My experience with Fibromyalgia

 

 

So in my last video I briefly discussed cerebral palsy, and now I’d like to talk about my second disability fibromyalgia because for whatever reason life decided to bestow another gift upon me. Aw, for me thanks wait this isn’t another… what’s this!? I don’t want it! I’m still trying to get rid of the last one you gave me. Take it back! I guess I have two disabilities now. Maybe I can re-gift gift one of them or something. Anyway, fibromyalgia is considered to be an invisible disability meaning you can’t tell someone has it by just looking at him with her. But believe me, that person does feel it. Seriously if someone were to ask me to describe fibromyalgia in one word, I’d say pain, but I’ll get back to that in a second. Unlike my cerebral palsy, I was not born with fibromyalgia. I didn’t realize it at the time, but the symptoms started near the end of high school a few years ago.

I’d lay down at the end of the day, and my feet would be in throbbing pain as if I’ve been walking all day. Apparently I’m not the type of person who spends a lot of time on her feet, so this was unusual. Over time, both my legs and feet starting to hurt more and more often. At first, I thought it might be cerebral palsy related since I have some mild pain due to muscle spasticity, but things quickly went downhill from there. I started relying on my chair more and more due to an increase in falls. This was more than typical spasticity, and this was my muscles giving out altogether. It was as if my legs went completely on strike. I can still walk some, but my already limited mobility was extra limited.

To make matters worse, the pain was spreading and becoming increasingly intense. Then the nightmares came. You know how sounds can affect a person’s dream? Well, imagine what random sharp stabbing pain can do. Upon having dreams of being attacked by animals with sharp teeth and claws or sometimes being repeatedly stabbed with swords, I’d wake up from the dreams in horrible pain almost feeling as if the dream had happened. Needless to say, I was panicked! Having no idea what was wrong with me or how much it was going to progress, my parents took me to different doctors trying to find answers. We did not try akupunktur.

However, I felt as if the majority of the doctors didn’t take me seriously and didn’t try very hard to find out what was wrong. One doctor in particular ticked me off, but I’ll save that for a later video. The few prescribed medications I did try didn’t help the pain. In fact, one medication, in particular, made the whole situation worse. Finally a little less than a year ago, a doctor mentioned fibromyalgia. It took about five years to find out what was wrong with me, but now I had a diagnosis to work with. Fibromyalgia pain can vary from a dull ache or tingling sensation to a sharp stabbing or shooting pain anywhere in my body.

One morning here recently I was awoken at a.m. to a friendly wake-up call of a sensation of being stabbed in the gut. The pain initially started below my rib cage and shot straight at my chest. Not being fully awake, I began to fall back asleep when it happened again. Ooof, okay okay I’m awake. That was the height of my pain for the day, but some days the pain stays with me the entire day.

I still feel like I can’t accurately describe how random the pain is. I mean you know your nervous system is glitched when one day you feel like something is trying to eat your face, and the next day you feel a mild ache in your right arm. It feels as if wherever I have nerves, I can have pain. Even my teeth can hurt to the point where I dread brushing. I’ve never had a cavity. In addition to phantom cavities, apparently, fibromyalgia patients can experience phantom heart attacks due to a condition called costochondritis. Costochondritis causes pain around the ribcage due to an inflammation of the cartilage. This can create a quick jabbing sensation in the chest area mimicking the sensation of a heart attack. I figured if I ever have an actual heart attack in my old age, I’ll sort of peacefully die from it without realizing what’s happening. Wait what? Oh, that one must have been real… Freedom! Whoo! I have only experienced this phantom heart attack a couple of times, so it hasn’t been a huge problem.

Usually, my costochondritis flares up, it feels like something gently squeezing my heart. So far there is no cure for fibromyalgia, but with the power of the Internet, I was able to research the condition and find ways to combat it. There is a link between inflammation and fibromyalgia. Therefore proper diet can make a difference. By cutting out certain foods, I’ve been able to control the pain better. I have by no means erased my fibromyalgia symptoms and can still have severe pain flare-ups on with pretty awful fatigue. I usually have some form of pain 24/7, but it’s usually just mildly uncomfortable versus the paralyzing levels that can reach. I also want to make a separate video about diet, so I go into detail later on. Well, that wraps up this video. Thanks for taking the time to watch that video, guys. Do any of you suffer from chronic pain? Leave a comment in the section below and share some things that help you. And if you enjoyed this video, please click the subscribe button to keep up with my future videos.

See you guys later! And remember, always be sure to show a little kindness to others.

Episode 46: Fibromyalgia

Hello, and welcome to another episode of Squeaky Wheel Productions’ Disability Series. Today’s topic is Fibromyalgia. What is fibromyalgia, what causes it, and how is it treated? We’ll learn the answers to each of these questions and more. Let’s get started! Fibromyalgia, also known as fibromyalgia syndrome or FMS, is a medical condition characterized by widespread bodily pain, and is often accompanied by various other symptoms. It can affect anyone at any age, but primarily affects women and individuals over the age of 30. According to the Center for Disease Control, fibromyalgia affects an estimated 2% of the adult population. Now let’s look at the causes of fibromyalgia. It is not entirely clear what causes fibromyalgia, but it is thought to be caused by a number of factors such as genetics, physical trauma, infection, and psychological stress.

Symptoms can also gradually develop overtime without a specific cause. It is believed that fibromyalgia develops following repeated nerve stimulation, which can lead to an increase in brain chemicals and the development of overly sensitive pain receptors. So, what are the symptoms of fibromyalgia? The main characteristic of fibromyalgia is widespread bodily pain. However, it is important to note that the condition affects everyone differently. Other common symptoms of fibromyalgia include increased sensitivity to pain, fatigue, muscle stiffness, Sleeping difficulties, and difficulty concentrating.

In addition, the disorder may also be present alongside other health conditions such as migraines or headaches, irritable bowel syndrome, sleep apnea, depression, and anxiety. Unfortunately, fibromyalgia can be difficult to diagnose as the condition is often confused with other disorders. So what treatments are available for fibromyalgia? There is currently no cure for fibromyalgia, but symptoms of the disorder can usually be managed with a variety of treatments and lifestyle changes such as medication, physiotherapy, occupational therapy, and counselling. However, some treatments are more effective than others, and not all treatments work for all individuals. Well, that’s all for this week. Now I’d like to hear from you. Did anything surprise you in today’s video? Please let me know in the comments. If you enjoyed this episode and want to see more videos like this one, then please subscribe to our YouTube channel, or support us on Patreon. To learn more about this week’s topic, be sure to check out this week’s vlog and the additional resources below. Thanks for watching and see you next week!

Newly Diagnosed with Fibromyalgia?

fibromyalgia

Being handed a diagnosis of fibromyalgia can be really scary. Let’s talk about the emotional whirlwind and steps you can take to move forward.

Welcome to Fibro Pulse! I’m Linda. We wanted to do a video about being newly diagnosed, so we posed a question to the community about they wished they had known when they were first diagnosed. So this video is the result of a community effort to try to get you off on the right foot on your fibro journey. Generally speaking, the responses I got were a lot less practical in nature about physical symptoms and the like. They were more about the emotional and mental and social toll that fibromyalgia takes on your entire life. I can’t say that I was surprised, because that’s been my experience too. The mental and emotional toll that fibromyalgia takes on you really stands out because the pain fluctuates, the symptoms change over time, but the things I remember are the times when I wanted to do something and I couldn’t because of the pain.

And those are the things that really stick with you. Every person with fibromyalgia has a very different diagnosis story. For me, I was very sick with a bad case of mono, and afterwards I had trouble getting better and the pain wasn’t going away. So my diagnosis was relatively quick and close to a specific incident that triggered it. I remember when I was diagnosed that it was very bittersweet. It felt great to know that there was a name for what I was experiencing and that other people were experiencing it too, but finding out that it was a condition that was somewhat mysterious and didn’t have a cure or some type of specific protocol or treatment that could make life easier and that you more had to figure it out on your own what worked for you was very daunting.

After all the tests and uncertainty and not feeling better, it was very helpful to have something to hold onto, and in having a name, I knew that there was a community and resources out there that I could have access to. One of the things that might not be readily apparent to people who don’t have a chronic condition, but really comes to the forefront once you’re dealing with it yourself is the mental health aspects of having a chronic condition that’s incurable. Knowing that you have a chronic condition that isn’t going to just get better can really start to weigh on your mind. When you know you’re going to get better, you say “Oh, I can get through this and move onto the next,” but when there’s no end in sight, that’s when the depression and anxiety and stress of just having the condition can really start to weigh you down. It came up in our discussion of this topic to remember to consider your mental health when it comes to chronic illness and fibromyalgia because of this.

Chronicwho brought up the point that mental health can sometimes fly under the radar when it comes to treating fibromyalgia and chronic pain and that it’s essential to think of them together and to treat the physical and mental symptoms for a holistic approach to wellness with fibromyalgia. Dealing with a chronic condition is difficult enough on its own, but many of us came to find out that people in our lives were not as understanding or accepting and supportive as we might’ve hoped. It can be very difficult for people to understand that there’s something different about you now, so with a chronic, invisible condition, they don’t see any change, you know, it’s not like something about you has changed that they can recognize every time they look at you.

The change is happening on the inside. So it can be confusing for people that you suddenly can’t do things that you used to do before and they sometimes even get angry that you’re not the person that they used to know. Many people in the fibromyalgia community report that friends and family members began to distance themselves from them after their diagnosis. For example, if you have to cancel plans with friends, they might start to think that you don’t like them and you’re just making excuses.

Or, perhaps, trying to convey what you’re experiencing – some people might see that as you being a downer and not want to be around someone who’s complaining or in pain all of the time. However, there are people who can understand what you’re experiencing, and that’s why it can really help to have fibro friends to show you support. Sara C. commented that in the beginning the doctors just gave her medications and blanket statements, and she didn’t realize that there was so much community support out there. Creating this community was the main inspiration behind us wanting to start this channel and website, so that we could bring people together to have more meaningful discussions about how fibromyalgia affects our entire lives. So now that you’ve been diagnosed, how do you re-calibrate your life to match your new circumstances? In life, we’re all just trying to do the best we can with the hand we’re dealt.

Amelia Rae commented that through it all, she’s still trying to become the best version of herself. At the moment, you might be feeling a bit down about your new diagnosis, but fortunately our minds are wired to adapt to new circumstances. Over time, people with chronic conditions learn to adjust to a new baseline, and one of the upsides is that having a lack of energy makes you really focus on the things that are most important to you.

So when we’re talking about being the best version of yourself, it’s working with what you have and focusing on what’s most important so that you can actualize those in your life. Are you recently diagnosed? If so, what’s going through your mind right now? If it’s been a while for you, what do you wish you had known when you were first diagnosed with fibro? How have you been able to connect with others with fibromyalgia, if at all? Please put your answers in the comments section below. Thanks for watching! Remember to subscribe, like & share Follow us on social media And then come join the community at fibropulse.com.

As found on Youtube