As some of you may know, I suffer from a chronic autoimmune disease called Fibromyalgia. I haven’t written much about it because I wanted this to be a happy and positive space. But life isn’t always positive (or happy) and I have gotten some requests to write more about the condition. After all, it may end up helping someone out there and it is something I live with, so why not share more about it? So here it is, a very long and detailed post on what Fibromyalgia actually is.
WHAT IS FIBROMYALGIA?
Fibromyalgia Syndrome (FMS) is an autoimmune disease that affects the way the brain processes pain signals, resulting in amplified painful sensations in the body. In simpler words: it’s a complex chronic pain disorder, causing widespread pain and sometimes tenderness to the touch. This can be all over the body or only in certain areas (such as the legs, back or arms), and it is also not unusual for the pain to migrate over the body. Although pain and tenderness are the main complaints – the word “Fibromyalgia” means literally ‘pain in the muscles, ligaments, and tendons’ – FMS has many other symptoms that vary from person to person.
In the past doctors relied on “trigger points” dispersed on the patient’s body to check for the disease, but that is now considered an outdated method since there are many factors that can make certain points in the body hurt. Currently, no specific test to diagnose Fibromyalgia. But because there are so many diseases out there, patients need to be tested for a ton of other things first. This means a lot of trips to (often different!) doctors, a lot of tests done, time spent and a lot of patience on the part of the patient. Often doctors are at a loss and think it’s easier to “diagnose” the patient with depression, which is very depressing (pun intended) and can make things worse for the patient. Just imagine having to deal with constant pain and having someone tell you “it’s all in your head” – definitely not nice to go through.
WHAT ARE OTHER FIBROMYALGIA SYMPTOMS?
Like I mentioned before, widespread pain is the main symptom, but it never comes alone. However, Fibromyalgia makes itself known in very different ways to different people. It can also vary in intensity, making it harder to diagnose and live with.
Some of the symptoms of Fibromyalgia include:
- Sleep disturbances – whether it is sleep apnea, not getting enough sleep or waking up unrefreshed after sleeping for 10 hours.
- Cognitive issues – memory problems, thinking clearly…
- Body stiffness
- Tension headaches and/or migraines
- Irritable and/or overactive bladder
- Irritable bowel syndrome (IBS) and, thus, trouble absorbing vitamins
- Food sensitivity
- Temporomandibular joint dysfunction (TMJD) and tinnitus – pain and dysfunction of the muscles that move the jaw and the joints which connect the mandible to the skull.
- Temperature sensitivity – some research shows abnormal body temperatures, being unable to adapt to changes in temperature, and a lower pain threshold to both heat and cold, meaning that it takes less extreme temperatures to make you feel pain.
- Sensitivity to certain types of food.
- Sound and light sensitivity
- Difficulties managing weight
- Metabolism inbalances
- Thyroid issues
As you can see, there are a variety of symptoms! It’s very unsurprising how difficult it is to diagnose because all of the symptoms mentioned above can also mean other health conditions. Adding to that, there are not many doctors actually specialized in Fibromyalgia. I get it, it’s frustrating for a doctor not to know what a patient has and being unable to help. But think about how frustrating it is for us patients, who suffer from it daily!
IS FIBROMYALGIA THE SAME THING AS ME/CFS?
I have read a lot of medical articles in the last few years. Some doctors think Fibromyalgia is the same thing as ME (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome). Their theory is that the diseases are the same, but the intensity in how it shows on a patient differs. Others think they are completely separate diseases. Lorna (from Raindrops of Sapphire) and I have discussed our symptoms and issues, and I can say there are definitely some things in common. Often what differs is the intensity on how both of us experience the same symptoms. Having that said, I am not a doctor and can not give you a medical answer to this. Personally, however, I do think there are things in common between the three illnesses that should maybe be further explored.
HOW DO YOU GET FIBROMYALGIA?
Let me reassure you here and tell you Fibromyalgia is NOT contagious! In spite of that, doctors haven’t found out the cause of Fibromyalgia yet. Some think it may be genetics and believe that genetic mutations may make some people more susceptible to developing the disorder. Another theory is that it is triggered by some sort of infection. Personally, my symptoms always get worse after I have an infection. However, I cannot say that an infection was the cause of the disease for me – especially because I have started having symptoms when I was 4 years old and don’t really remember it. Fibromyalgia is also thought to be triggered by physical trauma, like a car accident. Some doctors think you have to be born with the predisposition for the disease to get it. Some even think everyone is born with said predisposition and along their lives, the illness gets triggered.
Stress also worsens the symptoms, especially mental stress. My symptoms always got worse around finals time in school/university and even today if I have an important thing to present at work or have to meet new people. I am aware that my social anxiety (and my overall anxiety problems) make things worse, so I try to keep that in check as well.
To be honest, and I think most of those who suffer from Fibromyalgia feel the same way, I don’t really care about how I got it. I care much more about what I can do about it.
IS THERE A CURE FOR FIBROMYALGIA?
Unfortunately, there is no (known) cure for Fibromyalgia. But there are various ways to handle its symptoms and make things…livable, for lack of a better word. Just like no two people have the same symptoms, no two treatments will help the same people. Some doctors prescribe certain anti-depressants to help ease symptoms, such as Cymbalta. Anti-depressants work in different ways and therefore only those who affect the brain nerves are suited to treat Fibromyalgia. But they don’t always work on every patient.
Pain is debilitating in a way no one can know unless you experienced it. I’m not talking about pain when you burn yourself or after a surgery. I mean pain that does not go away, whether you are still or moving. Pain that is constantly present. It’s mentally exhausting. When a Fibromyalgia sufferer has a pain flare that they can no longer handle, they are often given opiates to dull it. Unfortunately, those don’t really make the pain go away, they make you high. They only help because usually, the patient gets to rest and have some sleep while under its effects. And that often does the trick to get the pain to be “manageable” again. When you rest, your body (and brain) get to restore themselves. When you are unable to rest, you are unable to handle situations as usual.
There are some other things that can help manage the symptoms. Eating a mostly clean diet, with as little processed ingredients as possible, also helps. That’s because often processed ingredients have things that we are sensitive to. Light sports also help. Now, this is a tricky one, because what is “light” for someone may be hard for someone else. And when you exert your body too much, as a Fibromyalgia sufferer, you can actually trigger a flare. It’s important to know your own limits when you have this disease. For example, I have a much longer recovery time than other people, but I wasn’t aware of this. So whenever I used to workout hard, I was actually doing more damage than good.
HOW CAN YOU LIVE WITH FIBROMYALGIA?
This is a question I get asked a lot whenever someone finds out I have this disease. Truth is, I have no other choice! Approaching my 30ies, I now have a better understanding of both my body and the disease. But until a few years ago, I was lost! I trusted doctors who said there was nothing wrong with me and spent years thinking I had some type of mental illness creating the symptoms. And I always try to be a “bright and happy” person, which definitely did not help when I was younger. When I was 18 one of my best friends died very suddenly in a car crash and I was, naturally, devastated. I did not know how to deal it and my symptoms went haywire!
I spent the following year mostly in bed, unable to go to classes. It was horrible and made me feel so unable because I had moved to Lisbon to go to university, was living 5 min away from it and unable to function properly. I genuinely thought I was depressed at the time. Now, I know I was having a Fibro flare.
I tried asking for help at the time, only to be directly told by my mother to “quit my made-up depressions”. After that, I felt so let down, so alone in the world with these very real symptoms that not even my family took seriously. So I learned to deal with it myself never asked anyone for help anymore. The thing is, you can’t tackle it alone!
Markus sometimes has to almost pin me down so I don’t keep doing things when I’m in pain. He constantly tells me I don’t “have” to do things I can’t or make my symptoms worse. But I grew up constantly hearing I was “lazy” because I would spend hours lying in front of the TV (not even really registering what was on). And it stuck with me. Sure, I know those around me did not understand what I was experiencing, but it still hurt every single time I heard things like that.