- I keep as active as I am able.
Luckily, most of the time I am able to cycle (I don’t have a car any more), which I love. Sometimes, when my knees are bad, it’s actually easier to cycle than it is to walk. - I also do some sort of exercise when I can.
At the moment Zumba classes and pilates are my exercise classes of choice. As well as helping me physically, exercise is also beneficial for me emotionally. It promotes a more positive relationship with my body – where I love what it can do, instead of hating it for what it can’t. - Mindfulness and meditation.
I find both useful for life in general, but also for living with an unpredictable chronic condition. Mindfulness helps me stop projecting ahead so that when I get a bad flare up, I stop thinking about all the things it might stop me doing tomorrow. It’s a waste of energy when the chances are it will be somewhere else tomorrow – or gone altogether. Mindfulness keeps me in the now and also, when things are bad, allows me to feel bad without feeling guilty that I ‘should’ be being ‘stronger’! - I love to sing. I also love music.
Live music and singing with others keep me sane. - Resting and making sure I get enough sleep.
While I enjoy an active social life, I need to make sure that I get enough sleep. Not working full-time means that I can lie in if necessary, and working for myself means that I can work from bed if I am too tired to leave the house, but still able to function. - Massage and reflexology
Both are great for promoting relaxation. Neither are ‘cures’. - Heat patches are great for taking the edge off an acute attack
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My Palindromic Life 
Hello, love your blog. You’ve managed to say things how they are and yet leave us feeling positive. My husband has had PR now for about 10 years, he has had all the DMARDs and recently suffered with demyelination on etanercept, so we’re eagerly waiting to hear what DrS has to say in response to his reading and digging.
Also I know what you mean about Zumba, I didn’t know my hips could do things like that!!!
My wife has been suffering with these symptoms for well over a year now and we have only just got a “I think it’s this” diagnosis. Reading your blog has given my wife and I so many more positive actions to take to help he with PR. thank you for being brave enough to blog. I have added my email address and would love to talk to you about PR and I’m sure my wife would to.
I think the most important thing I take away from this is……start loving my body for what it can do, not what it cannot. I try, oh lord knows I try, I try to remain so grateful that I am still ok on good days, I say if i can move today then that’s exactly what I will do. Sometimes it works out with no pain following and sometimes it does not. Some times I have to cancel things and sometimes I can attend …..Sometimes I can stop it before it goes full blown and well, sometimes I cannot. Sometimes I know if I did something to stir a flare, sometimes I have no clue. All in all and all the time I am thankful, thankful that I have been able to learn about PR, thankful there was finally a diagnosis, thankful that my bones do not degenerate because of it. Thankful that it is not permanent in any one location. Thankful I can still do all the things in life I love to do, but only sometimes :))
I too am so grateful that what I have is palindromic, I am also so grateful to have found others with all of the same symptoms, it helps enormously, it’s difficult for friends and family to comprehend, and it’s sometimes easier just to hide away instead of constantly trying to explain something that you can’t always see and more importantly that which most people have never heard of. I haven’t yet determined if there are certain foods or actions that bring on a flare up, although I have had this now for many years, I can say though that standard pain killers don’t touch it, and both of the drugs I was prescribed haven’t assisted. I do think its important to keep moving as much as you can, when you can. Make hay when the sun shines!
I have been diagnosed with palindromic arthritis. Methotrexate was discontinued and now my hands feel puffy. The stiffness never goes away anywhere. Dr. Is going to try cortisone in left hip now. Do you think there are dietary triggers like gluten? I am 51 and have been dealing with this for about 15 years. I work full time and exercise. Cortisone helped my heel spurs.
thanks for your message and sorry to hear that the stiffness never goes. I’m not sure about dietary triggers. I’ve never found any, but other people on the facebook group think that they might be triggered by different foods – like gluten, sugar, MSG etc. For me, it’s too difficult to tell if food is a factor. it would be great if there was something you could do easily – like give up a food – but sadly, I don’t think that’s likely in my case. But we’re all different so it might be worth starting a food diary and seeing if there’s any thing that comes up. Good luck.
Hello All 🙂 Today is a good day….8 spoons left and it’s 7pm!!!!!!!
I was just reading through some replies and here is what I have to add from my repitior of dealing with PR. I recently ended up in hospital because the attack I was having was sooooo very severe I really could not manage the pain. I endure absolutely as much as I can first, due to acknowledgement that the hospital really cannot help. However, this instance was fierce. So during my attack naturally friends and family all highten their concern for me and with great empathy they ask “how are you” , “what does it feel like” “can you do this” etc . It is very difficult to explain all that occurs with me in my daily life, as I cannot take the dosage of most drugs that would help manage this condition due to me having chronic Uticaria. So reading through stories here, I offer to you, what I now have adapted into my everyday life. It is the “Spoon Theory” feel free to look it up on google and adapt your own version. For me it quite simply means I start every single day with “12 spoons” sometimes it takes 3 spoons to get out of bed, another 2 spoons to get dressed, another 2 spoons to shower or bath or just wash my face and brush my teeth. It may take up to 3 spoons just to prepare something to eat….then a friend may call and ask to go for lunch or shopping or something and my reply may be…… I only have 2 spoons left for the day and it’s only 10 am :((
That would be the end of the conversation…….no more need to extend explanation, no more energy on what will today bring, no more feeling guilty cause others don’t quite understand. It’s done, it is what it is…..my friends and family all now understand…..because I am quite comical it has taken a humour affect amongst my circle……friends call now and say “Hey Virg how many spoons you have today” It’s brilliant……..It is not taking away all that is with this condition, but it is a very simple and loving way to tell others I’m just not so great today or the better of it is…. I have 12 spoons left and it’s 4pm !!!!!! I believe that everyday every little bit helps…….hope this may find a space in your place to get you through your days :))
Thanks for your post. Much appreciated. It’s really good to hear how spoon theory works for you in practice and that it’s helped your friends and family understand. I also found the spoon theory very useful and had come across it a while ago. There is a post on the site about ‘managing energy’ where I talk a little about it.
Thanks for these posts they are truly helpful. My daughters rheumatologist has just told her that she might have PR She is 14 years old and has been suffering from the time she was 10 years old. I am not sure if the diagnosis is correct because she has all the symptoms you describe but I cannot find any information on PR in children. At the onset when she was 10 she was riddled with pain from her head to toes. As the months past she had less frequent flare ups and they would typically last 5 days. Now she has been getting flare ups more frequently and the pain meds seem to not help.
Thanks for taking the time to comment on the blog. I’m really sorry to hear that your daughter is suffering. I know that young people and children can get arthritis, so I guess it’s possible that it’s a PR type of one. Hopefully, if it’s truly PR this means that no damage is occurring.
It’s hard to deal with this disease as an adult, but I imagine it must be even tougher as a teenage girl.
The pain meds don’t really help for me either unfortunately so I can really sympathise with her. I hope that she can find some relief. Can she get referred to a pain management course? It can be really helpful to have a range of techniques to help deal with the pain. Good luck to her (and to you!).
Do you find that PR messes with your mind when you are feeling poorly?
Yes. I find that if I am in pain a lot or very fatigued, I do feel worse about myself, am more likely to be tearful and have more negative thoughts, and be extra sensitive.
Just came across your blog. I have RA, about same amount of time…started in 2003, diagnosed in 2004, I am also 42 yrs old. Looking forward to following your blog.
Just got diagnosed with PR. can’t think that i have got a disease for my whole life i am just 24. It’s really difficult to do normal day to day work. Read your blog and it gives my strength to cope with my situation. Lookng forward to follow it.
so sorry to hear about your diagnosis. It’s tough news to receive at any age, but in your twenties, particularly horrible I think. BUT… things do change with this disease and it’s not the same for everyone. Hopefully, now you’ve had a diagnosis you can get support to find some ways of getting it under control. Mine is no where near as bad as it was when I was first diagnosed 12/13 years ago. I was scared I’d be completely disabled by the time I hit 40 but that hasn’t been the case at all. I hope you find some relief soon.
Wow…I am just coming down from one of the most excruciatingly painful “fl-ups” (flare-ups) that I have ever experienced. I have some, like last nights and into this mornings that have had me wanting to remove…AMPUTATE…the knee, leg!!! Pain that only a bullet can stop. This one lasted longer than any other has ever. Scares the hell out of me for future “fl-ups”.
My name is Annette. I was diagnosed with RA about 6 years ago. My Rheumatologist put me on a variety of drugs. One thing after another. I have found NOTHING to this point that relieves the acute pain that occurs with a “fl-up”.
Hi Annette,
Sorry to hear about your awful Flare up. I agree, when they’re that bad, nothing can touch it. hoping that you find some relief soon, but in the meantime, that the flare subsides.
take care,
Ruth
I am happy to have found you😀diagnosed 4 years ago. R dr wanted to go with Methyl t but i suffered mostly short term acute attacks and super frequent and sometimes long remissions. Last 3 weeks has been 24/7 acute and ongoing chronic…….whats really scareded me is its now in multiple joints at the same time. First 4 years was always 1 joint attacked and then moves on to another or goes away. Reading in your blog that you sat up in bed crying from the shoulder attack made me not feel alone. I have cried a river from pain in the last 3 weeks……..i am on tylenol and advil and it just provides light relief…..still there but not making me cry. I tried CBD oil and the one i tried did nothing. Tried morphine……made me not as sad but didnt touch the pain……..tried percocet, didnt work and made me vomit. Its good to share with folks who understand the pain level. Thanks for being here…..