Kiani, 23, was diagnosed last year
“I grew up as a carefree little girl, happy and rarely sick. At school, everything was going well, and I soon discovered that what I wanted to do was babysit. Life smiled on me … Until, in my last years of studies, I had more and more problems with the stomach and the intestines. The doctor I saw told me that I had irritable bowel syndrome. I had to stay home regularly, and I was exhausted. We could not find the true cause of my symptoms: most often, I was told ‘it’s stress’.
At first, my parents really struggled with the fact that I often stay at home instead of going to class, they asked me to make an effort.
Two years ago, I had my diploma of pediatric nurse and I wanted to continue my studies to be a kindergarten teacher. But I quickly realized that I was not able to follow such a heavy training: just with the tram ride and the few steps to get to school, I was exhausted. I had no choice but to put away my dream of studying and going to work in a nursery. But after a week of work, I got the flu … In general, we get rid of the virus after a good week of rest, but I could not get rid of it: two weeks later, I I still had terrible body aches and I was really tired.
I went almost daily to the doctor and he tore his hair with my case … For months, I remained weak: I felt that something was wrong in my body.
Everyone around me saw that something was wrong, but the doctor could not understand what was happening to me. In desperation, I turned to the internet to find an explanation for all my symptoms and I came across fibromyalgia: I talked to my doctor who did not exclude this hypothesis and directed me to specialist. A month later, I had a consultation.
A verdict without appeal
The specialist gave me a battery of tests and analyzes: in the end, the verdict was final. I had a 99 percent chance of suffering from fibromyalgia, but the diagnosis could only be confirmed six months later, when my symptoms continued. All my problems had not just kept going, they had increased in intensity during the last six months. As for my bowel problems, they were soaring … I again underwent a series of tests, also on points specific to fibromyalgia. And the result was implacable: I wore the mark of fibromyalgia. At first, I did not quite see what it meant: I was terribly disappointed when I learned that this disease is not healing and that we can not do much or nothing at all. At work, they did not understand my illness;
Constant muscle pain
Today, I live permanently with muscular pains. My neck and shoulders are the most tense areas: they are constantly blocked. When I wake up in the morning, I’m so tense that I need more than an hour to get up. I must also fight against extreme fatigue:
some mornings, the shower is an insurmountable ordeal, I must mobilize all my energy to walk to the bathroom. Because of irritable bowel syndrome, I often have big bouts of diarrhea and also have panic attacks or allergies regularly.
At the mental level, I have a lot of trouble with my illness: I always have the impression of being locked up in my own body. I want to do a lot of things, but my body prevents me systematically … All these things of everyday life, like a long walk with the dog or an afternoon of shopping, are inaccessible to me. I am also extremely sensitive to hot or cold: if it is too cold or too hot, I have trouble moving or I’m swimming. Just that, at times, prevents me from going out … And then there is also all the prejudices on fibromyalgia, with which I have to live regularly: many neighbors and friends remain camped on received ideas. “So young, and she does not work! She does not look so bad, though? “There is a lot of stuff behind me, but I can not do much.
A fight against depression
Right now, I have to fight depression. I have not worked for two and a half years and I do not know if I will be able to do it again one day … Without the support of my parents and my companion, I would have already plunged into depression. My dog also helps me a lot. When I feel bad, they always come to inspire me a little joy …
My boyfriend knew me when I had not yet been diagnosed and I could live normally. He has seen me slowly deteriorate in recent years, but fortunately he has always had a lot of understanding and never thought of leaving me.
Benny is happy with me, he does not need to go out on weekends or meet friends: it’s my greatest happiness. Last year, we moved in together, right in front of my parents’ home. When I have too much trouble with housework, my mother comes to give me a hand. My blog on facebook, Kiani’s World, also brings me a lot of comfort: I put all the little energy I have left. For most things, I became dependent on others: I’m going to have to do it … It’s not easy, but I do not have a choice. I have to learn to appreciate the little things of everyday life and give up my big dreams. The only one I do not give up is the dream of starting a family: I want to be a mother. Physically, it will not be easy for me and I will need outside help, but if there is one thing that Benny and I could sacrifice everything for, it’s good to have a child together … ”
Tamara, 31, has been fighting for ten years for her health
“When I was little, I had a lot of trouble at school. I had learning difficulties and I was being harassed. But thanks to many hours of work and to my will, I finally got a diploma of medical secretary. I was offered a job in a hospital. My first job mixed responsibilities and stress: it very quickly had an impact on my health. I had high blood pressure, I had continuous chest pain, and I was exhausted because of constant schedule changes. For a while, I reported work at home … My doctor eventually prescribed me a sick leave and sent me to a physio to treat inflammation of the sternum. After a week, my pain was not alleviated, but I went back to work while looking for another job, with better schedules. I ended up finding a new, less stressful position in another hospital. For six months, everything went well, until I felt a violent pain in my jaw and teeth: my wisdom teeth were coming out, and I had to extract them through surgery.
The operation went very well, but a few days later, I started to have terrible headaches that were not happening. I went back to work after two weeks, but it was not easy … I felt more and more pain in the jaw, so I went back for a check: apparently, my jaw had been roughed up during intervention and I just needed to let some time to heal. So I took painkillers, at home and also at work.
Quickly, simple analgesics were no longer sufficient, so I was prescribed much heavier drugs.
Immediately afterwards, I became red all the time and it was hard to get home at night by car. I stubbornly refused to stop working or to resume sick leave. But soon after, I had an inflammation of the wrist and it was worse and worse … At the same time, my father learned that he had cancer, which made my job in the hospital still more difficult. And I quickly felt that all my colleagues were not kind to me. I started looking for a new job, and I found myself in the medical service of a mutual. I had a boss who understood me and a job that I really appreciated: for once, everything seemed to be going well. My boyfriend and I planned to move in together the next year and I started cooking classes in the evening.
The compote back
At first, everything was fine, but very quickly, I felt a pain in the back when I was holding a pan. Again, I had to take very strong painkillers, and then I was forced to drop the classes. In work too, the sitting position was more and more painful. The doctor thought that my back was too tight and sent me to a physiotherapist. But it was not better … In the end, while I had finally found a job that I liked, my health put me again sticks in the wheels. I found myself attending specialized courses on back pain, without it having any effect. I was so desperate that I ended up going to see a neurosurgeon in the hope that he helped me, but he found me too young for an operation and advised me to continue the physio sessions, all taking rest … In the process, he put me on sick leave for three months. It was very hard to swallow.
But as soon as I found myself at home, I realized that I really needed rest. I slept a lot, I constantly took analgesics and I continued the sessions of physio, in addition to “school back”. I was no longer able to do anything and I had to lie down as often as possible. Even when we went out with my boyfriend, he had to bear to see me lying down. Fortunately, he was very understanding … We did not live together, our relationship did not suffer too much from my health problems. My sick leave has been twice extended for three months, but my back problems have not improved.
When we realized that even the epidurals had no effect, I was at the end of the roller. In the meantime I had been on sick leave for nine months and that obviously had an impact on my job: I was fired for medical reasons.
It was a blow for me, I was totally overwhelmed and I went into depression.
As the doctor had found some wear in my lumbar discs, I finally underwent surgery. It went well, but my recovery was extremely slow and complicated. Normally, I would have had to walk again after two or three months, but nine months later, I still struggled to stand on my legs. My boyfriend and I decided to move in together. But during this time, I could do very little. My mother even took time off to come to my house and help me shower, get dressed, a lot of little everyday things. When I went back to the surgeon, he said the operation did not work on me. Before I went to the operating table, my friend had warned me: I had to be careful,
The diagnosis of fibromyalgia
I looked for and found a new part-time job in the office of a general practitioner in my neighborhood, and I gave it my all in this new job. But even if it was not a full time, I was quickly exhausted. Since I had gone through a lot of things in a short time, my doctor advised me to go see a psychologist. In the meantime, my jaw, head and back were still hurting. And then, in 2015, I found myself with a new physio who discovered a very serious blockage in my neck: she wanted to treat me acupressure. And as soon as she pressed one of the points associated with fibromyalgia, I felt tears of pain invade my eyes. At that time, the diagnosis was mentioned a first time. It was confirmed the following year, after a battery of conclusive tests. At first, I was happy to finally put a name on all the problems I had to endure until then. But the euphoria was short-lived when I learned that there was no solution to this disease. I simply received prescriptions for magnesium and the advice to move as much as possible … What, precisely, I was unable to do!
Friends of galley
Via the Internet, I discovered the league of fibromyalgia patients, and I quickly landed in a patient support meeting. Joint pain, back problems, migraines, intestinal problems: everything I had lived for years was reviewed and related to fibromyalgia. The pieces of the puzzle were finally coming together … Moreover, my profile seemed typical of the people affected: always ready for others, unable to drop the job, unable to say “no” and spare his efforts …
Today, I am unemployed again for a year. In February, I started a behavioral therapy at the university hospital, to learn how to fill my day in the best way possible taking into account my fibromyalgia. This therapy should last one year, after which I should be able to return to work. But I have to change drastically my way of life, and they do not know what kind of work would fit this new environment. Ideally, I would start volunteering, so I could quietly see what I’m still able to do.
A difficult relationship
My circle of friends has been considerably reduced in recent years: from a very active social life, I have gone to almost no external contact. Fortunately, through the League, I met people who have gradually become true friends. Every outside meeting has to be planned well in advance, and I’m always likely to give it up at the last minute, depending on how I feel that day, or even at that moment.
In my relationship as a couple, it is not simple: my condition has caused many times tensions and doubts in my companion . My back problems greatly reduce my intimacy and the treatment I take has dramatically lowered my libido.
My fibromyalgia has been a test for our relationship, but now we have been together for over ten years and we have gone through a lot of things. Fortunately, neither he nor I wanted to have a child: starting a family would have been beyond my strength.
A great misunderstanding
There is a great misunderstanding on the part of the outside world vis-à-vis patients with fibromyalgia. I have often suffered myself … To travel long distances, I use a wheelchair, because because of my muscular pains and my fatigue, I am not able to walk very long. Now I live day by day: it’s not in my nature, but I have no choice. I do acupuncture, take painkillers, anti-depressants and sedatives, and I am followed by a psychiatrist for my sleep problems. I devote my energy to my treatment in the pain clinic and to my behavioral therapy. I also try to do some housework or I do creative things, when my fingers are not too tight.
I have help at home, to help me prepare meals, do laundry, ironing, shopping and walks. I also have someone who helps me wash and get dressed.
My biggest goal right now is to create and develop a support group for people with fibromyalgia. That way, my life can serve other people, and despite my limitations, it seems like it’s still worth it. “