flare-up and concentrate on my knowing that the flare-up WILL flare-down, just like a roller coaster ride has its ups and downs. But, from what I know of you, I can honestly say that the pain never wins, even if it makes you stay in bed for a while. Your courage, will, and emotional strength has won a long time.

    1. Hi Deborah, Thank you for visiting and thank you for your very kind words. And you are absolutely correct, I have moments but I generally win. Take care and I hope all is well with you.

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