Have been hurt every day for seven years.
A happy staircase on New Year’s Eve. A fall. A violation. An all-encompassing pain that will not let go.
Marion (35) has been hurt every day for seven years. But today she knows how to live with the pain. And the sons can give her a hug.
It has been darkest for the last day of 2006. Good friends have gathered to celebrate the entrance to the new year.
The air has been mild and humid over Vestfossen in Buskerud this day, but while the friends have kept the heat in, the frost has creeped over the valley.
When they go out to watch rockets, they meet a happy staircase. Marion Håland Kristensen’s footwear can not be found.
She’s falling short and falling.
“This time is not okay,” she thinks just before she fails. In the hospital a complicated fracture of the collar bone is detected.
Marion gets into a metal plate to hold the leg in place. One week she lies with intense pain.
- Approximately 30 percent of the adult population is the main cause of long-term sickness absence and disability.
- Occurrence increases with age, and women are more vulnerable than men.
- Defines most often as a pain of duration of six months or more.
- A distinction is usually made between the pain caused by tissue damage (eg rheumatic joint disease), pain caused by a malformation of the nervous system (eg sciatica) and pain of an unknown cause (such as back and neck pain).
(Source: www. kroniskesmerter. dk)
– Pain can last for three years
Morfin did not work
It turns out that Marion is one of the few who does not get any effect of morphine. The all-encompassing pain keeps her awake about the nights. It’s there all day.
Marion hurts to speak, to hear. The only thing she thinks is that the pain must be done soon. It does not.
The first time Marion realizes that the pain must be due to something other than the break, when after a few days at home she is going to change the dressing:
The tears ranted when I pulled off the tape. My skin burned. It was absolutely cruel pain. It did not get any better when I put a new tape. Touching the skin around the collar was simply horrible, she says.
Gnosis to the bone
Three months go and the skin burns as much.
Doctors suspect a diagnosis, but it has to take half a year before she finds that she has CRPS, complex regional pain syndrome.
A disease that should be treated quickly, but that can last a lifetime.
The message is tough to get, but Marion is currently more concerned with the painful pain from within. It is not due to CRPS. She is convinced that it is the metal plate that rubs against the leg.
– It felt like they had operated a brick and pulled the skin around. It was incredibly painful and uncomfortable, “said Marion.
She must, however, visit many medical offices before she finally hits a specialist who agrees with her.
After one year, she will be able to run the disc again. The throbbing pain disappears, but again it is the burning skin.
Nevertheless, everything will be so much worse.
In 2009, she gets infected with swine flu and it puts her out of play. Often she has to sit in a dark bedroom in the basement. She is struggling with short-term memory.
This is CRPS
- Faced with complex regional pain syndrome, and may develop after any trauma, such as surgery or breakage injuries. The pain that follows the skin area is usually extremely burning.
- Most commonly, the exposed area becomes hypersensitive, which causes the patient to feel pain when it is otherwise not natural to feel it, for example by touch.
- Remedies have little or no effect. Operations in the sick area should only be performed when you really know that it is absolutely necessary.
- There are more women than men who get the disease. It is most common among people between 40-60 years, but may occur at any age.
- According to a report in the Physiotherapist magazine, it is estimated that one to five percent of patients with peripheral nerve damage after trauma will develop CRPS type II and two to 17 percent of patients with minor trauma or surgical procedures will develop CRPS type I.
(Sources: www. neuroscience. medical handbook. no, and www. doorstep. no, www. nhi. no, “Complex Regional Pain Syndrome (CRPS) – Part I” by Sara Maria Allen and Anne Sofie Lofthus, Physiotherapist No.. 3/04. )
– As bad as feeding
The words do not come out as they should. When she goes to the bathroom at night, her legs stiffen. She walks in the ground.
It’s a year before Marion notices that the virus starts to crash. She is gradually getting better.
The pain moves
Slowly she moves from the basement up to the living room with the beautiful view.
Once again, she is able to work, but she is worse than before. The pain, previously found around the collar bone, has now moved around the entire body. She has a pain everywhere.
She has got what is commonly called pain syndrome.
– On a good day, like today, it just feels like I’m very, very sunburnt. On other days it’s like having very bad toothache all around the clock, explains Marion.
Security pours the pain
Marion gets a nerve medicine that takes the worst peaks, but what she feels helps most of all is to find information about what’s wrong with her. That’s how she also gets safety.
Marion has spent a lot of time finding out about her illness and where she can get help. According to her, there is little to find.
She has experienced a long wait and met healthcare professionals with little knowledge of CRPS.
– When you do not know what’s wrong, you go around and worry all the time. May I have cancer? Is there anything wrong that they do not notice? Once you have been diagnosed, it is easier to accept it. Try to live so things get easier, she says.
Reducing anxiety and fear is an important part of the treatment of pain patients, according to the physiotherapists Allen and Lofthus.
It will reduce the central impact of the pain. Disorder in patients should therefore be avoided.
Marion has experienced herself on the body how stress can affect the day shape. She has attempted to remove all negativity, stress and vicious thoughts that make her tense and increase pain.
– It’s a big mental job, but it’s very important, says Marion and looks beyond Vestfossen from the living room window.
Marion has also realized that she has to plan things a little more carefully than others. For example, she knows that she and her family can not only take a southern tour or a theater visit like this suddenly.
Debt to Debt
She still remembers the night she brought with her boys, Jonas (5) and Pelle (9), to Oslo Spektrum to see Disney on Ice.
– It was absolutely terrible. All the people who came to me. It was terribly hurt every time I felt an arm or shoulder on my skin. I think it took two days for me to come after that trip. If I give 100 percent one day, I have to be for myself the following day, says Marion.
Having been completely out of work for a period of time, she now has a part-time job as a cultural worker in her home municipality.
In addition to learning more about the disease, Marion has committed to spreading the information to the greatest possible extent. She writes chronicles, builds networks and talks with like-minded people about how they deal with life with chronic pain.
She thinks of others who have the disease, who may not have been diagnosed once.
Her commitment to other CRPS patients may also be pain reliever in itself.
It is recommended that pain patients find something they can focus on, which leads attention away from the pain.
Here you can find more information and support
- The Chronic Pain Relief Society: www. kroniskesmerter. com
- Norwegian pain association: www. Norwegian Pain Society. com
Groups / forums:
- Friends International Supportgroup: www. fms-cfsfriends. com is an international forum where like-minded people exchange experiences and advice. This forum is for patients with chronic pain.
- It works at. Today, starting an association for patients who have received CRPS. If you are interested, you can send an email to [email protected]
- CRPS / RSD / Reflex Dystrophy Group for Scandinavia: Here you can ask questions and read the story of others with the same diagnosis.
- Stop Pain: A patient-driven initiative for better treatment across transcripts.
- www. diagnosed. no: Anna Tostrup Worsley takes up important issues that include pain patients in Norway.
Characters that means leg visit
For Marion, the most concrete measure has been to play the piano.
She decided to learn it when she became a lot at home for herself. Then she did not yet know how good the game would have for her.
The mood feeling when I play is absolutely amazing. It works almost like pain relief. It’s as if all the pain disappears for a moment, she tells, and settles down to play some Bach for us.
Missed by the small things
Marion has improved in the last year. She does not have to serve food to the children with hearing protection and sunglasses.
She has chosen to focus on the beautiful family that after all she has been more fortunate than many others with the same diagnosis. It could be worse.
Nevertheless, a tear appears in the eyelash when Marion tells about the little things she misses from her old life; a breath of breath on a spring day, a hot shower, to lay in delicious, soft linens.
Little boy’s hands clinging around her throat.
– Maybe that is what I miss most. I wish they could only run against me and throw themselves in my arms.
The pain can be muted
Steffensrud Rehabilitation Center has offers for patients with different degrees of chronic pain.
Patients who have been diagnosed with CRPS often get too late.
– There is still great ignorance of CRPS among employees in health care, says specialist physiotherapist Gesien Smit Janssens.
At the same time, she emphasizes that an early diagnosis is important for the best results of treatment.
Both her and specialist nurse Anne Kari Sato Nordengen believe that all patients can have less pain and learn to live a good life with the pain.
At the center, they work with a complex rehabilitation program where connective tissue therapy is one of the treatments that proves to be successful.
Also, much is the patient himself can do to cushion pain, f. example. Be physically active, have a healthy and regular diet, cut the smoke and get enough rest.
A comprehensive approach that also takes care of the patient’s mental health is important.
– A good self-esteem, positive attitude and presence have a lot to say for the experience of the pain. By focusing on other things, focus is shifted from the pain, Sato explains Nordengen.
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