10 things you may not know about living with arthritis

It’s National Arthritis Week from 12th – 18th October and I’ve been asked by Arthritis Research UK  to ‘donate’ a blog post to raise awareness about the week. One of the suggestions was to do a Q&A – 10 things you might not know. The thing about arthritis is it isn’t really a universal condition, and affects us all differently, even though there will be things that we share (pain mainly!), so I thought the Q&A was a really good way to highlight this and how it impacts on my own life.

The condition I live with is called: Palindromic Rheumatism. Most people have never heard of it. Some medical professionals haven’t even heard of it. Palindromic means a word that is the same when you read it backwards and forwards. In the case of this type of arthritis, it means that the joint flares come and go. They can be in one joint at a time or many. They can be there for hours, days or even weeks. They can flit from joint to joint with no warning, and sometimes I can wake up with a pain in one joint, and go to bed with a pain in a completely different joint. There is no rhyme or reason to my particular PR. I can’t predict when I’ll flare or when the flare will go.

I was diagnosed aged: 34

How my arthritis most affects my day to day life: Because PR causes pain and fatigue, I have to be careful that when I don’t have any pain or fatigue that I don’t overdo it. Its unpredictability means that I sometimes have to cancel things at the last minute. It’s hard to plan when I don’t know how I’m going to feel. I can have loads of energy and do lots of physical things and brain taxing things. I can also have days when I can’t get out of bed and even formulating a sentence is too taxing on my brain. The one predictable thing about my PR is that it is not predictable. Even when I am not flaring or fatigued, I don’t forget that I have PR because I have to plan and manage my energy carefully. I also have quite a strict regime to help me live better with PR. I eat healthily (no meat, minimum dairy, no gluten at all, not much refined sugar), exercise often (most days of the week I will do SOMETHING), and meditate most days. I probably spend a lot of energy and time looking after my mental and physical health. I was already prone to depression before developing PR. Since developing PR, I am even more likely to sink into depression so the exercise and meditation is as important in keeping me mentally healthy, as physically healthy.

A new hobby / interest I’ve taken up since my diagnosis: The most significant thing I’ve learned or taken up since my diagnosis is learning about mindfulness and meditation. It has helped my mental and physical health enormously, and I use it in my work (teaching it to others), as well as in my daily life. I may not have decided to attend a course about meditation if I had not been trying to learn ways of managing my pain.

What living with arthritis has taught me: Living with arthritis has taught me many things. One of the lessons I’ve learned is to be grateful for the things that I have, and the parts of me that work, and not to spend too much energy on the things I don’t have and the parts of me that don’t work. I’ve also learned to live more in the present, than to spend too much time worrying about the future.

My advice for other people living with arthritis: Arthritis is one word to describe lots of different illnesses and everyone’s experience of it will be different. So my advice would be to spend time finding YOUR best way of living with it, rather than to think there is a ‘one size fits all’ way of staying healthy. Don’t give up trying new things – even if you’ve had it for years – and instead of fighting your arthritis (you probably aren’t going to beat it!), learn to accept and live with it. This isn’t the same as giving up. It’s simply recognising what your limitations are at the time, and making the best of it.

My biggest challenge/triumph has been: I was always so frightened of pain when I was younger. So my biggest challenge has been to learn to live with pain. There are lots of triumphs over the years, but my most recent biggest challenge has been to do a ‘crow’ pose in yoga. I can’t do it every time, and mostly I can only stay there for a few seconds, but this is a huge triumph for me, given that my wrists have been very weak due to the PR and flare a lot. Interestingly, they have flared less often since my yoga practice has intensified.

What gets me through a tough day: Some days are just tough! Recognising that some days are tougher than others and sometimes you just have to be EVEN KINDER to yourself and do whatever it takes to make that day bearable – even if that’s going to bed and crying!

How my friends and family help me: My friends and family help me  ENORMOUSLY by trying to understand, by offering to help when I need it, but not smothering me with help when I don’t.

This National Arthritis Week I’d like to say thank you to: everyone who’s been with me on this journey! That’s too long a list to type up now, but it includes all my friends, my family, my consultant, and my employer! Also, my yoga, zumba and pilates teachers for keeping my mind and body as healthy as they can be.

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9 responses to “10 things you may not know about living with arthritis

  1. Hi Ruth
    You blog post went down very well indeed on our Facebook page, beautifully written
    Thank you
    Sharon Kilty

  2. Hi Ruth,
    Your blog was a great piece information, and is easy to understand. I count myself lucky, that I don’t have the PR as bad as yourself and other people. I am able to control it with the Methtextrate at this stage, and I love your piece, where we have to learn to live and accept the daily challenges in our lives. Have read about a Breathworks and Mindfulness Programme going to be taught to professionals in Sydney. Australia in 2016. Hopefully, there will be a course starting near where I live.
    It is great that you have great family and friends that support you.
    All the best
    Pam Fisher

  3. Hi Pam, thanks for your message. Really glad to hear that Breathworks is coming to Sydney. hope it makes the programme more accessible. It has helped me enormously.
    take care,

  4. I have just today been diagnosed with PR at 66yrs of age. Concidering I have been suffering this condition which there wasn’t a name for for roughly 2yrs I think I have done well. This last 12mths has been a very trying time as I am now into mthe fourth episode of the worst pain and illness I have felt in a long time. Vomiting, fevers,pain and chronic diharea sorry will get back later. xx

  5. Hi Ruth
    I’m Eleanor, I’m 19 and I was diagnosed with PR in June last year. I have stumbled across your blog while looking for ideas for exercises to help make attacks slightly less gruelling. I might be searching in vain, but I’m hoping there are some home remedies that I will stumble across and be able to try.
    Thank you for writing about PR, it makes me feel like I am not alone! I will now become an avid reader of all your posts. 🙂

  6. I was diagnosed with PR and was on methotrexate and Humira for 5 years before I discovered the cause of *my* PR: cow’s milk. I’ve always been somewhat lactose intolerant and it seems that in the aging process (55 now) my immune system lost patience with my love of cookies and milk. Whenever I consume dairy, instead of merely getting gaseous, I have debilitating flares withing 24 hours.

    I have been off all meds for over a year now and am 100% pain free as long as I avoid cow’s milk. I have tested this many times and, like clockwork, I have a flare within 24 hours of drinking milk or eating cottage cheese, etc.
    Not only did this solve my problem but my aging mother, who was scheduled for spinal surgery for a sciatic nerve issue, abstained from dairy after I told her of my success and her surgery was cancelled. Her brother, also, had RA symptoms which disappeared the day he stopped dairy. Same for my sister and my daughter. RA has always run thick through my mother’s side of the family and every living relative from her side suffered RA or PR until this “discovery”. I know this isn’t going to be helpful to all, or maybe even many, but I know that the dairy/PR connection extends beyond my family because I was tipped off by a former PR sufferer who also found his cure in abstaining from dairy and it’s simple to test whether this will work for you.

    After being off meds for a year my energy level is nearly back to normal and I can exercise strenuously with no flares resulting.

    • For some people, diet is most definitely a trigger for flares. I wish it was as simple as that for me, but it doesn’t seem to be the case. I haven’t had milk for years (I know that I am lactose intolerant) and have periods of being completely dairy free, but flares aren’t really related to that for me. Gluten does seem to trigger fatigue and flares, but staying off it does not mean that I am free of symptoms. I’m glad it has worked for you though.

  7. Hi Ruth,
    I am so relieved that I have found your blog! I too have this disease, and when you write about your experiences I think, it could be me, so very, very similar. I am desperately searching for ways to manage my flares. I too am taking Methotrexate and Plaquinil, also have been given Prednisone but am super cautious about taking them!? I have just about come through 3 weeks of constant flares in multiple joints, well, I say that, but who knows if they have stopped flaring, I’m good this morning, cos I rested ALL day yesterday. I wonder if the Methotrexate is working, would it be worse if I stopped taking it? I can’t take the risk right now.
    I have never thought to try cutting out gluten or dairy though and will give that a try. Keep writing I need you 🙂

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