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HealthMental HealthHow I learned to reduce my pain and live with fibromyalgia

After 18 years of searching for a cure for fibromyalgia, all I wanted to do was to be able to function.  But with some lifestyle adjustments, I have been able to achieve much more than that. I can manage the severe pain, and when I have a fibromyalgia attack, I take a rest and take the painkiller: without giving up, with the certainty that time and it will pass and I will return to my normal...
Reeneh YousefMarch 4, 202225 min
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After 18 years of searching for a cure for fibromyalgia, all I wanted to do was to be able to function. 

But with some lifestyle adjustments, I have been able to achieve much more than that. I can manage the severe pain, and when I have a fibromyalgia attack, I take a rest and take the painkiller: without giving up, with the certainty that time and it will pass and I will return to my normal life.

Even my family and my kids understand my situation, they know that this will pass, and they offer a helping hand and create the appropriate atmosphere.

What is fibromyalgia?

Fibromyalgia (fi·bro·my·al·gi·a) is a condition that causes pain all over the body (also referred to as widespread pain), sleep problems, fatigue, and often emotional and mental distress. People with fibromyalgia may be more sensitive to pain than people without fibromyalgia, which is called abnormal pain perception processing. Fibromyalgia affects about four million US adults, representing 2 percent of the adult population. The cause of fibromyalgia is not known, but it can be effectively treated and managed.

I now know that I have been suffering from this condition for almost two decades, but it was only two years ago that I was able to see the right specialist and get a proper diagnosis.

I suffer from attacks of severe pain that make me unable to get out of bed, and near-constant neck pain that sometimes turns into a terrible headache. I feel pain in all parts of my body constantly, and whenever I get an attack, the pain is exaggerated. 

People who have fibromyalgia may look fine, but we certainly feel pain that no human being can bear. Because of this, I often cannot do some tasks with my children or even play with them; they cannot hug me as tightly as some kids do with their mothers.

I tell them, “please don’t hug me too tightly or don’t put too much pressure on my body”, and they tell me “mum you always complain that every part of your body hurts”. Some of the time they think I’m complaining too much.

I can’t do light sports, normal household tasks, not even cooking, because sometimes I can’t carry dishes or even a pot and I can’t chop vegetables. My work requires working most of the time on the computer and I take a lot of medication to do so, in addition to not getting enough sleep or rest.

Another fibromyalgia symptom is terrible sleep. I always felt like I was making a great effort just to get to sleep, and I would wake up so exhausted that it was like I never slept at all. And like many people with fibromyalgia, I have suffered from depression and went on antidepressants. With no cure for what we are feeling, we feel extra sensitive and nervous from the slightest of situations.

As with many patients who go to the doctor because they complain of severe pain in their body, all the X-rays and tests medicine has to offer show nothing. The doctors are useless, and when we visit them we often hear something like ‘you are flaring, but unfortunately, there is no analysis that proves and confirms the disease’.

Once you have a diagnosis you can learn to live with fibromyalgia. That means making adjustments, from work to parenting responsibilities to household chores to having fun. But I’ve also realized along the way that by taking a more active role in managing your condition, you may feel a sense of control and boost your self-esteem along with your quality of life. And when I was able to do that, I also found an almost immediate and considerable improvement in my pain, too.

For so long I had no idea what was happening to me, and the doctors I saw offered no explanation. It was only about two years ago, when I was watching an Arabic program by chance in YouTube, that I saw Dr Shaima Aweila talking about fibromyalgia, explaining that 80 percent of cases are in women. That’s when I realized that I suffered from most of the symptoms she mentioned.

Fibromyalgia symptoms are common to many other conditions. And because fibromyalgia symptoms can occur alone or along with other conditions, it can take time to tease out which symptom is caused by what problem.

To make things even more confusing, fibromyalgia symptoms can come and go over time. That’s why it can take so long to get a diagnosis.

Getting a fibromyalgia diagnosis

Fibromyalgia appears to be linked to changes in how the brain and spinal cord process pain signals. As a result, your doctor will usually rely on your group of symptoms to make a diagnosis. Diagnostic guidelines from the American College of Rheumatology now include experiencing widespread pain throughout your body for at least three months. “Widespread” is defined as pain on both sides of your body, as well as above and below your waist.

Fibromyalgia is also often characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. In the past, at least 11 of these 18 spots had to test positive for tenderness to diagnose fibromyalgia. However, given that fibromyalgia symptoms can come and go, a person might have 11 tender points one day but only eight tender points on another day. And many doctors were uncertain about how much pressure to apply during a tender point exam.

While specialists or researchers may still use tender points and acknowledge they exist, they are no longer required for your family doctor to make a diagnosis.

Finding the right specialist

The entire time I’ve been experiencing pain I’ve been trying to find relief from the medical system. That includes seeing orthopedic doctors and neuroscientists and undergoing many, many tests, all that showed nothing. 

There is medicine available to help reduce pain and improve sleep, and they include: Pain relievers, such as acetaminophen; antidepressants such as Duloxetine and medications for epileptic seizures, such as Gabapentin. I have been taking all of these — including large amounts of painkillers and sedatives — for many years. 

For the last 10 years I have seen the same orthopedic doctor, many times going to him crying from pain. He never stopped trying to help me, sometimes injecting cortisone into my shoulder and neck to relieve the pain.

Based on the YouTube video and some research of my own, I asked my doctor if it is possible that I suffer from this disease. He referred me to a rheumatologist — the only medical professional who can diagnose fibromyalgia, based on conducting some specialized tests.

The rheumatologist did the necessary tests and imaging, and diagnosed me. He also told me that there was no solution or cure and that I was going to have to live with it, taking painkillers, adjusting my lifestyle and taking better psychological and emotional care of myself.

Among his tips were to avoid stress, physical exertion and high intensity exercises, instead sticking with swimming, walking and light sports. He told me not to make physical any effort at all, and carry nothing other than my mobile and the car key. 

Food and fibromyalgia

I had already found that food plays a very important role in the severity of attacks and, if I eat the right things, even in their gradual disappearance. So I conducted a 30-day experiment where I reduced some trigger foods, namely sugars and white flour. I focused on reducing my exposure to these foods rather than eliminating them altogether, as that would give me a better chance of success. 

So instead of drinking a cup of coffee with a spoonful of sugar two or three times a day, I kept it to one cup every two or three days. Over time I realized I do not even like the taste of sugar; it makes me shiver. 

Over the 30-day period, I gradually reduced the amount of medicine I take, to great results. As we all know that most medicines have negative effects on our bodies, especially in the long run. This is what I was trying to get over.

Some of the specific foods and changes I made were:

• Eating spinach and including it in most foods because it contains antioxidants and dietary fiber, which helps absorb iron, that helps relieve pain and reduce symptoms.

• Eating berries, because berries contain a high percentage of vitamins A, E, and C.

• Eating salmon, which is rich in omega-3 and contributes to supplying the body with energy, as well as reducing inflammation, which helps with pain.

• Eating chicken because it is rich in protein, which helps build muscle, and provides the body with the necessary energy, and both are very important for patients who suffer from low energy and muscle pain.

• Cashews are also nuts rich in omega-9 and omega-3 fatty acids, both of which are rich in antioxidants that protect against worsening symptoms and bone pain, as well as improving your chances of getting enough sleep.

• I also made sure to drink at least one and a half to two liters of water per day, as it works to prevent dehydration and high energy levels.

Mind and body changes

During my food experiment I have also been doing some light aerobic exercises, walking and yoga, daily. I have felt a noticeable improvement, and much fewer attacks of pain.  

From a psychological point of view: I try to stay away from sources of stress and occupy myself with reading, listening to music, and sometimes dancing to some hopeful songs. I’ve also added some meditation and established specific sleep rules to get good hours and quality, along with limiting caffeine. 

Other tips:

• Be as active as you can. Regular exercise is one of the most effective ways to deal with fibromyalgia. It eases both fatigue and pain. Walking and swimming are especially good. Aim for 20 to 30 minutes, two or three days per week.

• Balance exercises will help you feel steadier. Resistance training can boost your strength and overall fitness. A trainer can teach you the right way to lift.

Alternative therapies

I have also tried most of the treatment options available, including physiotherapy of all kinds, Chinese dry injections, laser treatments, one very dangerous and ineffective minor non-surgical operation. That involved an injection between the vertebrae, and is a very dangerous and delicate process carried out under general anesthesia. It may help in some cases, but unfortunately it did not help me.

Other complementary therapies, like acupuncture and massage, can also offer pain relief. I have also gone to a really good physiotherapist and take special supplements including magnesium, zinc, Vitamin D (an injection every six months) and Vitamin B12. Most of the physiotherapy sessions and some supplements are covered by insurance, and some of supplements I pay myself.

Living with fibromyalgia

Unfortunately, there is no cure for fibromyalgia. And because no two cases are alike, there is no single treatment that can ease the symptoms, either. Instead, treatment must be multi-faceted and tailored to the types and severity of symptoms you are experiencing. This may involve prescription drugs, physical and supportive therapies, stress reduction, lifestyle changes, and complementary treatments aimed at reducing your pain and restoring your quality of life. From my experience, I have learned a few top tips for others going through this journey.

• Stay on your meds. It sounds obvious, but this can be why you don’t get enough symptom relief. Nearly half the people in one study didn’t take their medication as directed because of forgetfulness, carelessness, or out of frustration. 

• Keep a journal and bring it to doctor visits so you can zero in on what’s bothering you, and see what helps.

• Make sure the doctor in charge of your care has experience with fibromyalgia. Other team members, who often practice together at pain and rheumatology clinics, can help with specific symptoms. They include physiatrists, psychologists, and physical and occupational therapists.

• Sign up for a self-management education class, in person or online, to better understand fibromyalgia. 

• Don’t make medication the easiest solution and try eliminating or reducing medication as much as possible.

• Research your condition and continue to reduce your suffering with pain in various ways, reminding yourself that eventually you will reach your goal.

• Those around you should know that you suffer from fibromyalgia to understand the moods you may experience due to the pain.

My best advice is that if anything I’ve written resonates with you, do not hesitate to visit a specialist doctor to diagnose your condition, and make sure to change your lifestyle. Never give up, do not let pain make you lose your most beautiful moments with loved ones and always try to find solutions for your condition.

Reeneh Yousef

Reeneh Yousef has worked in media since 2007, spending at decade at Abu Dhabi Media before joining Livehealthy. She loves walking, reading and going to the gym.

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