Disabled by fibromyalgia, my vision of life has changed

 

My name is Anne Arbor. I am a mother of two beautiful children, former beneficiary worker (caregiver) and photographer. I am 31 years old and I suffer from fibromyalgia . I was diagnosed a year ago, but I have been suffering from this syndrome for several years. This disease has changed my vision of life because we, the sick, can not live as before.

The name “fibromyalgia” comes from “fibro” which means fibrous tissue (like tendons and ligaments), “my” which means muscles and “algie” which means “pain”. Although called fibrositis for several years, the word fibromyalgia is now the name we prefer.

Sick, we need to change our routine and learn to live more quietly. We can not do as many activities in one day as before, and have to rest between each of them. We also have to mourn many things that we will never be able to do again.

Fibromyalgia, generalized and constant pains

Fibromyalgia is a syndrome that is characterized by generalized and constant pain and that the brain interprets amplified. Chronic fatigue and hypersensitivity to touch, noise and light are our everyday life, as are cognitive disorders, loss of memory, difficulty concentrating, difficulty in naming objects, etc … And in a general way, a lot of weaknesses.

Since my diagnosis, I have been on the Internet support groups for people with this disease and I realized that it is very poorly known, even if it affects 5% of the population. Moreover, she is often very badly judged. People who suffer from it are often intimidated by their loved ones and at work.

Diagnostic

This disease comes down to the elimination of all other possible pathologies, because doctors do not really know where it comes from. At first glance, we, ill, seem to be fine, even if it is not the case. Our loved ones tend to believe that either we exaggerate our pain, or we are lazy or that it happens in our head. This disease, it is not seen.

Fibromyalgia can be so painful that we even have trouble walking. We feel that all our members are broken. The pain is sometimes so intense that it can happen that simply raising a fork to eat requires a lot of effort so we are weak. It becomes difficult to find a job because this disease is unpredictable. Some days, we manage to survive our day despite the pain, and other times we find ourselves in bed, too much suffering and too weak to be functional. We can not predict from one day to the next what makes the planning of activities very difficult, because we have to cancel once in two.

As for the intimidation and misunderstanding that people with cancer suffer, I decided to do a fibromyalgia awareness campaign on the web and the media using images, videosand relevant information, hoping to educate the entire planet and succeed in breaking taboos against this disease.

I tell myself that the more people are informed about this syndrome, the less people will be judged.

In summary, I am using various means to spread the word about fibromyalgia around the world to stop judgments and intimidation. I also hope to see researchers interested in finding a cure to help us heal or control our pain. To date, there is no cure for fibromyalgia. So I would like to see this disease recognized by governments so that we can get some form of financial assistance. At present, most sufferers have to find themselves in receipt of social assistance (thus involving pain, poverty, loneliness, helplessness and sometimes even suicide) and often find themselves abandoned.

In support groups, what we see are people who are suffering from fibromyalgia and are not understood by those around them. Because when we physically seem to go well, our entourage has a hard time understanding that we suffer 24 hours a day. On certain days, we are unable to do things that are truly banal, such as getting up from the bed or shampooing and that the next day fatigue and pain paralyze us. We are told to stop being lazy, to stop “listening”, but these people do not understand that if we had the energy to do anything, we would be the first to activate, without say a word.

When we talk about fibromyalgia to our loved ones, it is not uncommon that they do not want to hear our suffering, and have trouble realizing what is not seen. Some sick people are even abandoned by their entourage, their spouse …

Difficulty finding the right treatment

Side treatment nobody reacts the same. Some patients can be relieved only by certain drugs, while others will be insensitive or even subject to adverse effects.

Psychologically, support groups help to lift the spirits of sick people, because we all live in the same situation, to more or less the same degree; and interacting with people like us, helps us.

But what would help even more, it would be that the population understands: it is so hard to have to explain again and again, to have to justify why today we can not go out, go to work, etc.

All people with fibromyalgia have the same profile type: we were hyperactive people before the illness and / or had emotional shocks, car accident, etc.

The main symptoms are generalized chronic pain, fatigue and disturbed sleep. These may be accompanied by one or more of the following symptoms:

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