Forums » Smalltalk » AMA: A Life with Fibromyalgia

Hello there!

Honestly whenever I first saw this, I didn’t know what to put down. I thought I had to do something super cool or have some cool experience to make it something worthy of being mentioned—but then I realized that having Fibromyalgia, while it isn’t cool, is something that affects my day to day life that isn’t known by a lot of people.

Or at least, I’ve not known a lot of people who know about it. So I thought that that it would be a good opportunity to help inform and educate people on my chronic illness. Open to any and all questions, don’t be afraid to ask. I suppose I can start it off by saying that it’s a neurological condition and is sometimes linked to Lupus as well. A lot of people with Lupus also have fibromyalgia, which studies have shown. However the two are also very different!

I’m unsure of what to put down in this starting message even still. Fibromyalgia has a lot of information and I want people willing to ask questions since I don’t want to just spam a whole ton info onto you guys. So go ahead and ask questions if you want to!

Do you know if you inherited your Fibro from someoe specific in your family, or were you an odd unicorn who appeared among them? How long did it take to get your diagnosis?

I was the first case in my family, but recently my mother has been talking to her doctor about her possibly having it as well. However Fibromyalgia is hereditary!

I got diagnosed whenever I was 12 years old. I went to the hospital every week and was diagnosed with a level 5 scaling—which meant I am more severe than a lot of cases, however it’s not too bad that I’m in a wheelchair. It took a while to get the diagnosis whenever I was going to the hospital. It’s very hard to diagnose and a lot of doctors (sadly) tend to think it’s not real and that patients are always faking. They thought I had arthritis at first but a lot of scans, blood tests and more proved I didn’t. So I have been diagnosed for 6-7 years now.

Hey, kloomsy!

So I've heard the name Fibromyalgia before, but I'm not sure what it actually is. Could you describe what it is for people who aren't familiar with it? Such as myself 😅

Why hello there VeraVe!

Fibromyalgia is a neurological condition, a chronic illness that is brought up by psychological stress or physical trauma of some kind. It can even be both. What fibromyalgia is, from what doctors have told me, is that your brain changes how you perceive pain and non pain signals. It causes a lot of heightened sensitivity to pain. You can have random pain with no wounds (the nerves) and if you do get wounds of some kind, even a bruise, it can be more painful that what someone without fibromyalgia would experience.

Example: I had braces whenever I was a kid. I was always in a lot of pain because my pain sensitivity to braces was a lot higher than other kids who had braces.

What causes fibromyalgia is highly debated but a lot of times it is tied into psychological stress or a physical trauma. It’s different for everyone and a lot of doctors are very skeptical when diagnosing and even believing in fibromyalgia. It’s different for everyone. For me, my fibromyalgia was caused after a traumatic incident whenever I was a kid, but I wasn’t physically hurt in this incident. Fibromyalgia can appear to be a lot of different things so while it is a common thing, it’s very very hard to diagnose.

Oh no, that's horrible!
As a psychology student, I do find this very fascinating, however.

There are some forms of therapy that have shown to be potentially able to rewire parts of the brain- such as neurofeedback therapy. It makes me wonder if it would be possible to develop a type of therapy that would be able to rewire the parts of the brain to perceive pain differently.

Thanks for answering! I've got some extra-curricular research to do haha.

Do you have any advice on pain management? To be able to still somewhat do things you want?

I'm currently waiting on a potential diagnosis myself!

Hello!

Hmm.. pain management is different for anyone with fibromyalgia because pain scales are different. For someone who might not have constant pain, how they go around dealing with their pain might be different than me, who does have constant pain. However being active helps for me, even if it’s painful. I did acupuncture, pain therapy, and physical therapy for years. Pain medication helps for pain as well (not over the counter like Tylenol or ibuprofen, at least for me. I had to get prescribed special medicine)

Whenever it comes down to doing things I want or basic tasks, it depends on the day. Some days I can’t get up and walk because I’m hurting too bad. Some people may have an easier time doing things if their pain isn’t constant, and in some cases, people with fibromyalgia can also be in wheelchairs and have a harder time than me. Working with pain helps, but you can only go so far. It honestly depends on the day.

No need to thank me! I love sharing and informing people. A lot of people, at least around me, seem to not know what it was so—so I thought sharing it would be interesting to some of y’all!

I didn’t know that was a thing! I wonder about that too. I hope you have a fun time researching, lol. You’re making me want to research about it now.