Fibromyalgia in Taiwan – What You Need To Know
If you’ve landed on this page, you’re likely here in Taiwan and have just realized that there is the disturbing lack of information about fibromyalgia in Taiwan. You’ve likely searched online and realized there is nothing current to read about fibromyalgia too. Or perhaps you’ve realized some sources are in Chinese but the information is wildly out of date.
It makes for dismal reading and I know first-hand how isolating it can feel.
I’m glad you’ve landed here, where I can assure you that:
a) you are NOT alone. There are plenty of patients with fibromyalgia in Taiwan who are looking for information in English, and
b) this page includes up to date information and I’m adding to it monthly. I hope it helps.
This page has been created as a resource page for fibromyalgia patients in Taiwan who are looking for further information and assistance. If you have questions, you can contact me directly or visit My Several Worlds’ FB page and review the information articles that I post there for my readers.
First, a disclaimer and a reminder that I’m not a medical professional. The resources I’ve posted here are from reliable and trustworthy medical sources. There’s a resource list at the bottom of this page. This page is comprised of information that I’ve compiled from my own appointments and doctors. It includes information from other patients in Taiwan as well.
In the 10+ years that I’ve been bouncing around from doctor to doctor, my experiences haven’t changed much. Some of my doctors retired, one dumped me, and the rheumatologist I’m seeing now has been steadfast. He hasn’t had to deal with major health crises with me and I’ve improved under his care, which is what every patient wants!
When you’re a patient who experiences problems every day with their health and you’re simply looking for a stable doctor-patient relationship, it’s essential that you find a doctor who believes in you and who wants to help. (Although doctors in Taiwan are quite limited to how much help they can give complex patients like us because of how Taiwan’s healthcare system is set up. But that’s another article entirely.)
Thus, I feel qualified to hone things down for readers based on confirmed and lived experiences.
Perhaps this page will help you so you don’t end up feeling as lost I felt when I learned about my fibromyalgia diagnosis and had nowhere to go. As a veteran patient, I’ve learned some valuable lessons and information along the way that I’d like to share with you.
DOCTOR-PATIENT RELATIONSHIPS IN TAIWAN ARE PERPLEXING
According to the American Society of Anesthesiologists, the general consensus is that fibromyalgia is a result of an overactive and hypersensitive central nervous system, which we refer to as CNS. Ultimately, the brain and spinal cord have developed heightened pain activity to external and internal stimuli that don’t affect healthy people.
“Extensive research suggests that the most prominent symptom of FM, chronic widespread pain, is neurogenic in origin. The pain seems to result from neurochemical imbalances in the central nervous system that lead to a “central amplification” of pain perception characterized by allodynia (a heightened sensitivity to stimuli that are not normally painful) and hyperalgesia (an increased response to painful stimuli)… Although awareness and understanding of FM have improved, it is thought that FM remains undiagnosed in as many as 3 of 4 people with the disorder.“Source: The Science of Fibromyalgia, US National Institute of Health
The first lesson I learned in Taiwan that I think most patients should be aware of is the cultural differences between doctors here in Taiwan compared to other places around the world. Doctors here will NOT explain fibromyalgia to you like this!
My experience, time and time again, is that doctors have a very different kind of ‘bedside’ manner here in Taiwan.
Delivery of your diagnosis as well as how doctors receive your monthly descriptions of pain and the difficulties you’re having will almost always be stoic in manner.
Your doctor will not educate or inform you, so I strongly recommend that you document everything and do as much research as possible. Bookmark this page to refer back to.
No doctor has ever explained to me why I have such intense reactions to bright lights (photophobia), noise, or even large gatherings of people. They don’t tell you that your central nervous system is on overload and that you actively need to work at calming your nervous system.
Eventually, I ended up contacting organizations in North America for information. Over the past decade, I’ve stockpiled resources for myself and for my readers. Scroll to the bottom of the page for that list of resources I’ve mentioned to you. There are direct links there for more information.
The indifference that I’ve experienced while being in overwhelming pain and being told I have an incurable illness and a lifetime of pain to look forward to can be very shocking for Western patients who are newly diagnosed.
Taiwanese culture does not encourage patients to ask questions. You’re expected to trust your doctor. The expectation for patients – most of us whom are veteran patients and actually know quite a bit about our bodies – is that we should listen and not offer any of our own expertise in our lived experiences.
Newly diagnosed patients end up in situations where they are confused by the language barrier, are afraid to ask questions, and aren’t aware that they must advocate for themselves for better care.
Inevitably, every fibro and Ankylosing Spondylitis patient I’ve met here in Taiwan has felt dismissed, not listened to, or has left their appointments feeling like they can’t trust their doctor!
There’s no formal discussion about the fact that you have a life-changing illness and that you need to focus on lifestyle management. I’ve seen close to a dozen doctors for my AS, PsA, and fibromyalgia diagnoses in Taiwan. Not a single one of them mentioned that I needed to change my lifestyle or suggested that pacing helps to minimize flares and pain.
I’ve come to realize that patients need to understand this quickly and start their own research.
Obviously have a poke around my site while you’re at it because there are over 800 articles here that show a lifetime of personal observations about being chronically ill and my own advocacy work.
WHAT YOU CAN EXPECT FROM APPOINTMENTS
I’m hoping this changes, but for the most part, my experiences have been confirmed by many other patients who have gone through the same thing.
In Taiwan, you can expect the following with appointments for chronic pain problems:
The patient goes to a doctor seeking help for chronic, widespread pain everywhere in their body. Perhaps they have additional problems like allodynia, photophobia (sensitivity to light), sound/noise problems, and/or they seem to be allergic to everything. They’re experiencing extreme fatigue and brain fog. They’re likely depressed as well.
The doctor jots down a few notes and asks some vague questions about pain. There is usually no mention of a pain chart. In fact, I just saw my first pain chart in Taiwan a few months ago after being in the healthcare system for over a decade with serious chronic pain health problems and I had to ask about the chart!
Sometimes the patient will be offered a diagram of a body and asked to circle their areas of pain on the front and back of the body. I’ve also met many doctors who skip this necessary paperwork as well.
Your doctor should have a good understanding of where your pain is located. If it’s everywhere, tell her or him where the most severe areas of pain are and make sure you include everything. Describe as much as you can!
Then describe what your pain feels like. Start looking at specific words to describe your pain and write them down for your doctor.
Keep a copy for yourself!
Ask your doctor for a copy of his or her notes from every appointment. It also provides insight into how your doctor is reacting to the information you’ve provided.
TREATMENTS FOR FIBROMYALGIA IN TAIWAN
Treatments for fibromyalgia in Taiwan are limited and typically focus on medications. Lifestyle changes and therapy are secondary. Sometimes they’re mentioned, but my experience is that they are not mentioned at all.
Options fall into three treatment categories: medications, lifestyle changes, and therapy.
Most patients do best when using all three therapies, but unfortunately, in Taiwan, it’s rare to find a doctor that will tell you about all three.
Your doctors will tell you three things: Exercise more. Drink more water. And the next step – always and without fail – is to suggest Lyrica or Cymbalta to assist with chronic pain.
There is never any kind of discussion about lifestyle management. You’ll have to figure that out on your own.
Medications That Treat Fibromyalgia
- NSAIDS – Nonsteroidal anti-inflammatory drugs such as aspirin, ibuprofen and naproxen – Available in Taiwan
- Pregabalin (Lyrica) – Available in Taiwan
- Duloxetine (Cymbalta) or milnacipran (Ixel, Savella, Dalcipran, Toledomin) – Cymbalta is available in Taiwan for treatment of Fibromyaglia. To my knowledge, milnacipran is not available yet.
- Muscle relaxants – Available in Taiwan. Usually doctors prescribe Solaxin and it’s available at pharmacies.
- Tricyclic antidepressants like amitriptyline and nortriptyline – Available in Taiwan.
- Steroids – Available in Taiwan but doctors rarely issue steroids for fibro pain. It’s more common if you have an arthritic condition.
- IV infusions of lidocaine – Not available in Taiwan.
- Low-dose naltrexone – Not available in Taiwan for fibromyalgia yet. (January 2021.) Patients in North America and other Western countries have had great success with this in managing pain. Here in Taiwan, you’ll be labeled as a drug addict who needs help coming off opioids. They haven’t even begun to consider it for treatment for fibro.
Don’t expect your doctor to go over medication side effects or tell you what to expect. Make sure you ask WHEN you should take your medications.
Ask about drug interactions. MAKE SURE YOU CROSS REFERENCE your medications here: Drug Interactions Checker
Here’s a great example from a patient who reached out to me years ago and what their experience was:
I’d like to point out that this experience is nearly identical to my experience from my diagnosis. The writer mentions the meds his wife is on and includes a plea for help because her doctors aren’t helping here. In fact, he doubles down and says that her doctors do the same thing every time!
When I responded to him, he told me his wife was constantly referred back to Cymbalta and Lyrica, which are the only two meds here that doctors seem to push for fibro. These meds help approximately 30% to 50% of fibro patients. Case study
A disclaimer: Every patient is different, so it’s important to try! I know plenty of patients who benefit from these meds, but if you’ve tried them three or four times and they’re not working, then it’s likely safe to assume that the meds don’t work for you.
Record when you took these medications in your medical journal. Pull that journal out any time a new doctor recommends the same meds to you. It has saved me a lot of time by just pulling my charts out, flipping to the color tabs and saying that you can read here, here, and here about when I took these meds and what happened.
FIBROMYALGIA, EXERCISE, AND LIFESTYLE CHANGES
Exercise, for a great many of us, can be next to impossible if the pain is severe.
I’ve found doctors don’t have an idea how much moving is possible for you.
If you’re like me, perhaps you’re severely limited with movement. I can stand or walk for approximately 20 minutes before I’m in agonizing pain. This has never changed, not since 2015. Graded Exercise Therapy did not help. Believe me, I have tried many times to break 3,000 steps per day and it always lands me back in bed in a flare.
But it is important to keep moving! Try to get some gentle stretching in each day and try to walk as much as you can. If you have access to a pool, even better! Swimming and movement in water is much easier on your body and can offer great rewards if you can do it.
Additionally, your doctor might schedule some physical therapy for you.
Other important factors that go into managing life with fibro such as lifestyle management tips for proper sleep, pacing for pain, or keeping an eye on your mental health are never issued or mentioned.
A great many patients that are in chronic pain experience depression. Fibromyalgia is well known for affecting your mental health. Yet mental health is so stigmatized in Taiwan, it’s rarely mentioned at appointments unless the patient brings it up.
These are basic facts that fibro patients MUST know. Living with fibromyalgia requires changing several approaches in your day to day lifestyle. Your doctors will not bring these topics up with you.
- Reduce stress. Fibromyalgia is a central nervous system disorder. Your body is in a heightened and constant state of fight or flight. Patients must develop real plans to assist with stress management.
- Pace yourself! Pacing is a technique that patients use to manage their energy output. Fibromyalgia causes profound fatigue and sleep does very little to help us recoup our losses and recharge. It’s really important that you start paying attention to how much you are doing each day and if certain activities are causing flare-ups of your fibro symptoms. Pacing for pain management is the only way I can live a somewhat regular life, so I’ve got my daily activity routine locked down.
- Develop a strict sleep routine. Going back to fatigue, I can’t stress enough how much fatigue affects fibro patients at a basic level. Having a strict bedtime routine that allows you to wind down easily at night is essential. And since most fibromyalgia patients have sleep disorders, it’s really important that you get as much sleep as possible. I guarantee that you’re never going to feel like you’ve had enough.
- Eat a healthy, balanced diet. Simply put, there is no disease in the world that isn’t made a tiny bit better by eating well! Since fibro patients tend to be sensitive to specific foods, it’s important that you focus on fresh fruits and vegetables, whole grains, healthy fats, and lean protein. Avoid processed foods and excessive amounts of sugary sweets. Most patients figure out their food triggers early on in their diagnosis. Avoiding trigger foods genuinely does help with reducing fibro pain.
- Avoid environmental triggers! I can’t stress this one enough. Fibro patients react to things within our environment in dramatic ways and those triggers become pretty obvious because they’ll make you sick quite fast. Some of us have light and noise sensitivity and have to use aids to help us manage this part of our disease. (Light blocking glasses or avoiding loud places.) Some of us react to pollution or chemicals in extreme ways. Some of us react to basic household cleaners that you’d never suspect. I even react to laundry detergent, so when I say leave no stone unturned with these types of triggers, I genuinely mean it. Keep track of what you react to and then avoid it.
- Exercise. This can be a touchy subject with some fibro patients, especially patients who have fibro and MECFS. In my case, I react terribly to extra exercise, so I focus on gentle stretching and short walks. Everyone is different, but it’s important to keep moving. How much you move and what you do can only be decided by you and how your body reacts.
- Find a support network! This is another point I can’t stress enough. Find a fibro group online or reach out to other fibro patients. It helps immensely to know that you’re not alone. And on bad days, when you’re on your own and you feel like no one understands what you’re going through, I promise there are patients out there like me who will be there to help you carry the weight of living with fibro.
NOT SURE WHAT A FLARE IS? LEARN HERE!
Time and time again, I am shocked by the lack of information that is available for patients here. Even Chinese support groups are lackluster compared to the massive online support groups I’m in.
I’ve found that the Chinese groups post some content in English, but the content is terrible. They don’t seem to be aware of the big sites that offer up-to-date research and information for patients with fibromyalgia.
THE BEST FIBROMYALGIA PATIENT SUPPORT GROUPS
Fibromyalgia and Ankylosing Spondylitis in Women on Facebook for support and information. This is a great group of women who will give you much-needed information and they’ll listen to you if you need to vent. We have seven admins on our team and there is always someone up and in the group late at night if you need help.
Men with Fibromyalgia on Facebook covers men’s health education, advocacy, awareness, and research! This is a place where men and women with Fibromyalgia can share their stories with like minded and physically compatible people who understand what their lifestyle is like.
Fibromyalgia Warriors Worldwide is another great group that has patients all over the world connecting and sharing resources.
WEGO Health is a health platform that cover all health topics. Their goal is to empower patients and caregivers by giving them the tools and platform they need to share their voice and connect with others. You’re never alone when you are part of the WEGO Health Community.
Set up your free WEGO Health account today and start connecting with other patients. I promise you won’t regret it!
MY MISSION STATEMENT FOR PATIENTS WITH FIBROMYALGIA IN TAIWAN
My mission statement with My Several Worlds is to assist chronically ill patients in Taiwan and Asia with resources in English. I’m a recognized patient leader and health advocate and I work with a great number of patients here in Taiwan who are looking for extra information, a support network, or a friend who will listen and help you carry the burden of being chronically ill abroad.
This is especially important here in Taiwan because doctors simply do not educate their patients on lifestyle management.
I can also provide you with educational tools to assist you with questions to ask your doctors and give you information on how to manage your lifestyle with chronic pain. Follow me on Facebook!
As of today, Jan 25 2021, My Several Worlds is still the ONLY website in Taiwan that is offering patients with fibromyalgia in Taiwan additional information in English.
This is why I’ve continued adding to this site. My Several Worlds covers information on where to go if you have an Ankylosing Spondylitis (axial spondyloarthritis) diagnosis, IBS, MECFS, migraines (which are still seen as headaches here) and other illnesses that slip through the cracks.
I can’t tell you how many times I’ve had patients call me from Messenger while they’re at the hospital wondering what they should tell their doctor so the doctor understands how bad the pain and fatigue is.
INFORMATION FOR PATIENTS WITH FIBROMYALGIA WHO ARE LIVING IN TAIWAN:
Patients often ask where they should go to be treated.
Here are some famous examples of doctors who treat fibromyalgia in Taiwan, including:
- pain medicine (Physical Medicine and Rehabiliation)
NO WONDER PATIENTS DON’T KNOW WHERE TO GO IN TAIWAN!
This is a great resource from Taipei Medical School that allows patients to cross reference doctors with their expertise in certain fields.
I strongly encourage you to start with this resource first, whether you have fibromyalgia or not. If asked, I would personally recommend seeing a rheumatologist first.
Rheumatologists are internal medicine specialists that treat arthritis and diseases of the joints, muscles, and soft tissues. More than any other type of physician, it’s rheumatologists that follow the most up to date information and advancements in fibromyalgia developments.
Here are some other established rheumatologists in Taiwan who have positive reviews about their treatment protocols for fibro patients in Taiwan.
- Dr. Jiunn-Horng Kang, Taipei Medical University Hospital, Physical Medicine and Rehabilitation (A highly rated doctor in chronic pain, neuroscience, musculoskeletal and neurological pain, and sleep medicine (Dr. Kang speaks English and Chinese fairly well.)
- Dr. Chien Chen, Tzu Chi Buddist Hospital Taipei (rheumatology)
- National Taiwan University Hospital in Taipei has a good rheumatology department in general. You should be in good hand with their team there
- Dr. Sun Weiren, National Taiwan University Hospital (NTUH in Taipei) – Anesthesia and Pain Department
- Dr. Yang Zhichao, Department of Neurology, National Taiwan University Hospital
- Dr. Weng Jujin, Department of Pediatric Neurology, Department of Pediatric, National Taiwan University Hospital
- Chen Jiancheng Taipei Hsin Hospital Rehabilitation Division
- Chen Yi-line Taichung, Veteran General Hospital
- Tan Guodong, Taichung Veteran’s General Hospital
- Cheng Yuanyang Rehabilitation Department, Taichung Veterans General Hospital
Obviously when you’ve seen doctors for years and you’ve seen no improvement, doctors start to become suspicious. I’ve been dropped by doctors who didn’t know how to treat my pain and who then suggested I needed to see a psychiatrist for my illness. I’m not depressed. I’m in pain. My central nervous system is out of whack and my brain is telling my body that there is pain somewhere where there shouldn’t be pain. Fix the pain and you’ve got no depression.
And yes, most patients with fibromyalgia are going to remain hesitant to tell people they have FM simply because they are worried that people will think they’re crazy, that it’s shameful to see a psychiatrist, and of course, mental health is highly stigmatized in Taiwan.
Kaohsiung Armed Forces General Hospital has a good resource page on fibromyalgia, but I am genuinely puzzled to see it listed under Psychiatry since fibro is usually treated by rheumatologists. That said, please don’t discount psychiatrists for treatment. Depression and anxiety are fibromyalgia co-morbidities that must be taken seriously. Patients with fibromyalgia are three times as likely to suffer from depression compared to the general population.
Your overall treatment plan might include seeing a psychiatrist or psychologist and your doctor might recommend that you see one to help relieve some of your symptoms and to help you cope with the mental aspects of living in pain.
Please do reach out if you’ve received a fibromyalgia diagnosis or you’d like further information. I update my pages and posts regularly and like every other page on this website, this page is a work in progress, so please check back. I’ll add new information as it comes in.
Working with other patients is something that I genuinely enjoy doing. It’s something that benefits me as much as it benefits you. Most of us are simply looking for a little bit of extra support or a friend to lean on. I want you to know that you’re never alone here. I’m here and I’m waiting to hear from you.
RESOURCE LIST FOR FIBROMYALGIA PATIENTS IN TAIWAN
- First, make sure you have a good look around in my MSW Fibromyalgia Directory. There are plenty of articles here from the past ten years that offer helpful advice for patients
- US National Library of Medicine – National Institutes of Health – Understanding Fibromyalgia and Its Related Disorders
- Health Rising – Cort Johnson’s Finding Answers for MECFS and Fibromyalgia is a must read.
- Support Fibro
- Fibromyalgia Resources: 200 Symptoms Checklist
- Taiwan Fibromyalgia Association (This site is in Chinese.)
- Rheumatic Diseases Caring Society of Taiwan 台灣免疫風濕疾病關懷協會 版權所有
- Medical info site for fibromyalgia. Right click to translate to English. https://www.pfizer.com.tw/mediacalinfo/2010/27/index.html
- National Taiwan University Hospital – Department of Neurology – Fibromyalgia Right click to English for this page. Aiyo, as we like to say in Taiwan. Here’s a note from that page which confirms my overall observations! “Usually, after doing a lot of examinations, it is impossible to find out the reason. Doctors often give an explanation casually.… In terms of treatment, in the past, general painkillers were used to treat the disease. In addition, patients often have anxiety and depression. Many doctors consider this disease as a mental disorder.“