BY: Nicole Eloise Brooks
Via- The Mighty
Today, we are going to talk about some of the fibromyalgia things we don’t tend to talk about too often. People who don’t struggle with it often just think that it’s pain and fatigue – and that’s far from the truth. Whether you have fibromyalgia or not and are just wanting to learn more, grab a drink and a snack, and get ready to talk about the difficult stuff.
1. Fibro Fog
“Fibro fog” is a term that you may have heard before, even if you don’t have fibromyalgia. This is the term used to describe the cognitive difficulties we struggle with. We can have trouble learning and remembering new things (or remembering things altogether), problems with attention and concentration and slowed and confused speech. Personally, I experience all of these pretty often. The most common thing that I struggle with is my speech, as I often forget the words that I want to say and then get very frustrated with myself. Fibro fog can make it very difficult to live any kind of functioning life, whether you work in a normal job or not. I have found that it can even affect my blogging from time to time. If you know someone with fibromyalgia, please be patient with them and remember that we are trying our best.
2. Disturbed Sleeping
This is one that really messes me up. By disturbed sleeping, I don’t just mean waking up on and off throughout the night – I mean insomnia, night terrors and sleep paralysis too. I started struggling with sleep paralysis just before I moved in with my emotionally abusive ex, and there were times whilst I was living with him where I would have episodes every night. The most common night terror/sleep paralysis episode that people have is a shadowy figure in the corner of your room, and that’s how mine started. However, when I was living with him I often had one where he was trying to strangle me to death in our bed. Now, I have them about the childhood trauma I suffered. Disturbed sleeping literally has the ability to ruin your life, believe it or not, as who can really get anything done when you’re not getting proper sleep? One or two episodes of sleep paralysis throughout your life is completely normal, but if you’re struggling with these issues regularly then please talk to a medical professional. Don’t struggle in silence.
3. Depression and Anxiety
It’s not really that surprising that a lot of people who have fibromyalgia have depression is it? We spend years trying to get an actual diagnosis, being told that we have “growing pains” when we are teenagers, being asked if we are sure that it’s not just “women’s problems.” Society is made for abled people, and we often have to make adjustments in order to get through out daily life. Many of us have to give up our jobs when we are very young, and if you don’t have interests that you can do at home, it can be a pretty miserable existence.
You may think that my advice regarding this will be “reach out,” but it isn’t. I believe the term “reaching out” is a joke at times. A lot of those who are supposed to care about us can’t be bothered staying in our lives if we aren’t able to do the legwork (pun intended). My advice is to spend time working out what you are interested in and passionate about, that you are physically able to do. Mine are writing, makeup and being an advocate for mental health and chronic illness, and spending time with my Yogi. These passions will be what keeps you going some days. Trust me.
4. Medication shaming
Why do people think it’s OK to tell people that they don’t need medication, or that the medication they are taking is “dangerous?” I’ve seen so much of this, not just aimed at me. Yes, I am well aware that opioids are dangerous, but I’ll tell you what would be even more so – me, without pain relief. Without pain relief, I think I’d just give up on life. It’s bad enough that it’s so difficult to obtain strong pain medication, without individuals who think that they’re doctors because they have access to the internet shaming us for it. Our medication, our business. I’m leaving that there before I get mad.
5. Extremely Painful Periods
Did you know that fibromyalgia can cause incredibly, abnormally painful periods? Even though I have had this problem since I first started mine, I didn’t know until recently, and I’ll tell you the reason why. Women are made to feel that really painful periods are normal, when they’re not. It can be a sign of some very serious health problems, for example, endometriosis. Some other reasons that mine were so bad, were that I had so much nerve damage in my stomach, and because my womb was actually in the wrong place! It’s so wrong that we are told that this is normal, and it really needs to change soon.
6. Doctors and Other Medical Professionals Still Don’t Understand It
This is a really big one. There has been a lot of stigma surrounding fibromyalgia, and not too long ago some doctors didn’t even recognize it as real illness. To someone who experiences the symptoms everyday, this is baffling. Thankfully, I have a pretty decent doctor who does get it, but even then, it’s not to the full extent.
Recently, it was suggested to me that my pain was caused by my borderline personality disorder. When I saw the psychiatric nurse, I asked her about this, and she reassured me it wasn’t the case. It is so unfair that we are made to believe that our pain is in our head. You wouldn’t say that to someone with a visible illness, or someone who has cancer, so why do people think that it is OK to treat people with a lifelong, debilitating illness in this way? It’s unbelievable!
7. There Is No Cure, and Not Much That Really Helps
I often find that people who don’t have fibromyalgia find this a difficult conversation to have. To me, there is no sense in beating around the bush. There is no cure. Sure, there are things that may “help” with the symptoms, but not really. The pain is still going to be there. Personally, I find that facing up to reality helps me come to terms with things. Some may say I am a pessimist, but I think I am a realist. One day somebody may come up with a cure, but I highly doubt it will be in my life. I think that this is a conversation that needs to be had more often, but I obviously cannot speak for everyone else who has fibromyalgia.