A comprehensive patient guide to life with fibromyalgia.
So you’ve just come out of your hospital appointment after suffering from chronic widespread pain for over three months. Your doctor has just told you that you have fibromyalgia.
You’re overwhelmed and confused. You’re grateful that you have an answer for what is causing your pain, but what happens next?
First of all, I’m sending you a virtual hug because if you’re reading this, I know you need it.
As someone who has suffered from fibromyalgia since 2014, I can tell you that you’re in for a roller coaster of a ride. It’s going to be hard. Having a network of people to talk to about your symptoms and what you’re going through is crucial whether you have a diagnosis or not.
To get started, here’s a terrific support group for women with fibromyalgia:
This is a group that I admin. We’re a group of women who are 2,000+ strong. It’s a very supportive group with no drama. This is where you can rant, rave, and share about what you are going through. We have strict rules and the members are super nice and very knowledgeable. Fibro Strong since 2014.
If you left your appointment in tears, like me, not understanding what is happening to you and you’ve just learned that the relentless body-wide pain you’ve been experiencing has no simple cure, you are not alone. There are millions of us around the world and we’re all looking for ways to live with this beast called fibromyalgia.
This post breaks fibromyalgia down into easy to understand questions and provides additional resources.
What is Fibromyalgia?
Fibromyalgia is, unfortunately, a catch-all term that is used when medical professionals cannot find a known cause for your widespread chronic pain. Fibromyalgia is also known as a diagnosis of exclusion since many patients meet doctors who do not believe it exists.
There are great doctors out there, though, and I promise that you’ll find someone eventually who believes in your pain and believes in YOU!
Some basic stats to know about fibromyalgia:
You’re likely experiencing unexplained chronic pain, fatigue, brain fog, and stiffness when all other medical conditions have been ruled out.
Fibromyalgia extends far past widespread pain. There are over 200+ symptoms with fibromyalgia. It is a whopper of an illness and we desperately need more funding a research.
I didn’t know that fibromyalgia often involves irritable bowel syndrome, migraines, depression, and mood disorders when I first got sick, but it became apparent soon enough. I have been able to tell the difference between fibro pain and AS pain from the start of my journey with chronic illness.
Your mental health is affected because your body has gone haywire.
Fibromyalgia overlaps with MANY other chronic illness conditions, such as Ankylosing Spondylitis which is now known as Axial Spondyloarthritis, EDS, Rheumatoid Arthritis, Irritable Bowel Syndrome and Irritable Bowel Diseases like Crohn’s and Ulcerative Colitis, migraines, MECFS (Chronic Fatigue Syndrome), and more.
Some patients might eventually find a specific cause for their fibromyalgia diagnosis. Others might never learn why it started.Some people get better from fibromyalgia, but a great many of us do not. Instead, we learn to thrive and survive by develop coping techniques to manage our daily pain. Click To Tweet
Here are some common patient questions that you can consider asking your doctor if you suspect you have fibromyalgia. Ask your support groups. I’ve often found that when medical professionals cannot answer my questions, patients in my support groups can. Remember that you are not alone!
- What is wrong with me?
- Why do I hurt all over?
- Why do I feel so sick all the time?
- Why am I so exhausted?
- How did I get fibromyalgia?
- How is fibromyalgia treated?
- How do I cope with pain?
- When will fibromyalgia go away?
Flares are a sudden increase in symptoms from my normal day-to-day levels of energy, fatigue and pain. They can hit suddenly without warning. Often when you flare, your body becomes enflamed from head to toe.
Worsening pain and fatigue are always my first two symptoms, but they are always followed by other symptoms. My body moves in cycles with flares. Although I never know how long they’re going to last, they almost always follow the same symptom routine.
Some of my flares last days, while others can last weeks, months and even years. Learn more about what triggers my flares, how long they last, and how I have to manage my lifestyle when they hit from this article: What is a Flare?
The article I’ve linked above also lists the triggers that most fibromyalgia patients cope with during flares. We are all different, but most of us experience the same type of flare activity from the same types of triggers. Triggers can include everything from stress to activity, weather, hormonal changes, and more.
What are Symptoms of Fibromyalgia?
The most common symptom for fibromyalgia patients is widespread pain and extreme fatigue.
You’ll notice that you are in pain, and that you’re stiff and tender everywhere. Muscles, tendons and joints are most commonly affected, but I’ve even had days where my hair and my nose hurt!
Symptoms always vary with each patient. They can also vary in intensity and they can come and go within a matter of hours.
Symptoms of fibromyalgia may include:
- pain throughout the body, particularly in the back or neck
- extreme sensitivity to pain, bright lights, smoke, and certain foods
- stiffness when staying in the same position for long periods
- muscles spasms
- extreme exhaustion
- poor quality sleep
- trouble with remembering, learning, paying attention, and concentrating referred to as “fibro fog”
- slow or confused speech
- frequent headaches or migraines
- irritable bowel syndrome
List source: MedicalNewsToday
As someone living with fibromyalgia, I experience all sorts of issues on a daily and weekly basis including restless legs syndrome at night, insomnia, dizzy spells, feeling too hot or too cold, and clumsiness.
I am in pain all the time. I do not remember a day without pain now, although my pain levels vary. For many years (2014 through 2019), my pain was disabling and was rated constantly at a 7 through 9 with level 10 being a day to go to ER.
In 2020, I started seeing some relief from intense pain. I still experience high levels of pain almost every day, but I’ve noticed that the pain is starting to go down later in the day. I also felt really lucky to have some low pain days in 2020 as well.
Experiencing pain on a daily basis causes all sorts of problems. It interrupts your sleep constantly, and without sleep, the pain gets worse. I’ve also had major problems with work. I work from home, but there are many days when I’m too sick to do a few hours a day.
Naturally, my home life has also been affected. I’m mostly housebound and have plenty of things to do around the house that keep me busy, but there are many days when taking a shower or doing the dishes are out of the question. A lot of household chores have to wait or my husband does them. For example, he does all our grocery shopping now.
Obviously with such major changes occurring, I’ve experienced a lot of anxiety, depression, and trauma.
Never underestimate how much pain can affect your life. I’ve had to learn how to pace relentlessly and micromanage every part of my day to get through. The most important lesson you can learn is how to pace for pain management.
I’ve also had to learn the importance of saying no. There are many things I simply can’t do. It doesn’t make sense to push through things when you know they’re going to make you sick.
I live with strict limitations as coping techniques for pain and exhaustion.
Readers have asked how I treat my fibromyalgia flares when they happen, so I created a handy fibromyalgia flare survival kit for you to review. Click on the image or link above to view my resource page.
This page includes a list of doctor-approved supplements, things to use at home to cope with pain, and what you should pack for your car if you have to travel somewhere.
You should also have a kit in your car for ER emergencies. We keep my medical kit stored in our car in case we need it.
Remember that I am not a medical professional. You should seek help from your doctor and ask questions before trying anything you find online.
Depression: An Overlooked Symptom of Fibromyalgia
When you’re in pain every day, it’s natural to be depressed. In fact, depression and anxiety as well as other mental health issues are all very real parts of day to day life with fibromyalgia.
It’s almost always overlooked by patients and doctors.
I didn’t even notice how deep my depression was or how badly it was affecting me until a year later when I realized I was passively suicidal. At that point in my life, I really didn’t care if I lived or died.
Once I realized that’s not normal, I talked to my rheumatologist and he booked me in to see a psychologist. I was an anti-depressants for several years before I felt well enough to wean off them.
I would go back on them in a heartbeat if I ever felt I needed them.
Depression is a very real part of fibromyalgia and it’s often an overlooked symptom with many patients. With any kind of pain condition, it’s really important that you’re paying close attention to your mental health.
Pacing is key and can help with pain management and I’ve found this helps to reduce the depression I experience. But when I push too hard or something takes me by surprise and causes an extreme stress reaction, the depression comes crashing back and it usually comes back quickly.
Additionally, many people do not realize that mental effort can be just as damaging as physical effort. It’s really important to remember this! It doesn’t matter how you exert yourself. Depression doesn’t care whether you’re sick from mental exertion or physical exertion.
There is no better way to tell you than to say it now after you’ve seen my updates on life with chronic illness. ⠀
All I know is I *must* rest and be quiet. No work, no activity, no calls, no bright lights, no chats, no big meals… Rest is best.
That’s it for now. This page, like every other post and page on My Several Worlds, is a work in progress. I update regularly as new information and resources are released. Feel free to contact me if you have questions and take good care of yourself!