The importance of sharing our stories

Having a rare and little understood disease can be pretty isolating. Your friends and family don’t always ‘get’ what you’re going through and there’s no one to ask those questions that crop up from time to time about your experiences. Yet, it’s a lot easier now than it must have been before the advent of the internet.

Before the internet, if you wanted to find out anything about your disease – or the drugs you were being prescribed – you had to rely on leaflets handed out by your health care professional or go to the library to try and find out some more information. You had NO idea what other people were being prescribed, nor how well (or badly) they were dealing with their condition.

When I eventually found the Palindromic Rheumatism Society website, it was a complete revelation. I realised that I was NOT going mad, I wasn’t just a weird unique oddity and I was not the only person to have this experience. This was incredibly reassuring. There was more information about symptoms and treatment than I’d had from any medical professional. Even better was the site’s forum where I was able to read about people’s experiences – and share mine – chat to them online, and ask questions. Reading about other people’s experiences, and chatting with them online has been totally invaluable in helping me cope and helping me become more informed about PR.

My rheumatologist told me that my fatigue symptoms weren’t to do with my PR. Yet, so many other people around the world with PR did have issues with fatigue which was enough to reassure me that actually, whatever ‘the expert’ was telling me, he wasn’t necessarily right. Every single time I read about how someone’s flare moves from one joint to another overnight (or within hours), I feel validated. Every time I read that someone’s tried all the painkillers and nothing works for them either makes me feel less isolated – I’m not the only one this happens to. Reading about how people sometimes feel like they’re coming down with the flu – and then don’t – before a flare up or just from time to time, made a lightbulb in my head go off as I realised that I get that too – and it’s probably part of my condition.

Although there are support groups for people with arthritis in Manchester and an online forum on the UK’s Arthritis Care website, there’s nothing quite like connecting with people with exactly the same diagnosis.  Even though no two of us are identical, many of them do have symptoms and experiences that are similar to mine.

I’ve now discovered a quite active Facebook group for people with PR and that’s also connected me with more people, and this blog has too. Your comments have been so important to me. Connecting with others across the world just can’t be underestimated. We can compare notes about what’s worked and what hasn’t rather than just relying on the very limited body of ‘scientific’ research or on what our rheumatologist tells us. We can support each other through the hard times, and we can use the information we’ve gleaned from fellow sufferers and take that back to our medical professionals. Because, however many exams those medical professionals have taken, we’re the real experts on our condition. The more we can share with each other, the stronger we can be in coping with our own illnesses.

My hope is that eventually someone will think to use these groups and forums to do some meaningful research into our condition – and hopefully in the long run find some more effective treatments too.

Other useful forums and sites helping people connect

And if you’re on twitter (as I am), the hashtag #spoonie is being used by many people to connect

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8 responses to “The importance of sharing our stories

  1. My rheumatologist told me that the fatigue was common and often the thing people find hard to deal with! I’m lucky my PR isn’t too bad-it can be-most of the time but I find the wooly headed flu like feeling before a flare the worst thing.

  2. Good post Ruth and I think that the rumo’s don’t always understand the fatigue thing too well…. Mine accepted fatigue but I have pa not pr and also he told me I have the one I haven’t got….

    With Lynne re the woolly headed bit … yesterday I couldn’t remember what some things were called and what word I needed….. Thankfully its a bit better today.

    Hang in there and I really hope the fatigue will be kind to you cus I find it so hard to fight. Cris x

  3. charlotteb80@ymail.com

    I’m so happy I found this blog! I was diagnosed with PR about two weeks ago after almost a year of bouncing from doctor to doctor with pain and swelling. Recently my flare ups have gotten much shorter (1-2 days) but I’ve begun to feel feverish almost every day before and after a flare up. I keep thinking I’ve come down with the flu also but it never materializes. Has any one else experienced fevers/hot flashes, etc. not exactly during a flare up?

    • Dear Charlotte,
      Really pleased you found the blog. Sorry it took so long to get diagnosed, but it’s not that uncommon. Someone on the Facebook group had symptoms for 20 years before she got a diagnosis! More education needs to be done I think.
      Yes, I do occasionally get feverish or feel as if I’m coming down with the flu not necessarily when I’m in in a flare, but nothing develops, so you’re not the only one. Others on the facebook also report this. I also get a lot of sore throats which I think are the start of some sort of virus but also nothing progresses.

      I hope that now you’ve been diagnosed, you have a sympathetic team who can help with treatment and coping techniques. Good luck!

  4. Finally a place to get more information. I deal with the fatigue every day. I was diagnosed with RA when a blood test showed an elevated sed rate then the RF came back elevated. I got the blood test because I had woke up one morning and my voice was gone all of a sudden. I thought I was getting some kind of cold. It lasted days until I realized that I had no other symptoms. Just had no voice. So I saw an ENT. He said my left vocal cord was not working at all. So during all the tests he found RA but no cause for the lost voice. It lasted for 3 months before one day I woke up and my voice was back. No one could explain this to me. Anyway……fast forward 5 years and several flare ups when a new Rheumy said it was palindromic rheumatism. He even said that the joint in my throat was probably in a flare when I lost my voice. Never had a clue there was even a joint there. But there is. Look it up. What do you think?

  5. I hurt so bad. I haven’t had a flare in several years, but I fell off my diet for awhile, then a brown recluse bit me. Two days after that when I was trying to recover, I fell asleep with the air blowing and it set me off a double whammy again.
    What is scaring me is that I had all classic symptoms in the extreme, but I’m not getting better.
    My muscles are very sore and joints are a fire pain. I have never had a flare so bad. Am I burnt? Will it hurt like this from now on all the time? I think I might have come to stage 3 but praying I’ll get better and it’s not permanent. Do more advanced people’s muscles hurt from the joints all the time? It screwed wirh my gut. I had trouble tonight with indigestion I never have. I take care of myself and my family but if I’m officially turning to a pretzel I need to use the system for their sake, so I can get care stuff.

  6. So glad to hear you mention fatigue. We have a 2 year old toddler, no family support, and I am on a performance review at work. I’ve always had a problem with concentrating but it feels like it has gotten worse with the PR. No one really understands the feeling of tiredness and how it affects my ability to focus on my work. Added to that I seem to get random high temperatures but not necessarily severe joint pain associated with it. Does anyone else have similar experience?

  7. I got PR when I was 33, though it was misdiagnosed as fibromyalgia until I was 50. I’m now 63, have had the condition for 30 years, and have never met a single person face-to-face who has it. The years of the absolute most pain were age 48 to 60. My attacks progress very quickly from nasty to excruciating. I’m infuriated by the words YOU DON’T LOOK sick, and by the fact that no one gives a damn that I’m in some degree of pain almost all the time. I use prednisone, and sometimes also plaquenil. Used to have codeine too, until insurance stopped paying for it. Don’t know how we get people around us to pay attention. I’ve been failing at that for 30 years. But I do yoga, aerobics and a little muscle training. It all hurts every minute, but I have this belief that I’d be even worse off without the exercise.

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