The Story So Far

The first flare up that I can really remember happened sometime in April 2004. My middle finger was really really inflamed, stiff and painful. I couldn’t remember doing anything to it at the gym, but perhaps somehow I’d injured it? As it got worse during the day, I wondered if I’d managed to break it and not notice? I even went down to A&E to get it checked out.

Nothing really happened after that for a few months until the summer. I noticed that I was getting really bad pains in my fingers, wrists and hands. It was worse in the morning and sometimes it was so bad, I couldn’t type or hold anything. It wasn’t around permanently, but it was pretty persistent.Β  Eventually, (after about six weeks of pain and weird flare- ups) I decided to seek help. After a lot of insistence, I managed to get referred to the rheumatology department of my local hospital. I saw, what must have been, the least sympathetic consultant in the world who told me off for “panicking” and asking for a referral after only two months of having symptoms.Β  After all, some people are in pain for ‘years’ before they seek help, he said – somewhat unhelpfully.

Although I didn’t get a definite diagnosis there and then, he did tell me that I did have symptoms of arthritis – and that it could be rheumatoid, but we’d have to wait for the blood tests to know for sure. When I asked whether there was any dietary changes I could make, he snapped at me again. “Just don’t eat lots of cream cakes and get fat!” he said. hmmm. helpful.

The first year was probably the worst. My blood tests were free of any rheumatoid factor (a good thing), or inflammation markers (also a good thing), but it also made me feel more confused about what was going on. Although I had been diagnosed with PR, no one actually told ME that diagnosis and so I was unable to do any research or learn more about what I had.

Some of those early flare ups were pretty terrifying. I was single at the time and when it was bad in my hands, I had trouble with doing the most simple of things – opening a can of food for example. I hadn’t yet learned to ask for help from my friends and I felt very alone and isolated. The acute attacks were the worst. I remember sitting up in bed one night, the pain in my shoulder too sharp, too piercing to sleep through. Pain killers weren’t making an iota of difference and I sat, crying my eyes out, debating whether to go to A&E to ask for morphine or something to make it bearable.

By the morning, like many of my flare ups, the pain had calmed down, and by lunchtime, it was gone completely. The curse of PR is also its blessing. The pain can be in one joint one day, and another one entirely on the next. It can be chronic – lasting for weeks (but in different joints each day) or acute and last for mere hours. It can arrive when you least expect it and leave just when you think you can’t bear it any more. It is a strange condition indeed.

I’ve now had PR for 7 years and it’s become part of my life and part of my identity. I can go weeks without flare ups, though generally I will have some kind of pain every week.Β  I went on a very helpful “mindfulness” course for people living with long-term conditions where I learned about acceptance, about pain and about meditation. All have been useful. I have less energy than I used to, before I was diagnosed and have had to try and do less – though I find that very hard. It’s also quite hard to pace yourself when the warning signs only make themselves known when it’s too late.

Things I’ve tried

  • I’ve been on hydroxychloraquine for a number of years. When I initially started taking it, my flare ups did reduce (though they did not disappear). My consultant concluded that it MAY be helping, but it could also be a coincidence! The variation in my condition means that it’s so difficult to make a direct correlation. When I stopped taking it for a while, I did get a flare up in a finger that lasted three months and could have started causing damage. So, perhaps it’s stopping me getting worse, if nothing else.
  • I did try sulfasalazine but it just made me so tired that I could barely get out of bed.
  • Thus far, I haven’t found a combination of pain killers that either touch the acute pain at all, or make much difference to the chronic pain either.
  • Heat patches give a small amount of relief – taking the edge of the pain when it’s in my shoulder.

Things that definitely make it worse

  • Lack of sleep, overdoing it, very late nights – all make it more likely that I’ll have a flare up . I know I’m out too late when my fingers start stiffening up and aching.
  • Extreme humidity ain’t good for it either – I had a very acute attack on holiday in Indonesia in September, and I’m sure that was the reason why.
  • While damp weather may not help, it doesn’t necessarily follow that I will have an attack when it’s damp, raining or humid. Change of seasons are usually bad for me.

18 responses to “The Story So Far

  1. I lived with pr pain for about 5 years befor finally getting diagnosed with pr. My 1st time experiancing pr I had just the week befor broke both my ankles in an accident at work (metal screws were put in one ankle) Since the pain was in my shoulders I thought it was just being in a wheel chair that caused me to strain muscles. As time went on the pain go to my hands and wrists.Finally last year one day I noticed a pain in my left hip. It got worse as the day went on and by the next morning I couldnt even stand up, so off to the ER I went. After an MRI it was determined I had a joint infection. So off to surgury I went.The next day no pain and I was walking around like nothing was wrong, the surgon was amazed at how well I was doing. As a small army of doctors from severl areas of specialtys ran their test to try and find out why my hip was infected I began to notice my right hip starting to hurt. Well by nightfall I was back in surgery to clean out my other hip. Now the doctors were really confused. They tested me for every thing from aids to cancer, infectius disese doctors were trying to figure out what the infections were, there was CT scans ,sonograms , lots of interviews and a mountian of blood work. Still nobody had a clue. This went on for a week to no avial. ON my last day at the hospital I was waiting for my discharge paperwork when my right hand started hurting and swelling. The rheumatologist had to come by to fill out her share of paperwork to release me when I showed her my hand, she thought I had injured it somehow, when I explained to her this had just started an hour ago she did some more bloodtest. I was finally discharged late that evening. It took so long because ther were about six different specialist who had to finish their paperwork on me and noone could come up with a diagnoses, Finally they setteled on psuedo gout. A week later I was contacted by the reumatologist with the PR diagnosis. So 5 years of pain and 2 hip surgerys that come to find out were unnessasary this is where I am. I recently had the hardware removed from my ankle and I have noticed the flare ups are farther apart and far less painful. Did the metal in my ankle have something to do with this, since this all started 1 week after it was placed in me?

    • Wow, what a complete palava you went through! I can’t believe how many specialists became involved. It really does illustrate how important it is to better educate all of the medical profession about this condition. It’s so hard to know what the cause of it is. They do say that auto immune disorders do often happen after trauma or big life changes, so perhaps the accident was behind it rather than the metal itself? the ‘experts’ know so little about this stuff though. Glad to hear that the flare ups are further apart and less painful. Mine are definitely milder than they were when it all started 9 years ago. But sadly, they are not disappearing. 😦

  2. Thank you for your reply. I agree with you on how little the medical profession knows about this.Every doctor I have talked to gets this glazed over look in their eyes when I tell them of my diagnosis and with a few exceptions I get the honest reply of they have never heard of it.

  3. My god, I’m shocked at the horrible things you all have gone through. I’m in Maine, USA and I had my first episode with PR in 2006. I went to a walk in clinic and the physician assistant was amazing and was sure he had heard of this, grabbed a big book on arthritis and told me he thought it was Palindromic Rheumatism and I should see a rheumatologist. After my first appointment with my rheumatologist, he confirmed it with tests. He has a few patients with PR. I was put on Plaquenil and have never had one episode again! I have fatigue, joint pains and so on and overall achiness at times but never an actual situation like I had before Plaquenil. My first time I think it was my thumb and hand on my left hand, after that went away, it was my right knee for a few days, then I think it was my left big toe and foot. I’m thrilled to never have that pain, redness, warmth and swelling come back like it did back then. However, I have been tested and it does look like the future may show rheumatoid arthritis. I noticed in early november I went away for a weekend and 2 days forgot to take my pills. Almost the whole month of November I was in general feeling terrible but still, i really can’t complain after what you’ve gone through. I also had problems with my left foot just being sore all over. My doc said possibly it’s the PR. 2 weeks ago I stretched out my leg and got a sharp pain in my left foot and could hardly walk, It was not swollen or red or warm. A walk in clinic said maybe it’s due to the PR or maybe I pulled a tendon and they gave me crutches. The following thursday it was better (after resting, icing, elevating and ibuprofen for 4 days), my doc said same thing. It was better, then Wednesday night I was walking up the stairs and again, extreme pain in my left foot and could hardly walk. I’ve been staying off it now as much as possible and seeing my rheumatologist April 4th, thinking of seeing an ortho foot doc just to have him see if it’s a tendon or what. not sure what to do.

  4. I’m a 28 year old and believe i have PR. All of the symptoms you all describe is whats going on with me. Red patches where the pain is. Started in my shoulders and now it travels around my body of its own accord. Ibuprofen seems to do nothing, Paracetamol and Codeine help but leave side effects 😦 had it for about 6 months now and probably get one flare up a week. so many people are amazed that this can happen to someone of 28, but i hear they say it’s never too young to get something like this. if anyone knows of any tips that can help…please let me know.

    • Thanks for getting in touch. Different things seem to help different people – I haven’t found anything that actually lessens the pain, though meditation does help me cope with it. I think it’s important to get a referral to a rheumatologist, so that you can get a diagnosis and start looking at some treatment – the disease modifying drugs DO help some people. I would be worse if I wasn’t taking hydoxychloraquine, even though I still get flare ups, they were a lot more severe when I wasn’t taking it. Do come and join us on the Facebook page as lots of people are sharing tips there – and we’re all different ages and from all over the world too.

  5. I was originally diagnosed with sero-negative inflammatory arthritis two years ago by a rheumatologist after a lot of too-ing and throwing to GPs and being made to feel it was all in my head. My blood tests showed no inflammation and absence of the rheumatoid factor-therefore nothing was wrong. I was put on Methotrexate by the specialist which made all the acute pain I was experiencing initially subside. However I was having and still have excrutiating pain palindromic style: of not being able to move my arms, painful wrists, locked jaw, knees sore, feet painful.When I raised this at my appointment with the Rheumatology nurse she told me to be more positive, put on some make-up and besides my blood tests were normal so there was nothing wrong with me!!! The rheumatologist has finally acknowledged that I have palindromic arthritis and has taken me off methotrexate, because quite correctly it wasn’t helping. However I am now discharged from his care and feel abandoned and scared. As others have said pain medication doesn’t really help and I’m so fed up of being tired and not being able to do the stuff I want to do. I’m not sure if my husband really understands and I think he thinks I’m a killjoy. Life feels a bit of a struggle. (sorry to sound so self pitying but I’m in the middle of an episode and writing this from my bed.
    Does anybody know of any specialists in Palindromic Arthritis? I’m based in London. I would love to talk with a doctor who knows and understands and doesn’t make me feel it’s all in my head!!!

    • So sorry that the health professionals who are supposed to be helping you are being SO unhelpful and sympathetic. It’s awful that they still persist in insisting that, if there’s nothing in the blood, there’s nothing wrong, when we KNOW that’s not the case. And it’s really awful that the nurse told you there was nothing wrong with you. Where’s her compassion?!
      Life feels like a bit of a struggle, because it IS if you are living in daily pain with an illness that isn’t being treated. I wish I could help by recommending someone, but I’m afraid I don’t have any idea about any decent specialists in London. But then I don’t think there are ANY actual specialists in Palindromic Arthritis anyway!
      What I would recommend that might help you live with things right now is a new book I’ve just bought. It’s called Mindfulness for Health and is written by the woman at Breathworks, which is where I learned how to meditate and be mindful – which is something that has helped me enormously. It doesn’t make the pain go away, but it does make it easier to bear and it’s a really easy-to-read book and includes a free CD of the meditations. Both of the writers have lived with chronic pain and so are also talking from experience.

      http://www.breathworks-mindfulness.org.uk/mindfulness-for-health-book

  6. Hello Ruth, Thanks for getting back to me so quickly and for your words of support. it’s very easy to feel isolated which is why blogs like yours are so helpful. It’s also nice that you’re in England! It’s funny how things all seem to congregate at once because you are now the second person to mention meditation and the book sounds great. I really have no excuse now!

  7. And I’ve just ordered it-I’ll let you know how I get on…

  8. Anya – I’m so sorry you’re being made to feel like it’s in your head. That was suggested to me, and I know how you can start to feel like you’re losing it!

    Sometimes I feel really lucky that I first went to my GP with an active flare up in my finger that also appeared with redness on my skin. Maybe a silly recommendation, but I would suggest going to the doc with active symptoms every time that you can (I know, unpredictable, but it helped that I had access to walk-in clinic here in Canada). The GP thought I could have RA but at least thought it was worth investigating enough to go for blood tests and get a rheumatologist appointment. Lucky me, I have high rheumatoid factor and high anti-CCP, so my results were obvious once I did get to the specialist. But perhaps if you can try to go while presenting outward symptoms, that may help your journey ever so slightly in getting someone to take you seriously. Don’t give up on demanding referrals to someone new who might listen to you! Just FYI I’m also taking hydroxychloroquine and I think it really helps.

  9. Thanks Alicia. Sounds like a plan! As we all know the nature of the beast is its unpredictability which does make it difficult. I will also ask about hydroxychloroquine-are there any side effects? I was delighted to come off methotrexate because it made me feel dreadful, but am starting to feel the impact of that. so the reality is that I will probably need to be on medication. However on a positive note, I have just started working through the mindfulness book that Ruth recommended. Let’s hope!

  10. Hello

    Thank you for this blog, I got diagnosed with PR last year after a very stressful year, I started with swellings In my wrists that got very painful over night then went away again, thought it was RSI and dismissed it. Then my hip started hurting and my hand whilst I was in London this very week last year. Felt so old and a freak but tried laughing it off as I hobbled home after an incredibly painful night where I was determined not to show how much pain I was in to my friend on her 30th birthday.. It was scary but again just thought I was getting old:) but after going away it came back again in my hands, to the point where one night I couldn’t get out of bed to get codine or anything, I eventually managed but then couldn’t open the tablet packet or lift a glass of water to take the tablet.. Was very scared at that point and phoned the doctors first thing to get an emergency appointment. I luckily took photographs of the swellings and the ones on my hand hadnt completely gone down by the time I made the doctors. They referred me to a rheumatologist who took loads of blood tests.. But no luck until I saw the leading professor who diagnosed PR in march this year.

    the swellings stopped in November and i have had only one or two flare ups over the past year. But my hands hurt so much in the cold and body aches alot on cold and wet days. I think I have had it some time but not realised it. Had tons of problems with my shoulders and neck being in pain in the past, and now have regular days where I’m soo tired and my brain is foggy.. 😦 It’s so stupid and I feel so guilty at work like you say about saying I need to go home I feel to tired.. The weather has turned here now and it’s started again after a relatively good summer where I felt me again.. I’m shattered and my hands are hurting, and skin really sensitive to the touch.

    Thank you for sharing your blog, I refuse to let this rule my life and I am determined to make the most of the days I’m ok πŸ™‚ our life has hurdles with PR but it makes us appreciate the good days too. I’m tough and I refuse to let this take the best of me ( I say smiling and crying at the same time πŸ™‚

    Thank you for your blog it’s helped me today, the realisation of a possible painful winter ahead isn’t good but hey ho won’t beat me:) xx

  11. Hi Carolyn, It sounds like you’re having a tough time-PA is tough and life can be a real struggle. but well done for noticing the positives and hanging onto those. You mention being referred to a leading professor-do you mind sharing his/her name and where they are based. I don’t know where you are based but you mention London. I am going to have to go back to a Rheumatologist but want to try someone different who knows a bit more about our condition. Hang on in there!

  12. Pingback: National Arthritis Week | My Palindromic Life

  13. Hello,
    I just came across your blog today and I am enjoying reading all of your experiences and other peoples as well. I was diagnosed with palindromic rheumatism this summer and the pain started about two years ago. It’s been very random attacks and in quite a few of my joints. It started in my fingers, I’ve had it in my knees, left ankle, left shoulder, right hip and just recently my left elbow. The pain has come on at very inconvenient times, once coming down from a mountain during a hike and right before a four day backcountry snowboarding trip. I’ve found this to be the most difficult part is not knowing when the attacks are coming and I’ve become very frustrated with this fact. Because it’s so random and different from one person to the next I’ve found it difficult to find great information on things that have helped people or just anything worth trying to prevent it. I love your idea about keeping a journal, I feel like being in tune with your body is very helpful. I live a healthy lifestyle and want to try the most natural ways as possible to help my body prevent/cope. If you have any tips that are not already written in your blog, I would greatly appreciate it!
    Thank you,
    Samara

    • Hi Samara,
      Sorry to hear you’ve been diagnosed with PR. The unpredictability is really the toughest to deal with – psychologically and physically. It’s really annoying having to cancel things you’ve looked forward to, or feel that you’re letting people down when you’re not well enough. But it sounds as though you’re pretty active and still able to be, so that’s incredibly positive I think. I haven’t really got any other tips. the Facebook page is well used and people do share tips there. I sometimes find that a sore throat can be a sign that a flare is coming. but other times it really is completely without warning and seems so random.
      I use heat patches to help with the pain, and use massage oils as well. They don’t really do all that much, but I find it comforting.
      Good luck.

  14. It was the winter of 2015 in Australia when I had my first flare.

    Picture those white medical gloves filled with water. Those were my hands. Round, white from being stretched across the joints and containing so much fluid it hurt to bend any part of my hand.

    Now, my mother suffers from Rheumatoid Arthritis so I automatically jumped to this as my condition. I did all the right things, went to a specialist with my mother dearest, had the blood tests, and low and behold something stood out.

    My first flare lasted just under two weeks and I had no idea what this Palindromic Rheumatism was they spoke of. It wasn’t just the pain, but it was the fatigue and the concept that my body was attacking itself that made me so miserable. They put me on Plaquenil and 6 months later, two car accidents later, a skin discolouration across my face and months of nausea I went off it.

    There is still so little I know about this condition, but what I have come to learn is how I can so quickly identify when cold weather is hitting us as the joints start to flare up, and that plenty of rest and Vitamin D is key.

    I’ve watched my mother suffer from chronic pain, as full blown Rheumatoid Arthritis is much harder to live with, but heres hoping I can continue to learn more about these conditions.

    I am currently experiencing another flare which prompted me to read more, especially as I broke my wrist last year so close to the joint and it hurts so much I thought I’d rebroken it. Coincidentally, it is raining outside and the temperature has dropped a good 15 degrees in the last day so yay for flares!

    Selfishly, it is somewhat comforting to read other stories as it makes me aware of how other people manage these conditions so thank you for this blog.

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