Wednesday 28 May

I have ben watching videos on the net about RSD/CRPS, it is quite depressing, terrifying in fact, people who have been severely incapacitated for years.  Because the pain is creaping up the arm, I am starting to be quite concerned. My scar is red and shiny, and very sore tonight; had shooting pains all day, tolerable but persistent. Skin very sensitive on scar and around wrist.

I have found this blog (One girl’s journey into CAM) relating somebody’s _successful_experience with acupuncture (CAM being Complementary Alternative Medicine). Have considered acupuncture but has only found two studies where acupuncture has registered positive results with crps; some publications mention the fact that because acupuncture is using needles, these could add more trauma to the already traumatised area so acupuncture could be risky.

I have an appointment with a musculoskeletal specialist next Tuesday so will wait for his advice and see which treatment he will recommend; probably a course of steroids, not too keen on these but we’ll see.

Tuesday 27 May

Every day is different, one day my hand and fingers will be extremely stiff and sore, another they will be more supple and the pain will only be intermittent. Some days the pain goes up to the elbow and shoulder, some days it doesn’t. This is what makes it difficult, this unpredictability and lack of control.

However my strategy of constant mobility and deep massage seems to be working, my fingers are less hard to the touch, I think they are less swollen and I feel they are more flexible, freer in their movements (except for the middle finger which remains a big problem and still prevents full fist).

Yesterday I had shooting pains in my other wrist for the first time, I wonder if it’s just a coincidence or whether it is related to the CRPS in my right hand.  I read somewhere that the other limb can also become affected …

Tonight I can feel my fingers and palm seizing up and becoming like a piece of wood, every movement hurting. I hate this feeling but there is nothing I can do, even massaging deeply  doesn’t help much when my hand is flaring up.

Sunday 25 May

Friday was not a good day, extremely tired; hand needs to be massaged frequently to keep some suppleness and reduce pain. Is stiff and swollen. Could only manage a few exercises.

Saturday: did some gardening, not too bad but clumsy. Burning skin and some shooting pains in wrist, and up to the elbow and shoulder.  Dribbled ball and threw it against wall, threw darts. Fingers swollen and sore.

Sunday: long walk in the morning to Maroubra beach, wore cotton ’sock’ on hand and wrist, can’t stand the wind on skin. Saw dolphins frolicking in the ocean, great view, sunny day, went to the garden in the afternoon and used hand OK.  

Am in quite a lot of pain at night, extreme skin sensitivity (I put the silicon sheet on the scar and this helped a bit) and electric pains in thumb and wrist, elbow and shoulder are better though.  I had to deep massage the palm, fingers and forearm almost continually to get a bit of relief.

Thursday 22 May

Not a bad day today, after an average night when I was woken up twice by either pain or lack of feeling in the wrist and fingers. The strategy I have adopted is to constantly stimulate the wrist, palm and fingers through deep massage and rubbing; this seems to help with the stiffness and intensity of the shooting pains. Deep massage with my left hand can be quite painful, especially on my recalcitrant middle and little fingers, and over the scar but it brings blood into the hand and seems to short circuit the skin sensitivity and burning sensation. As soon as I feel the burning pain starting to ache, I rub vigorously the area; when it is over the scar, it can be excruciating but I persist because after 2 or 3 minutes the pain diminishes and the tissues seem to regain some suppleness and as a consequence the pain is alleviated and does not become as intense. It also gives me a feeling of retaining some control over these pains, which really helps.

Another thing it does, I think, is to keep my brain aware of my right hand; I have a feeling that these constant reminders help reconnect the brain with my hand.

Constant movement and rubbing also help me use my hand more during the day, but it is a constant battle and I cannot let it stay idle for too long, have to stay vigilant, it’s a bit like being at war with your own hand/brain and trying to stay one step ahead on them.

This diurnal battle actually helps the nights; my hand was a bit more supple this morning than usual, less discoloured and more ‘irrigated”, more responsive when I woke up, it took less time to wake it up.

Exercises today:

- forced extensions

- slow extension and flexion with weight (1 kg)

- throwing darts

- dribbling and throwing/catching ball

- rice manipulation

- pushing away from wall

plus I started doing “push-ups” against wall, standing up, with my hands at shoulder level; a bit awkward but OK. My right shoulder and elbow are still hurting so this was my way to try to give them a workout.

I have also started carrying a 2.5 kg weight in my right hand with the arm extended along the body. I have read that helps the brain’s awareness of the hand.

Wednesday 21 May

The pain is definitely going up the arm; shoulder very stiff when I woke up and I had a deep ache on the inside of the elbow all day.

I have resorted to giving deep massages to my right hand whenever I can during the day: each finger, top and bottom of palm, including the scar; the pain can be excruciating to start with but after a few minutes it becomes more bearable and I can feel the tissues softening and the hand better irrigated and more supple; middle and little fingers still the main problem. These frequent massages really help me keep the hand and fingers active and feeling somewhat functional; it also gives me some control over this recalcitrant hand and forearm.

I also got some pain in my back today for the first time, at the level of the kidneys; am wondering if it is related to CRPS; quite scary if it is however it can be something totally independent from the condition.

Did a lot of exercises tonight, slow extension and flection with 1 kg weight, forced extension with left hand, arm in back and pushing body away from wall.

Am still wearing silicon at night over the scar, plus a compression glove over the whole hand and a splint that maintains the wrist in extension.

Tuesday 20 May

Woke up with pain in shoulder and elbow. The pain seems to be creeping up the arm; got the pain in the elbow in the afternoon as well. Felt extremely tired all day.

Swelling increased today on back of the hand. Scar extremely sensitive and palm very hard to the touch. Not a good day but I made sure I used the hand as much as possible. Mobility hurts first but the hand feels better after sustained movement. Dribbling a ball, throwing it on wall and catching it with both hands, all this helped, it’s also quite a ot of fun to use the hand in this way.

I also bought a dart board and threw darts for about half an hour; was able to be quite accurate at the end of the session, felt more in control of my hand; it also felt better, more supple.

Walked for an hour.

Tuesday 20 May

Resource on CRPS (in French)

Le syndrome de douleur régionale complexe quand ça fait mal…: syndrome douleur (pdf)

Monday 19 May

Scar has been irritated all day, plus shooting pains. Only been able to do a few exercises.

Sunday 18 May

Did a lot of gardening on Saturday, tried to use my right hand to grab soil, plant seedlings and pull up plants. Hand was OK at night.

Today though hand is not good, maybe did too much yesterday. I am extremely tired, no energy, am in quite a lot of pain, back of hand swollen, sides of scar raised, red and extremely sore to the touch. Hand feels wooden, have lost a lot of flexibility.

Thursday 15 May

Scar is not better, quite painful to the touch and swollen. Regular ‘electric’ pains are continuing, from wrist to elbow and within thumb.

Had an appointment with my surgeon and he diagnosed a ‘reactive scar’ and CRPS, and is referring me to musculoskeletal specialist; thinks I should have steroids to improve the condition.

Had a physio session; scar and hand massaged (burning pain improved after a few minutes) and asked to dribble with ball and throw it against wall, catching it with both hands. The only positive of the day was the improvement in the flexion and extension of the wrist (extension reached 55!); this is the result of a lot of work I did during the last week; I kept at it despite the increasing pain so was glad it had born fruit. It proved I can regain some flexibility, even at this late stage.