Category Archives: CRPS

Internal CRPS. It can affect internal organs.

Internal organs can be affected by CRPS (Complex Regional Pain Syndrome). This condition has had so many name changes there’s no wonder many medical professionals have never heard of it. Many sufferers have to wait too long for a diagnosis, wait too long for adequate pain relief, wait too long for answers.

What body parts are affected by CRPS?

It’s well documented that CRPS affects skin, hair, muscle, bone, nerves. Even nails.

inside CRPS nails

image from pain and depression.com

I know patients who cannot bear the lightest touch on their affected arm or leg. Their limbs are swollen, the skin reddened, shiny and swollen as if it were about to burst. You can tell they’re in agony just by looking at their affected body parts.

inside CRPS foot

image from slide player.com

 

Some people stay in this ‘heated’ CRPS condition for a long time. Their skin is badly affected and may develop nasty sores.

I’m past that stage now. My arm and shoulder always feel cold. Extreme cold causes me more pain. I need more pain relief in winter than at any other time.

CRPS cold

image from The Mighty

What about internal body parts you can’t see?

If nerves and skin, muscles and bone are so obviously affected by this painful condition doesn’t it make sense that internal body parts are also affected?

It’s just common sense to me. But then I’m not a medical expert.

In my last post about CRPS I wrote about gastric problems. When I saw my GP I explained what was happening and how I believed there was a connection with CRPS.

internal gastric organs

digestive system

He wanted to eliminate other possible suspects. I told him about the kind of diet recommended by Dr Hooshmand and how I’d already taken that advice on board. Nevertheless, my GP said, we’d have to go through the elimination process: blood tests, scans etc.

I don’t have celiac disease. I’m not diabetic nor even borderline. One by one all tests came back negative so we eliminated other possible causes for my bouts of vomiting and diarrhoea. Then I had ultrasound.

I have Gallstones

‘Oh,’ I said to the nurse practitioner. ‘You said that in the plural. How many?’

‘Too many to count.’

internal problems

ultrasound image from ultrasound cases.info

That isn’t me in the image above but you get the picture. Because I don’t have the kind of pain normally associated with gallstones there’s no treatment necessary. Apparently. Yet.

‘There are probably tens of thousands of people walking about with gallstones just like yours who know nothing about it,’ said the nurse practitioner.

That’s all right, then. So what’s causing the vomiting? And the other?

CRPS affects internal organs

It’s official. People with qualifications say so. Here is a link to how I knew that before I went to see my GP.

I don’t blame him. He can’t know everything. Plus, he’s bound by procedures. But, no treatment at all?

I guess that means I just have to put up with it.

In the meantime I stay away from fatty things and don’t eat too much sweet stuff. I try to be sensible but when the CRPS pain flares up I know it won’t be long before I dare not wander too far from the bathroom.

The good news is: red wine is NOT on the list of things to avoid completely.

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Author with CRPS signing out now.

Chronic pain and the author. Not enough good days.

In my previous post  ‘A Pain in the Arts’,  I wrote about how chronic pain interferes with creativity. The chronic pain sufferer is tired. All. The. Time. When good days dawn you want to make the most of them. On my own good days I want to write.

chronic pain and writing

on good days I want to write

CRPS chronic pain and writing

I’ve had contact with another CRPS sufferer who wants to write when he feels well enough. We know we have to pace ourselves. There isn’t enough energy to go round all the simple, everyday tasks that we previously undertook without a second thought.

chronic pain of CRPS

what having a god day means

I don’t beat myself up about not being able to do everything I’d like to. So I take it as a measure of success that this year I’ve published two books: my third novel and a second collection of short stories. I work at a much slower pace than I used to. Pain relief medication sometimes dulls the ache but makes me feel groggy.

If you’re reading this as a sufferer of CRPS or some other chronic pain illness you don’t need me to explain the myriad ways it affects you. How can you describe to others what it’s like?

chronic pain descriptions

words to describe pain

All in all it’s TIRING.

2017 – my fourth year of CRPS

This year has been worse than last. I’m disappointed that even during warm weather I sometimes feel knocked out. I have cyclical bouts of vomiting. The following is taken from the article: The Spread of Complex Regional Pain Syndrome (CRPS) by H. Hooshmand M.D and Eric M. Phillips -Neurological Associates Pain Management Centre, Vero Beach Florida.

INTERNAL ORGAN INVOLVEMENT

CRPS invariably involves the internal organs. Usually the skin surface is cold at the expense of increased circulation to the internal organs. This increased circulation can cause osteoporosis, fractures of bone, abdominal cramps and diarrhea, disturbance of absorption of foods with resultant weight loss, water retention with aggravation of premenstrual headaches and depression, persistent nausea and vomiting, as well as severe vascular headaches mistaken for “cluster headache”.

In addition, CRPS can cause the complication of intractable hypertension which responds best to alpha I blockers (Dibenzyline, Hytrin, or Clonodine). CRPS can cause attacks of irregular or fast heart beat, chest pain, coronary artery spasm (angina), as well as disturbance of function of other internal organs. A few examples are frequency and urgency of urination, respiratory disturbance such as dyspnea and apneic attacks, and attacks of severe abdominal pain.

Planning your day

This morning I was woken by pain at 4.30am. Yesterday it was 5 am. The day before 4am. I get up, make a drink and take medication. When the pain eases I use those hours in the early morning to write, research or edit what I wrote last week.

When everybody else is up and about I start on household tasks you can’t do at 4am or you’d wake up the neighbours. There’s no wonder I often don’t feel able to do much more at all in the afternoon.

I can’t commit to definite arrangements. I can’t always agree to be at a certain place at a certain time. People must understand if I don’t make it it’s because I’ve gone back to bed. So I don’t commit to joining groups and clubs. I opted out of the choir I joined until I’m in a good phase again. (See, I’m still hopeful.) I don’t like letting people down.

I’m a member of various social media pages and that works fine because I can join in with discussions at any time. When it’s 4am. here there’ll still be somebody in Denver, Colorado with something to say, or Florida or California. They don’t know I’m sitting downstairs in my pyjamas quietly waiting for the meds to kick in.

Authors put a lot of effort into marketing their work

Unfortunately I don’t. My energy is carefully apportioned. I’d love to build a band of faithful followers of my novels, send out newsletters, join book blog tours and the like. I know improved sales of my books isn’t going to happen by some lucky happenstance.

But I still want to write. Maybe when all my ideas have dried up I’ll find the time and energy to work on marketing but at present I can’t do both. So be it. May we all have a low pain day.

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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?