RA – it’s not ‘fair wear and tear’!

May 4, 2012 at 9:20 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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One of the many things people with rheumatoid arthritis battle with is the many misconceptions around the disease, the most ‘popular’ of which is that ‘arthritis is wear and tear on your joints’. One of the reasons this misconception is so hard to grapple with is that it’s true – sometimes. There are many, many kinds of arthritis – all arthritis means is joint inflammation. It comes from the Greek arthron (arthretes or similar depending on which dictionary you look in!) for joint, and –itis, a suffix used to indicate inflation, so it means inflamed joint.

What the word arthritis doesn’t tell you is why the joint is inflamed, and thereby hangs a tale! It gets even more confusing because arthritis tends to be split into the many kinds of ‘inflammatory arthritis’ on the one side, and osteoarthritis, which (is ‘wear and tear’ though by no means always fair!) on the joints, on the other. And yet arthritis means inflammatory, and of course osteoarthritis can cause some inflammation too, so it makes it even harder to explain the differences simply.

Perhaps the most important thing is that however unpleasant, debilitating and downright painful osteoarthritis is, it affects the joints and only the joints. Rheumatoid arthritis and the other related autoimmune diseases are just that – diseases, aka illnesses, and can affect considerably more than your joints.

The difference in a nutshell

Osteoarthritis (also known as wear-and-tear arthritis or degenerative joint disease) is caused by the cartilage between the bones in a joint wearing away or breaking down.  The cartilage basically sits between the bones of a joint and stop them rubbing together. When they do rub together because the cartilage is worn away it can cause a great deal of pain and debilitation.  It often (though by no means always) occurs in one joint, and may be a joint that has been used a great deal e.g. a blacksmith getting osteoarthritis in an arm joint.

Rheumatoid arthritis on the other hand (and that’s the one I’m going to talk about because it’s the one I know, as I live with it every day) is a chronic, progressive, inflammatory  arthritis. Chronic means long-term, it’s there and, in this case, it’s not going to go away. Progressive means without treatment it’s likely to get worse. It is an autoimmune disease, whereby, for reasons not yet understood (though theories abound) the body’s immune system attacks some of the body’s own tissue instead of (or as well as) invading bacteria etc.  In rheumatoid arthritis (RA) it is the synovium (joint lining) that is the main target of attack, but many other organs can be affected too.

Spot the difference

Even doctors find this one tricky, which is why RA can sometimes take a very long time to diagnose. Another problem is that RA seems to crop up with infinite variety; just about every patient ‘presents’ differently when they go to see their doctor. Some things to look out for though are:

RA will almost always occur in more than one joint at the same time

  • RA will often involve obvious swelling around the joints
  • RA will often involve obvious redness around the joints
  • People with RA will often find joints extremely stiff first thing in the morning, with this stiffness wearing away gradually over a period of an hour or more
  • People with RA will often feel unwell, with a kind of general ‘don’t feel good’ feeling including tiredness, headaches, lethargy and fatigue
  • RA apparently often occurs ‘symmetrically’ – i.e. if you have it one hand, it will also occur in the other. If you have it one knee, it will crop up in the other one too.
  • RA frequently affects the small joints – those in the hands and feet, whereas osteoarthritis often affects the larger joints.

But see all those ‘often’s and ‘almost’s? That’s why it’s so hard to diagnose! The worst of my RA, for instance, has been in my knees and shoulders, so I don’t fit the ‘small joints’ pattern, although it does all affect hands and feet.

The good news as told by Pollyanna Penguin

 If you have osteoarthritis, short of joint replacement and painkillers there’s probably not a lot you can do about it (although maybe glucosamine helps in some way – the jury is out!) If you have rheumatoid arthritis there are treatments available. They are many and varied, and some work for some people and others work for others and you’re really incredibly unlucky they won’t work  for you ; if you’re new to this whole RA thing, don’t panic when you read the blogs all around the RA community. There are hundreds of people out there whose RA is under really good control through drugs and/or other treatments, and as a consequence they consider they have better things to do than blog about arthritis! So those of us who blog tend to be the unlucky ones – although of course there are exceptions. I’m on the fence here – I’m a lucky one – things are pretty much under control, and I only blog once in a while when I have something to say or those nice folks over at IAAM ask me to!

There are many medical treatments out there, and there are new ones coming out quite often too. The new ones, largely ‘biologics’ tend to be very expensive at the moment so your doctor will probably start you off on some of the older ones, which are ‘cheap as chips’ as one of the rheumatology nurses at my hospital put it. I’m on that old stalwart methotrexate. It’s the most commonly used drug I think, it’s certainly ‘cheap as chips’ these days, and for me it really works. Some people have nasty side-effects from it though, and for others it just doesn’t do the job. If that’s the case then it can be tried in combination with other things, or you might be moved on to one of the spangly new biologics.

You might, of course, opt to go for a non-medical treatment. My personal belief is that it’s a good idea to get things under control with medicine and then use other things such as physiotherapy (physical therapy is the US translation!), occupational therapy, acupuncture if you think it helps, dietary things etc. added on top, because I believe that this is a progressive disease and that these various medications, although they won’t flat out cure you, can and often will stop the progression, which is hugely important. Other people disagree and use complementary therapies, which seem to help them. It’s your choice – but please, just do your research before you decide!

Support

So, it’s not all doom and gloom – anyone with RA (or osteo for that matter) would rather not have it, but there are things that can be done, and there is also support out there, from NRAS and Arthritis Care in the UK, the Arthritis Foundation (and others I’m sure) in the US and UK, and now from IAAM, the International Autoimmune Arthritis  Movement. IAAM are doing a lot to increase people’s awareness and understanding of what autoimmune arthritis (RA being one kind of that) is, and I’m proud to be a member and a ‘blog leader’ for them. They have  established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20th, online and during all time zones, making it a 47-hour online event!  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help people with autoimmune arthritis and their supporters in managing their diseases. WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!

World Autoimmune Arthritis Day  (WAAD) website link- www.worldautoimmunearthritisday.org

WAAD registration link- http://events.r20.constantcontact.com/register/event?llr=0&oeidk=a07e5n7i1aq5f98d0e9

Happy Birthday

And what’s more, it’s IAAM’s first birthday on May 7th. Slightly in advance Happy Birthday to you, Happy Birthday to you, Happy Birthday dear IA(AAAA)AM*, happy birthday to you.

* Can’t sing it properly without some extra As!

Seeing RA under every stone

February 8, 2010 at 10:36 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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Is it me, or do others with rheumatoid arthritis see RA possibilities everywhere? I’ve told my bro, who has had neck pain for years and gets inflamed knuckles, that he really should get an RA test, even though it’s incredibly unlikely in a lad his age. (Unlikely but not impossible, as Rhuematoid Arthritis Guy can testify, and not an unreasonable suggestion given that he’s my brother and we do have family with RA.

However, it starts to get a bit silly when you’re sitting chatting to someone and start thinking ‘ooh, they get stiff in the mornings; could be RA.’ Well yeah, I have to remind myself, but when they say stiff they probably mean their muscles ache a bit because they went jogging last night, not that they can’t move their joints. But then again, RA is notoriously hard to diagnose, so when you’re sitting in the OT’s room chatting to another patient who is being treated for ‘carpel tunnel syndrome’ in both wrists, has been referred to the podiatrist because of pain in both feet, finds it hard to grip the steering wheel for any length of time, gets ‘dead arms’ in the middle of the night just like I do and finds it difficult to be a passenger even in the car for long journeys because when she gets out she’s ‘stiff all over’ … oh yes, and this all started with ‘the change’ … you can’t help wondering, can you? Or can you? Is it just me?

It’s hard to keep your mouth shut sometimes, but I managed it. For all I know she’s been thoroughly tested for it and hasn’t got it, but I couldn’t ask; I’d never even met her before that day. It makes me wonder even more because when I was diagnosed with RA I’d gone to the doctor saying, ‘Help – I think I’ve got carpel tunnel syndrome!’

I suppose I shall never know, and I really hope I’m barking up the wrong tree altogether, for her sake … but I can’t help wondering. Am I being silly?

The ramblings of a bewildered and broke Penguin

January 19, 2010 at 11:35 am | Posted in rheumatoid arthritis (RA) | 10 Comments
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Firstly a ‘big shout out’ to Warm Socks for reading comment replies. Well done to you,  m’dear! I also read them when I remember to tick the little box, but I usually don’t remember.

Secondly, for them as don’t keep up with comment replies, like me, tinglywinglypingly is a thing of the past – hurrah.

Thirdly, I had my methotrexate last night and, unlike last week, not only kept it down but slept like a log afterwards and feel great today. Middle-sized cat is also delighted, as he tends to sleep next to/on top of me, so he also got a good night. After a trip to the V-E-T yesterday he’s now costing me about SIXTY POUNDS A MONTH in medication … but of course he’s worth every penny, and more.

Hey ho – it’s only money … not as important as health.

I obviously value him more than NICE values me, or rather values other R.A. patients who are not so lucky as I am currently! This article in The Guardian tells an all too familiar story.

Tocilizumab (another biologic), which costs £9,000 per patient per year (so about the same per month as middle-sized cat costs me per year … but then consider the difference in resources between lil’ ol’ me and the British government … on second thoughts, maybe not; I’m not quite broke yet), is being given to patients in Scotland (and indeed most of the rest of Europe), but NASTY has decided once again that it’s too expensive for patients in England. And once again the fact that it could keep people in work and reduce the costs of unemployment benefit, keep them walking and reduce the cost of wheelchairs, keep them out of hospital and reduce the costs of round-the-clock healthcare … etc. etc. etc. has escaped them. It’s an argument I’ve had with them a few times before on this blog, here and here and

The hidden costs of even mild R.A.

January 15, 2010 at 11:11 am | Posted in rheumatoid arthritis (RA) | 6 Comments
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I’m part of the Norfolk Arthritis Register (NOAR) study, which is an epidemiological study around rheumatoid arthritis. They look into all sorts of things, physical, mental and social, that affect R.A. patients, from an epidemiological standpoint – i.e. they look at lots of us and then see what the statistics say. In spite of the old ‘lies, damn lies and statistics’ quote, they produce some very interesting results.

One of the bits of research they did, before I was involved, was around the hidden costs of R.A. and it’s something I’ve been thinking about a lot lately. Even mild R.A. leads to an extraordinary amount of hidden costs, even in this country with our ‘free healthcare’. I’m trying to compile a list of those hidden costs for someone like me with mild R.A. – I’d be interested in any additions people might think of, so please comment if any come to mind! Later on, when I have the list as complete as I can make it, I’m going to try and price it. I think that might be quite frightening.

Here’s what I’ve got so far:

  • Over the counter medications such as paracetamol, stomach settlers etc. not prescribed by the doc
  • Time off work due to sickness
  • Time of work to attend hospital appointments (consultant, nurse, physio, OT etc.)
  • Travel costs to attend hospital, since I live in a rural area and hospitals are 30 miles for consultant/nurse and ten miles or so for OT/physio.
  • Aids such as jar openers, tin openers etc. (Some of these are free through OT services, some aren’t.) I have compression gloves from OT for instance, but they’re starting to get a bit baggy/stretchy after less than a week, so I might invest in some good quality ones!
  • An occasional one only, but cost of trips etc. cancelled due to a flare!

I’m sure there are more – will add them as I think of them or as people comment with suggestions! Some, like cost of transport because one can’t drive, I haven’t included because they haven’t actually happened to me so far!

Wax bath therapy

November 20, 2009 at 7:52 pm | Posted in Me, rheumatoid arthritis (RA) | 10 Comments
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I’m slightly confused because my lovely physio has suggested wax bath therapy for my hands … and referred me to an occupational therapist for it. My confusion arises from the fact that I would have thought that wax bath therapy was a physio sort of thing to do and definitely not an OT thing! I wonder if the OT will say the same when I see her? I wonder how long it will take to see her, given that it took seven months to get a physio appointment.

Anyway, if anyone has ever used a wax bath could they let me know; I’d be really interested to know if it helped at all. I did find a research paper that said it could be helpful in RA if combined with exercises but not on its own – well my hands certainly get plenty of exercise with all the typing and craft stuff, and I do some simple range of motion type exercises in the mornings too, so perhaps the wax thing will do some good.

New NICE guidelines on RA

March 9, 2009 at 9:56 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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Well it seems that NICE (the ironically named and aforementioned National Institute for Clinical Excellence in the UK) have done an about face on their original ‘if you try one anti-TNF and it doesn’t work, tough. You can’t have another one, ner ner ne ner ner’. They’ve released new guidelines which are actually very positive. Of course it doesn’t mean that all rheumatology departments will agree with or follow their guidelines but I suppose it’s a start. Here are some of the positives (IMO), and it’s only a very select few that resonated with me:

  • Newly diagnosed people should be offered a combination DMARD therapy straight away, including methotrexate, ideally within three months of persistent symptoms. Well I don’t think I know ANYONE in the UK that was diagnosed within three months of persistent symptoms, let alone given the combination therapy option, but I’m glad if that’s going to change.
  • A level of what is acceptable disease control should be agreed with the patient in advance and worked towards. HA! I’ll believe that when I see it. The nearest we come to discussing acceptable levels is ‘Really you’re not too bad. I see much worse people in here every day.’ Well yeah, and there are people much worse off than me in Africa, and indeed round the corner, but that doesn’t mean I have to be content with my lot!
  • Quoting direct from the NRAS site (www.rheumatoid.org.uk) “People with RA should have access to a multidisciplinary team (MDT); this should provide the opportunity for periodic assessments of the effect of the disease on their lives ( such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, mood, impact on sexual relationships) and access to a named member of the MDT (for example, the specialist nurse) who is responsible for coordinating their care.” Well yeah, I have access to a multidisciplinary team. Like any team, some are fabulous (physio that I see now, occupational therapist, even if we don’t share a sense of humour, rheumatology nurse at the GP surgery), and some aren’t. One that isn’t is the one who would no doubt be ‘coordinating my care’, gawd help me, if that happened; the RA Nurse Practitioner at the hospital. I can imagine quite vividly what her assessment would be like. She would read off a form in a board voice, ‘Are you depressed? No? Good. Do you have sex? No? Good.’ And of course what’s required is that thing they don’t have time for at hospital, a CONVERSATION!

And don’t get me started on the patient guidelines – well, if you know me you know I will no doubt get started on the patient guidelines when I have time and feel up to it, but just for now I’ll say they’re absolutely appalling, patronising, insulting …you get the idea. I asked Arthritis Care for a copy.  They were wonderfully efficient and friendly and sent me a copy return post, but having received them I took one look and went straight to the NICE website to find the health care professionals’ version – THAT actually told me things. I am sorry I caused paper and Arthritis Care money to be wasted. The patient guide had lots of nice white space and simple bullet points that told me that as a patient I should definitely have the right to treatment, possibly with drugs.  (OK, I exaggerate, but thin doesn’t even begin to describe the level of information!)

Here’s a a link to the patient guidelines if you want a laugh or cry. And here’s a link to the healthcare professional guidelines if you actually want some information.

I’m probably being a bit harsh, but it surely can’t be that hard to have something really, really simple with links or (see page whatever) if you want further detail, instead of assuming all patients are clueless. It’s as bad as the hospital rheumy nurse giving me the very useful methotrexate book and saying, ‘but really there’s more information here than you need’. I think I should be allowed to decide that.

Flare up – and I know I brought it on myself!

January 27, 2009 at 2:27 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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The OT gave me a very sound lecture on pacing myself and how important it is! Over the past two weeks I have dismally failed to pace myself, and over the past couple of days I paid the price! I had been feeling much better, and we’re fantastically busy at work, so I’ve just been getting on with it. Getting on with it means working from 8.30 to 6.30 most nights, and not taking a proper lunch break, although I really DO try to get up every hour and have a stretch.

And, because I was feeling so much better, I didn’t crash at the weekends either. It was great – I was busy, I was enjoying myself at the weekends, why slow down?

This Saturday, I had the answer to that question! I was full of aches and pains when I woke up, attributed it to morning stiffness and thought no more about it. But Sunday I was really quite unwell and hardly got out of bed. I was sleeping badly because I woke up in pain, and I felt like everything was back to square one.

The good news is that after a much reduced working day yesterday and a rest all day Sunday, I feel much better today. The bad news is that apparently if one keeps doing this it’s not just a vicious circle … as in feel great, be madly active, crash, get better, feel great, be madly active, crash etc. … it’s actually a vicious spiral in a downward direction. So each time you crash things are just that little bit worse, and you don’t get quite so much better.

Well, I’m glad I KNOW this, and I know what to do about it. Now all I have to do is actually DO it … which, alas, is much easier said than done!

Occupational Therapist – jolly useful!

September 15, 2008 at 7:53 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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I consider myself very lucky that my rheumatology department runs this early arthritis clinic, even if it is a little tricky to get into it (as you’ll know if you’ve read the two previous posts). I don’t think someone with symptoms as mild as mine would normally have access to an OT. Silly little things have become very frustrating over the last few weeks – opening jars, turning on the kitchen tap, which gets quite stiff, and, on bad days, gripping anything that’s smaller than an inch or so in diameter. I wouldn’t have thought to bother a doctor about any of these things but it was great to talk to someone who not only really understood the frustration, but actually had some practical advice to offer. She’s suggested simple pipe lagging, which comes in a rang of diameters, can be slid over things like toothbrushes, hair brushes etc. to make the grip softer and wider, and she’s given me a bit to take away and try. She’s also given me a bit of magic plastic grippy non-slippy semi-sticky stuff. It’s officially known as a piece cut from a Dycem non-slip reel but I just call it magic! It does the gripping for me so I just drape it over the very stiff tap and I can turn it on just using the palm of my hand! I expect one can open jars and things with it too, but they do also make a jar opener so I might look into that. I’ve got a cane with a moulded hand grip for really bad days … although if my knee’s bad then my hands will probably be too bad to use it … at least I have the option though. And finally I’ve got her phone number … which if she actually answers and is happy to give advice over the phone, could be worth its weight in gold.

I really shouldn’t say this, because she was so lovely, but we obviously didn’t share a sense of humour. ‘What do you use to open jars?’ she asked, before providing me with the little slice of blue magic mentioned above. ‘My husband,’ I answered, with a grin, or something as close to a grin as I could manage given my mood. Now everyone else I’ve said this too has laughed, or at worst chuckled, but she took me deadly seriously … and in fairness I was serious, I suppose. I do use hubby to open jars, but that’s never worried me unduly. ‘Hmm,’ she said, ‘now we must maintain our independence, mustn’t we?’ One of my pet hates is being referred to as ‘we’ but I let it go, because really, she was so lovely and helpful.

Early Arthritis Clinic – I get there at last! Hurrah.

September 15, 2008 at 5:38 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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It seems to me, and this is sad if it’s true, especially as I have an academic background myself, that the lower you go down the medical food chain, the more human the practitioners become. So, at the top you have the consultants who are so far removed from reality that they only see you as a point on a chart of severe to mild cases; then there’s the nurse practitioner, brisk and efficient, not going to put up with her time being wasted, slightly patronising, but well-meaning and quite friendly on a good day. And somewhere ‘below’ her … although some people reading this might ‘flame’ me for suggesting they’re not on a par (or perhaps even that they should be higher), are the occupational therapists and physios. So far I have experienced two physios and one occupational therapist and they’ve all been lovely – human, helpful and really caring.

I’m afraid the occupational therapist (OT) might have been a bit too human and caring under the circumstances, which is why I ended up rather snuffly with her, if not quite bursting into tears! I was having a BAD day – I don’t know why, but another law of arthritis (or mine anyway) seems to be that you NEVER see the consultant or nurse practitioner on a bad day. However, the day I attended the early arthritis clinic, last week, was a very bad day, thank goodness. If you don’t have RA yourself, or perhaps even if you do have it and don’t have to work within the confines of the NHS, you might not understand the ‘thank goodness’ comment. Well it seems to me that unless the consultant or nurse practitioner actually sees you unable to walk, or with beetroot red joints the size of turnips, they don’t really believe it happens, although they’re all too polite to say so. As my RA seems to come and go and be peripatetic as far as which joints are affected, this is thoroughly frustrating!

Anyway, I turned up at the clinic, after the whole appointment debacle I’ve already mentioned in the post below, and the receptionist couldn’t find me on the system. She was polite, friendly and baffled. Eventually she called over another receptionist, who was also baffled – although lacking the polite friendliness of the first. I was getting just a tad fed up at this point because I hurt, I’d been standing for a while (not comfortable) and I was really worried that after the five month wait they were suddenly going to decide they couldn’t find me on the system … again … and I didn’t have an appointment. She looked at me over her glasses and said, very patronisingly, ‘And what appointment did you think you had today?’ And believe me the italics were hers, not mine – there was a very scornful stress on the word ‘think’.

Eyes flashing, lips a thin line, I growled, ‘I know I have an appointment with the early arthritis clinic.’ She continued to look blank. ‘A combination of occupational therapy and physiotherapy,’ I explained.

She gave a deep frustrated sigh and said, very rudely and abruptly, ‘Oh well then, you’re in the wrong place.’

‘Interesting,’ I said. ‘They told me to report to rheumatology reception.’

She went back to baffled. At that moment a third receptionist, who had been sitting quietly in the background dealing with other things, (or possibly just eavesdropping and having a laugh), said ‘No, the early arthritis clinic – it’s this list here you should be working from, and look, the lady’s name is on it.’

‘Call that a list,’ she said, with scorn. Now I have to agree with her here – it was a slightly smaller than A5 bit of paper with a tear down one side, looking like scrap, with a few names scrawled in biro down it. But still … it was her job to know it was there or someone else’s job to have told her. Rather than apologising nicely she managed to grate out, ‘Well … we apologise. Take a seat.’

I was fuming and unfortunately when I fume, rather than yelling and shouting, or even being calm and productive, I just want to burst in to tears … so when the OT was so nice that’s nearly what I did! Anyway, she was very helpful and made some useful suggestions, which I’ll post about separately. Then I saw the physio, who gave me some basic ‘range of motion exercises’ for all the joints and has referred me on for more physio. No idea when that will materialise, so I’ll keep forking out £35 a week for the private one for the moment! I hope the NHS one kicks in soon though!

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