What does a Rheumatoid Arthritis flare feel like?

by admin on July 25, 2012 · 37 comments

what does a rheumatoid arthritis flare feel like

The thing to understand about inflammatory arthritis pain is that it’s always there.  It’s not like muscle pain that happens when you use the muscle, or a broken bone that hurts when you use the limb.  Arthritis pain is constant.  There’s no comfy position to get into so that it doesn’t hurt.

I have pain every day.  Sometimes it’s mild, sometimes not so much.  No matter what, I try to put a smile on my face and deal with it.  Why?  Because there isn’t really a choice.

To some people, I would be in a permanent flare.  I don’t really look at it that way.  I think most people with RA have a baseline level of pain.  For some, this is pain free.  For some, this is mild, occasional aches.  For some, this is daily aches and pains, from mild to moderate to severe.

Severe pain all day every day is what I would call perma-flare, and there are people who are forced to go through life this way.

My baseline is mild to moderate daily pain in various joints.  Usually not all at once, and the worst affected joints move around.  Some days it’s my hands and feet, some days it’s my neck and hips, some days my lower back.

Today it’s my ribs and my jaw that are giving me the most trouble.

Yesterday it was my hands and feet – ‘classic’ rheumatoid arthritis symptoms.  Tomorrow, who knows?

And then there are flares.  Full body mega flares I call them.

So what does a rheumatoid arthritis flare feel like?

Rheumatoid Arthritis guy put it like this:

Imagine having all your joints slowly pulled apart. Now, imagine not having to imagine it. This is rheumatoid arthritis. —RA Guy

I think that sounds pretty accurate.

Flares hurt a lot.

For me there is dull but strong pain in my wrists and ankles.  My lower back feels like someone is twisting a knife in it.  My knees ache, and then suddenly feel like someone has stabbed a screwdriver into them.  My ribs squeeze my lungs, so that it’s hard to breathe.  It feels like maybe I’m having a heart attack, or someone is crushing my chest.  There is no way to sit, no way to lie down, there is no position that eases the rib pain.  There is no way I can wear a bra!

Knowing that it is my ribs (costochondritis) helps with the anxiety.  I know I’m NOT having a heart attack, no matter how bad if feels.  It’s just pain.  Empty, pointless pain.

My jaw is throbs (TMJ disorder). It feels like the worst earache ever.  But my ears have been checked…there is no infection.  It’s referred pain from the jaw.  I have a constant headache radiating up from my jaw.  Opening my mouth hurts.  Closing again it hurts.  Chewing is not an option.  Not that I have an appetite anyway.  People tell me I slur my words…that’s because I am trying to move my jaw as little as possible.  Smiling hurts.  I try to smile anyway.  I may as well.

Sometimes out of the blue my big toes will just explode.  Big toe…hahahaha…how bad can that be?  Yeah, pretty bad!  It is searing pain that will stop you dead in your tracks.  Not so funny.  Your big toe helps with your balance and takes about 40% of the weight of all the toes.  It’s pretty important.  When it’s flaring, if it doesn’t make you scream aloud, it sure makes you walk funny.

And now onto my hips.  Again, there is no way to lie, no way to sit…hips, lower back, it all merges together.  The tendons also become inflamed (enthesitis), so moving hurts more.

My shoulders ache…it feels like there are lead weights on them.  Some days I can’t raise my arm very high.  Some days I can, but its excruciating.  Some days it just hurts a bit.  Because my shoulders are inflamed, out of alignment…something…the muscles all down my back spasm.  Massage helps temporarily.  Some days it hurts too much to be touched.

Then there are my eyes.  I often wake up with red, raw, dry, painful eyes.  Sometimes I have to sit in a darkened room until it subsides.  This is most probably iritis (anterior uveitis).

Inflammatory arthritis pain is constant.  It doesn’t quit.  It wears you down.  I think the constant pain is the cause most of the fatigue I experience…most of my brain is trying to block out severe pain and keep functioning. That’s exhausting.

So what can be done?  Prednisone burst.  Heat packs.  Topical creams and gels.  Hot showers. Extra nsaids, analgesics.  Rest.

A true full body mega flare?  Nothing, really, can be done.  Nothing touches it.  You just have to hope it doesn’t last long.  Mine are improving.  Lately they only last 24 hours or so.  Recently they were lasting 4 days or so.  The longest one lasted 4 months.  This is child’s play to what I’ve read some people experience.  Some people are in full body mega flare all the time.

I don’t know how they cope.  They have to, I guess.  Because there isn’t really a choice.

 

 

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{ 35 comments… read them below or add one }

C August 13, 2012 at 10:38 am

I’ve done the “go to the doc to make sure you’re not having a heart attack”. It is nice to hear your heart is fine, but bites that there is no real solution to make it feel better fast. I hope you can find some solution to lower your pain levels soon.

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admin August 15, 2012 at 7:52 am

Thanks C…same to you.

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jac September 30, 2012 at 8:41 pm

Ive done the lay n bed & felt too silly to ring an ambulance thinking if it wasnt a heart attack everyone would laugh at me.
Eventually I got to the Rheumy who is 350 klm away & he told me, when that pain is happening it is Fybromyalgia – I have this type of flare up because apparantly I have too much stress in my life = I suffer from inwards stress – if I was a normal person I would shout & scream, chuck a tantrum every now & then & that is called outward stress relief
We RA sufferers go through so much pain & everyday issues we harbour all our feelings
What is the treatment – he gives me a couple of injections in the chest to ease the pain. one in the lower back – a stern talking to, suggests yoga – suggests I tell the kids I need a 1 day a week NO GO ZONE – hahha obviously he doesnt live in the real world. But I must admit I always feel a bit better after the visit – he is the only person – that seems to know how I feel, everyone around me keeps saying you look so healthy – i wish there was a majic switch so they could feel whats going on in the inside
Acupuncture in the knees & ankles does give some relief – ignoring the housework for a day – staying in my office & let the staff do what ever they like occasnally – definately not having any acidic food & drinking plenty of water (at least 2 litres) a day
I’m sick of being practical – probly not the only one
I must say – I though I was the only one having the fake heart attack -

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admin October 1, 2012 at 7:44 am

It feels kinda good to discover other people have gone through the same things…even when you’re sorry they are in such pain too! Unfortunately, everything you are describing is so typical. Rheumy has been telling me to get rid of the stress in my life for years. Well, I’m a single mother now, with a child on the autistic spectrum…not realistic. I DID take up a yoga based class though – that has helped tremendously. DEfaintely as much for my mind and spirit as the strenght and flexibility in my body. AND I see a psychologist once a month. He specializes in chronic pain, and once a month I vent to him about all the pain, the things I couldn’t do, the stupid things people say to me…It really helps. My treatments from him is subsidised by medicare here in Australia, so it only costs me $5 to see him. Otherwise it would be an expensive impossibility. I don’t know if you can access something like that?

Good luck Jac, it sounds like you’re doing everything you can, and I’m glad that you have an understanding rheumy at least. Take care.

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June April 17, 2013 at 6:37 am

Lol wow did u make me laugh. I am a fibromyalgia sufferer as well as rheumatoid arthritis. I, too internalize too much. I suffer from “can’t let go of stress” or so my family says. So – maybe you and I have twin brains or bodies. Idk lol I have suffered with chest pain so severe that I drove directly to the ER and said I think I’m having a heart attack. Well I’m also hypertensive so they thought possibly shes telling the truth. But three days and many tests later – the cardiologist looked at me and said “ignore the chest pain, its no heart attack. – heart is good” … Thank God, especially since when are you TOLD to ignore chest pain. Any who, I’ve written off so much to fibromyalgia – why not – the drs do. Basically, I just wanted to write and tell you. You are not alone! And to thank you so much for making me smile, nope I laughed. Laughter is still the best medicine.

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margo December 1, 2012 at 12:48 am

I just read your article because I am having a severe flare in my right shoulder and was trying to check into it a bit more. I am so happy to hear I’m not crazy and I’m not the only person who has this kind of pain!(sorry) When I go to my RA Doc he just looks at my hands and says “you seem to be doing well”. :/ I don’t feel well – at all! I am sorry there are others out there like me, but it is such a relief knowing it. I am sure lots of other people feel this way. Thanks for writing.

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admin December 2, 2012 at 6:48 am

Another rheumy obsessed with hands! Rheumatoid Arthritis is about a lot more than hands!!! My hands look pretty good….they don’t feel good. What treatments are you on, Margo? I hope your doc understands that you’re not doing as well as he thinks, and that he listens to you. If not, it might be time for a second opinion? Good luck. Thanks for your comments

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margo December 10, 2012 at 6:25 am

Methotrexate only, tried Humira and Enbrel, no relief. I took myself off painkillers because i was turning into a “beotch”. I take advil pm every night to sleep. I just went to my primary, she ordered two MRIs, lumbar and cervical, both came back showing multiple bulges and the lumbar is hitting a nerve. Suggested cymbalta, maybe injections in the back. Also strongly suggested a new rheumy!! just made that appt. Thanks for responding. Take Care.

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Erica January 17, 2013 at 10:44 pm

I’ve heard of some people who say the Specific Carb Diet has helped them, and slowly, it is helping my fibro pain. It’s been tough, but worth it. I have a lot of old injuries that seem to still have bad inflammation and it’s helping with those as well. I’ve had so many injuries since I was a kid that I just can’t take anti inflammatory meds anymore. They wreck my stomach and everything else now, and I can’t imagine how much steroids would mess me up. But maybe this will help permanently – thought I would share :)

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admin February 28, 2013 at 2:26 pm

Thankyou Erica. I will look into the Specific Carb diet…I haven’t heard of that one?

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Alexis May 16, 2013 at 1:27 pm

First, I want to say thank you for sharing this. Second, seriously THANK YOU! Im newly diagnosed (November 2012) and the first month of onset was as you call it “mega flare” everyday all day. I had no meds to help as Im allergic to most pain medicines the most severe is Tylenol(acetaminophen) and so yes, you just keep going because what other choice do you have. Since I am a newbie so to speak and mine was caught very early (though no insurance is making getting proper treatment…impossible) I feel silly or overly dramatic when I want( not actually doing it) to tell people how this is REALLY effecting me not just the pain but how it is draining on me mentally and emtionally. Depression is nothing new to me, but this… this is so different because this is real, really real and seemingly not in my control so yea, it is taking a toll. I have only one person to really talk RA with and she’s a blessing but I don’t want to be a bother or become a nuisance so I limit RA talk/complaints thus I’ve turned to online forums and blog sites; my favorite thus far is Rawarrior.com however your post has done what Ive been seeking from the start of this, someone who GETS IT and you describe it perfectly. When I read ” It’s just pain. Empty, pointless pain.” I knew I had to write this and thank you from the bottom of my heart!!!!!!! I pray you have more good days than bad and that you truly smile (sans the pain) reading this has been a blessing. Again, THANK YOU.

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admin May 16, 2013 at 1:46 pm

Thank you Alexis…its people like you that keep me going too. We all need somewhere to go to vent, and online forums and facebook pages can be excellent for finding some support, from the only people who really understand – other sufferers. Although we all have different symptoms, and degrees of disease we have more in common than not. I hope you are getting proper treatment…what meds are you on? It always comes down to money…which I hate. In a perfect world it would be about who needs the medications…not who has the money to pay. I’m glad you have at least one ‘in person’ friend that you can talk to. I think that makes a huge difference in keep depression at bay. And we’re always here for you if you need to vent! Take care…I hope your pain levels start to go down soon.

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Anonymous May 17, 2013 at 5:02 am

Im only on Tramadol and cyclobenzaprine right now because I’ve yet to be seen by a Rheumatologist. My doctor at my local health dept. diagnosed me and referred me to a Rheumy but I could not afford it, but since she is amazing she found a state clinic/program that takes uninsured patients ( of course there is a fee but not nearly as much as it could be) my fist appointment is on my birthday which is bitter but oh so sweet at the same time! Ive been in denial about having RA and that’s just my coping mechanism but its kinda hard to deny the constant nagging pain or as you so perfectly stated ” It’s just pain. Empty, pointless pain”, the fatigue, etc. etc., but I just wanted it to be something, anything but this… yet no matter how much I deny the MANY blood test and exams don’t seem to get that I DONT WANT RA( I have to laugh sometimes… it keeps me sane,lol) I appreciate you responding and for having this outlet for us!!! Blessings!

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Alexis May 17, 2013 at 7:29 am

Im currently only on Tramadol ( which barely takes the edge off during a flare but its better than nothing) and Cyclobenzaprine (which just puts me to sleep but I’ve woken up in pain… but again its better than nothing)… I have my first Rheumy appointment next week on my birthday, which is bitter sweet but Im hoping to get on a treatment plan that is helpful on a daily basis because just like you, I think a lot if the fatigue is simply because we push through and our body gets overwhelmed and forces us to “sit down” so if I can get it some what under control, life I hope and believe wont seem so daunting at times… Thanks for responding and thanks for giving us a place to vent, learn and cope. I will definitely be a regular here Blessings!

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admin May 17, 2013 at 9:11 am

Hi Alexis, I hear you…tramadol isn’t enough. I hope your rheumy is helpful…and aggressive with treatment. Don’t be afraid to ask him for better pain meds…being able to get some sleep makes the world of difference. But hopefully he can give you some meds to get your inflammation and pain under control quickly, until the DMARDs kick in. Please write back and tell me how your appointment goes (here on on the facebook page!) And I hope you have a very Happy Birthday!

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Anonymous May 17, 2013 at 12:06 pm

Will Do!!! Thanks! ( sorry for the double response, my computer froze when I hit submit and I didn’t think it sent, lol)

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Jessica May 20, 2013 at 3:47 am

Thank you, Thank you for sharing. You understand. People can not see it so they think it is in your head. There are days I want to rip out my spine it hurts so bad. When you are walking you are crying in your head because of the pain and trying to keep your ballance, thank you, thank you for allowing me to see I am not alone ((((((soft soft hug)))

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admin May 20, 2013 at 7:17 am

You’re never alone, Jessica. I’m sorry you’re in so much pain…I hope you can get some relief soon. You’ll always find support and understanding here :)

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coronary heart disease June 1, 2013 at 10:56 pm

An outstanding share! I’ve just forwarded this onto a co-worker who was doing a little homework on this. And he in fact bought me dinner simply because I found it for him… lol. So allow me to reword this…. Thank YOU for the meal!! But yeah, thanx for spending time to talk about this subject here on your site.

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Shelly July 8, 2013 at 12:51 pm

I have diagnosed a little over a year ago and have recently experiencing pain in my rib cage. It frightens me! I was starting to panic about it (for the millionth time) and I ran into your blog! Thank you! Any recommendations for a comfortable bra? I’m ready to burn all of mine! I’m seeing my rheumatologist ths week so I can figure out for sure what’s going on…. not for sure it’s Costochondritis but it sure makes sense! Thanks again!

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Shelly July 8, 2013 at 12:53 pm

I was diagnosed a little over a year ago and have recently been experiencing pain in my rib cage. It frightens me! I was starting to panic about it (for the millionth time) and I ran into your blog! Thank you! Any recommendations for a comfortable bra? I’m ready to burn all of mine! I’m seeing my rheumatologist ths week so I can figure out for sure what’s going on…. not for sure it’s Costochondritis but it sure makes sense! Thanks again!

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admin July 8, 2013 at 4:56 pm

It definately is scarey at first. Once you know what it is, at least the fear goes. Its not dangerous…just incredibly painful. Just! LOL. I hope you can get some relief. I have some soft, no underwire bras. They are sort of woven, and in one piece. They can be difficult to get on, but once I’m wearing it, its very comfortable…no underwires, no fasteners.

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Shelly July 9, 2013 at 12:31 pm

Thanks for the tips! I love your blog! Thanks so much!

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admin July 9, 2013 at 12:34 pm

Thanks Shelly :)

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website September 9, 2013 at 2:18 am

I must thank you for tthe efforts you have put in penning this
website. I really hope to see the same high-grade content by
you later on as well. In fact, your creative writing abilities has
motivated me to get my owwn blog now ;)

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Trish D April 8, 2014 at 8:58 am

Thank you so much for this article.

Although it may not educate as many “healthy / normal” people as we would like, however it helps to make fellow sufferers feel less alone. Especially when we are at our weakest and most painful.

Again, thank you.
x
Trish

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admin April 8, 2014 at 10:39 am

Thank you Trish. It’s just sad that so many of us know exactly what it feels like. You’re never alone xxx

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Melissa M May 4, 2014 at 9:35 pm

I’m so happy I found your site today. I was diagnosed 2 years ago, but had symptoms for about 4 years before they figured out that I have RA and fibromyalgia. I get so tired of people at work asking what I did when I limp. I think they think I’m making it up because sometimes it’s my ankle, sometimes it’s my knee. Sometimes it’s my hips because I’ve been limping due to my ankle or knee. My main issue is always the fatigue. I never thought about the fatigue being so bad because I’m constantly fighting pain, even when it’s at a lower level. I still work full-time but that is basically all I have the strength for. The guilt I feel because my husband is cheated out of my time and energy are the worst! While I hate to hear of other’s pain, it’s nice to know I’m not alone.

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Anonymous June 17, 2014 at 7:43 am

This is a great website I typed in I want to know the truh about RA I was diagnosed two years ago
I took 5 lorabs 3 muscle relaxers cymbalta ambien and that was all before
The RA diagnosis I have had 3 neck surgeries 2 back surgeries a knee surgery
If I had to deal with his just with NSAIDs I couldn’t imagine the pain
The rheumy has me on actemera injection now ur before that
Methotrexate plaquenil cyclo something Humara embrel.
Thanks for the blog

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admin June 17, 2014 at 8:09 am

Its a long journey to find meds that work. I hope you’ve found a combo that gives you some relief.

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Belinda September 2, 2014 at 3:16 am

My rh pain is with me constant and makes me feel sick the pain rips thought your body including muscles I had rutuximab infusions in April no joy just more Heath problems I take loads of pain relief but nothing touches the pain it’s horrific searing I had pain in left arm so severe thought I was having a heat attack it lasted a week but checked it out at hospital and they said nerve pain I’ve never felt pain like it and telling others is difficult I mean I look ok it wears me down sometimes I want to die I’m 51 and had this since I was 37

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admin September 2, 2014 at 8:38 am

I’m so sorry Belinda. The pain can be absolutely terrible and you never know when or if its going to give you a little reprieve for a while. What kind of pain relief have they given you? Clearly its not enough! Hang in there…thinking of you. xx

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Belinda October 16, 2014 at 8:28 am

Hi they gave me naproxen steroids paracetamol and codeine I’m also taking methotrexate the retuximab has not worked and they want me to have more it scares me and what if it doesn’t work it has side affects and leads to more problems I know no one can help it’s just a cruel illness belinda

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admin October 16, 2014 at 12:21 pm

It really is cruel, Belinda. I’m sorry. I think the hardest thing is that all these drugs are scary with dangerous side effects, and there is no guarantee they will help. We just have to have faith and try. Because the alternative is to live without any hope at all. When is your next infusion due?

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Lindsey November 29, 2014 at 6:19 pm

I stumbled on your post when I googled ‘Rheumatoid Arthritis in jaw’ and I’m happy I did! Sometimes I google how bad things can get to sort of prepaire myself for what could happen. I was diagnosed with RA when I was 18 months old, some people feel bad for me, but I am actually thankful I’ve never known anything other than how my life is now. I feel bad for everyone here in pain, especially our kind of pain that doesn’t show itself. Growing up I received ZERO sympathy from ANYONE (that didn’t know me) because I should be running around like “normal” children. I’m 25 now, and it seems like every year my arthritis pops up some place new, and I have very limited medication options because there’s only so many to try. I’ve even become one of those statistics that you read on the back of bottles or injectables that warn you of cancer, I should probably play the lotto ;) I sincerely appreciate this post, it’s nice to feel less crazy and alone. My heart is with anyone who struggles to make it through the day, knowing that you’ll be 10 times stiffer when you wake up. (Heated mattress pads are glorious)

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