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Every. Little. Thing. The Balancing Act of RA

Hello everyone, how is every little thing? That’s the question for us RA sufferers, isn’t it? Every. Little. Thing. Why? Because we know that if even the tiniest piece gets out of wack, things go haywire and haywire for us means…well, it’s messy. Like ‘announcing the wrong best picture at the Oscars’ messy.

Rheumatoid Arthritis is a balancing act and not the fun kind you see at the circus. Instead of Cirque du Soleil, it’s more like Hurt not Okay (you try thinking of something better). Sometimes the smallest change in daily routine, diet, medication, or even sleep patterns can throw your entire system out of alignment and that means one thing – the “F” word. No, not the four-letter one you’re thinking of but a five-letter word that involves a lot less cuddling and a lot more moaning.

I’m talking, of course, about a flare. Anyone with RA does their best to avoid them like the plague. And when we happen to stumble our way into one like I did recently, it’s all hands on deck to try to figure out what the hell triggered it.

Pain & stiffness I haven’t felt in a long time

Three months ago I started waking up with joint pain and stiffness on a level I hadn’t felt in a long time. That includes all through chemo and my bout with lymphoma, my attempts at exercising and regaining some muscle, and my short stint as a handyman around the house. At first, I simply thought I’d forgotten to take my meds. It’s happened before, but it usually doesn’t hurt until I actually realize I forgot to take my pills due to some weird application of the placebo effect.

Did I push myself too hard with exercise?

After a week or so I realized it couldn’t be me just forgetting my meds again and again. Placebo or not, five days without meds and I’d be effectively dead, so that couldn’t be it. Next, I thought maybe I had aggravated my body by doing too much exercise, but the amount of exercise I was doing wouldn’t make a mouse winded, so that was out. It was a mystery.

What was triggering this RA flare up?

After two months of bad days, I was at my wit’s end. I knew that I was going to go bonkers if I had to go back to the bad old days of not having a medicine that worked to control my RA. I spent twenty-five years like that and it was a rollercoaster of emotion. And pain. And hell. A painful rollercoaster of emotion straight to hell, one might say.

Assessing my diet

I was determined not to go back to that so next I thought maybe it’s something I’m eating. Or not eating. Or something I don’t even realize I’m eating. Or something…you get the picture. I began dissecting my entire diet, which, surprisingly, didn’t consist of much. Have you ever sat down and actually taken stock of what you eat? I think you’d be surprised. My diet consisted mainly of grilled chicken, coffee, and artificial sweetener. The supermodel’s diet, I think they call it. I guess I’m a creature of habit because I apparently eat the same thing more often than not.

Now, I know some people say wheat can cause RA to flare, and some say it’s gluten. Some say it’s too much sugar, and some say it’s alcohol, but none of those ever affected me in that way so it was unlikely they would suddenly start.

A determination to figure this out

I was beyond frustrated. I was waking up every morning with my knees feeling like they were encased in concrete and my neck feeling like I had carried King Kong on my shoulders. It had been so long since things had been that bad that I had forgotten what it felt like. The awfulness all came flooding back, though, like a bad acid trip, and I instantly remembered how every single bad day with RA felt.

I was sure this flare was of my own doing

It was even more important that I figure out what the heck I had changed to make the house of arthritis cards fall down. No – explode into flame. To add to the intrigue, every now and then I’d wakeup and feel like my old self – not that much pain and only a little stiffness. It was maddening because it definitely meant that it was somehow my fault, I was doing something that was causing the flare.

I was lying there in my bed last week, unable to get up once again. I was at my wit’s end, the type of overarching overwhelmedness that only someone suffering from chronic illness can experience. I turned to my nightstand to reach for my coffee. Since my fingers were also being affected by the current work stoppage going on in my body, I bobbled the coffee cup and spilled it over.

Was this the culprit behind my latest flare?

As it went down, it ricocheted off the bottle of diphenhydramine I was using to sleep lately, and we all ended up on the floor in a big, sticky, sweet, hot, mess, and not the good kind either. Somehow, every single time I drop things, they bounce and ricochet in ways that I couldn’t reproduce if I had one million tries, and it’s always the worst possible rebound.

Use of over-the-counter sleeping medicine

So there I was, cursing my hands, the illness, the universe in general, and the flimsiness of plastic bottles, and I had a thought. I had been taking more and more of the over-the-counter diphenhydramine sleeping medicine lately. In fact…I started taking it just about three months ago. I didn’t need it to go to sleep, but it helped keep me from waking up during the night, and that meant a more restful sleep. I think, no, I’m sure I had started taking it at around the same time the RA began to flare. Could it? Would it? Did it?

The fragility of chronic illness

Well, long story short, it could, it would, and it did. The simple act of taking a bit of sleeping over-the-counter medicine at night had flung my entire system in chaos and caused a flare in my RA, something I hadn’t experienced in a very long time. It took me three months to figure out what I had added or taken away that threw a spanner into the works. A tiny amount of purple liquid, not even enough to fill a medicine cup, was enough to make all the difference.

That’s how fragile the balance of the body is for those who suffer from chronic illness. I figured it out but it reminded me how careful I have to be, something I forgot in the long still between this flare and my last. So now the flare is subsiding but I have to find another way to stay asleep during the night. Maybe some of that over-the counter-stuff… Oh well, talk soon.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • suri613
    2 months ago

    I find that Circadin helps with the quailty of my sleep. it still takes forever for me to fall asleep, but once I finally do I sleep better. The Circadin is NOT a sleeping pill. It’s a slow release form of Melatonin. You can buy Melatonin over the counter, but you need a prescription for the Circadin.

  • Daniel Malito moderator author
    2 months ago

    @suri613 Thanks so much for the suggestion. I’m going to ask my pain doc what he thinks about it. I’ve never been a fan of over the counter melatonin as it wears off too soon, but this sounds like something that might work. Thanks for reading and commenting! Keep on keepin’ on, DPM

  • Kelly Dabel moderator
    2 months ago

    Thanks for sharing suri613. Sounds like an option for people to discuss with their doctor. We appreciate you sharing your experience. Best, Kelly, Rheumatoidarthritis.net Team Member

  • Katbow420
    2 months ago

    Consider trying a different “over the counter” sleep solution…cannabis. A good indica strain will help with sleep problems as well as joint pain.

  • Daniel Malito moderator author
    2 months ago

    @katbow420 First off, great screen name – I get why you’d recommend cannabis. lol. Unfortunately I have tried it and it just doesn’t agree with me. It works while it’s effect is happening but afterwards my joints ache and burn when it’s wearing off. That leaves me only two choices – be high all the time or try something else. Not that I’m morally opposed to the first, but I have stuff that needs to get done! Ha ha. Thanks for reading and for taking the time to share your suggestion. Keep on keepin’ on, DPM

  • Kelly Dabel moderator
    2 months ago

    Thank you for sharing your experience Katbow420. Glad you have been able to find some relief. Best, Kelly, Rheumatoidarthritis.net Team Member

  • Susie Que
    2 months ago

    Thank you for the laugh Daniel.
    I do have a suggestion but it’s not over the counter. Gabapentin 300mg
    I don’t have trouble getting to sleep but staying asleep is a huge problem. I have Osteoarthritis and RA so my joints hurt most of the time. Gabapentin keeps me asleep. I started using it a year ago for this reason. My nerve pain episodes were waking me up every half hour or so, after 2 or 3 episodes I couldn’t go back to sleep. Gabapentin was the answer. Good luck Daniel, I’m sending healing thoughts your way. ❤️

  • Daniel Malito moderator author
    2 months ago

    @susieque Thanks so much for taking the time to share your suggestion. I have actually tried it in the past and while it did do something, it just wasn’t strong enough against my 30+ year illness, it seems. The search continues! Thanks for reading and sending your thoughts! Keep on keepin’ on, DPM

  • Susie Que
    2 months ago

    Sending you healing thoughts Daniel !
    I hope you find that one thing that works for you.

  • Monica Y. Sengupta moderator
    2 months ago

    Thanks for sharing, @susieque! I am glad you found something that worked for you.

    This is very unrelated (a totally different species) but my dog had a sports injury last year. The vet prescribed her Gabapentin for her anxiety in the evenings so she could sleep!

    All the best, Monica

  • CynthiaV
    2 months ago

    So happy for you that you found out the cause of your issues Daniel. It is so frustrating going over every bit of minutia that you’ve done, eaten, drank, taken, etc. and still not findIng the reason behind the change. It can be especially difficult since illness, stress and emotional events can also be the cause.

    This narrow white line we walk every day is just more of the heavy baggage of chronic illness we carry and can’t put down. There is no true relaxation. We are always weighing choices, making decisions then crossing our fingers, when physically able. The way we sit, stand, walk, move, meds, what we eat, drink, how we socialize, it all matters. I think it is what I envy healthy people the most. The sheer freedom of just not thinking, not worrying, not weighing options. But we’re survivors as you so often prove in your articles.

    Best wishes with your search to find a safe alternative to diphenhydramine. So glad you’re feeling better.

  • Daniel Malito moderator author
    2 months ago

    @cynthiav It is true, healthy people get to not think about the things we do all the time, but make no mistake about it – it’s not a “less” thing it’s just a “different” thing. One thing I’ve learned over the years is that no matter what path you chose in life (or are thrown onto naked and afraid aka RA lol), it doesn’t mean less problems or more, just a different set. For instance, most healthy people walk around all day and have on idea what they are really made of or can really withstand, unlike us. Better? Worse? Nah, just different. Both sides have pluses and minuses. Thanks for reading and your kind words. Keep on keepin’ on, DPM

  • Monica Y. Sengupta moderator
    2 months ago

    Thanks for commenting, @cynthiav! You said it so well. I still remember when I didn’t have to think about anything except school, friends/family and pets. My life was mostly get up and go. Now, “every. little. thing” is thought about, planned and documented!

    ~Monica (RheumatoidArthritis.net team)

  • CynthiaV
    2 months ago

    Thank you Monica! Your kind words are always welcome.

  • Kay
    2 months ago

    Daniel this was so informative (and funny-and we need to laugh sometimes to keep from crying all the time). It still amazes me how easily and quickly a flare can be triggered. Thanks for such a well written article!

  • Daniel Malito moderator author
    2 months ago

    @kay We do need to laugh because if we can’t laugh at ourslves when the RA causes some insane and ridiculous things, what else can you do? Cry? There’s no crying in baseball. Or RA. Actually that’s not true there’s a lot of crying in RA, but you get what I mean. ha ha. Keep on keepin’ on, DPM

  • CynthiaV
    2 months ago

    You bring up some interesting points Daniel. True, everyone has challenges. As the old saying goes, “No one gets out of this life alive.” Lol. Take care.

  • Monica Y. Sengupta moderator
    2 months ago

    No warning and never the same cause twice, right @kay? Thank you for commenting! All the best, Monica

  • Casmere
    2 months ago

    Daniel, I am in the same situation for close to 3 weeks now. Not near as long as you, but I fully understand your frustrations. I don’t believe that gluten, wheat, alcohol or sugar has been the cause either. I don’t use OTC meds except once in a blue moon a Tylenol. I wonder, I had to increase my prednisone again in June and reduce by half mg each month. Which I have done 2x’s. My rheumatologist did tell me if things get worse after reducing to go back up. I really don’t want to do that if I don’t have to. I am in a quandary on this. When I check the calendar it is now 3 weeks and 1 day since I started this flare.
    As always, I do enjoy reading your articles. They are so informative and give us all information that we may not think about.

    Blessings and prayers to all
    Casmere

  • Daniel Malito moderator author
    2 months ago

    @casmere Well, we can’t all be lifers like me! ha ha. I have been in the increase/decrease prednisone game for years now. So much so my doc just gives me the max and tells me to work it out on my own. I guess that comes after 30 years almost of the same doc. Thanks for reading, as always. Keep on keepin’ on, DPM

  • tonytoshiba
    2 weeks ago

    Daniel,
    Ah, the joys of steroids, usually prednisone. The increased heart rate, glucose rising giving false indications of diabetes, teeth hurting, old broken bones screaming for mercy, ribs hurt upon coughing, laughing, a deep breathe, mind racing (good engineers), sleepless nights and days (great for reading or learning), no pain, feeling limber as if in my teens again, my lungs working like I imagine a normal set would, rashes all gone, and occasionally the mood swings, and no migraines.
    But it is a temporary solution, only a few months at a time when my lungs are trying to call it quits. Yes, I was on 100 mg 24/7 for a few years.
    Solutions would be nice, I don’t like to use steroids in the same fashion as opioids can be used.

  • Casmere
    2 months ago

    Hi Daniel, I have understood you have been on prednisone for a long time. That’s why you can help people with info and the perils of this drug.
    Thank you for your levity in your posts and replies.

    Blessings and prayers to you Daniel and all
    Casmere

  • Monica Y. Sengupta moderator
    2 months ago

    Hey @casmere!

    I am so sorry you’re going through this flare! May I ask, do you think there was a trigger for this recent one or was it just one of par-for-the-course flares?

    I know it’s been a few days since you posted. Have you decided to increase the Pred or are you staying on the same dose. Are you feeling better?

    All the best, Monica

  • Casmere
    2 months ago

    Monica sorry missed 1 of your questions I believe it was just one of par-for-the -course flare.

    Casmere

  • Casmere
    2 months ago

    Hi Monica, thank you for reading and replying. So, yes I decided to increase the prednisone by .5 mgs and also went to my family doctor and had cortisone injections in both hips. That was Friday.

    I am feeling some better, still some fatigue. But, since I haven’t been able to go see my mom since this started on the July 23rd I am tentatively planning to go see her tomorrow, 1 hr drive there and back. Of course it all depends on how I am feeling in the morning. As is the case with RA for all of us.

    Thank you and blessings to all
    Casmere

  • tonytoshiba
    2 months ago

    Casmere,
    Ah, prednisone. I use this for my asthma & COPD when nebulizer and injections fail.
    The prednisone helps and during the reduction my arthritis doesn’t hurt until I’m down to 30 mg a day.
    Use caution as prednisone will reduce the strength of your bones.
    As with you I do not think that gluten, sugar, alcohol cause it. I go months without any and I have no difference in levels of pain and stiffness.
    I was getting Botox for migraines and when injected into nerve blocks in neck the pain and stiffness was missing for a few months. Could be I just couldn’t feel it.

  • Casmere
    2 months ago

    Hi Tonytoshiba,
    thank you for your reply.

    Yes I am aware of the follies of prednisone. That is why I hate increasing it, but, it sure does help. i have the neck hump, puffy cheeks and prednisone belly. I need it right now while I am waiting to get on a biologic and will see then what happens.

    Right now I take Plaquenil, Celebrex and Gabapentin. I had a bad reaction to Methotrexate and Arava, so have been off DMARDS now for a couple years but when I saw my rheumatologist early June I told him “I am hurting, I need something, even if you want me to try Arava again I will” I got a big smile from him, he said ok we are going to do the pre work up for biologics. Put through the request for financial support for biologics, which will take a number of months.

    So that’s where I am right now, waiting and waiting.

    As always blessing to you and everyone
    Casmere

  • Frazzled
    2 months ago

    Amazing. I have been taking Diphenhydramine for years, and I had no idea it could potentially cause a flare, or the continuation of one. I also take prescription meds for sleep since I cannot fall asleep or stay asleep. I may have to remove the Diphenhydramine tonight and for the foreseeable future to see if it help with some of the stiffness and soreness I get every morning.

    And yes…a balancing act…with chain saws, batons set on fire, plus a monkey throwing dung at you while you try to keep everything in the air.

  • Daniel Malito moderator author
    2 months ago

    @frazzled Fraz, your dung monkey got loose and now he’s over here, and he brought also his flaming chainsaw. Can you come and get him back? It’s hafd enough to balance everything!! Ha ha. Thanks for reading. Keep on keepin’ on, DPM

  • Kay
    2 months ago

    Frazzled, Your last paragraph had me rolling (well, RA only lets me roll in my mind) with laughter as well as saying YES, that’s the truth!

  • Mary Sophia Hawks moderator
    2 months ago

    Great article Daniel! You considered so many things that I never think to do. I’m glad you figured it out.
    There are some prescription anti-depressants that can help with sleep. I’ve been taking one and have gotten great relief. I am also really careful with over the counter medication.
    I agree that the balancing act is quite overwhelming at times.
    Blessings to you,
    Mary Sophia

  • Daniel Malito moderator author
    2 months ago

    @c7mv96 Thanks for reading! You just never know what’s going to throw of your equilibrium with RA, do you? It’s a delicate dance we weave. Keep on keepin’ on, DPM

  • Lawrence 'rick' Phillips moderator
    2 months ago

    wow,, Sometimes I think I am mostly a detective, and not a very good one usually. I am glad you put two and two together and found it equaled four, I usually got 17 or something equally as not correct.

    Good job Daniel !!!

  • Daniel Malito moderator author
    2 months ago

    @lawrphil With RA, 2 plus 2 always seems to equal Q ha ha. That’s the way our crazy disease is. Thanks for reading as usual Rick. Keep on keepin’ on, DPM

  • 2mra
    2 months ago

    Hi Daniel:

    That’s Great that you discovered what was causing your flare!! Wow! Something that small. I’d be very happy if I were you since your pain is subsiding. Then you can start writing comedy again, to give the rest of us 15 minutes or more of relief. And yourself also. Glad to hear it.

    I talked to my Rheumy last week and he said that he would phone the people with the CBD, who also decide how much to give a person. They phoned the next day for my email address and sent me the questionaire.

    It was so long, that my whole arm started killing me. They also mentioned a “million” things that “may” happen to a person while taking the CBD. I was supposed to Agree not to hold them responsible. Mmmmm! I’ll have to think about all that. I’m not doing that bad yet.

    Anyways, Feel Well and Take Care.

  • Daniel Malito moderator author
    2 months ago

    @hwb0w4 I mean, it took a while to narrow it down, but I did find out that it was making things worse. It turned out not to be the 100% cause, but it was enough to cause issues. After 30+ years of illness I think we all become great amateur medical detectives. Thanks for reading, keep on keepin’ on, DPM

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