RA Blog Week Day 2: Active or Reactive Patient?

September 27, 2016 at 10:20 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Well, what a dismal excuse for a blogging penguin I am! I completely forget that yesterday was day one of RA blog week. I guess this makes me a reactive blogger, or at least definitely not an active one, but now it’s day 2 and we’re discussing active versus reactive patients. Well, I’d like to think I’ve been an active patient from day 1 … that’s what I’d LIKE to think … and indeed I was already looking into RA and researching it before I was diagnosed, because the GP had suggested it as a possibility and I wanted to find out more. Pretty active, eh? Maybe too active? Maybe I was filling my head with RA concerns and worries, and RA symptoms that I might then convince myself I had?

I don’t think that was the case though – I think it’s important to know as much about the disease as possible, as soon as possible – although having said that, there’s so much info out there of, shall we say a less positive nature, that it can be pretty scary! It’s important to remember that most people with only mild RA, such as myself, have other things to do than write about the fact that they’re actually pretty OK most of the time and have nothing much to say! Consequently the really useful and important blogs out there, and other patient inputs, such as the Health Unlocked network, are written by patients with serious problems and severe RA.

Nevertheless, I was active from the start, partly because it was such a relief to have even a possible diagnosis, after years of odd symptoms that had doctors scratching their heads and trying to tell me I was depressed. (I know depression, I’ve lived with people with depression, I have friends with severe depression … I can recognise it, and I’ve never been depressed in my life.)

Having said all that, it’s hard to remain an active patient, I find, once you’re a number in the NHS health system. It’s hard to keep going and pushing and demanding what you’ve already been promised but aren’t getting, when you’re already feeling at a bit of a low ebb on the health front. It’s hard to put up with appointments not when you need them but when the hospital feel like fitting you in, and with nurses who clearly don’t care. Even harder when you read about the system being hailed as a paragon of virtue in the US. The IDEA of the NHS is fabulous – the ideal is spot on – the actual working is a bit of a disaster, sad to say. There are times when I go along to an appointment with no more active thought in my mind than, ‘Let’s get this over with for another six months to a year.’

Having said that, I think I’m still pretty active. I’m still prepared to fight with the GP for a steroid shot when I’m darned sure that’s what I need … and I’ve been proved right so far. And I’m still interested in the disease from a standing back and looking at the biology, being fascinated with the latest research and possible cures on the horizon point of view.

I think this is a rather different picture of the ‘active patient’ than the one painted by many of my US blogging friends. The US health system is as badly flawed as our I think, but in very different ways. IF you have got health cover and can maintain it, you’ve probably got a relationship with your rhemmy doctor and can see them when you need it (or within a few days not a few months). If you go in with a list the doc is impressed whereas here they just roll their eyes and groan. But fundamentally to my mind an active patient is one who takes control of their RA as much as possible, and not just on the purely medical, drug-related, front, but also doing what we can to control it and minimise impact – such as exercising whenever possible, eating sensibly etc.

Why haven’t I talked more about that? Because I’m a bit rubbish at it! I have been trying to get a 1.5 mile walk in at lunchtime though – sometimes it’s only 1 mile, sometimes it’s half a mile, but at least I’m trying! As to eating … let’s not go there in this post. It’s something I do rather too well!


My Day with RA

March 10, 2014 at 8:27 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” My previous post on this is here.

As I said in my previous post, these days RA doesn’t have such a huge impact on my life. In fact I almost feel a fraud posting about it, but there are some little things, and some equally small hints and tips on coping with them, that I can post about.

Other than making sure I take my medication really regularly, I don’t have to do an awful lot to manage my RA but one of the most important things I do is wear orthotic insoles in my shoes. It certainly helps being married to a chiropodist! These insoles have made a massive difference to me over the years. They’re now just a part of life, but if I do have occasion to wear ‘fancy’ shoes or, as I did yesterday, wander downstairs with bare feet without thinking, I soon know about it – and not in a good way! I had painful feet for years before diagnosis whenever I spent a bit of time walking about, and I just assumed it was the pain everyone had when they said ‘Ooh, it’s good to take the weight off your feet!’ It didn’t dawn on me for ages that when I took the weight off my feet they still hurt, and other people’s didn’t!

Another little tip is warm water – warm water is a wonderful thing if your hands are stiff first thing in the morning! I rarely get significant morning stiffness but if I do, plunging my hands into a sink full of lovely warm water really does help. (Hubby will read this and suggest I should do more washing up, I dare say!)

The other major effect RA has on me, and the most difficult one of all to get through to people who don’t understand the disease (including family, doctors, family who are doctors …) is the fatigue! This really is a big problem and the only way I can deal with it is to pace myself and try to keep to a boring routine of early nights and early mornings. (Obviously if late mornings are an option for you, that’s fine – they aren’t for me as I work full time.) People always pull faces and think I’m making excuses when I’m being a party pooper at 9 pm … and maybe they’re right as I’ve never been a fan of parties … but really, an early night and a good sleep makes all the difference to me.

The final thing is flares – even though my arthritis is mild and controlled I still get flares. They’re a fact of life. The hardest thing is to remind myself during a flare that it may seem like a dark tunnel but there IS light at the end of it. It’s ridiculous – every time I have a flare I feel as though THIS IS IT and things will never be right again. After seven years since diagnosis and quite a few flares you’d think I’d be over this but I’ve spoken to other RA sufferers and people who have other diseases that also flare and die down, and many seem to go through the same thing. It’s not sensible but I haven’t yet found a way to avoid it! So if anyone would like to offer me a hint or tip on this, it would be appreciated!  :-)




But what if …

May 17, 2013 at 8:47 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 13 Comments
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So I’m increasing my methotrexate. Flippers crossed that all will go well, I won’t get any nasty side effects (except maybe appetite loss, which would actually be a great benefit!) and it’ll keep my disease in control for at least another five years … but what if it doesn’t?

Well I asked my consultant this at my last appointment. He’d said, ‘I’m happy to increase your methotrexate to 17.5 and then to 20 but after that we’ll have to start considering other things if that isn’t doing the trick’.

So I asked him point blank what other things? ‘Oh’ he said airily, ‘there are lots of other things available.’ Well it’s now or never I thought and said what’s been on my mind for a while: ‘I know about biologics, but I won’t qualify for them on the NHS, will I?’ He looked a bit startled and then had to admit that no, I didn’t stand a chance. With my fabulous blood results that never show anything wrong, I’ve got no chance of being offered them at all at the moment.

So … where would I go if the methotrexate doesn’t work or causes problems? Well, I can add sulfasalazine to the mix and see if that does any good. ‘Some people are on three DMARDs’ said the consultant, but even he didn’t sound really convinced about it.

So what it boils down to is that with the usual NHS foresight, if the methotrexate increase doesn’t work and then the sulfasalazine doesn’t work, I would have to wait until I was in a really bad way, unable to work, probably unable to walk (given that feet and knee are the worst bits of me) before they’d even deign to consider me for other treatments. As usual, let’s not make the effort to keep people OK and working – let’s wait until they’re falling apart before helping, even though surely doing it that backwards way doubtless ends up costing ‘the system’ more in the end!

Well, back to crossing those flippers and hoping it never comes to that!

Shoulder injection has worked … a bit …

November 7, 2012 at 9:32 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 3 Comments
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When I had that shoulder injection I was finding it very hard to pinpoint exactly where the pain was, but I know it was kind of ’round the back’. Well … the pain round the back has gone, the mobility is improved but not great, but now I can exactly pinpoint the pain that remains and it’s to the side/front! I still can’t lift the shoulder much above the horizontal.

I went to see my GP about it last week and she’s put me forward for a scan. I was rather hoping for another injection but she says it’s too soon as, since there has been some improvement from the one I had, it should still be working away and might start to improve the other bit too. I rather doubt that, but she’s the doc, so we shall see!

The other thing she said was that if they do the scan and can see the exact spot that is inflamed, they can do the injection there and then and be sure that it’s in just the right place. And being the NHS, by the time the scan comes through I will certainly have left enough time between injections!

So for the moment it’s a waiting game … again!

In the meantime I have my second cold of the winter, and it’s not even supposed to be winter yet. <sigh, achoooooooooooo=””> I’ve also had an unpleasant flare through most of September and the beginning of October, but that seems to be over now – phew. As usual, nothing whatsoever showed in the bloods. In fact, when I have my six-monthly rheumy appointment in December I’m expecting him to say ‘Oh, did you have a bit of a flare in July – your bloods are slightly up.’ I was 100% fine in July!

Polly’s Adventures in NHS Wonderland

July 3, 2012 at 8:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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Something’s going on. Call me a nasty, suspicious, cynical penguin, but this just isn’t normal. I went for my routine rheumatology check – you know, the one where they say, ‘Oh go away – we’re not interested in you.  Call those symptoms? Ha! I see people in a much worse state than you every day!’ (As though that has anything to do with the price of fish.) But this time it was different …  It started off with the usual intro as though we’d never met before, but this time, as I looked at her blankly, she actually said, ‘Oh – we’ve met before, haven’t we?’ Then she looked at the notes – yes, the ones she’d taken in with her five minutes before she called me in, but obviously hadn’t read, and went, ‘Oh yes, I saw you last time.’

OK, not an auspicious start, but nevertheless, better than expected. But here’s where it gets weird. She asked how I was. I said fine. She said ‘scale of 1 to 10’ and I said ‘1’. She looked blank. ‘Well, is there anything you want to ask me?’

‘No, not really.’

‘Well … is there anything I can do for you?’

‘You can say, “You’re fine. Go away and come back next year,” and then I’ll do that.’

‘Yes, but … I mean surely … ‘

What’s going on here – you usually can’t wait to see the back of me.

‘I know – you haven’t had any x-rays for ages. We ought to check there’s nothing going on below the surface that we’re unaware of.’

Really – I was diagnosed in 2007. In 2009 I mentioned x-rays and how the guidance said they should be done a year afterwards and then every so many years – but it was poo-pooed. ‘No, you’re fine. We see worse people …’ etc.

I haven’t had any x-rays done since and it hasn’t worried anyone.

‘Good heavens, do you know, you haven’t had any x-rays done since you were diagnosed!’

‘Yes, I know.’

‘Well I really think you should have them done. I know it’s inconvenient coming in specially and I know they’re a bit of a pain, but I really think …’

‘Fine. I’m happy to come in.’


And then, to make matters even more Alice-down- a-rabbit-hole, she said they could arrange the x-rays to fit in with another appointment I had, to save on trips in. Hang on – when has the hospital ever put itself out to help its out-patients? This is new – but I’m not complaining.

Stupidly, Alice never encountered a penguin, so here she is with a flamingo

Stupidly, Alice never encountered a penguin, so here she is with a flamingo

Of course, in the next couple of days the universe got itself back on track. The appointment for x-rays arrived, on a completely different day to my other appointment and at an impossible time two days from when the letter arrived.

Ah – that’s more like the NHS I know and love, I thought. But wait … I emailed them (yes, they’re now so far into the modern age you can email them, woohoo) and said, ‘Sorry, can’t make that, but I will be in the hospital on this date for this appointment. Can you fit round it?’ And wha’-do-ya-know – they actually did!

So … did it work? Did they fit in? Did I run late for the next appointment? For answers to all these questions and more, you’ll have to wait for the next exciting episode of … Polly’s Adventures in NHS Wonderland.

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!


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!

‘I’m just going to rest my nose on my elbow for a minute’

May 2, 2012 at 9:36 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 3 Comments
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If I had to come up with a list of the top ten things I never thought I’d be saying, that’s got to be up there among them!

I had a physio appointment yesterday for my dodgy shoulder – the one the doctor said was RA and would probably need a joint injection. Well … according to the physio it isn’t and it won’t … and I think she’s right. She thinks it’s likely to be inflammation relating to a previous episode of joint inflammation which caused the joint capsule to swell, so that the muscles around the glenohumeral joint, the ‘rotator cuff’, were pushed about a bit and got inflamed as well. The joint problem seems to have died down, leaving the rotator cuff problem zinging away like a good’n, unfortunately.

Apparently one in three people over the age of forty have a rotator cuff problem anyway, nothing to do with RA, so it might not even be linked, but since I’ve had no injury etc. to exacerbate it, it probably is.

Anyhow, this physio seems to have had prior training as a torturer, although she assured me that she started as a physio straight out of uni last year, but I’ve got to admit that with her heavy and darned painful massage, ultrasound and various exercises, the shoulder is a whole lot better already today, although she says it will probably take three months to heal completely … and that’s if I’m a good penguin and keep remembering to put my nose on my elbow!

Yes, that’s one of the bizarre exercises I have to do to stretch the muscles. Stand feet about a foot from a wall, rest my forearm on the wall in front of me with my upper arm at right-angles to the shoulder joint  and then … rest my nose on my elbow, for about three minutes a day, but not necessarily all at the same time. It really does stretch those muscles! Looks extremely odd though. I can hardly wait to do it in the office and entertain the junior penguins! (Or perhaps I’ll just slink off to the loo and do it there!)

The other main exercise involves lying on the bed with a can of beans and doing a kind of weight-lifting thing. At least having a can of beans by the bed makes it easy it to remember to do the exercise!

The joys of a winter routine hospital appointment

December 23, 2011 at 9:03 pm | Posted in Me, rheumatoid arthritis (RA) | 1 Comment
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I really hate the winter half of my six-monthly hospital appointments. I suppose it could be worse. I have the nurse practitioner visit (usually bad) in summer (not so bad), and the consultant or registrar visit (usually OK) in winter (not so good), so you could say it balances out. I have just had my visit to the register – a very nice young lady who, while obviously struggling with the basics of the English language, still clearly had an excellent grasp of autoimmune diseases! It took rather a long time to find any of that out though.

At the risk of sounding like one of those very bad school essays (‘What I did on my holidays: I got up at 4am. Mummy was cross and said go back to bed. I got up again at 6am. We left the house at 7am. We arrived in Wales at 11:30 am’ etc.) here’s why I hate the winter appointment. I left work at 10:15 for what should have been an approximately half-hour drive to the hospital for an appointment a bit after 11. Why leave such a long time? Because it’s December. The weather was a bit rubbish and if you have an appointment you can guarantee to get stuck behind something slow. I did. Then there’s the car parking – always fun. I struck gold in the third car-park I tried. As you can imagine, after driving round three car parks, all for several minutes, I was starting to cut it fine, but as soon as I reached the Rheumatology Department I realised I need not have worried. The waiting room was heaving! I handed in my appointment letter, took my seat and waited … and waited … and waited. The usual charmless nurselet called me in, did the ‘weigh and wee’ and then I got sent to the equally busy inner weighting room … where I waited … and waited … and waited.

After about an hour a nurse came out and wrote next to my consultant’s name on the notice board ‘running one hour late’. Twenty-five minutes or so after that, I finally got seen. Fortunately I’d taken in a good book. Unfortunately, as it wasn’t so cold as last year, and they were probably even more short-staffed, no one offered us a drink. I hadn’t had time for a drink on arrival because it was time to check in, so I was a bit parched.

Useful appointment with nice registrar followed, which culminated in a further referral (who knows where, who knows when … but no hurry, nothing urgent!) and a blood test. ‘Will you give me a form so that I can get the test at my GP?’ I asked. ‘No, no,’ she said, no doubt intending to be most helpful, ‘you have it here. Just go to the blood test department …’

So, by now thirsty and pretty peckish too, but thinking I’d better get this done before heading for a café, I went and found the blood test department. Guess what? The waiting room was heaving AGAIN. That’s another reason for hating the December appointment. People get ill in the winter!

I went up to reception and got a ticket – 73. The number just called was 63. Only ten, I thought. Surely it won’t be that long. ‘What’s the waiting time likely to be, just roughly?’ I asked the receptionist. ‘Hmm,’ she said. ‘Could be up to 45 minutes … but it might be much quicker.’ Aaaaaaaaaaaargh. 45 minutes? Aaaaaaaaaaargh! And we were so busy at work too. So I phoned the duty junior penguin at work and went ‘Aaaaaaaaaaaaaaaargh’ down the phone at her. (It’s in the job description – ‘be prepared to listen to senior penguin going aaaaaaaaaaaaaaaaargh periodically’.)

As it turned out though, the queue did go down quickly. All of a sudden they were charging through people and I was the only one left, and then my number came up, and in I went to be processed. (It did feel a bit like that this time, but given the numbers they were having to get through, I can’t really blame them!)

And so back home, stuck behind another slow lorry most of the way and then, somewhat peculiarly, a slow ambulance!  I eventually got back into work at around 2.15.

Four hours out of work: total time with medical staff, approximately 15 minutes. Frustration factor: high.

Merry Christmas, Felis Navidad, Feliz Natal and Happy Chanukah to all.

There’s no telling some people (Also ICK!)

November 5, 2011 at 9:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 2 Comments
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I met up with a friend yesterday who I haven’t seen for ages, in spite of the fact that we work in the same tiny town. It was great to see her but I was somewhat dismayed when she asked me about my arthritis and then told me that her husband seemed to be suffering from what appear to be RA symptoms too.

‘One of his fingers is permanently hooked now,’ she said, ‘and sometimes when he goes to open a jar or something he hand locks around it and I have to force the fingers open one by one. I hate doing that, it’s gross.’

My immediate reaction was something like ‘Aaaaaaaaaaaaarrrrrggghghhhggh!’ This was partly for the grossness and partly because you MUSTN’T do that. ‘Every time you force his hand open you’re damaging the joints more!’ I nearly screamed.

‘Well,’ says she with a shrug, ‘what else can we do?’

‘What treatment is he on for it?’

‘Oh he isn’t on any treatment. He’s not been to the doctor about it.’

Did I mention Aaaaaaaaaaaaarrrrrggghghhhggh?

Well … erm … that might be your answer about what else you can do about it then! Now I know some people don’t want to go on treatment and have some success with alternative therapy or diet, and the very best of luck to them, but he’s not doing that either. He’s just ignoring it and waiting for it to go away. What makes it worse is he has a very active, physical job and he really NEEDS to be able to do this stuff.

On reflection, perhaps that’s why he’s not going to the doctor – he’s terrified of being told that he shouldn’t/can’t carry on working, so he’s just trying to ignore it. I can kind of sympathise with that … but he’s still crazy if you ask me!

A reliable diagnosis for Lupus on its way?

February 3, 2011 at 9:41 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 2 Comments
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You may think RA is a hard one to diagnose, and I’ve often heard complaints as to how it’s overlooked by medics and the public alike, but Lupus (or Systemic lupus erythematosus to give it its full name) is RA’s poor relation in this respect. Lupus is another autoimmune disease, but this time with the autoimmune system attacking connective tissue – and of course connective tissue occurs in all the internal organs as well as joints, so it can cause inflammation of all sorts of parts of the body, resulting in a bizarre set of symptoms that is often not diagnosed as one problem i.e. Lupus,  for many years.  I suspect that one reason is that GPs etc. would only recognise it from the famous ‘lupus butterfly rash’ that occurs on the cheeks and across the nose, but according to Wikipedia (and I don’t know where they referenced it form!) only 30-50% of Lupus sufferers ever display the rash at all.  Some research has been done now in America to show that Lupus might be caused by a malfunctioning of ‘micro RNAs’, which are things that white blood cells use to control the function of antibodies etc. This is research in mice, something that a lot of people would find uncomfortable but which I’m not going to get into a discussion about here; from a purely biological point of view, however, diseases in mice show a remarkably good correlation to diseases in humans, and the mice show a consistent pattern of ‘dis-regulated’ micro RNAs when they develop Lupus.

What that means is that, probably ten years or so down the line, if it gets that far*, there could be a simple diagnosis ‘kit’ for Lupus, where it can be clearly and easily diagnosed with a blood test or similar, whereas at the moment there is no such test – various tests can hint that it might be Lupus or some other autoimmune disorder, but then again it might not, but there’s nothing conclusive.

Like rheumatoid arthritis 1) it’s quite likely that there are a lot of people out there who are in the early stages and undiagnosed and 2) with Lupus it’s known that many people are either undiagnosed or misdiagnosed for many years before they are given a diagnosis of Lupus, so a test that is as conclusive as this sounds like it would be would certainly be very good news indeed.

We then have to hope of course that the test itself is not so expensive that no clinicians will actually pay to use it, but that’s another story, and probably one we won’t have to worry about for another ten years or so!

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