Tag Archives: CRPS

Hello, Stranger. How’s your CRPS?

It’s been a while. I haven’t written a new post since May. If you’ve read previous posts on the pain of CRPS you’ll know how it sometimes affects my creativity.

Chronic pain knocks the stuffing out

It’s like there’s no energy left for anything other than crawling back into bed. With an extra pillow to support the throbbing arm. With a hot water bottle to ease the painful shoulder. With a heated lavender pack under your neck. Sexy, huh?

In the early days my hand was swollen. If you Google images for a CRPS hand guess whose comes up?

CRPS hand

yes, folks, that’s me

I found I could use the keyboard with one hand but sitting at the desk in constant pain didn’t get my head in the right place for writing, especially the kind of fiction beloved by women’s magazines. Besides, my head was in a fog most of the time due to side effects of various medications. But I could edit. So, little by little I managed to get my first two novels out.

Oh, that seems so long ago.

CRPS beginning

CRPS beginning

Where my CRPS is now

The swelling has gone now. Thanks to early intervention my claw of a hand is more user-friendly. (You cannot peel a potato with one hand, not to mention putting  on a bra!)

Now I can do most tasks beyond my capabilities at the outset. And I’m grateful for that. I still drop things and take twice as long as other people at the supermarket cash desk but if I have a word with the cashier beforehand they’ll go more steadily for me. Top marks to Tesco on this one – always happy to help.

tesco

top marks for Tesco

But it seems my CRPS has spread to other places in my body. It’s gastro-intestinal stuff now, people. Look away now if the subject is too distasteful.

I have cyclical vomiting and diarrhoea. And it’s becoming more frequent. I’ve tried to ascertain which foods might be culprits and I know now to avoid heavily fatty meals but, still, some days the cycle begins without any reason, it seems to me.

I have an appointment to see my doctor next month which, by coincidence is CRPS awareness month.

crpsawarenessmonth

CRPS awareness

My doctor knows how I feel about taking medication. I control the amount I take. Rigorously control. However, as I realise I’m a candidate for osteoporosis due to the CRPS I’m going to ask for a Vitamin D check. If I can avoid further damage to my bones by taking a vitamin supplement, I will swill it down gladly.

In the meantime, cyclical vomiting permitting, I continue with my writing endeavours.

The Sandman and Mrs Carter is under review with a publisher. I’m also revisiting Queer as Folk, my second collection of short stories.

And I’m getting my orange outfit ready for CRPS Awareness Day.

crpsawareness

CRPS awareness

Christmas CRPS

I was diagnosed with CRPS last Christmas after being knocked down by a careless driver. I still tried to sit at my computer and write. A whole year has passed. What have I done with it? How will this year’s Christmas CRPS affect me?

CRPS arm in cast

Christmas 2013

Keeping things positive

I could write about the effects of constant pain, lack of sleep and side effects of medication etc. etc. In fact, I could write about these things till the cows come home. Recently, I’ve had to concentrate on just these issues in order to write my personal account of how CRPS affects me to give to the medical experts who represent the insurance companies involved in my case.

Here’s a sample of what I gave them

Daily Difficulties

driving

putting on my bra

getting in and out of our sunken bath

preparing meat and vegetables for dinner

lifting heavy pans and casserole dishes

styling my hair

opening tubes, bottles, packages

fastening jewellery

fastening buttons

carrying shopping bags

taking coins from my purse

putting on tights or stockings

holding a fork properly

manoeuvring the vacuum cleaner

putting large items on the washing line

changing bed sheets

baking

sewing

knitting

picture framing

using my computer keyboard

holding the music in the choir

opening doors

holding my camera and taking photographs

In all things I am now clumsy and slow. I frequently drop things. My activities are limited. I am often very tired and lacking energy. 

I am extremely grateful for the excellent medical treatment I have received here in France compared with others elsewhere who have the same condition and have waited a long time for a diagnosis. I am doing everything within my power to help myself get better. I have researched CRPS and learned what other things I might do to make life easier. I know that this condition can continue for many years. It seems nobody is able to tell me how many more years I will suffer from CRPS.

You can see how difficult it is to remain positive when all that load of stuff is going on. But this insurance question is important. I have this condition as a result of someone else’s thoughtlessness while he was reversing his car. I have to fight for my rights. Soon I’m going to need a lawyer.

CRPS hand

early stage of CRPS

In the meantime, though, look at what I have been able to do. Two books published is no mean achievement. It’s true they were already at the final edit stage but still I count their publication as an achievement. In some respects I suppose you could say that my enforced limitations actually helped me to get those novels ready for publication.

My left arm is weak but I’ve got a right one.  There was a time when I couldn’t touch my head.

CRPS hand

the limit of my reach

Now I can. Only just and it hurts but it’s an improvement.

Earlier in the year I suffered from side effects of all the medication. At the moment I’m doing okay in that respect.

Last Christmas I couldn’t do our Christmas decorations around the house. This year I’m going bananas putting them everywhere.

Christmas CRPS 2014

We have three Christmas trees: one in the sitting room, one in the hall and one outside on the terrace.

Christmastree1

Number one tree in the living room

Christmastree2

outside tree

I’m loving decorating the house. So what if it’s taken me three days already to do what used to take one afternoon.

When the pain kicks in and it gets too much I stop and sit down with a heat pad on my shoulder. Himself has to do the high up things as I can’t reach.

I’ve even covered all the windows with Christmas clings I made years ago.

Doing all these Christmasey things has made me feel more like myself.

Christmas window

a joyful Christmas window

That’s a happy window, isn’t it? I can look forward to 2015. I know there’s going to be more pain and more daily difficulties. I’m prepared for them. I will not let them beat me.

Season’s Greetings to all my readers and a joyful New Year. To other sufferers of CRPS – hang in there. Stay warm.

How CRPS is affecting me.

crps badge

no cure yet

I won’t explain CRPS. You already know what Complex Regional Pain Syndrome is or you wouldn’t be reading this. In previous posts I’ve introduced Lady Penelope Strongbow and made jokes about twitches and spasms. I’ve shown you the clinic where I attended 5 days a week from 8:30 am to 3:30pm. April to July.

I’m in month 8 of CRPS treatment.

I still can’t make a fist. I still drop things. I’m on leave from the clinic for what my therapist calls a therapeutic break, but I still have one hour of physiotherapy every day.

The pain is . . . now here’s the thing. I weaned myself away from pregabalin (Lyrica). I quit Tramadol after only three days. I’ve stopped taking NSAIDs because you’re not supposed to keep on taking anti-inflammatories indefinitely.

CRPS hand

where do the spasms come from?

I’m coping with the pain. It’s as if my brain has taken over and, just as it blocked out the trauma of being hit by a car, it’s keeping the pain at a tolerable level without too much pain relief. At night I take strong Codeine. Not every night. It makes me constipated.

But,

Something else is happening in my CRPS brain

This week I had a bizarre experience. I FORGOT. I forgot EVERYTHING. I didn’t know what I was doing or what was happening around me. Apparently I didn’t know who was visiting us nor how they’d arrived or when. I didn’t understand why my hand wouldn’t work. I had FORGOTTEN being hit by a car.

Himself has talked me through the strange things I was saying and it’s very alarming. In fact, it’s terrifying. I slept for most of the day afterwards. But I think I’m beginning to understand.

I remember feeling stressed that the house was noisy with people. I can’t cope with too many voices speaking at once. I was worried about one lot of visitors leaving and the need for changing beds and so on for the next lot. GB arrived home with an attitude problem and charm deficiency ( there I go joking about it again). I didn’t want to have to say goodbye to my daughter and grandchildren – I’ve seen them only once this year since CRPS because I’m unable to travel alone. I was worried about how she would drive with the kids to the airport through the French péage system. I was anxious that it would be a long time before I saw them again.

My CRPS brain slipped into defence mode.

I believe this is what happened. My brain is trying to protect me from too much pain. It’s fully occupied attempting to keep my CRPS pain at a tolerable level and the added stresses amounted to overload. Something had to go.

I Googled CRPS and memory loss. It’s all there. Stuff I hadn’t noticed before. I knew what to expect in terms of bone deterioration etc. But memory loss? How much more is this condition going to throw at me?

I’ll have to learn to deal with it. Himself will warn me if it looks as if it’s happening again and I’ll get myself out of the way – go and lie down – whatever it takes.

I won’t beat myself up about a day’s writing time wasted or the days when I don’t feel like cooking or getting out the vacuum cleaner. I’ll stick to the eating plan – Dr Hooshmand’s Four F’s. By experimenting with this eating plan I believe I’ve identified certain food culprits which can make my pain worse.

I’ll do whatever it takes to get part of my life back.

The battle with the French insurance companies is going to take a lot of my energy. But that’s another story for my next post.

Please feel free to leave a message. I’ll get back to you. Or share with  friends on FaceBook, Twitter etc.  CRPS sufferers benefit from hearing others’ stories. They don’t feel so alone. Thank you.

A pain in the Arts.

Pain shut off my creative spark. I didn’t have the faintest glow. Not even a hint of warmth, never mind sparkle. So, I got to thinking where does creativity come from? And where has it gone now that I’m battling this CRPS diagnosis?

How can we measure suffering?

pain scale

on a scale of 1 to 10 where would you place your pain?

Doctors usually ask you to rate your pain on a scale of 1 to 10. What I’m looking for is proof that there’s a connection between pain and creativity so I can understand why my light went out temporarily.

Doctor Joy Madden who’s the self development editor for Bella online says that, actually, we might need suffering because it can have a positive effect on our creativity.

(Not mine, Doctor Joy)

Indeed, her article goes on to say, and I quote:  “Some of the most famous creative works have been accomplished when experiencing the greatest pain.”

(Oh dear)

In Pain and the Creative Process, author K. Ferlic says:

Although pain is not inherent to the creative process, it is integrally tied to the creative process as performed by humans because of how we create our experiences. Pain and the creative process are related in several different ways.”

Similarly, in Pain and suffering and developing creativity, 

Cheryl Arutt, Psy.D., a psychologist specializing in creative artist issues, says “Many creative people carry the belief that their pain is the locus of their creativity, and worry that they will lose their creativity if they work through their inner conflicts or let go of suffering…”

(Oh, double dear)

It seems to me that in articles such as these they’re talking about the need to have experienced pain of depression, loss, longing and desire to fire up the creative processes.

I’m not talking about the ‘tortured’ artist who creates on the agony in every brush stroke or word of what it felt like to be dumped by her precious ‘other’. I think it’s only common sense to see that if you want to write about heartbreak, it helps if you had it yourself at one time.

I’m talking about having CRPS right now.

CRPS pain scale

CRPS pain scale

It hurts. It really hurts. Now. And now. And NOW. Over and over like Groundhog Day.

‘Look out! Your wrist just got broken,’ mine tells me. ‘Look out! Your wrist just got broken. Tell your arm your wrist just got broken. Tell your elbow your wrist just got broken. Tell your shoulder your wrist just got broken. We’re all broken. NOW. Broken. BROKEN.’

You get the picture. But other people don’t. They’re so happy to see you out and about they slap you on the shoulder or they rub your arm and don’t realise they’re putting you through agony. I try to anticipate and turn to the side but I’m never quite quick enough.

Chronic pain is tiring. Exhausting. Medication gives you nausea on top of everything else you’re putting up with. You can’t sleep so you’re even more fatigued. You begin to avoid going to places where people will rub your arm and tell you they’re glad you’re all better now. And, yes, from time to time you get a little depressed.

With all of the above going on, how could anybody find the energy to be creative?

So where do ideas come from?

Read Neil Gaiman’s thoughts on this. I like his thinking. I like the reference to daydreaming. I like how he says ideas come often when you’re doing something else.

But, when you’re in real, excruciating pain, right now this second, you don’t do something else; you don’t do daydreaming. You’re not relaxed enough for those things. All you can do is try to cope with your pain and get through the day, the hour. When you are relaxed it’s because medication got you there and you probably wouldn’t even remember how to write a shopping list in the state you’re in, never mind write the next five thousand words.

I found I could edit, though. I could look at what I’d already written and reshape it, get it ready for publication. So there is a positive to come out of it. Maybe without the enforced limitations on my capabilities I might never have got around to editing Patterns of Our Lives. I’m pleased and proud it’s out there and selling.

But, don’t tell me pain is conducive to creative arts. It only works in the past tense.

Lady Penelope Strongbow’s hand. A day in the life of . . .

Poor Lady Penelope Strongbow. The twitches continue. Great shuddering nervous tics at the most inopportune moments, like when there are slippery peas on her fork or a mussel is half hanging out its shell. Worse, when the glass of Merlot is full. Correction: was full. You get my drift.

Full days at the CRPS clinic continue.

It’s coming up two months now – everyday, all day. Before that, I had February and March at the physiotherapist every day for two hours. Ouch. Four whole months now of therapies coming out my ears and my hand still looks like Lady Penelope’s. Double ouch!!

But I’m riding in style. My chauffeurs come to collect me each morning.

Ambulance for Lady Penelope

your carriage awaits, m’lady!

We rattle along in fine style to the clinic.

First therapy of the day is what they call Bains Écossés, but I don’t think the Scots ever had any say in that. Anyway, hot and cold treatments. Very hot and Very cold.

Lady Penelope hand baths

fill one with hot, one with cold

New thinking says don’t ever use ice for CRPS (Complex Regional Pain Syndrome), so it’s difficult to know who to believe.

Next is Physio.

Lady Penelope treatment room

50 Shades of ouch!

After all that bending and stretching, it’s time for the pool.

Lady Penelope pool

33 degrees . . . heaven.

After my hour in the pool it’s time for the next therapy which is a bit like Occupational Therapy in UK where focus is on small motor movements.

Needless to say, I drop things all the time, due to the fact that I have no grip and I can neither close my fist nor stretch my hand out flat.

There is a rest room at the clinic. But not for me. My days are full on. I squeeze another five minutes on the pulley wherever I can.

no rest for Lady Penelope

no time to rest!

Then it’s off to the Robot chairs.

Les Robot-Chaises is what I christened them and the name has amused some. Not all, but some.

 

CRPS Robot Chair

you stick your arm in it.

Like this.

Robot chair

upwards and outwards . .

And after all this, it’s lunchtime. I’m hungry and thirsty by now. My breakfast yoghurt feels like a lifetime ago. So, the welcome sight of the lunch table is something of a highlight in my day.

Lady Penelope lunch

we’re even allowed wine!

Then it’s back on the CRPS treadmill to repeat all the morning’s treatments and exercises. Is there any wonder all I want to do when I get home is fall asleep?

CRPS treatment. A personal account

Treatment for CRPS varies. I think I’ve been lucky here in France that my condition was recognised and diagnosed fairly early. It doesn’t make it hurt any less, but it gives me abetter chance of recovering some of the use of my left hand.

When the lower part of my cast was removed Dr B wrote Algodystrophie on a prescription for 20 sessions of physiotherapy.

CRPS fingers

CRPS had already set in

I’m going to call him Doctor BonnyBones because he’s the bone man and I like giving people nicknames.

By some strange quirk, all the doctors I have seen have surnames beginning with ‘B’.

Physiotherapy for CRPS

physiotherapy logo

In my opinion, physiotherapy isn’t enough on its own. My therapist did a great job of desensitising my hand so I could bear someone touching it.

Non-sufferers find it hard to understand why something as simple as a change of temperature can cause the CRPS patient even more pain.

I had physio every day. I feel sorry for sufferers who get to see a therapist only once or twice a week. It isn’t enough. I had 20 sessions, but it wasn’t enough. It was a beginning and I’m grateful to M for pestering me to go back to my general practitoner for better pain relief. Without adequate pain relief, therapy sessions are unbearably painful.

Is there a cure for CRPS?

No.

Watch this brief video for an explanation.

So, all we sufferers can hope for is an improvement in mobility and a means of controlling the pain.

After my 20 sessions of physiotherapy showed only minor improvements, Dr BonnyBones referred me to to the nerve specialist. I’m going to call him Dr Bazooka. It unnerved (pun intended) me a little to see that Dr Bazooka operated out of an annexe tacked onto a geriatric hospital, but he lived up to the nickname I’ve given him. He blasted through French bureaucracy, picked up the phone and spoke to a colleague.

I was booked into a day hospital.

I arrived on April 1st. I didn’t know I was booked in for 8 weeks! Some April fool, huh?

To be continued. See how Lady Penelope Strongbow gets on at the clinic.

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CRPS and Lady Penelope Strongbow.

Lady Penelope Strongbow has her very own CRPS mission.

It’s a personal mission. Things tend to be on a personal level when you suffer from this disease.

CRPS takes over your life.

Complex Regional Pain Syndrome changes your life. However, Lady Penelope Strongbow would like to think that somewhere along the line just maybe, perhaps, her story might help others, or at least give them a moment’s amusement when they read her story.

(You can read why I call myself Lady Penelope Strongbow in my previous CRPS post.)

It began last December. Just before Christmas and all the stores were full of pretty things. She had just returned her shopping trolley to the bay and was walking back toward her car when she heard a lot of shouting.

trolleybay

safe in the car park?

I wonder what people are shouting for? she wondered.

Then, blackout. Just like that. The lights went out and there was pain like you wouldn’t believe.

Someone had reversed his car into her making her fall and causing two breaks to her wrist and forearm and a very sore head where it had bounced on the concrete parking lot.

The cast was enormous.

CRPS origins

trying to write a post for my website

CRPS began almost immediately. When the upper part of the cast was removed, the Lady Penelope fingers were already in evidence and the pain affected the whole arm, elbow and shoulder.

CRPS fingers

bent and twisted fingers already painful to touch

CRPS had already set in, but the diagnosis wasn’t given until the rest of the cast was removed.

Three painful CRPS months later

It took three whole months to work out pain relief that didn’t cause me to vomit or give me diarrhoea or space me out so far I didn’t know which way was up.

By this time , we had various test results. The echograph (like ultrasound) showed no serious tears in the soft tissue, but lots of inflammation.

The scintigraph (bone scan) came next. The bone scanner machine is as futuristic as Thunderbirds used to be.

scanner for CRPS

Lady Penelope was suitably impressed.

Results of the hand/wrist scan show where CRPS is affecting the bones.

CRPS dark spots on bone scan

dark spots show CRPS activity

You can see how every part of my wrist and fingers is affected.

That’s why I have a Lady Penelope hand.

That’s why, like her, I can’t open doors.

CRPS hand

no chance!

 

It’s why when I put my left hand on top of my head, it looks like this –

CRPS hand

this is far as it goes!

And when you’ve got a CRPS Lady Penelope hand, you’d better forget about opening that pack of doughnuts.

CRPS hand can't open packet of doughnuts

even opening packets is too difficult

Squeezing the packet between my thumb and forefinger is all I can do with my Lady Penelope hand.

In my next post, I’ll have information about the treatment I’m receiving.

There’s a lot of treatment. Every day. As I’ve already said, CRPS takes over your life.

Please feel free to leave a comment, and do please Share if there’s someone you know who might like my posts.

Till next time,

 

Lady Penelope Strongbow. On a mission.

Let me introduce Lady Penelope Strongbow. Her name is going to take some explaining. Bear with me.

Remember Thunderbirds? Of course you do and of course you’ll know who Lady Penelope is.

Lady Penelope

look at her hands!

Oh, but she was elegant, wasn’t she?

Not a hair out place.

Makeup perfect.

But hands as wooden as they could be. She might have that left hand on the door handle, but I can tell just by looking there was no way she was ever going to open it.

Now have a look at my left hand.

Lady Penelope hand

see the difference?

My left hand can’t open doors, either.

In fact, my left hand can’t do very much at all.

Lady Penelope Strongbow was conceived on December 14th 2013 when a car reversed into me and knocked me down. She was born six weeks later when the cast came off my broken wrist and arm and I learned I had developed a condition called Complex Regional Pain Syndrome.

I knew before the cast was removed that something was very wrong. My fingers were twisted and swollen and the pain in my arm was excruciating.

From time to time and without warning I get spasms that make me shudder. It feels as if I’ve been shot by an arrow. Himself recalled the Strongbow  cider advert with arrows landing with a thwack.

Lady Penelope Strongbow

Ouch!

Here in France, the condition is still called algodystrophie. It has other names too, but no matter what you choose to call it, it ranks among the most painful conditions a person can suffer.

I’d never heard of it. I had no idea how many people suffer with it and, once I began to research, I realised how little coverage CRPS is given.

I’ve seen a bunch of specialists and not one of them can give me a definite prognosis. The latest one has, at least, been more open. He took my good hand and looked me in the eye.

‘I’m the doctor,’ he said, ‘and I don’t know how this is going to go. We have a lot of work to do.’

I’m in this for the long haul. Dr Bruno is the first one to use years rather than months in his estimate for improvement of mobility in my hand, wrist and arm.

We have a lot of work to do?

It sounds like a lot of painful physiotherapy and other tortures.

It’s time to call in International Rescue.

Lady Penelope is on a mission.