Palindromic Rheumatism

29 01 2013

I woke up this morning with a flare-up in my foot. Not too bad a flare as flares go, though I did have to come downstairs on my bottom. Thankfully it’s eased off a bit now – but flares sometimes have a tendency to be worse in the mornings and evenings, so I’m crossing my fingers it doesn’t come back with a vengeance tonight.

So I’ve decided to make today’s post about what it’s like to have Palindromic Rheumatism – not about what it is, you can google that for yourself!

Chances are you’ve probably never heard of Palindromic Rheumatism. Or you might hear the ‘R’ word and say, ‘Oh yeah, my granny has that,’ – which is one of the reasons why sufferers tend to avoid using its proper name. It’s also sometimes called ‘Palindromic Arthritis’, which again is a name sufferers try to avoid, for the same reason. Some suffers just say ‘Oh, I have dodgy joints,’ or ‘It’s an auto-immune thing,’ and leave it at that, because they know that if they go into more detail, a glazed look will start to appear on the listeners face, and you know that they’re filing it in the ‘What my granny has’ box.

Let me try and clear something up – it’s not what your granny gets. That’s probably osteoarthritis, a very different kettle of fish.

One of the things about Palindromic Rheumatism that people also have trouble understanding is that it affects random joints (or the tissue around joints) er, randomly. It can start with, say, a slight feeling of mild pain in your foot, and a few hours later can have totally disappeared, or can have progressed into the sort of agony that means you can’t walk. Or sleep. It may last a few hours, or a few days. Then you might go for a few days (or weeks) with no flare-ups at all. But suddenly it’ll be back – this time in your left wrist. And just when it’s easing off, it pops up in your right shoulder. Then your left index finger. Then your left hip. Sometimes you’ll get a fever with the flare-up. Sometimes the offending area will be swollen and feel hot to the touch. Often you can’t sleep, as every movement that affects the flared-up joint is agony. Sometimes you may find yourself lying on the floor in a little ball of pain, trying not to be sick because it hurts so much, seriously considering chopping the offending limb off.

Oh, and when I mentioned index finger just there, you might have thought, ‘A hurting finger, that’s not so bad.’ Well. Just to set things straight, a finger in full-flare can be so bad. It can be so swollen that it feels like it’s going to burst if you move it. Any movement of your other fingers, hand, wrist or arm can cause agonising pain. You’ll have difficulty sleeping with that little hurty finger. You probably won’t be able to use that arm at all. Buttoning up a shirt? Doing up a zip? Putting on or taking off a jumper? Doing up a bra? Forget it. Baggy tops and jogging pants, and get used to doing things one-handed for a while.

And then it’s gone. Weeks, or even months might go by, and you start thinking, ‘Maybe it’s gone away. The doctors say it can just stop, so maybe it has.’ Then a few days later you wake up in the middle of the night with your foot swollen and if you want to go to the bathroom you have to crawl.

Oh, I forgot to mention fatigue. Pain wears you out – anyone who suffers from a painful condition will tell you that. So when your flare-up(s) have gone, often you’ll be shattered and want to do nothing more than sleep, or take it easy. Relish in the luxury of being able to lift the kettle with one hand. Delight in being able to go up and downstairs without having to either hang on to the handrail for grim life, or go up and down the stairs on your bottom.

No, it’s not proven to be diet related. No, it’s not proven to be weather related. Just thought I’d throw those in before you ask.

Just as an aside – iPhone and iPads are great (other touchscreen devices are available!). No painful buttons to press, no books to support and pages to turn. Hurrah for touch-screens!

Sometimes it’s deliberately cheeky – it’ll pop up in your right foot, knee or hip, but you struggle on with a walking stick… and then your left wrist flares up too so you can’t use the stick…

Sometimes it gets you in the throat and you think you’re coming down with flu or tonsillitis or something – but then a few hours later your throat is back to normal and you think, ‘Oh. That’s what it was.’

When the flare-up – or flare-ups, because it often affects more than one place at the same time – subside, your joints are back to normal. No damage.

‘Just take a painkiller!’ I hear you cry! Well the problem with most strong painkillers (whether of-the-shelf or prescribed) is they take a few hours to kick in – or in some cases 24 hours or more, by which time your flare-up may have gone, or at least be starting to ease off. And anyway, most of them won’t even touch the pain.

Are you getting the picture? See why it’s a bit annoying for sufferers when they get the ‘My granny has that,’ comment? Also annoying is to be asked ‘How’s your hip/knee/wrist etc?’ when you bump into someone who last saw you hobbling about or unable to use one hand or arm. Because, generally, it’s fine…

…until the next flare-up…

Update 22/03/14: There’s a great Palindromic Rheumatism group on Facebook, and an excellent blog on the subject called “My Palindromic Life“. Also Arthritis Research UK did a recent survey of sufferers which makes very interesting reading.




26 responses

30 01 2013
Paula Leatherdale

Never a truer word written… Or so succinctly!
I’ll be sharing this with others… It’s needed!
Thanks lots!
Take care! X

5 02 2013
rose appleby

Thank you! πŸ™‚ x

3 02 2013
Suzanne Williams

Yes that’s it…it’s just ike that!
Thank you for sharing.
XX Suz XXX (Another PR sufferer)

5 02 2013
rose appleby

Thank you for reading! All the best! x

18 02 2013
jeffrey evans

wow! Ive got to print this to give out mto my coworkers. Sometimes I think they think Im faking it to get out of work. They cant belive Im incompacitated one day and the next its like nothing ever happenned. You are so right about the pain killers,nothing helps. While in the hospital with a hip flareup I was given so much morphine I started seeing things that werent there. I was begging the nurse to put me to sleep. But of course that couldnt be done because there was no doctor that would authorize that, I think they thougt I was just another junkie looking for a fix.

5 08 2014
Debbie Merryman

I know the feeling. I hate to say something at work because tomorrow its gone and they think I was full of it.

21 02 2013
rose appleby

Hi there, thanks for reading, and I’m very glad my post hit the spot for you. Please feel free to share it, and I hope it helps bring awareness to your friends and colleagues of the reality of our much mis-understood condition. πŸ™‚

23 03 2013

I think I may have finally realised what is is wrong with me and I’m not imagining the way I feel. II’s like someone has given me all the answers to why I feel like I do. I just have to convince my doctors !

23 03 2013
rose appleby

Best of luck Jane, and thanks for reading – glad my post is perhaps helping to spread the word a little bit about a weird and often mis-diagnosed condition! πŸ™‚

30 03 2013

Wow Rose…thanks for sharing your story with Rheumatism. My mother had similar issues but not the exact type you mentioned. I tend to get pain in my hands sometimes and I am hoping it’s not something that is developing. Either way, I much appreciate your story and sharing it with us!

29 04 2013
rose appleby

Thank you for reading Eric! πŸ™‚

29 04 2013

You’ll nearly made me cry with your post. It’s exactly what I deal with. You just grit your teeth and get by sometimes. And when you try to explain people look at you like you’ve lost your mind… until the first time you can show them your finger swollen like a overlooked sausage, or the flush over one of your joints. Even then they can’t really empathize because they don’t realize just how much it hurts sometimes. When it hits my hips there are days when rolling from one side of the bed to the other makes we want to scream in pain. Right now I’m typing with a left pinky half crooked and right thumb flared up. And then you shake it off and try to keep moving and it goes away. Hang in there. I will too. For some reason I respond to Ibuprophen some (but not other NSAIDs). Maybe someday they will know what causes it.

29 04 2013
rose appleby

Thank you for reading – I was afraid my post might sound whiney, but it seems to have hit the spot with quite a few fellow sufferers. I know that moving-in-bed issue soooo well… :-/ Ouch…

20 05 2013
Susan Jack

That was fabulous to read. My PR described perfectly and so beautifuly clear and precise without drama. Thank you. I might hand it round the family to show them that there are others like me in the world and they are not alone either. Thank you so much. Susan

20 05 2013
rose appleby

Thanks for reading Susan, I hope my words come in useful πŸ™‚

30 08 2013

Thanks for writing this. It is an excellent description that I will be sharing with my friends.

30 08 2013
rose appleby

Thanks Jim! πŸ™‚

7 03 2014

OMG! Finally someone who describes exactly how it feels. The only thing I should add is when I had to ask my teenagers to help me to the bathroom as I could barely walk, never mind sitting! How helpless you feel. How you mention going down steps on your bottom, been there done that!! I also remember when I simply couldn’t walk up three steps because of the pain, crying with pain and frustration, my poor 70 year old mother trying to help me. And the fatigue!! I sometimes feel like a puppet whose master has cut its strings!
I am definitely sharing this post on my facebook page. My now grown kids will recognize this.

7 03 2014

I forgot to say thank you for this post πŸ™‚

7 03 2014

I am sharing this right away. Thank you!

16 03 2014

I have only recently been diagnosed and agree 100% with what you have said. I often feel like a fake when I see people after a flare up. Have you found any way of reducing swelling after flare ups? I have an elephant leg to foot at present and struggle to get footwear on and my calf muscles can cause just as much pain as the flare ups. Tried hot and cold compress, devils claw gel and elevating but nothing is working. Any advice greatly appreciated xx

17 03 2014
rose appleby

Hi there, I’m afraid I haven’t – I just try and rest (if possible!) and ride it out. Ibuprofen sometimes takes the edge of *slightly*, and if it’s my arm/shoulder/hand/fingers I use a scarf as a makeshift sling to try and hold & my arm in the least painful position I can find which helps a bit. For feet/legs/hips there’s not a lot that helps – just rest, loose shoes and trying to sleep through as much of the flare as possible. Oh, and make sure the path to the bathroom is free from obstruction at night… I’ve nearly come a cropper a few times having to drag one leg whilst hanging onto walls/furniture for support and then been faced with a laundry basket or something that I can’t get past! Keep a walking stick by the bed too for those bad flares. Hope your leg flare clears up soon! x

22 03 2014
Sharon Smith

Thank you so much, that is exactly what this is, with tears in my eyes, I thank you very much for a much needed accurate description of this disease, I am showing this to my doctor xxxx

22 03 2014
rose appleby

Thank you for reading Sharon, and glad to be of help. πŸ™‚

1 05 2014

Thank you very much!!Im in pain right now and really emocional!!Crying!!!
Thank you!!

12 12 2014

I love reading your descriptions of the pain and disability and mystery of palindromic arthritis b/c I have it also, and I totally “get” everything you say. It makes me laugh to read about it, just b/c I know how much we cannot laugh during flares! I have had PA for over 30 years but was successfully using Piroxicam “as needed” to nip flares in the bud until this fall when I had a heart attack and nsaids were banned. I have had more “flare time” since the heart attack than “off time,” so thanks for sharing your description and giving me some bittersweet “laughs at ourselves.”

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