Complex Regional Pain Syndrom - My Story

Complex regional pain syndrome, also known as CRPS is a rare, chronic (long-term) and progressive condition characterized by severe pain, inflammation and changes in the skin. Patients commonly describe the pain as a burning sensation, which affects one of the arms, legs, hands or feet.

CRPS used to be known as reflex sympathetic dystrophy - however, when possible causes of CRPS were later discovered, the name was changed.

Experts are not sure what the cause of CRPS is. We know that injury or surgery may have occurred before the onset of symptoms. However, in many cases no previous injury took place and there is no evidence of neurological or physical damage to the affected area.

According to the National Health Service (NHS), UK, and the International Association for the Study of Pain, there are two
types of CRPS:

§  CRPS Type 1 - used to be known as reflex sympathetic dystrophy, Sudeck's atrophy, reflex neurovascular dystrophy, or algoneurodystrophy. No damage has occurred. It is triggered by an apparent trivial injury, such as a fractured or sprained ankle.

§  CRPS Type 2 - used to be known as causalgia. This is triggered by a more serious injury, such as a broken bone or some surgical operation. It may also be caused by a serious infection. In all cases there is clear evidence that nerve damage has occurred.

Treatment for CRPS, which usually includes a combination of physical therapy (physiotherapy) and medications, is much more effective if it starts soon after the onset of symptoms.

As the condition is very difficult to diagnose, it is not possible to make reliable estimates of the number of people affected. A significant number of patients never tell their GP (general practitioner, primary care physician) or doctor if their symptoms are mild. The National Health Service (NHS), UK, believes that approximately 1 in every 2,000 accidents or incidents of trauma probably result in CRPS.

Although CRPS can affect people of any age, first symptoms tend to become noticeable in patients aged between 40 and 60 years. Experts say that more females are affected than males.

The severity of symptoms and frequency of episodes of CRPS vary enormously. Some individuals have repeated CRPS episodes throughout their life, while others have symptoms which go away forever after a few months.

According to Medilexicon's medical dictionary:


Complex regional pain syndrome type I is "diffuse persistent pain usually in an extremity often associated with vasomotor disturbances, trophic changes, and limitation or immobility of joints; frequently follows some local injury."



In 2008 I happened to sew all the way through my finger as using my embroidery machine. Was finishing off the very last gift for Christmas on dec. 20.

So I am quite familiar to CRPS as this happened to this finger and I do still have some left.


On oct. 5. 2013 I did fell of the stairs we have in our home, 3 steps down and after a long time they found out that I did broke my foot in 2 places.

I did fell down very odd as you see the burning mark on top of my foot, on pics below,  that is how I landed. So the foot must have been twisted quite a lot.

Foot is broken under the heel and on the outside of the ankle some below the burn mark.

I told them that I did suspect it has CRPS as of me being familiar to this as of the picture where you see the sewing machine needle. It was going in from the left side of the finger and came out on the right side just a millimeter from the bone.  I did recognize all the Symptoms and yup, CPRS is sure was.


These pics were taken within a few days after the injury.

Today my foot looks like this, swollen and living its own life which I am not a part of, yet.

  This picture was taken wednesday march 5. 2014

After 5 month I am still not able to use my foot, stand nor walk. Can not wear a shoe either.

The foot (leg up to the knee) is always very cold and do not like any cold stuff at all, it sweats, burns and hurts like "...."   The leg do not like any kind of touch at all so wearing pants, socks ect is extremely painful. I use a kind of tube and over that I have a sock, the inner part of the Walker Boot, again a sock.. and on top of that a very thick sock as no shoe. 

It can be very hard to undestand if you don't know anything about CRPS or have had it yourself.

You see my foot is now kinda deform and swollen a huge change from the first pics... huuh.

If the foot is down in normal position for longer than 5 minutes it sweels up so fast you can see it while looking at the foot.

So not much I can do others than half sit, half lay down to prevent the swelling. The skin shines and peels of. Not able to wiggle neither the foot nor the toes any.

This picture was taken sunday april 6. 2014

After 6 month, still a problem! Quite Swollen, shiny and discolored.

Once in a while I could run screaming away... that is, -  if I could run

   This picture was taken saturday may 3. 2014 .. Ouch, hurts pretty much!

Treatment .. is a funny fellow as there seems to be none, but time. I do go to rehabilitation - training and I do train all I can not only on RH but at home as well... 

My foot is complaining a lot but I told Old T-Rex to behave and let us be Friends instead of fighting eachother.

I use my wheelchair outside the house as we have an old one not any handicap friendly and my knees for crawling inside the house!

Living in the sofa can be quite challeging, trust me, I know!!

I always work on being positive and try find a positive attitude no matter what, as I find no reason to to sit down and cry.

I have only one life and wish to live it to the fullest

If you have any questions about CRPS please feel free to write me using the contact button on the front page.


I still work on getting my life back and we finally got the stair lift, that is a blessing as now I am able to get upstairs, what a treat.

Still live in the sofa and as of the lift I can now reach my sewing machines and sew a bit now and then and as much as the foot allow me to.

Thank God that TV is invented, - so goes for crochet hooks and knitting needles

Today we have january 13. 2017 and we are status quo ... still have a lot of problems after more than 3 very long years   T