Psoriatic Arthritis – Things to do when your hands ache.

This post is for my own benefit.  I’m in remission just now and it’s easy to think straight, but my arthritis will flare up again.  I know if I hit a bad flare its very difficult to know what to do for the best, so at least if I have some ideas written down I’ve something to try when the pain gets too much and maybe it will help someone else.

In psoriatic arthritis entire fingers swell up at one time, so called, sausage fingers.  One finger can hurt like h*** but the one next to it can be totally normal.  When a finger is normal this is called “sparing” presumably because it’s spared the disease.  Rheumatoid arthritis is different and the joints all the way across the hand tend to hurt, e.g. all the knuckles and you tend not to get sparing.  Either way, sore hands make your life miserable very quickly.

Things I’ve tried

1 Painkillers and anti-inflammatories.  These only work if you take them (!).

Paracetemol is a good drug, most people think it is too mild and not strong enough to deal with their pain.  That can be true, but don’t knock it till you’ve tried it, properly. Bandolier has some good articles on paracetemol and arthritis, that show it doesn’t help most people but it can be useful in combination with other drugs (not least because you can take it on an empty stomach, i.e. first thing in the morning before you get out of bed).  If your doctor agrees you can take paracetemol, then two hours later take an NSAID (e.g. diclofenac) and 2 hours after the NSAID take take another paracetemol (i.e. so there is 4 hours between paracetemols but only 2 hours between drugs). There isn’t a lot of evidence for this but there has been some research. Of course you shouldn’t combine 2 NSAID drugs e.g. dicofenac and ibuprofen, see this BUPA factsheet for more info.

2 Heat Helps

Heat helps, but it isn’t really practical to go about your day with a hot water bottle strapped to your hand. I like my microwave hottie, it’s great for sore backs and hips, but only really good for a sore hand if you are sitting at the computer. On the subject of heat, I find wrist warmers really help, if my fingers are swollen gloves just irritate them, but as these have one large hole for your fingers they are much more comfortable if your joints are flaring.  You can also get them in funky colours and can use them to hide the more medical looking NHS splints. And no, I’m not a skier and never have been, I can’t think of anything worse!

3 Computer Keyboards and Mice

I work, I use a computer, most people do.  At the moment I use a logitech wave keyboard and mouse. It’s fairly arthritis friendly, they keys certainly have a nice “action” when pressed and unlike other logitech mice, it doesn’t have an annoying click on the click wheel.  If my hands are really sore, I sometimes find it easier to use a graphics tablet instead of the mouse, I have a bamboo one. It takes a bit of getting used to. I also use more keyboard shortcuts, as I find constantly moving my hand between the keyboard and the mosue can be very painful.  A bookstand is also useful, I like this soft squishy, book bean bag, called a bookseat, because it’s good for reading in bed as well as for working at your desk.

4 Taking a break/Keeping moving

Not staying in one position too long helps, which is easier said than done if you’ve got a lot of work to do.  I picked up this tip from the Living Well with Pain and Illness book, where it was suggested you use a vibrating watch/meditation timer to remind you to stop and have a break.  I find stopping easy, but starting again is a problem!  Anyway, the thing that works for me is something called the “Gymboss”.  No I haven’t been inside a gym for years, but it is a vibrating timer, its much cheaper (smaller and easier to use) than a meditation timer and you can set different time intervals. So when I’m working on the computer, i set it for 30 minutes and then it vibrates, I take a break for 5 mins and then it vibrates and reminds me to start working again.

5 Wrist Splints

I don’t use wrist splints all the time, but I find if I put them on, I can get a few more miles out of my hands if my fingers/wrists are especially bad.  During the day I like WristEasy, as they are light and don’t look too “NHS”. It’s getting harder and harder to find different sizes of these, so I fear they have stopped manufacturing them.  I hope my pair last a long time. I also have a night splint for when the pain is really bad and I can’t even bear to have the duvet touching my hand.

6 Relaxation/Meditation/Visualisation CDs

I have a few of these, some have exercises specifically for your hands and arms, I think I’ll write a separate post on them.

Things I haven’t tried yet but would consider if I had a bad flare.

1 A TENS machine (perhaps with a TENS glove?)  Llyods Pharmacy have some reasonably priced TENS machines.

2 A paraffin wax bath (a poor mans wax bath, washing the dishes in hot water!)

3 Arthritis gloves.  Are these a gimmick?  I’m not sure I haven’t tried them, that’s not to say I never will…

So, there you go.  If you’ve got arthritis some of these ideas may (or may not) help you. Its also good to talk to other people who understand, I like the Arthritis Care forums (UK) and the National Psoriasis Forums, (US) a little sympathy can go a long way  If you’ve got any tips or suggestions for coping with sore hands, I’d love to hear them, please feel free to leave a comment below.

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Only 40 % of people with any type of arthritis are in work

January 29, 2010 Leave a comment

Benefits Now Blog  –  http://www.benefitsnow.co.uk/blog/

the National Equality Panel published a report for the Government Equalities Office on the distribution of income in the UK. Most of the national media have focused on the fact that the gap between the richest and poorest has widened in the last thirty years. Also reported was that women and people from ethnic minorities continue to experience pay discrimination in the workplace. What hasn’t been reported is the fact that the Panel also looked at the position of people with disabilities and found that having a disability always entailed a significant drop in income and that disabled people who declare their disability are much less likely to find work.

only 40% of people with any type of arthritis are in work;

That is a pretty depressing statistic… I should read the original report, see what the data is based on. I suppose a lot of older people have osteoarthritis and are retired, so that might skew the figures and make them look worse than they are?


Feeling Better?

December 31, 2009 2 comments

I haven’t posted much this month, partly because it’s December and I’ve been busy and partly because I am feeling better.  Yes, that’s right, I don’t want to jinx it by writing it down but I am feeling better.

The bone-crushing fatigue I’ve had for almost all of 2009 seems to have lifted, I’m no longer struggling to sit and stand by lunchtime. I can get my work done in the evening and manage housework at the weekend.

None of my joints are too bad either, my ankle still isn’t great and the snow and ice have made it clear how much range of motion I’ve lost in that joint since it started flaring up several months ago, but it’s not screaming agony to walk down the stairs and that has to be a good thing.

The other reason I think I’m feeling so well is I’ve just had an appointment with the rheumatologist, and I always seem to make a miraculous recovery about 2 days before I visit the doctors. Anyway, I trudged through the snow, for a 5 minute consultation that consisted of “yes, you seem to be doing better, come back in 6 months”.  6 months is an improvement on 3 months, lets hope none of my other joints flare up in the mean time.

I think that is the trouble with this disease, it’s so unpredictable. I am constantly waiting for another joint to flare up and give me trouble and based on past experience that will happen again.  I also know that the fatigue could flare up again any time and if anything, I find that thought more depressing.  Fatigue screws up your life, I don’t care what anyone says about pacing and finding your limits.  At the end of the day, if you can’t do what you want to do (and often HAVE) to do in a day then it’s frustrating and depressing however much you “pace” or “goal set”.  When that fatigue goes on for months it’s very hard to keep up any semblance of a normal life.

Anyway, enough moaning. Here’s hoping 2010 is a good one.

Why singing helps

December 3, 2009 Leave a comment

I wondered if there were others in that cathedral with rheumatoid arthritis. If there were people there with cancer, with MS, recovering from surgery, grieving loss. How many of us were in pain? But our harmonies lifted above all of that; they rose, with the great ringing of the organ, into the rafters and into the night. Beyond all of us.

http://pensandneedlesblog.blogspot.com/2009/11/singing-beyond-our-bodies.html

I’ve sung in choirs for years, although I don’t have either the time/energy right now. When I sang I never really thought about others, I never thought if other people were in pain (or not). I know I feel less pain when I sing, probably because I’m concentrating on something else but concerts and rehearsals do involve a lot of standing (usually in cold, draughty buildings).

I love to sing because it is such a physical act; but I also love to sing because the music I produce is incorporeal. It thrusts out and away from these sore, stiff bones, this heart that doesn’t know quite what to do with itself.

Music heals. I guess.  If not physically then mentally, it gives you a break. Something else to concentrate on. Hopefully I’ll be able to do some singing this Christmas. Is singing worship? For me personally?  It depends.  Occasionally it is, usually it isn’t. It’s just something I enjoy doing.

Twelve Quakers and Faith

November 22, 2009 Leave a comment

I am currently reading “Twelve Quakers and Faith”. I like it and want to read more in the series.

Apparently it is Pamphlet 8, makes it sound like some arcane government document from the 1950’s.  Pamphlet is good, pamphlet means short, it is only 36 pages long.  This means it was cheap (£2.50 plus £1 postatage from the Quaker bookshop) and it is easy to read if you have kids running around.

Having said it is short and easy to read is perhaps doing it a disservice. Many of the ideas take time to digest and I rather think the point is to read and consider each point of view rather than race to the end like an express train.

I read it in a oner and raced to the end like an express train. Oh well.

When reading about other peoples personal experiences, I find I am always comparing them to mine, do I agree with their views? Is their world viewpoint the same as mine?  Do they use language I like or does it turn me off? I’m not necessarily sure this is a good thing, but it is what I do.

Personally I find too much mention of God, Jesus and long quotes from the bible just don’t do it for me. I turn off. I feel like I am being preached at.

So as always I found myself comparing my views to those in the book and unusually, I found myself agreeing with  “1”.

“so much of my belief was cultural as much as theological; implicit in it was church architecture, music and literature.”

This is true for me, I was brought up in the Church of Scotland. I love church music, the architecture. When I first heard of Quakers, I dismissed them out of hand as there was “no music”.

I now realise that I can enjoy religious music in all it’s forms but this does not have to be an integral part of meeting for worship. Anyway the whole Quaker idea is that your whole life speaks, not just the bit you do in church, so I can still enjoy religious music.  All this is a wordy way of saying is that my early belief was as much cultural as it was religious.

It was a great relief to become a Quaker and not have to say things like “he descended into hell…”

I agree. How can you recite the Apostles Creed if you don’t believe in it? Surely that is the worst form of hypocrisy? I have never taken Communion as I do not believe I am eating the body of Christ. I also fail to see how doing so would make me a better person.

I was a regular attender at a meeting in England. One week, a lady explained how she had been at a Church of England church. They were having communion and she had not taken part. She had been encouraged to go forward to the altar for a blessing. Again she had refused. I felt such relief when I heard this.  Here was a woman who I admired and seemed to share my same uneasiness at taking part in communion. Maybe my views aren’t so heretical after all.

In meeting, not all vocal ministry is directed specifically at me. So when someone speaks and it doesn’t hold any meaning for me, I remember the relief I felt when, one sunday the ministry did speak to me and I hope that someone else in the meeting is gaining the same benefit from the ministry that had no meaning for me. For me, that is the essence of how a Quaker meeting works.

Anyway, I have enjoyed reading this booklet and I will probably consider some of the other views in more depth. After all, how else do you learn?

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More books I’d like to read

November 22, 2009 Leave a comment

Poem …life could get this small…

November 22, 2009 Leave a comment

This poem haunts me, maybe haunt is not the right word, one phrase in particular sticks in my mind;

I never thought that life could get this small

It is from a poem called “Chemotherapy” by Julia Darling. It ends saying

I’m not unhappy. I have learnt to drift

and sip. The smallest things are gifts.

You can read more about her work in this article in the Guardian.

http://www.guardian.co.uk/books/2004/aug/05/health.poetry

I like the description

My joints are like rusty cranes

My spine is frozen

 

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