Understanding Fibromyalgia, Its effects on patients and their family members

Fibromyalgia is one of the commonest musculoskeletal syndromes in the world. It affects over 3 million people in United States alone, which is definitely upsetting since to date the ailment has no cure. Patients are left frustrated and depressed because most of the patients aren’t diagnosed for years after the symptoms start. Diagnosis can take on average five years with 60 percent of fibromyalgia patients diagnosed in their 30s and 40s, another 35 percent diagnosed in their 20s or between the ages of 50-65.

With fibromyalgia syndrome, the patient experiences chronic muscle pain or spasm, moderate or severe fatigue and decreased energy, insomnia or waking up feeling just as tired as when they went to sleep, stiffness upon waking or after staying in one position for too long, difficulty remembering, concentrating, and performing simple mental tasks (“Fibro fog”), irritable bowel syndrome, tension or migraine headaches, jaw and facial tenderness, sensitivity to odors, noise, bright lights,  certain foods, and cold, feeling anxious or depressed, tingling in the face, arms, hands, legs, or feet, increase in urinary urgency or frequency, reduced tolerance for exercise or feeling of swelling (without actual swelling) in the hands and feet

These symptoms may intensify depending on the time (morning, late afternoon, and evening tend to be the worst times). Symptoms may also get worse with tension, inactivity, changes in the weather, cold or drafty conditions, overexertion, hormonal fluctuations , stress, depression, or other emotional factors.

Fibromyalgia can be very distressing for the women and can affect their lives in many ways. The disease occurs seven times more often in women than in men and some 80-90 percent of fibromyalgia sufferers are women. These women feel misconceived because people around them think they are a hypochondriacs or attention seekers or just acting to get rid of responsibilities.

It took 17 years for one lady in Pakistan to get diagnosed with Fibromyalgia. She was suffering from fibromyalgia since birth of her second child and had multiple visits every year to her family practitioner in the hope that she will get some cure but every visit to the doctor made her more worried and frustrated. She spent her prime years worrying and suffering just because Fibromyalgia is not yet recognized by most GPs. She took multiple pain killers during this time to get rid of the pain which only gave her stomach ulcers and GERD. After suffering for 17 years she went into major depression and had to be admitted to the hospital for acute depression which led her to being referred to a psychiatrist who finally diagnosed her with Fibromyalgia.

Fibromyalgia doesn’t only affect the patients life it also affects the people around them. It affects their families, their lifestyle and their careers.

A girl from Nigeria told us that she has a strained relationship with her mother because every time she called her mother all she did was complain about her pain and fatigue. According to the girl it annoyed her that her mother always complained of symptoms  that the doctor always brushed off as nothing significant . She thought that her mother was just making up stories to avoid responsibilities and hence she never emotionally supported her. When the girl found out about fibromyalgia she felt extremely guilty and took her mother to the right doctor for treatment.

Just like these women there are millions of other women out there who are misunderstood and dejected. We all know few women who have complained of these symptoms on and off. We might even know some lucky ones who got diagnosed but there are still millions of them who have no idea that they actually suffer from fibromyalgia which is a real disease and these symptoms are not just in their head. We can help these ladies by spreading the word about fibromyalgia, educating people about fibromyalgia or by simply telling them that we believe them and by emotionally supporting them.

Dr. Rabbiya Aamir

Medical Practitioner &

Volunteer with Deltawomen.

Source

What is Fibromyalgia?

Fibromyalgia – Feeling so alone.

Having a close companion on the quest to learn about fibromyalgia can be a wonderful psychological boost. "It helps the person not to feel so alone," says says John Fry, a Newport Beach, California-based psychologist whose wife Elizabeth was diagnosed with fibromyalgia about four years ago. He recommends learning about how depression and anxiety — and on the flip side, positive thoughts and gratitude — can impact the disease and color the experiences of daily life. "Counting your blessings in the midst of difficulty" is one way to nurture a positive attitude, he says.
I can’t agree more with Fry. Having my daughter and close friends supporting me has really boasted my desire to fight this illness!

I used to be this person who felt that showing my emotions, fear or asking for help made me vulnerable. I mastered the act of smiling even when all I wanted to do was crawl and cry. I saw myself as a giver, the strong one and the shoulder for others to cry on. This was one of the many reasons why I hide my illness for many years from friends and family.
Unbeknownst to me my daughter knew something was wrong with mama and she heard me cry at night when I thought she was asleep.

I felt so alone.
I felt nobody would understand.
I felt ashamed to ask for help.
I did not want anyone to see me as a weak person.

Sometimes I would work myself up emotionally with these thought which triggered my illness.
Then, things changed. I could not hide it anymore and I began to open up. I lost some friends and family who were used to seeing me as the strong one, and could not deal with me being weak.
But the few who stayed have really helped and encouraged me on my bad days. Another big change is my daughter. She overheard me telling her dad that I was diagnosed with fibromyalgia, and she rushed to Google to find out what it was. She spent the evening asking me where I felt pain most and asked me a lot of questions to put me at ease. She told me she knew I was ill and felt better now she knew what was wrong with me and how she could help.

It dawned on me that it is more frustrating and confusing when we shut our loved ones out. We are not helping them by hiding our illness from them, because they know something is not right. We are sometimes alone because we want to be, because we shut the world out.

Acknowledging Fibromyalgia

Have you ever come across a woman with chronic widespread pain and a heightened pain response to pressure who also complains of stiffness, numbness, fatigue, headaches and sleep disorders? Did she also moan that she had multiple visits to her local doctors with negative tests and no cure from over the counter pain killers? You probably did.

There are chances that woman is suffering from Fibromyalgia. Never heard about fibromyalgia? This condition affects about 3 to 5% of the general population. It is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way pain signals are processed in your brain.

Symptoms sometimes begin after a physical trauma or accident, surgery, child birth, death of a loved one, divorce or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are more likely to develop fibromyalgia than are men. Many women who have fibromyalgia also have tension headaches, anxiety and depression. These women are unable to fulfill the physical, social, and emotional needs of others in the household. Due to lack of awareness about fibromyalgia these women are often misunderstood and people think they are being lazy and making up excuses to avoid responsibilities. Their symptoms may be affecting their marriage which leads to more stress and depression which inturn increases their symptoms. It’s like a vicious cycle.

People with fibromyalgia who are involved in fairly vigorous manual occupations often need to modify their work environment and may need to switch to a completely different job. A survey comparing people with fibromyalgia to individuals being treated for other conditions found that 47% of those with fibromyalgia had lost a job because of the disease, compared with only 14% of people losing a job for another health problem. In another survey, people with fibromyalgia lost three times as many workdays as compared to healthy workers.

Fibromyalgia can be emotionally devastating. Imagine being around people who don’t understand what you are going through, who thinks you are just making up stories about your pain to avoid work and being told that its all in your head. Add this stress on to the stress of being ill and the situation becomes almost impossible to bear. Emotional support from loved ones is essential for the person suffering from Fibromyalgia. It will not cure it but lack of support will make matters worse.

So do you have anyone suffering from fibromyalgia? Do you want to help them? What’s the first step towards it? Acknowledging Fibromyalgia. Accepting that your mother, wife, daughter or sister doesn’t have these symptoms in her head she is really suffering. Lets make an oath that from today onwards not only will we support and show understanding to the people around us with fibromyalgia, we will also raise awareness about it.

Written By 

Dr. Rabbiya Aamir

Medical Practitioner &

Volunteer with Deltawomen.

source

My struggle with Fibromyalgia.

I started experiencing pain 1 year after giving birth to my second born son.it all begun as mild pain on my knees and around my wrist areas. I took pain killers and the pain would reduce, but it will still recur after a few hours. These went on for a while and the pain started spreading to other parts of my body. The intensity of the pain was also increasing as time went by and my remedy was getting more strong painkillers to ease the pain.

The painkillers didn’t help much and I went to see the doctor, all the tests that were done turned out negative. The doctor added me more pain killers and advised me to go back for a review whenever the pain is unbearable. Back home things were getting worse; I started feeling tired all the time and having sleepless nights. Doing house chores became an uphill task as I could not even cook for the family and take care of my little boys.

I could stay in bed most of the time and would still feel tired to do any work. My husband would go to work and come to do house chores in the evening. The thought of not being able to do house chores stressed me much. My husband had to stop working to take care of his family.

This came with lots of financial constraints as we could not afford most of the basic needs. In the quest of finding a cure for my pain I was advised to go see a herbalist who gave me some herbal remedies which did not help .I visited a second herbalist but his medicine didn’t work, the pain was getting worse each day. I decided to consult a different doctor, after  assessing me he concluded I had Fibromyalgia.
We began working on my recovery which included changing my diet and also exercise. After three months I started feeling well and could do simple house chores and sleep well. Right now I still follow the treatment routine which has eased my pain and I know given time ill improve more. It calls for so much discipline to manage this condition.
I’m taking it one step at a time and I know I’ll emerge victorious, it’s not easy but I will make it. I’m able to encourage those who have this condition. I'm also educating my community about it and what can be done to ease the pain.

The Need For Science As The Fulcrum Of Modern Communication

                                         -Written By Charitarth Sindhu
Have you ever wondered why there are so many instances when you just cannot successfully convey your ideas and feelings to another person even though you have excellent communication skills? Even though we seem to provide a flawless and detailed form of information some people just don’t seem to understand what we are trying to say. We may not realize it in our day-to-day lives but our daily form of communication is highly subjective and quite frankly obsolete in a technology driven society. It may not matter how well you convey an idea to another person because if that person has been taught to interpret words in a perspective different from yours then there will definitely be a language barrier that will make it considerably difficult for people to understand each other.
Suppose a Person from Finland is speaking to a Person from Saudi Arabia, the Finn says “It is hot today, what is the weather like there?” The person in Saudi Arabia will say “It is hot here too.”
Looking at the average temperature in Finland during summer it is 20-25°C and in Saudi Arabia during the summer, temperatures reach 45 °C. Even the coastal temperatures in Saudi Arabia reaches 37 °C, with humidity averaging over 90%. The highest recorded temperature in Dubai is 52.1 °C. Now on a neurological level when the Saudi says it is hot, this information travels through the different filters and the information is interpreted in a very different picture by both individuals. In other words, they mean two different things. These types of issues cause a lot of misunderstandings and in many scenarios leads to conflict of ideas and conflicts in understanding.
Take another example- Paul R Porter, a famous economist who attended a banquet in Greece in which he was a guest. And in an attempt to connect with the host and audience he politely stated:
                  “…you Greeks and we Americans have very much in common. We like to eat, we like to drink and we want to sit around and talk.”
And the very next day the Greek communist party (KKE) wrote that he insulted the Greeks, calling them gluttons, alcoholics, and gossipers.
Different variations of language exist such as those in different jobs, different time periods, new knowledge (for example: the quite insufficiency of words like ‘sunrise’/’sunset’ even though it has been well established that Earth rotates instead), and in different nations, e.g. a British person will use the word ‘pants’ as a synonym for ‘underwear’ an American will use the word pants for ‘trousers’.
The language used by the average person is inadequate for resolving conflicts in understanding, but the language of science is free from misinterpretation and the conflicts found in everyday emotionally-driven language. It is deliberately designed – as opposed to having evolved haphazardly through centuries of social evolution in order to express one’s subjective emotions in terms that are verifiable and readily understood only by those who use it. Much of today’s conflict in communication is the result of our inability to state problems precisely. When one can state problems precisely, we are more than half way to the solutions. Technology has solved most of our problems, it is hard to imagine our lives without modern technology, like the washing machine, the automobile, cell phones, and the internet. Most technical and theoretical advances in 1) Our understanding of the universe (i.e. science) and 2)application of that understanding towards making our lives better (i.e. Technology) would have been unattainable without an improved language that serves as a universal mode of understanding. Without a common descriptive language of science, we wouldn’t have been able to prevent disease, increase crop yields, talk across thousands of miles instantly, or build bridges, dams, transportation systems, and the other technological marvels of this computerized age.
Unfortunately, the same is not true of conversational language. Attempts to discuss or evaluate newer concepts in social designs that defy conventional forms of culture and thinking are greatly limited by existing systems and beliefs within the majority of population that has not learnt to use the definition based language of science. The decisive advantage that the language of science has over conventional forms of education is the presence of ‘Technical Terms’.
We can safely hypothesize that communication amongst primitive humans was slow and subjective. When someone wanted to say “This is not something I like” they would push it away. When they were injured they would express themselves through utterances similar to the ones used today, such as moaning and groaning. If they held their leg, moaned and groaned, this communicated pain in that particular region of their body. When they wanted to show where the food was, they would point towards a direction. When danger was close, they might have made a loud noise, something like screaming.
That initial language development came about by using the senses that are in direct connection to the surrounding environment. Unlike the intermediate stages of the eye which have left behind fossil records, the same has unfortunately not been possible for language, bluntly speaking because the language does not fossilize. We can only briefly mention examples of kinds of linguistic behaviours that seem to have been identified by archaeologists.
If we can find anything in common in all forms of primitive linguistic behaviours it is that all of them have some minimal structure, i.e. sentences are made of words which have been given distinct meanings, and the understanding of the sentence is in a very limited way composed of those designated word-meanings.
Even though this conventional forms of communication fulfil our daily needs it is counterproductive to progress. As needs change according to biosocial pressures so does the requirement for more complex or simpler communication systems depending on the situation. The world is in need of a language which is relevant (i.e. updatable) to our current understanding of our environment in order to reduce misinterpretation just like in mathematics or chemistry.
Technical terms are words with a fixed definition and are not open to interpretation by different perspectives, such as Deoxyribonucleic Acid. This is a specific term that if said to another person with the relevant background and who speaks English, has no way of being misinterpreted. On the other hand conventional language consists only of non-technical terms which are open to interpretation by people with different perspectives hence leading to conflict in understanding, such as ‘good‘, ‘bad‘, ‘right‘, ‘wrong‘.
A technical term always gives precise information, but non-technical terms are mostly subject to our personal interpretation. When we say subject to our interpretation, we mean when we hear or read these words, the brain tends to associate those words to past observations and current understanding of its environment, the process involves several filters such as culture, politics, memories of situations, religion etc.
In other words when it comes to conventional languages the listener hears the words and he/she always interprets them according to what he/she thinks it means and not according to what it was actually intended to mean. People reading the same source but understanding different aspects may be explained on a neurological level where the nervous system abstracts, therefore, selecting, picking out, separating, summarizing, deducting, removing, omitting, disengaging, taking away and stripping the actual parts of the message that was communicated based on its own background, experiences and memories.
Conclusively, the sooner we realize the need to teach students as well as professionals how to use technical and scientific definitions in their daily life the faster our society will progress, as mutual understanding and conflict resolution is the foundation that civilization must be built on.

Life became meaningless with Fibromyalgia

‘‘I was diagnosed with Fibromyalgia 11 years ago, but my husband does not understand ,he says  that I’m lazy and don’t want to perform any chores .

He finds fault in everything I do. He has not held me for 3 years, I feel lonely and wish for death’’ Those are the words Emma said when I met her at her house crying. She is a mother of 2 She leaves with her husband and has had Fibromyalgia 11 years ago .She is still struggling to live with it as the Doctor told her it’s a lifetime condition. She even refused to take pain killers as she said they were not helping in any way.

Emma suffers alone as most of her friends do not visit her anymore.  No one understands her condition and many say she’s lazy as she has added weight. Many a times she has wished for death to take her. Things became worse for her when she was laid off from work as she could not perform her duties. She would take 3 days a week without going to work. sShe stays in the house all through, when I visited her she had not gone out of her compound for three months.

This is just Emma's story; many individuals who have Fibromyalgia go through so much pain and depression. Things become worse when they realize they cannot perform even the simplest of duties like ironing, cooking, bathing or even doing laundry. Some will push themselves to work until they can’t take it anymore and fall into severe depression. Many people will report having had suicidal thoughts as they are rejected by people who are close to them.

What can we do to help those with this condition?
Let’s understand that it’s not their wish to have this condition. Help them with work when the pain flares.
We can encourage them to exercise by taking them along our morning runs or walks. We can help plan their meals. Visit them and let them know that we care for them. Let’s do all that we can to help ease their pain, lets show them love.

A simple gesture can help ease the pain and improve one’s well-being.

Written by Lilian Wakhule.