“I feel I’ve lost a part of myself, but I still have a good life despite the pain,” says Eva Christin Bartholdsen, 41, from Fredrikstad.
Ever since Eva Christin was a child, she felt that something did not matter. After she got home from school, she often went to bed, and when she started high school and got a part-time job, she quickly became ill-treated because of bodily pain.
“I needed a lot of rest and had a pain in different parts of my body, but did not realize what it came from.
When she was in the early 20’s, she started working in a nursery, but was often ill-fated because the body stumbled. Eventually, when Eva Christin realized things were not getting better she changed jobs. After she got her second child, she had to throw in the towel in the store job and started as a secretary at the hospital in Fredrikstad, where she was for nine years. Eva Christin worked in periods, but was often ill-treated.
“The most stressful has been all the sicknesses. It has been important for me to be able to work and participate in society. I would not be a “naver”. Some of the heaviest today is not to be at work. I know that a lot.
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Ba om second opinion
Over the years, Eva Christin has been with many doctors and specialists. 14 years ago, she came to a rheumatologist who thought she had the chronic muscular pain disease fibromyalgia, which 150,000 Norwegians suffer from. Eva Christin reacted with disbelief and refused to accept the words of the doctor.
– I searched my own GP and asked for a second opinion at another doctor because it could not vote.
At Martina Hansen Hospital in Bærum, one of the country’s foremost specialist hospitals in, among other things, rheumatology, it was concluded immediately.
“I was so desperate, but refused to accept that I was ill and drove off like before. It has taken me many years to realize that I’m not able to work. Having become chronically ill has been a defeat.
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A couple of years ago, Eva Christin received an offer to retrain, and took education as a physician. Twice a week for a year she was at school. The plan was to find a job where she could work 50 percent.
” I was done after two days a week at school. The time I was not at school, I used to pick me up again.
By 2016, she should be in practice twice a week for half a year. After six weeks she ended up crying in a fetal position on the living room for a night because she was so painful. Eva Christin went to work the following day, but sought the doctor later that day.
– I broke down. When I realized I was unable to work 50 percent, my world broke up, says Eva Christin, who called the job and told her she did not know when or when she returned.
Almost a year later she slept 10-16 hours a day. On good days she tried to have dinner with her family, but it often ended that she had to go to bed.
– Had I taken more consideration, I may not have been where I am now. I have learned a lesson. Today, I’ve got a lot better to stop and say no.
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Fibromyalgia is a disease that many do not understand how species are. Several times, Eva Christin has experienced that she has been convicted because she does not work anymore and “just” goes home. People wonder if she’s not too young to stop working, and how, for example, she can work out if she can not work.
– Fibromyalgia is a hidden disease that is difficult for others to understand. Nobody knows how I have it before and after a workout or a trip to the store. On those bad days, where I’m just walking around, there’s no one who sees me, “says Eva Christin.
She says she has a bad conscience towards the family. The children of 12 and 14 are used to having a mother who is often tired.
“But I think they’re tired of hearing that I’m tired all the time.
Husband Tom Eirik, who Eva Christin has been with for 16 years, has been a good supporter.
“He has been there for me 100 percent. I do not know what I should do without him.
In addition to the pain, especially in her neck and shoulders, she must rest at least once a day because of fatigue. She struggles with frequent urination, dry eyes, stiff fingers, torsional tears, ear sores and responds to weather conditions. At night she has to sleep with earplugs and gums. Twice a week, Eva Christin trains with a personal trainer to keep the muscles going. She also goes on medical yoga.
– When you go with constant pain, your body becomes tense. Yoga makes me breathe with my stomach, relax more and do not think too much.
She has also been at a chiropractor, taken a mop massage, restored diet and put cortisone syringes.
“Nothing but ordinary massage has made me feel better,” says Eva Christin, who takes a half-naltrexone (LDN) tablet a day.
– The tablet is controversial, but has proven to help me.
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Wanted to the pain
Some of what she misses most from the time before she got sick is to be more social.
“Now I’m getting tired of social settings, whether it’s a dinner with friends or a trip to the mall.
Once when Eva Christin came back to the rheumatologist who gave her diagnosis, he thought she stabbed her head in the sand like an ostrich.
– His statement provoked me, but he was right. The most important thing I can convey to others is how important it is to take care of the body and stop in time. The body tried to say, but I would not listen. It has cost.
In 2016, Eva Christin was one month at the Jeløy health spa rehabilitation center. The stay became a turning point.
“I met a lady with the same diagnosis, which was much worse. She asked me to take it more calmly if I did not want to end up like her. Then I realized that I was lucky after all.
She has been thinking a lot about the future and hopes that researchers can find a cure that can make her healthy and get her back to work.
” I think it is strange that a disease affecting so many Norwegians is not researched more.
In recent years, she has gone to job settlement fees, and it is uncertain whether she returns to work.
– It’s heavy. I would love to have the job, but know that I can not handle it and have to be happy about the ability to manage my days after the mold. It’s not the head and will, but the body that’s the problem.
Being chronically ill has made Eva Christin stronger mentally and more understanding in meeting with others.
“I’ve taken more care of others who are having a hard time getting a little touched if I see or hear something that moves me.
Her motivation to share her story is to show people that the disease exists and how it affects.
“I want others who know again to feel and think. The disease is not something we only find to be at home, “says Eva Christin, emphasizing:
“I’m more than my diagnosis, though it has dominated my life in recent years.
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A life of pain
“There is much to do to live better with fibromyalgia, such as adapted movement, cognitive therapy, adapted diet or stress management,” says Elena Bogen Slydal, head of the Norwegian Fibromyalgia Federation.
The patient organization has 7500 members and over 50 local teams offering community, professional nights, training and tours. The purpose is to work to improve the situation for those who suffer from fibromyalgia, and to make the disease known, understood and accepted.
Living with fibromyalgia means living with pain, but also fatigue, migraine, visual disturbances, irritable bowel syndrome (IBS) and cognitive failure.
– We have membership offers like memberships, similar people, and cheaper lawyer assistance, and we collect offers of goods and services that can help members. Everything from discount on yoga classes and custom shoes, says Bogen Slydal.
“To improve, it is important to have good diagnostics and tailor-made treatment,” says Professor Egil Fors.
– Recent research shows that fibromyalgia is now considered to be a disturbance in the central nervous system’s sensitivity, so-called central sensitivity, and regulation of pain, more than a muscle injury. The disturbance may be due to a combination of genetics and external stresses, both physical and mental conditions, says Egil Fors, pain researcher and professor of general medicine at the Department of Social Medicine and Nursing at NTNU.
In 2012 he published the book “What is pain”.
“I would convey the broad understanding of pain in an essayistic form, and that it is not just due to an injury or defect somewhere the pain is warning about. Prolonged and chronic pain can be a pain or disease in itself.
Everyone with fibromyalgia has more or less pain throughout their life after they have been diagnosed, but one can go out and out of the criteria for fibromyalgia throughout their lives. Fibromyalgia was previously an exclusion diagnosis, but is now defined to include it in addition to other disorders, such as arthritis, osteoarthritis, or other pain conditions.
“To improve, it is important to have good diagnostics and tailored treatment, but it is important to convey that there is no quick fix, such as” just getting together “,” starting to work out ” or other simple solutions. This is a challenging condition that requires thorough and good mapping.
You may have little or much fibromyalgia with varying degrees of additional pain. This will determine what kind of treatment you get.
– For the easier degrees, learning to cope with and managing the disease can be enough, but at more severe degrees, supplementary measures, both medical, psychological and physiotherapy, must be supplemented. Many manage to move on in life, but much depends on how severe fibromyalgia you have and what treatment you get, “said Fors, editor of the book” Painful Psychology “that came out last year.
– This is an anthology of 16 chapters and several co-authors who understand why psychology is important in pain management along with medication, physiotherapy and other measures.