Disabled by Fibromyalgia, My Vision of Life Has Changed

My name is Anne Arbor. I am a mother of two beautiful children, a former beneficiary attendant and a 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 view 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 daily life, as are cognitive disorders, loss of memory, difficulty concentrating, difficulty naming objects, etc … And in a general way, many people 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 that 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 the misunderstanding that the affected people live, I decided to make an awareness campaign on fibromyalgia on the web and the media using images, videos and relevant information, hoping to educate the entire planet and succeed in breaking down 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 therefore use various means to spread the word about fibromyalgia around the world in order to put an end to judgments and intimidations. 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 this disease to be recognized by governments so that we can get some form of financial assistance. At present, the majority of 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 typical profile: we were hyperactive people before the illness and / or had emotional shocks, car accidents, etc.

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

Cardiovascular system

  • Palpitations (irregular heart beat)
  • Phenomenon of Raynaud (disorders of the fingers and toes with the cold)
  • Tachycardia (fast heart rate)
  • etc.

Respiratory system

  • allergies
  • Dyspnoea (difficulty breathing)
  • Cough

Digestive system

  • Dry mouth
  • Dysphagia (difficulty swallowing, sore throat, feeling of “ball” in the throat)
  • Dyspepsia (digestive disorders, nausea)
  • Irritable bowel (diarrhea, constipation, cramps, excessive gas)

Genitourinary system

  • Irregular menstrual cycles
  • Dysmenorrhea (pain just before or during menstruation)
  • Irritable Bladder (Urgent urgency)
  • Cystitis (inflammation of the bladder)

Endocrine system

  • General fatigue
  • Hypoglycaemia (low glucose level in the blood)
  • Dry skin
  • Thyroiditis (inflammation of the thyroid gland)
  • Sjogren’s syndrome (decreased secretion of lacrimal, salivary, tracheal, digestive and vaginal glands)

Musculoskeletal system

  • Muscle aches
  • Morning stiffness
  • Muscular weakness
  • Costochondritis (chest pain in the ribs)
  • Temporomandibular dysfunction (jaw)
  • Cramps and muscle spasms (including nocturnal myoclonus)
  • Carpal tunnel syndrome

The nervous system

  • Chronic headaches, migraines
  • Diffuse dysphasia (burning sensation, heat, numbness, chills, tingling, tingling, subjective swelling)
  • Hypersensitivity to noises, odors, air conditioning, light, cold, chemicals, smoke
  • Insomnia
  • Trend to escape objects
  • Tinnitus (subjective sound in the ear, buzzing, hissing, tingling, etc.)
  • Vision disorders
  • Balance problems, dizziness, lightheadedness, nausea
  • Dry eyes or excessive tearing
  • Sciatic pain (buttock, thigh, foot)

Cognitive sphere

  • Difficulty naming objects
  • Difficulty concentrating, thinking clearly
  • Memory impairment (short-term memory loss)

Affective sphere

  • Anxiety
  • Irritability
  • Depression

Studies show that about 5% of the population has fibromyalgia, about 385,000 people in Quebec and 5% in France as well. Fibromyalgia affects mostly women, but men and children can be affected.

Some factors can also trigger the pain and the various symptoms or aggravate them:

  • Overwork, fatigue
  • Lack of sleep
  • Concurrent activities
  • Repeated, excessive movements
  • Work with arms outstretched over shoulders
  • Excess physical activity
  • Immobility: long periods of sitting, standing or lying, driving or driving, writing, etc.
  • Wear objects
  • Household activities
  • Work, social or family stress (positive and negative)
  • Weather changes: cold, humidity, heat, etc.
  • Air conditioning
  • Drug reactions: dizziness, drowsiness, insomnia, heartburn, spasms, palpitations, tachycardia, tremors, etc.
  • Hormonal changes (premenstrual syndrome, pregnancy, menopause)
  • The alcohol
  • Coffee
  • The noise
  • Light and strong smells
  • Cigarette smoke and pollution

Treatment

There is still no specific treatment for fibromyalgia. Sufferers must therefore treat each symptom individually, either by:

  • traditional medicines,
  • of soft medicine,
  • light exercises (walking, aquafitness, stretching, stationary cycling, etc.),
  • a balanced diet (avoid overloading),
  • relaxation and rest methods,
  • adapted massages,
  • heat and hot baths

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