Arthritis is not just a physical condition

I haven’t blogged since December 2014! How did that happen?!

Mostly, it’s because I’ve been too busy, rather than too ill. I’ve been loving my work at Manchester Mind, though it does keep me pretty occupied and sometimes a bit stressed too. However, the fatigue and flares have been manageable, and I’ve not had to take any time off because of my arthritis so far. I’ve continued to stick to the gluten free diet, though I’m finding staying off the sugar slightly harder to stick to these days. Overall, however, I think I’m doing okay.

I’ve even managed to start trying vigorous and athletic styles of yoga and been shocked and amazed by what my body is actually able to do. I’m building up my upper body strength and even managed a headstand unaided at last week’s class.

So overall, life with PR is pretty positive at the moment.

But what I did want to write a bit about is a new development in my work which I’m pretty excited about.

Living with palindromic rheumatism – or any type of chronic condition – isn’t just as simple as living with the physical symptoms. The flares, the pain, the restrictions and the fatigue also have a psychological and emotional impact and this isn’t often taken as seriously by medical professionals. When the consultant asks how I am, he is interested in how bad my flares are, and whether there’s any joint damage. He’s not generally asking how I am coping with my PR. Coping with the unpredictability, with the chronic pain, the lack of sleep, and the fatigue isn’t always that easy. I think that sometimes the psychological and emotional impact of the condition can be even harder to deal with than just the physical symptoms. A friend with rheumatoid arthritis told me that she wished she was told when she was diagnosed that it wasn’t just a physical illness she had, but a mental illness too, its psychological impact has been so profound at times.

More than once, I’ve phoned the rheumatology nurse, or Arthritis Care Helpline  in tears. It might have been after a disastrous appointment with a consultant who hasn’t taken my symptoms seriously or just during a long flare when I’m at the end of my tether from lack of sleep and constant pain. The early days were particularly stressful and upsetting – when I didn’t know what I had, what to do about it, or what was going to happen to me. I didn’t have any coping skills, and it felt as though no one really ‘got’ what I was going through. It took 8 years before I was even referred to a pain management clinic – by which point I’d already learned the most useful tool I was ever going to learn – meditation and mindfulness.

Life can be stressful enough without a chronic condition, but throw in an unpredictable and little understood invisible illness which causes chronic pain, disability and fatigue, and stress increases massively. I can point to plenty of different stressors. There’s the frustration of not having any effective pain relief when I’m flaring. The stress of the pain and lack of sleep. The disappointment and frustration of having to cancel on friends, or having to take to bed from fatigue. Even people trying to help by offering ‘helpful’ suggestions or commenting “but you don’t look ill” can be a frustration and a stress. There’s also the stress of the financial cost of living with a long-term illness, and in the current economic climate with a whole raft of disability benefits being cut, this is a huge stress for a lot of people.

In the early days, I was often very low, worrying about the future or giving up on certain dreams. Sometimes I still spend a lot of time just wishing I didn’t have this stupid darn condition. Of course, wishing things were different uses up and wastes a lot of energy, and it’s something that happens much less since I discovered mindfulness. But it’s still something that I have to revisit time and time again and work on – the transition from resistance to acceptance. After all, why wouldn’t you wish you didn’t have a lifelong condition that probably wasn’t going to be cured?

One thing that’s been really rewarding for me over the past year is my job for Manchester Mind, which is running a ‘resilience’ course for people with diabetes or heart disease. The course teaches people cognitive behavioural and positive psychology techniques and introduces meditation and relaxation and stress management techniques too. It has really helped some people and I’m really excited because now we’re going to be offering the course to people with arthritis too.

I think this is hugely important. We don’t get taught these skills at school, and unless we are referred to a therapist or counsellor by our GPs, or gone of our own accord (not always affordable for many people), we don’t learn them as adults either. We don’t get taught the importance of relaxing and of deep breathing, and we don’t learn that we don’t have to believe the negative self-talk that can often drag us down into a pit of depression. We don’t learn that accepting pain and illness can be more beneficial to our mental health than trying to resist it. (This doesn’t mean giving up – a longer post is needed to explain this more fully!)

Teaching people these techniques and seeing them learn from each other, and integrate relaxation and meditation into their lives hasn’t just helped them cope with their conditions – it’s helped me with mine. And it’s not a case of such courses or techniques only appealing to a certain, narrow age range. The youngest person I’ve had on the course so far, is 20, the oldest 89. They’ve pretty much all said that they’ve learned something and it’s helped them in one way or another.logo

Thanks to some additional support from Arthritis Research UK, from July Birmingham Mind, and Manchester Mind will be extending the Building a Healthy Future course to anyone with arthritis. It’s completely free. It won’t make your pain or your fatigue disappear, but it will help you cope with all the extra mind stuff that comes along with a diagnosis of arthritis.I’m so happy to be involved and know that my work can help people with diabetes, heart disease and now arthritis too.

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8 responses to “Arthritis is not just a physical condition

  1. It is so nice to get a new post.
    I have Palindromic Arthritis as well. I know you said you tried low dose antibiotic therapy and it did not work for you but you may want to reconsider. It it started in April of last year and it went on until February of this year. Travelling pain and swelling. Days where I could not walk up the stairs or even dress myself. Not to mention the sleepless nights crying in pain. Yes you are right….they don’t understand. Anyway good news I am much better, my inflammation markers are less than half. To my doctors reluctance she allowed me try the minocycline (after doing my own research) even though what I was originally prescribed was Methotrexate. I just went for my appointment and she was pleasently surprised. All I experience in the form of pain is a little stiffness mainly in my arms and hands. We are starting the process if weaning me off. Also before I forget she had me take the Minocycline everyday which made me worse so we followed Dr Brown and went to three times a week.

  2. Really happy to hear you’ve found antibiotic therapy has worked so far for you. I gave it a good go – six months or so – but there was no difference at all. Good luck! It’s a weird one this PR. If only there was one thing that worked for all of us, it would make life a helluva lot easier for us – and our consultants!

  3. Penny and Ruth – I have been a PR sufferer since 1999, although it wasn’t diagnosed as such for several years. I’ve been through the whole regime of drugs, finally ending up on methotrexate 20mg/wk, with NSAIDS and painkillers for when flares still occur – which they do to varying degrees.
    I would dearly love to convince my rheumatologist to let me try the low-dose antibiotic approach to see if it has a more beneficial effect. At best my current use of methotrexate may be reducing long-term damage or delaying the onset of full RA, but it’s certainly not reducing the flares, either in intensity or in frequency.
    May I ask what was the evidence you provided that convinced your doctor to allow you to try minocycline? I have done some online searching and come up with quite a lot, but I wondered if there was a ‘clincher’ that you found useful?
    I realise it doesn’t work for everyone but it’s got to be worth a try!

  4. spot on Ruth! all you say applies also to migraines. the pain and vomiting is one thing but the dread of another attack is worse. When will it come ? what will i have to cancel again? the feeling that people do not believe you and of course the total inefficacy of the so called “specialists” who are only interested in prescribing horrendous medicine that don’t work anyway. There is a lot to say about managing our condition ourselves. I have found sharing with others on a special Facebook page very useful!

  5. So glad to hear of these courses – such an important aspect of any chronic disease, and almost always overlooked!

  6. Hi Ruth,
    I have only recently discovered your blog and am getting a lot out of reading it – I keep going back to it whenever something new occurs to me! I was initially diagnosed with PR in 2008 and then discharged as I told the specialist I was managing without medication, in 2009….he helpfully told me to come back to him when RA had developed. I have been managing on my own ever since with occasional trips to the gp for my clicky neck and persistent pins and needles in my leg – neither of which was put down to PR and, to be honest, I didn’t make the connection myself either. I have had recurring low grade pain over the years and one or two flares, but they don’t really present like most people’s PR seems to in that they last quite a while in one place before disappearing. However, in the last three weeks, I have suddenly got multiple flares – right side of neck, left foot, right knee, left wrist and the finger on my left hand, all of them lasting a while. The trouble is that I live in Guernsey and we only get a specialist visit from the mainland every two or three months….I can’t even seem to get through to the nurse on the rheumatology helpline. I’m trying not to panic, but all this is scary on your own, as I’m sure you and lots of others know. I will carry on phoning this afternoon…..

  7. Hi Ruth,
    I have been reading your blogs, and found them very inspiring and reading all the comments. Thank goodness for internet to be able to read all the stories. I feel this has helped me understand PR , although I have mild flares, according to the painful episodes you have been through. I was diagnosed last Oct 2014,and realize I have had these symptoms on and off for the past 30 years . Have been put on methotextrate, which has helped a little bit. Main flares are in right hand, elbow, and knee.
    Hope your flares not giving you too much trouble.
    From Pam on the Central Coast NSW Australia

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