Tag Archives: chronic pain

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.

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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