KUALA LUMPUR, Feb 10 – Nur Izati Hamzah was teaching a class one day when her head began to ache and she had problems with her vision. “I was teaching and then suddenly everyone looked blurry… like I cannot see clearly.”
She was rushed to the hospital by her mother but the medical team at the hospital failed to find anything wrong with her.
Izati made repeated trips to the hospital after that, but was unable to get a diagnosis on her condition, which was getting progressively worse.
“Suddenly I couldn’t walk, meaning that I could only stand for less than five minutes. So I had to use a walking stick,” Izati told Ova in an online interview.
“Oh, I was so depressed during that time. Because it started in January, you just had the new year and new resolutions. And I was so young at that time.”
Izati, who was only 25 at the time, was treated at Sultanah Fatimah Specialist Hospital in Muar, Johor, where she resides, and was eventually referred to the hospital’s Medical Outpatient Clinic (MPOC).
After she underwent a CT scan that indicated there were no abnormalities in her brain, she was referred to the MPOC’s head of department who conducted a trigger point test on her.
This involved touching several tender points on her body to see if she felt any pain, which she did. Izati was then diagnosed with fibromyalgia.
The symptoms of fibromyalgia manifested differently in Farah (pseudonym), who began experiencing gut issues over two years ago.
She also felt constantly tired and suffered from body aches.
“At that point, I was going through a particularly rough patch at work,” she told Ova in an online interview.
“My work was very busy. (I was) working until late at night and things like that,” said the 28-year-old who was a lawyer.
“I couldn’t actually figure out if it was stress or exhaustion or burnout or actually something physically wrong with me. That happened around mid 2022 until the end of the year. I got treated for my gut issues.”
While Farah said she felt better overall, her body aches remained and she would feel them after she got home from work.
“When I was at work, I didn’t really feel it,” she told Ova, but things started to get worse the following year.
“Starting from May 2023, it became constant, the body aches and also the gut issues. I was having diarrhea 8 times a day and things like that.”
Farah said that’s when she embarked on her “medical adventure of trying to get diagnosed and treated.”
The Long Road To Diagnosis
She met with two gastroenterologists, a rheumatologist, and a pain specialist. The gastroenterologists told her that she had irritable bowel syndrome.
While the rheumatologist said “he couldn’t figure out what was wrong with me,” Farah said he wanted to start her on steroids – a treatment for autoimmune diseases like SLE – because of the body aches.
“They cost about RM30,000 per year, even though I wasn’t actually diagnosed with any autoimmune disease at the time.”
The pain specialist diagnosed her with chronic widespread pain syndrome and she was given an anti-depressant to treat the chronic pain, which did provide some relief but made her feel sleepy all the time.
After a session with a psychologist from the chronic pain clinic in Hospital Sungai Buloh, she was referred to a chronic pain specialist at a private hospital.
“It actually took five weeks to get an appointment even in a private hospital,” said Farah, who added that the doctor took almost a whole day to evaluate her. “I was there from 9.00 am to 4.00 pm. It was like a working day.
“I had to fill in about a 12-page questionnaire asking details about my physical state, mental state, how long has this been affecting me, how does it affect my daily life, am I able to do this, am I able to do that in my daily life, and things like that.
The doctor also took down her detailed history and by that time, Farah said she had compiled a very detailed list of all her symptoms. She also checked the trigger points on Farah’s body.
“The classic fibro-diagnosis criteria is that you are supposed to have at least 11 trigger points on your muscles in a few areas of your body, back, lower back, upper back, shoulders. They are supposed to be tender and painful to the touch,” she told Ova.
“So, I had a lot more than 11. I had about 25 to 30 of those tender points and yes, that was how I got diagnosed.”
Handling Work While In Pain
After finally getting a diagnosis in August 2023, Farah thought she would be able to continue working.
With the support of a letter from her doctor, she talked to her employer about accommodations such as working from home twice a week, but eventually her condition got worse.
“I was physically and mentally exhausted. I was in pain most of the time and unfortunately, I was actually promoted earlier this year,” she told Ova at the end of last year. “But by the time I was promoted, I couldn’t take it anymore.
“I couldn’t focus physically or mentally and also my treatments were about two or three times a week. So, I couldn’t balance that time with work.”
Farah was a lawyer who graduated with a first class degree, but she resigned from her job in March last year.
“It’s kind of sad thinking about it actually,” she said. “My career was stopped when I just got a promotion, I just got an increment. It’s a lot to process.”
Izati, who is now 33, also wrestled with the idea that she would not be able to work after her diagnosis but she was relieved that her condition improved with the medications she was prescribed, which included Gabapentine and Tamadol.
“Otherwise, I cannot work. I had to stop working, stop doing things I like. I couldn’t even watch TV because it was so painful.”
Izati, who teaches language in the private sector, said she was fortunate that her boss was kind enough to accommodate her disability by encouraging her to continue to teach and offering her the option of conducting online classes.
She was also grateful to her students who were understanding about her illness.
“After I started working again, I still couldn’t stand like normal during those times. There was one time, my back was so painful, I had to lay down a little bit, like, sit down on the floor. And then my students said: Okay, never mind, teacher. You just relax.”
Swelling Throughout Her Whole Body
“The best thing about fibromyalgia,” said Izati in jest, “is that there will always be new symptoms emerging.”
She told Ova that one time she could not even put her feet down because they were swelling and it lasted for two weeks.
In fact, Izati has experienced swelling throughout her whole body. “Sometimes it’s so painful but you cannot do anything because the muscle can swell in any part of your body.
“Sometimes it will be the leg, sometimes it will be the hand, and sometimes the back.”
Once, she even had trouble breathing. “My doctor thought maybe I had a heart attack. They did an ECG and all that, and they found out that the muscle around my chest area was swollen. So, it was difficult for me to breathe.”
During the Covid-19 pandemic, after getting vaccinated, Izati found she had developed trigger fingers on one hand.
“One day, you wake up and you cannot bend your thumbs. It was so difficult.”
After switching to her other arm for the booster shot, Izati also developed trigger fingers on her other hand.
“During that time, I cannot even wear jeans. As in, putting them on is so difficult because you cannot pull (them up).”
Worst Curse Is Fibro Fog
However, Izati said, “I think the worst curse ever for me” is fibro fog.
“There was one time I had to wait in front of the ATM for 30 minutes. I could not remember my PIN. I went totally blank. It’s the same with my phone.
“That’s why now I don’t use a password. Because I woke up one day and couldn’t remember my password at all.”
She has even forgotten her students’ names. “They are so clingy with me. So, when I cannot remember their name, they feel sad.”
Farah, who lives in the Klang Valley with her parents, said fibro fog was partly why she quit her job.
“Because I started forgetting major details of my job. My job involves people’s liabilities and people’s money. I was so afraid of myself.
“Let’s say when I was working, I was in a conversation with a client. Ten minutes later, I forgot what the client said. That really gets to you. Because you’re thinking, what happened? Why did I suddenly become stupid? ”
Once, during Hari Raya, Farah said she even forgot some of her relatives. “I saw a relative. And I thought, didn’t he pass away? I couldn’t remember. I was so alarmed. I was like, what’s happening to me?”
Post-Exertional Malaise
But for her, the worst part of fibromyalgia is when she experiences flare-ups.
“There’s also a medical term, PEM, post-exertional malaise.. Usually, flare-ups happen when you’ve just exerted yourself physically or mentally. It can happen the next day,” she said.
“Sometimes, it lasts for one day. During my flare-ups, the hallmark symptom would be that the muscles in my whole body would become very stiff.
“I would describe it to people as, it’s as though you ran a marathon without warming up.
“The next day, you feel cramps all over. It will also be accompanied by achy, sharp pain, nerve pain, and extreme fatigue.”
A good night’s rest does nothing to alleviate the pain, according to Farah.
“When you wake up, the first thing you’ll notice is that it’s very hard to wake up. It also feels like you haven’t slept, even though you had a good night’s sleep. It’s called unrefreshed sleep.
“When you wake up, you take a shower, have breakfast, and then you want to go back to sleep again.
“Usually, on the worst days, I’ll be in bed for many hours. I can wake up for a while to do a few things, and then I’ll have to get back in bed.
While she tried to make the most of her time in bed by doing something productive like reading, Farah said it was still difficult to focus mentally and physically.
The pain management specialist who treated Farah put her on medication. She also had to undergo physiotherapy and psychotherapy.
“They focus a lot on making you pace your own activities so that you avoid the PME, so that you avoid overdoing things,” she told Ova.
“They also make you set goals on what are the things that you are not able to do now, and how do we try to make you able to do this thing in a span of one to two months.
However, Farah was disheartened by the advice from her doctor because “they were telling me to live with the pain, to live with the symptoms. There was no cure, there was no hope.
“At 28 years old, you’re basically telling me that I’m going to live with this for the rest of my life, and I just have to manage it. That’s not something that makes sense to me, and it was too depressing.”
Farah decided to consult a functional medicine (FM) doctor.
“For people with chronic illnesses, where your symptoms are all over your body, it would be much (better) to see an FM doctor,” she opined.
“Because if you go the conventional route, you will be pushed from one doctor to another. From one specialisation to another, which I have experienced in the conventional setting.”
Farah said she also goes for acupuncture and physiotherapy, adding that she had to find a physiotherapist who would be gentle on her.
“Because of fibromyositis, when you exert your muscles, you will flare up. If I go to a conventional physiotherapist, after the session I would flare up.
“The physio session caused more harm than good. I had to find one who was really gentle. So that it actually helps instead of causing more problems.”
“Neurological Diseases Are Real Diseases”
Farah lamented that some doctors think her condition can be attributed to psychological factors.
“They think that if you lose stress you won’t get sick. They think it’s in your head. But in your head, there’s a central nervous system that consists of millions of neurons. They’re not just psychological.
“Neurological diseases are real diseases. I have many doctors who ask me: could your symptoms be contributed by anxiety or depression? I’m like, I’m tired.”
Even when she was working, there were people who thought that if she managed her stress better, she wouldn’t get sick.
“I think some people don’t quite understand that some diseases, especially for rare diseases, some diseases are under researched and there’s not much treatment options available.”
She added that it stresses her out when people ask what treatment or medication she is on.
“So everybody will ask me, what’s your treatment? And a lot of people will be like, you don’t have any medicine? It stresses me out even more.
“Yeah, some of us who are blessed slash cursed with these rare diseases, we have to go around to find the treatment that works (for us).”
Lack Of Information About Fibromyalgia In Malaysia
Izati said she also had trouble finding out about fibromyalgia because “in Malaysia, you seldom see this kind of illness.”
When she first heard about the disease, she had to go online to learn about it and then downloaded an app about the disease to get information from people all around the world.
She said some doctors were not even aware of fibromyalgia.
“There was one time I went to the private clinic and told the doctor my symptoms and she didn’t even know what fibromyalgia is. She had to google it in front of me.
“You really need to study a lot about this. Know your body and know your medications, what medications you need and all that.”
Comorbidities
Izati said it was also imperative to find a doctor who will listen to you. She once had an injury and her blood pressure went up slightly.
“Usually, my blood pressure is normal but because of the injury, it spiked a little bit,” she told Ova.
“The doctor immediately said, okay, your cholesterol is six, we will give you simvastatin, atorvastatin. She started me on 40mg.
“But when I took that, it had a different reaction on my body; I had low blood pressure. I could not function because it’s low.
“So I told her when I met her again. And then she was like, ‘oh no, this is just your mindset’.
“Until I got another doctor. Then I told the doctor, ‘I know my body; if I cannot take it, I cannot take it.This medication is making me feel dizzy’.” The doctor took her off the medication.
She also ran into a problem with a doctor again when she was prescribed medicine for her irregular periods by a gynaecologist.
The doctor in the MPOC was not happy she was taking the medicine prescribed by the gynaecologist.
“They asked me, why did you accept these medications? I said, the one that gave me the medicine is the specialist. You want me to argue with the specialist? I didn’t know I could not take the medications!”
While no association has been made between her irregular periods and fibromyalgia, Izati told Ova she only began having irregular periods when she started working, which is also when her fibromyalgia symptoms began to emerge.
However, she considers her irregular menses a blessing as fibromyalgia compounds her period pain.
“My back pain doubles when I have fibromyalgia. (My) body cannot bear it because it’s too swollen and all. I think one of the reasons God made me not have my period so often is because it actually helps.
“Because having your period every month with fibromyalgia… dying! It’s so painful.”
Izati gets flak from people though, when she tells them her period is not regular. “They will say, oh, it’s not normal for girls to not have their periods (regularly).
“I think we’ll always have this set (of people) in society that don’t understand. They will expect girls to get their periods, girls need to do this, girls need to do that. But with rare diseases like this, you cannot.”
Hurtful Comments From Relatives And Strangers
The expectation to conform to what society considers a sick person should look like and behave weighs heavily on both Izati and Farah.
“I think our society is quite used to associating the sick with the elderly,” Farah said. “They’re not used to seeing young people sick. There are a lot of diseases which can affect young people.
“I’m not sure about the general statistics on fibro, but my doctor, the pain specialist who diagnosed me, said that the patient demographic is mostly young women. So, there are actually diseases that predominantly affect young people.”
While getting larger society to understand is one problem, dealing with family and friends who cannot comprehend the severity of their suffering is another challenge.
“My immediate family, Alhamdulillah, are supportive. In terms of physical health, they are supportive,” Farah told Ova.
“(However) the whole disease is enough to give you depression and anxiety. So the mental health part was something that – especially being from the older generation – my parents took quite a while to understand.
“There were a lot of arguments for them to understand the mental health part. But I think, Alhamdulillah, now we’ve sorted out that part.
“My cousins, my aunts, my uncles… there was a bit of a strain in the sense that I’m afraid. Sometimes I’m afraid of seeing them. Because they would ask questions. They don’t understand.
“Sometimes I use a cane when I need to. Some would make all these weird comments like kids these days get sick easily because they always play with their phones, or because they don’t exercise enough.”
Izati was also on the receiving end of hurtful comments when she used a walking stick and in her case, it was delivered by a stranger.
“I was at the mall and an aunty came up to me, she said, muda lagi dah pakai walking stick macam ni (you’re so young and you’re already using a walking stick? Tak malu ke (aren’t you ashamed)?
She figured the woman said it to her because of her size at the time. “Like right now, you can see I’m already reduced. Before that, I was bigger so she probably thought it was because I’m fat.”
Izati had mentioned that the hormone pills she was prescribed by a gynaecologist to induce her period once led to a weight gain of 15 to 20kg.
Even her own aunt had said to Izati that she was being “tested” because she “had a lot of sins.” And some of her friends and relatives have told her: “You don’t look like you are sick”.
“Because this is not something that you can show, like, I have this pain,” said Izati. You have the medical record but it doesn’t prove anything.”
Low Understanding About Invisible Diseases and Chronic Illnesses
Farah agreed that general awareness and understanding about invisible diseases and chronic illnesses like fibromyalgia is still wanting in Malaysia.
“I think as a society, we need to be more aware about accommodations and facilities for disabled and sick people.
“For example, let’s not talk about disabled parking. I’m not qualified to use disabled parking. And only certain government offices have a line for OKU (the disabled) or warga emas (the elderly).
“I think it would be good to have a standard in all government offices for people who cannot beratur (stand in line) for a long time.
“Also, for example, in a surau, usually they will provide one or two chairs. The function of that chair is actually for people who want to sit down.
“But in the female surau, you know what people use that chair for? To put a blanket, a bag or make-up. That irks me so much.
“And I think if you’re young, (people) will assume that you don’t need the chair and they can just put whatever they want there.”
Izati said she is “frequently judged” because of her illness, even at the hospital.
“People will say, why do you want to sit, you are so young? Until I have to show them the (medical) book so they know I’m not accompanying anyone, I’m the one who is sick.
It requires mental resilience to live with fibromyalgia, said Izati, who said she was in “a dark place” the first few months after she received her diagnosis.
“I’m always cheerful, but when I couldn’t do anything, I became so grumpy. I didn’t want to talk to anyone and I would just stay in bed.”
With the support of her mother and friends though, Izati managed to overcome her feelings of misery and anguish.
“You have to fight. You cannot depend on medication. You cannot depend on people to understand,” said Izati, who explained that she slowly took up hobbies like playing the ukelele and training for marathons in defiance of her illness.
“There will be days when you are in pain, you cannot do anything. There are days when you want to give up, but you don’t. I’ve already accepted. I embrace this fibromyalgia.”
