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Psoriatic Arthritis – Things to do when your feet hurt.

Okay, just like the “Things to do when your hands ache” this post is for my own benefit. If I’m having a bad day then it can be hard to think of things to try, at least if it’s written down I’ll have some hope of remembering the good advice I’ve received. Actually, I plan on writing another post on all the BAD advice I’ve received, because I’ve heard quite a lot of that too. Anyway, much of this post will overlap with the one on sore hands, but, if my hands hurt painkillers are top of my list. I’ve yet to take a pain killer that dulls the burning pain in my feet. Obviously there are some I haven’t tried but for the constant, Achilles tendonitis/plantar fasciitis I’ve not taken anything that helps and I’ve had sore feet for more than twenty years.

Things I’ve tried that help sore feet

1 Sit down

The only thing that works. Not standing. I’ve been moved on from the steps of art galleries and museums all over the world for daring to sit down when I just couldn’t bear to stand any more. That’s the trouble with being young and having arthritis, you look perfectly fit and healthy so it is just assumed you are sitting because you are lazy or selfish. My feet started hurting when I was 10 years old, the arthritis wasn’t diagnosed until after the birth of my first child, in my late twenties.

2 Pacing

The idea of pacing is that you sit down before it hurts, I’d like to say I do this but I don’t. I’d never get anything done, but at least in theory I know that I don’t need to wash all the dishes in one go and can work for 10 minutes, sit for 5 minutes and then get on and do another 10 minutes. Just as with the sore hands I picked up these tips from Living Well with Pain and Illness and using the Gymboss timer helps.

3 Shoes

I don’t like shoe shopping, having spent most of my teenage years trying to find shoes that fit the (useless) over the counter orthotics suggested by various GPs, I developed an aversion to shoe shops. Clearly I’m missing out on some valuable part of the female psyche, but I usually only have 2 pairs of shoes I can wear at any one time and they have to do all occasions (including my own wedding!)

At first I loved Birkenstocks, expensive but comfortable and had lots of room for orthotics and funny shaped toes. When I eventually got to see an NHS orthotist (after having sore feet for 20 years) he was delighted that I wore Birks because it made his life easy, the custom orthotic was easy to fit as the shoes were deep and practical. A few years ago I gave up on the orthotics when I discovered MBT shoes. These have a rocker in the sole and I discovered that I could walk half a mile, in relative comfort and use a lot less energy to do it. I was a convert. I wore them religiously for years. My first pair lasted a couple of years, good job too at over £100. My 2nd and 3rd pair didn’t fare so well, they were knackered within 6 months and I could not afford to keep replacing them. The squashy bit in the heel would wear unevenly on one side and this would give me hip pain. It was a relief to discover the hip pain was being caused by worn out shoes and was NOT the arthritis progressing, but anyway, I gave up on the MBTs, my bank balance couldn’t handle it.

Next I tried Skechers Shape Ups, same idea as MBTs, rocker bottom soles but for less money. I still wear these today. So what happened to the custom orthotics? Well, I still have them, the orthotist put a rocker on the bottom of my Birks to combine with the custom insole, but I never found that as effective as the MBT/Skechers. I think the rocker bit is in the wrong place, but I’ve moved and haven’t seen an orthotist or podiatrist since. Anyway the skechers are working for now so I’ll stick with them. One of the “rules” for plantar fasciitis is NEVER go barefoot (easier said than done), so in the house I wear a pair of Birk Noppies, with lots of knobbly bits on the soles. I’m sure millions of people would find them uncomfortable but I think they are great and have been wearing them for more than 10 years. Well meaning relatives who give me “novelty” slippers for Christmas are always disappointed to see me in my hippy sandals.

4 Walking Stick/Cane

Oh this is a big topic.  Yes it helps my feet but it hurts my hands. I’d rather have sore feet than sore hands. For me personally, it hurts my pride most of all. With a few notable exceptions (work conferences), I’ve only used a stick on holiday where I can be sure that I won’t bump into anyone I know.  For a start when you are a fit looking teenager and “all” that’s wrong with you is a sore tendon its impossible to explain why you would “want” to use a stick. Especially as tendonitis and plantar fasciitis are self-limiting conditions (i.e. they should get better on their own).  Trouble was my tendonitis and PF weren’t self limiting, they haven’t gone away and they were caused by auto-immune arthritis.  With hindsight, I should just have used a stick when I needed it and not cared about my family and friends comments but hindsight is a wonderful thing and even now I find it hard to use a stick, when I KNOW I have arthritis and my joints are swollen like grapefruit. For me this subject has best been summed up by Rheumatoid Arthritis Guy (a true super hero), in his post “On Becoming Visible”.  The trouble with using a stick is the vast majority of people don’t know I have arthritis and if I used a stick I would have to explain why and I’m not ready to do that (I’d rather be in pain, go figure, what does that say about my messed up psyche?)

Anyway, my first stick was too long, it was solid wood and it was beautifully carved.  I loved it.  I could walk for miles, in fact within a couple of days I wore out the rubber end and discovered that it wasn’t a standard size and that those rubber ends were actually very useful.  After a few days I realised how much I was using it when I developed an angry welt on my hand and all the bones felt like they’d been crushed.  Yes, yes, I should have gone to a physio, got a proper sized NHS stick with an ergonomic handle.  But at that point the physios were still telling me the reason I had the tendonitis was because I wasn’t doing their exercises and if only I would be a “good patient” I wouldn’t bring this pain on myself. Anyway, I was on holiday, my pride wasn’t up to using a stick at home.  I soon solved the problem with my hand by using a lovely pair of mountain biking gloves with a padded leather palm. I loved those gloves, sadly I leant them to a friend who needed to use crutches for awhile and never saw them again. They looked a bit like this.

My next stick was a more considered purchase.  I went for one of those leki hiking poles, a lot more trendy.  The handle was made of cork and more comfortable and the suspension took a lot of strain out of my wrist.  It’s also a damn site easier to get replacement rubber tips for the end. However I would still only use it on holiday.  Next time my ankle flares I may be tempted to bite the bullet and explain to everyone I know that I have arthritis, I have a sore ankle and the walking stick helps. Having said that I spend most of my life pushing a pushchair and I don’t see how I could combine the two, I’m actually dreading having to get rid of the pushchair, it’s great having something to lean on (and no one knows that I need it more than my toddler!). It also doesn’t attract any rude questions or pitying stares.  Obviously you need to have a toddler in it or it would be a somewhat less effective disguise 😉

5 Heat Helps

My feet are cold even if it’s 20 C out, they also go vivid shades of purple/red and white. It has to be seen to be believed. Heat helps ease the pain, but it isn’t really practical to go about your day with a hot water bottle strapped to your foot. I like my microwave hottie, it’s great for sore backs and hips, but only really good for sore feet if you are lying in bed. I think that is why I like hot baths too, a bath relaxes all my muscles, although it plays havoc with my psoriasis.

6 Relaxation/Meditation/Visualisation CDs

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

Things I’ve tried that haven’t helped

1 Nightsplints

The idea of a night splint is that it holds your foot in an L-shape overnight, this keeps the Achilles stretched and should reduce the “first step” pain in the morning.  The trouble is I can’t sleep with them  on and no sleep makes me more cranky than sore feet, so the night splints have been consigned to the back of the wardrobe.

2 Physio

Yes, I understand the theory that I need to stretch my Achilles.  Years worth of toe raises, wobble boards and hamstring stretches have utterly failed to bring me any benefit or relief and quite frankly life is too short to pick marbles up with your toes or roll bottles of ice under your feet. Ultrasound never helped me either. One thing that DID help me were the “Personal Foot Trainers”, basically they are two poles with plastic bits on the end, you push your feet towards you and away from you to exercise different muscle groups.  It definitely helps and if you stick at it for a few months your feet will feel stronger (mine did and I thought I was a hopeless case), the idea is that you do the exercises in bed, before you stand up in the morning.  The trouble with this is these exercises only help if you do them (!)  I have three kids under 5, the days of exercising in the morning are long gone, maybe when they kids are a bit older I’ll get back to using them.

3 Cold or Contrast Baths

Heat helps, cold is agony. While I understand the theory behind plunging your feet between hot and cold buckets of water, the actual act of sticking my feet in a bucket of cold water makes me want scream. I tried it and the costs far exceeded any benefits. That’t not to say it won’t help you.

4 Insoles/Arch Supports

I’m not talking about custom orthotics here, I mean the things you can buy in Boots. The various gel pads, heel lifts, arch supports and insoles. I’ve tried heaps of them. Several GPs seemed to think that these would “cure” me. How I wish that was true. Sadly none of them worked.  I even saw a NHS podiatrist once (waiting list 1.5 years), who took a pair of over the counter insoles and stuck a bit of cork to the bottom of the heel.  He seemed to think that would be the answer to all my problems. I can’t begin to tell you how wrong he was, they gave me the worst knee pain I’ve ever had, Ipersevered for weeks but eventually gave up. They didn’t even make it to the back of the wardrobe, they went straight in the bin.

Things I haven’t tried but I would consider if I have a flare

1 Crutches

Yes, even more obvious than a walking stick, but easier on the hands.  Not really practical when you have small children to chase after. I do like the idea of crutch covers (skins to stretch over your crutches so you can change their colour), crutch clips/magnets, so you can pay for stuff in the shop without looking infirm and useless as you struggle to hold two crutches and a purse (screaming toddler and tutting onlookers optional). In fact there are loads of crutch accessories here, some of the stuff, like the crutch tips/ferrules are stocked in the UK but I’ve never used this company. Chic-aid and Funky Arthur both stock some cool coloured crutches and sticks with ergonomic handles and are in the UK.

2 TENS

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

3 Hydrotherapy

I don’t even know if there is any hydrotherapy in this area, I’ll need to look into it, chances are it will be over a hundred mile round trip so the childcare costs alone would probably make it prohibitive.

4 Perching Stools / Ironing Stools

I know having a stool in the kitchen would help but they are all so UGLY. Plus the kids would use it as a climbing frame.  What i need is a very large kick stool (you know the type you get in libraries), so I could whizz round the kitchen but always have it close at hand to sit down when I needed to. And for the record, I never iron, a pointless task if ever there was one.

So, there you go.  If you’ve got arthritis some of these ideas may (or may not) help you. A good source of information is heelspurs.com, they have active message boards where you can get tips from other people with foot pain and an “Ask the Dr” section where you can post questions to a US-based podiatrist and orthotist, not everything suggested on the site is sensible. Some of the suggestions on diet or infrared lights has little in the way of scientific evidence, but like the rest of the internet, you need to use your common sense. It’s 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 feet, I’d love to hear them, please feel free to leave a comment below.

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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.

Parenting and arthritis

November 14, 2009 Leave a comment

This was in a post on the excellent RA guys website:

They don’t want their momma to feel pain and when I do, they feel insecure and uncertain about how to rescue me.

This was in the comments section, it made me think

It is going on two years for me with my journey with RA and Fibromyalgia. My older son is nine and a half and the baby turns a year old next month. The hardest part for me is dealing with the fact that the baby will never have the same mother that my nine year old had.

This also made me wonder whether I am strong enough to conquer anything and everything. Am I, as a parent, required to be unbreakable or always be confident about myself, about my parenting skills and about preparing my children for the world? I guess the answer to that is that we are all learning as we go.

http://www.rheumatoidarthritisguy.com/2009/08/parenting-ra/

I can understand that kids find uncertainty frightening so I can understand hiding your arthritis from them as much as possible.  I can also understand the need to be open and honest with your kids without scaring them. A difficult balancing act.

As this post points out, it’s not the pain itself that is frightening, it’s not knowing what to do that is scary. So if the pain is bad giving the kids a task like getting a wheat pack or a glass of water (something/anything) is better and less frightening for them, because then they have something useful to do.

How much do you want to let your kids know?  How much are your kids going to tell their friends/friends parents/teachers?  How much can you ask of your kids? How many chores are too many? (or not enough!).

Hip pain – bursitis

November 7, 2009 Leave a comment

Aha, this is what my sore hip is. I didn’t quite catch the name when I was at the GP, “trochanteric bursitis”, sounds like a new fangled gearbox!

 

When patients refer to hip pain, sometimes they are experiencing trochanteric bursitis and care must be taken during history taking and physical examination to elicit the exact source of symptoms. (Hip joint pain is usually experienced in the groin, sometimes radiating towards the knee, and less frequently in the buttock. Patients often point to the upper buttock area or lateral hip when describing ‘hip’ pain. This often suggests that the pain originates in the low back or trochanteric bursa.)

http://www.jointzone.org.uk/

Rheumatic Disorders

Overview

Osteoarthritis

Inflammatory Disorders

Rheumatoid Arthritis – Articular Disease

N=1 Hip and Stuff

October 29, 2009 Leave a comment

Well, my hip is still bothering me off and on, seems to be worst on a saturday for some reason. The doctor thinks it’s more likely to be the tendon than the joint itself as it “only” hurts when I am trying to get my legs into bed or trying to sit down. I can stand up and walk up and down stairs okay, which means the pain probably isn’t coming from the joint.

I have really limited my walking the past couple of weeks (my husband has very kindly been walking the dog at night) and that has really reduced the pain and the swelling, it’s not really a long term fix though.

The trouble with limiting my walking is I haven’t been to Quaker meeting in months. I could probably manage it if I used a walking stick, but I don’t want to. I’m too vain. I don’t really mind if the people at meeting know I have arthritis, but I have no desire for everyone in my town to know. I can hide it from most people, most of the time and if I’m asked why I’m limping I blame it on a nice non specific “bad back”.

At the moment it’s a bit like Russian roulette, I’m just waiting for another joint to go and hoping its not a “major” one. That’s just the way it is.

I’m still hoping for a magic pill to take the fatigue away, its hard not to feel like life is passing you by. Trouble with all the pills (injections and IV’s) is that they all seem to make you more fatigued, not less. Let me just say, THAT SUCKS.

Categories: Psoriatic Arthritis Tags: , , ,

Pain in Rheumatology

http://healthskills.wordpress.com/2009/10/08/pain-and-rheumatology-an-overview-of-the-problem/

This blog posts is about a research article on different types of pain, looks like an interesting read, unfortunately I don’t have access to the journal.

Fatigue, coping and other things…

Fatigue, tiredness that doesn’t go away when you rest/sleep/sit down.

Pain doesn’t annoy me as much as fatigue, being tired all the time is no fun. Mostly because it stops you doing all the things you want to do. This Stene Prize submission is a short article describing life with the fatigue of psoriatic arthritis. I liked it because the author is a woman with children, so I can relate to it. The whole article is worth a read, but this quote struck me as being particularly apt.

“In my opinion coping is a short-term strategy and arthritis is a life-long disease.”

In another related article the author (Sharon Kilty) says:

I have often heard people say that despite their arthritis they go on fighting and pushing themselves as giving up would be wrong and a sign of failure…All I can say is time does heal, you are not alone and making your arthritis your friend and working with it is a lot less tiring than fighting it all the way.

I think I agree with this way of thinking. I could fight this forever more and still not “win”. Why set yourself up to fail?  I might find a combination of drugs that help, I might not. For the past 20 years I’ve had pain in my feet and trouble walking, not one of the suggestions by consultants, GP’s or physios helped.  That’s not to say they don’t help other people or that they weren’t worth trying, but I think you can miss out on a lot of life by searching for that elusive cure.

I think I need to consider this quote in more depth

the person’s experience of living with their disease, in all dimensions, physically, emotionally, mentally, spiritually and socially.”

How do I feel about arthritis?

1) Physically e.g. it hurts, I can take pain killers or a hot bath, I can go to bed early or make something easy for dinner. I can let the housework go. I can wear comfortable shoes and sit down when I’ve had enough.  The physical side of things is pretty easy to get your head around.

2) Emotionally – The constant fatigue gets me down. I don’t like being a burden, asking my husband to do more when he’s already tired form a full time job.

3) Mentally. Is this different from emotionally?  I’m not sure?  Is arthritis something “I fight” or something “I live with”. Does it define me as a person?  Well, if you’re reading this blog, I’m sure you think it does, but then again, maybe this blog is an outlet, if I whinge about it here,  I don’t have to whinge about it in real-life, to my family or friends.

4) Spiritually.

*
Do I feel like I’ve been given arthritis? No.
Do I think some creator God is punishing me? No.
Do I feel like I’m being punished for deeds done in a past life. No!
Do I feel like this experience is supposed to shape me and make me a “better person”. No.
*

I believe in evolution by natural selection. Evolution depends on random chance mutations.  Somewhere in my family a random chance mutation arose that means some of us get psoriasis and some of us get psoriatic arthritis.  It just happens. My eyes are green. I don’t blame God for that. He didn’t give me green eyes. Green eyes have evolved over centuries and by chance and my genetic inheritance I have them.  The same is true for the arthritis, it just happened.  Shit happens. It’s not part of some master plan.  This is what I believe. I don’t expect others to agree with me.

What I like about Quakers is that you are allowed to explore your own beliefs and experiences and compare them with others. I’ve always believed that I have a questioning mind, which doesn’t do too well when asked to believe things “on faith”. If there is such a thing as a creator God, then he gave me this mind, so I can only assume I’m supposed to use it. Therefore I believe that arthritis just happened, I’ve not been chosen to “suffer” and my life hasn’t been mapped out for me.

5) Socially.  How do I feel about arthritis socially?  For me this is the hardest one to deal with. I try to hid it. I always have. It is how I operate. It almost feels like an ingrained, in built mechanism for living. I don’t want sympathy. If no one knows I have arthritis then I don’t have to deal with other peoples attitudes, assumptions and bl**dy stupid comments (Have you tried fish oil?  You need to do more exercise. You can’t let it rule your life…)

Socially, arthritis definitely affects my social life and has done for a very long time.  How long can you stand at a party/in a pub without sitting down?  How long can you dance at a ceilidh or a nightclub? If you want to drink you need to get the bus/train?  How far is the train station?  How long can you stand and wait for a bus?  How exhausted are you after a week at work? Do you even have the energy to be social?  What about those “comfortable” shoes, they hardly look good when you are dressed up for a night out? Using a walking stick would help, but what if someone saw me?  What would I say?

I think I need to give some serious thought to these things at Quakers, or as Quakers would say I need to consider these issues “in the light”.  I need to think about these things in a non-judging manner, to see what is the best way of living my life, for me.

This also ties into the ideas behind “Breathworks“, I recently read a book by one of the founders, “Living Well with Pain and Illness“, I’ll write a review on it, when I get a chance.

Sharon Kilty’s website reminds me of another quote from Flake HQ (written by a guy with both psoriasis and psoriatic arthritis)

The derm I’m seeing these days said to me early on-with refreshing forthrightness- that he could prescribe ever more dangerous treatments, but opting for them would be my call

It’s my body, for better or for worse, so ultimately I need to decide what risks and treatments are acceptable to me.