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Amadeo’s CRPS Story

2020-03-11

AMADEO’S CRPS STORY

 

Our next Complex Regional Pain Syndrome (CRPS) story has come from a gentleman from the Netherlands called Amadeo. Amadeo’s CRPS story started back in 1995 after he received plaster treatment applied to Amadeo’s sprained foot.

 

This is Amadeo’s interesting CRPS story….

 

Post Traumatic Dystrophy* brought into remission again

 

Each and every day since I got CRPS in my right foot and lower leg back in 1995 – caused by plaster-treatment from an elderly doctor after I had sprained my foot during a holiday in Curacao (Netherlands Antilles) – I have searched for medicines and treatments to counter the pain, immobility and frustration caused by the PD – (P)ost Traumatic (D)ystrophy (*now known as Complex Regional Pain Syndrome).

Yomanda at that time, the “miracle worker“, from Tiel in Holland, stroked with her hand across my right foot and lower leg. She added a blessing from heaven to it and gave me a ‘beamed-in’ small card that I had to put on my foot during the night. The result would either be immediate or within a six-week (6 week) period.

I have been twice to the big hall in Tiel, where Yomanda carried out her miraculous healings in front of thousands of people and went home with a pack of ‘beamed- in‘ cards. I was anxious to go to bed, could hardly sleep and woke up very early in the morning waiting for the miracle to happen. Twenty-one (21) years have gone by now and…… I am still waiting.

 

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In my despair I also visited an acupuncturist in Cologne, Germany, who had won International fame through his acupuncture-healing. There were quite a few people around, patients as well as students, who wanted to learn as much as they could from the great master. The acupuncture guru himself took care of me.  I was led into a small room, put on a bed and the acupuncture started. He put stacks of needles – not only in my foot and lower leg, but also in my arms, chest and neck. (I guess that he did not want to risk forgetting a vital point.)

Acupuncture Alternative Therapy

Acupuncture Alternative Therapy

 

It took two (2) hours then he came in accompanied by some 5 – 6 students, looking with adoration at every move he made.

 

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He took the needles out. That took quite some time because of the great number of healing pins he had put in. Then he looked at me somewhat pensive and asked how my foot and lower leg felt.I wanted to say something and made a first attempt to express that my foot and lower leg felt the same as before, when he interrupted me and said that the realization of what had happened not had not yet dawned upon me. He looked triumphantly at the students, said that another patient with CRPS had been cured and strode out of the room.

I was left bewildered, gasping for breath. My explanation the following day, that I was not going to pay the fair amount of money he wanted from me for the acupuncture healing he had performed on me the previous day, simply because it had not have any sort of effect, caused him to gasp for air.

 

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I had become so fed up of all the experts on CRPS, my next step was to buy the book “The Little Doctor“. In a small chapter “What to do when struck by PD ?” all sorts of advice were given, particularly with regard to food.  One vegetable in particular was presented with a 100% success rate: cauliflower leaves.

Resting your leg on a chair, a bundle of cauliflower leaves had to be wrapped tightly around foot and lower leg and that for a period of three months. At the same time and at regular intervals drinking green tea was highly recommended.

All in all I have been sitting in the ‘damned’ chair at daytime for almost a year. We lived in Boxtel then. In my zeal to battle the PD even ‘quicker’ I took the bundle cauliflower leaves secretly with me under the blankets at night.

 

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Marc, our son in Down Under, phoned me near the end of 1996 to ask if we would like to come to Australia for a couple of months. I told him that there was no point in coming to Down Under as I was unable to walk or stand on my right leg and that he had to push me around in a wheelchair. My answer was therefore a clear NO. Marc, did not take no for an answer. Good-and soft-hearted as he is, he said to me that he would come over to Boxtel to pick me up, if necessary.

So, a few days later my wife (who suffers from Alzheimer disease) and I took the flight to Brisbane. Marc was waiting for us at the airport hall with a wheelchair, which he had hired for a fortnight.

He had pushed me around daily for that period of time. He and I even more, were disappointed that there was no sign of healing or improvement. He told me of an elderly woman, who had serious complaints of rheumatism and had found relief by going to the beach and dabble her feet in the (mineral rich) water of the sea.

 

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As it would do no harm I followed up his suggestion and strolled knee-deep through the water. I did this day after day for nearly two monthsAfter each stroll, which took about 10 min. I went back to our spot and put my foot and lower leg under a pile of hot sand.

Two months later, after I had done ‘it‘ again and had seen Marc and his mother disappear in the distance – they took a stroll along the beach each time I did “my thing” – I was so fed up “waiting for the healing miracle to happen” that I got up and started to walk at the water edge in the same direction they had gone.

I was aware of the risk I took and the many pieces of advice given to me by the great number of ‘specialists‘ on CRPS: ‘Never cross the pain barrier. When you do, you make it worse and will most certainly end up in a wheelchair for the rest of your life.’

It went all through my head, but I could not care. I brushed the thought away. I could not be bothered anymore. The thought of living life sitting in a chair with my leg up on a nearby chair for the years to come was unbearable. If this effort, which I took out of despair, would result in a disaster, well, TOO BLOODY BAD!

 

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I limped for a short while, the cold water felt refreshing. My foot felt painful and stiff. There was a considerable aching but I ignored it and hobbled on.  Suddenly, seeing a small wave rolling towards me, I leapt up – an automatic reflex to avoid becoming wetter than planned – and felt that a great deal of the stiffness had gone and with it, the sharp pain.

My hobbling became a jogtrot, trot and not long after that ……..I was jogging. I was jogging again and it felt as good as in the past. I even managed to sprint the last fifty meters. The miracle I had prayed for had happened.

Back in Holland (Boxtel) I continued doing what I had been doing in Down Under: strolling in the sea at Hoek of Holland. We tried to go there on a regular base – at least once every two weeks – and took two 10 litre plastic water containers back home with us, filled to the brim with sea water.

It took months before I was able to walk and run without feeling pain. I felt happy and full of energy. This wonderful situation lasted until 2012.

 

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I had a painful lower back. I did not know what had caused it. The pain was so severe that I saw a couple of physiotherapists. I ended up seeing one, “Fysio Back Experts” in nearby Eden. They made a scan of my lower back and told me – pointing at the spot – that my back showed too much of a curve and needed to be straightened.

Sitting in the back-stretch machine was not a pleasure, neither were the follow-up exercises, which I was advised to do at home a couple of times a day. The result, after some 5-6 visits at the “Back Experts” was a back, mine, that was hurting more than it did before I received the “healing” treatments. I was told not to worry as the pain I felt was common after these back-healing treatments. The pain would fade and be gone after a few more days.

One or two days before the next visit I felt a flaming pain and saw an upcoming redness in my right (dystrophy) foot while I was shaving in the bathroom. I was shocked, afraid and full of anger of what had happened. The pressure on my lower back by the back-stretch machine combined with the exercises I was to do at home had triggered the ‘inactive’ Post Traumatic Dystrophy and activated it.

 

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It took approx. nine (9) months, during which I tried to implement the same things, actions and treatments I had used and done in Down Under and later in Holland (Hoek of Holland and Boxtel), to make the CRPS in my foot and lower leg recede, i.e. made it “inactive” again.

Instead of going all the way to Hoek of Holland to immerse my foot and lower leg in sea water I found out through internet – source of knowledge and information – that Celtic Sand or “Sel de Mer”, as it is called in France,  is unprocessed sun-dried sea salt (full of minerals) that can be purchased through internet.

That is exactly what I did.  I bought a big bucket, normally used for building purposes, filled it with lukewarm water, added some 200 gr of Celtic Sand and stuck my leg in it. After an hour or so I got my foot out, dried it with a towel and rubbed it gently with DMSO cream.

In addition to the above I took a Fluimicil tablet, dissolved it in a glass of water and drank it. This had to be done three times a day.

 

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When my foot and ankle allowed it, i.e. had a somewhat lesser burning sensation and redness, I limped to the small park, three streets away from our apartment, where -under a climbing device for kids – there is a small strip of sand. I hobbled round in circles time and time again gradually increasing the pace. In doing so I hoped to massage my foot in the same or similar way as was done in Down Under when I walked and plodded over and through the sand of the beach and the dunes.

I repeated the exercise day after day, week after week and that for a couple of months, until I felt and noticed that the movement of my foot and ankle had clearly improved and that most of the pain and stiffness had gone. I had beaten the CRPS in my foot, ankle and lower leg. I felt relieved, rewarded and in great spirits, as you can imagine. That was the feeling I had and which I fostered.

 

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Now it seems that I have to do it all over again. The horribly painful treatment from an urologist, who fully ignored my screaming for pain and begging to stop inserting the catheter, caused a trauma, which in turn triggered the PD into action again. It is sad to say but true nevertheless, there is no proof or guarantee that the CRPS, which feels as if it is full ablaze, will recede.

There is one chance only that God allows a third miracle to happen. I hope and pray that that will be the case. I for one will do my part and am ready to start the flight.

 

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The above passage was sent to my niece in Australia on Feb. 9 as a response to her asking how I was going. Five months have passed since then and a lot has happened.

The big toe and a great part below of my left (healthy) foot showed the very same PD-symptoms as the right foot: red and burning. It felt different too when I walked, a kind of numb feeling. Was it – what is known and feared as “contralateral  spreading” of PD to another extremity of the body ?

I felt desperate, did not know what to do other than plodding and trotting through the small strip of sand for 15 mins at the nearby park. It was February, cold and windy, approx. 4° C.   Both my feet were coloured red and purple.

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I expected, as a result of the extra burden on my PD-foot, that a heavy toll had to be paid and I was dreading the oncoming night. Luckily, this did not happen. There was the same burning feeling, sweating and redness as the day before. No improvement, but no worsening either.

As my left foot kept on showing PD-symptoms I wanted to be certain and made an appointment early April, 2016 with a specialist on PD in The Netherlands.

 

[Tweet theme=”basic-full”]Will u share your #CRPS story either as a sufferer or loved ones/carer like Amadeo did? Contact us! www.burningnightscrps.org[/Tweet]

 

On the day itself I thought that the redness and burning feeling of the left foot was somewhat less than my PD-foot. Was this a clear sign that that the foot was not struck by PD after all and was it something else, not that bad? Gout, perhaps? The specialist would know the answer at least that is what I thought.

When I saw the PD-specialist he asked me if I had ever been troubled by arthritis. As I had suspected arthritis to be a possible cause of the pain in the big toe and toe joint I had an X-ray taken ten days earlier. The result: no arthritis, only – common for and linked to age – some traces of wear. I told him that.

 

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The doctor responded by saying that arthritis might nevertheless still be the PD-trigger point and prescribed anti-arthritis tablets.  He added that he would give me a call by the end of May to see how things were going.  (Freely translated: if the tablets had done what he expected them to do: ending the pain and bringing the PD to remission).

The tablets had done nothing at all. The PD-symptoms were still the same in the right foot and lower leg: red and burning. The (oxygen-depleted) blood does not get transported upwards and is “sitting,” in the lower veins, causing the extreme pain. It is sheer impossible to sit and stand, even for a limited amount of time.

Desperate as I was – as the long-waited result, expected by the doctor, failed to occur – I resorted to the same “treatment” as I had done in the past. It had worked twice before and had brought the PD miraculously to remission: standing and strolling knee-deep through the mineral-rich sea water for half an hour. I then forced myself to plod, walk and every now and then run through the shallow water along the beach. I concluded the activities by walking and running through the loose sand of the dunes.

I repeated this procedure a couple of times. The next day (my wife and I spent the night at the camping in Hoek of Holland) the “treatment” was carried out the very same way.

 

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The following day the miracle was there: no red, burning foot and lower leg in sitting or standing position. I could, and can sit or stand with both feet on the ground and for as long as I want. Does that mean that the PD in my foot and lower leg is cured?  The answer is “no”. I do feel the PD, however, pain and stiffness are considerably reduced. I can do it all again: walking, strolling and jogging.

The “PD-feeling” will be getting less in due time. I have experienced the “remission of the PD” twice before. It has happened again – Thank-God for that – a third time since the initial PD-outbreak in 1995.

My part in the whole of the “PD-remission process” is (there is enough proof of that): the will to go on rather than give up, praying and hoping that the PD will be brought to remission, and do a fair share of work towards it.

To my luck I must say, I have followed up the advice – which did not make much sense at first – and started padding knee-deep in the mineral-rich water of the sea. That is how it all started.

 

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The additional activities such as: plodding, walking and jogging through shallow sea water, followed by walking and running through the warm, loose dune sand seem to be the optimal massaging method necessary to bring PD into remission. I have – by intuition – I was not aware of her existence back in 1996 – applied the special PD-therapy of the renowned Mrs Shinka from Macedonia.

I had told the PD-specialist that the anti-arthritis tablets had not brought about improvement let alone bringing the PD into remission. I had also informed him that, in my despair and frustration, I had resorted to applying my “own method” again.

The result I had hoped and prayed for is indisputably there:  the PD has miraculously – that is the right word for what has happened – been brought into remission.

I hope that the above will be a comfort and help to fellow-PD-sufferers.

 

Amadeo Kuijpers   –   The Netherlands

Thank You so much Amadeo for sharing your interesting CRPS story of how it all came about and how it is now especially going into remission. Please do share Amadeo’s CRPS story on social media to get awareness of this so horrid chronic pain condition out there. Has your CRPS been in remission? If so what is your story? Contact us and let us know your CRPS journeys either as a CRPS sufferer or carer/loved one.

 

Written: 05/07/2016

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About the Author
As the Founder of Burning Nights CRPS Support, I want to help all those affected by this devastating condition which includes those living with CRPS, their relatives, partners, carers and friends. I'm also barrister, advocate & have lived with Complex Regional Pain Syndrome (CRPS) since 2003. I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Irene b

    This story is really very interesting to read and for the CRPS to go into remission is astounding. Thoroughly enjoyed reading this story. Amadeo I do hope your success continues and all the very best for the future.

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