#fibro fog

This is just for me. This is a personal post. This is about what ruins MY life the most.

I'm diagnosed with seizures and OCD (that I don't like talking about but it's relevant here) and FND and hypermobility and still every day, the fibro is the worst thing.

I stopped going to a lot of my classes in college because of fibromyalgia, I had a really busy Monday-Wednesday and so I would be forced to rest of Thursdays and often Fridays too. I missed critical information from my classes and wasn't able to catch up because I did not have the time or energy to do double the amount of work of everyone else, especially because the normal amount of work was making me so sick. The chronic fatigue took my alevels (16-18 education) from my workload AAB to my exam results ACC.

Fibromyalgia is known for widespread chronic pain. I have been in pain since I was 10 years old and my baby brother died, this event is also what triggered my mother's fibromyalgia. I have severe pain in my back, legs and shoulders. I have moderate pain everywhere else. I have very sharp pains in my chest and often my abdomen that stay for about 5 minutes before calming down. It is 10/10 pain. It reduces me to a crying curled up mess on the floor. No matter where I am.

I am tired all of the time. I do not sleep through the night, I wake up multiple times every single night and I am lucky to get 3 hours uninterrupted sleep. I take naps throughout the day, long ones, because I am so fucking exhausted all the time.

I have a sensitive digestive tract. I am severely lactose intolerant and any amount of deviation from my normal diet can cause pain and inflammation and bowel problems.

And fibromyalgia comes with depression and anxiety. I mean it makes sense. Of course I'm fucking depressed, I cannot have offline friends, I cannot work, I struggle to even have hobbies and keep my house together.

The seizures are bad, the gait problems are bad, the constant compulsions are stressful and shit, but nothing compares to how fucking infuriatingly crippling fibromyalgia is for me.

Yesterday I spent ages googling “word for when you really empathize with someone” “polite way to say that person is my spirit animal” “word for when you feel like you’re on the same wavelength” and was getting definitely not the word I was desperately trying to remember. I could literally feel the shape of it but couldn’t recall what it was. I started to think maybe English didn’t have that word.

And today I realized

Relatable.

also, in a similar vein, we may pause to think about what we’re going to say next, and it’s important that you not interrupt. for me, my train of thought is already on the verge of derailing. if i stop talking mid-sentence, give me a second to find my words and sort out my jumbled mess of a brain. don’t start speaking like we’ve finished our sentence and please don’t just abandon the conversation. it’s very frustrating, especially when you make jokes or tease us for forgetting words or misspeaking and it makes it much harder for us to get to our point. and tbh it’s embarrassing and it sucks because our brains aren’t doing what we want or need them to do and we don’t need a reminder every time it happens.

Fibromyalgia sufferers who have long yearned for new treatments finally have one. Tonix Pharmaceuticals says the Food and Drug Administration has approved Tonmya for the treatment of fibromyalgia in adults -- the first new FDA-approved therapy for fibromyalgia in over 15 years.

Fibromyalgia is a frustrating and complex chronic pain condition that affects about 10 million Americans, most of them women. It causes an array of symptoms, such as widespread body aches, fatigue, insomnia, mood disorders and brain fog.

Until now, the FDA has approved only three medications for fibromyalgia -- duloxetine (Cymbalta), pregabalin (Lyrica), and milnacipran (Savella). Many patients consider the drugs ineffective or have too many side effects.

“The FDA approval of Tonmya as a first-line treatment for fibromyalgia represents a landmark advancement for the millions of people in the U.S. suffering from the debilitating pain this condition causes,” Seth Lederman, MD, CEO of Tonix, said in a press release. “At Tonix, we recognized the transformative potential of pursuing a new approach with Tonmya for fibromyalgia, a chronic overlapping pain condition, that has gone without innovation for many years.”

Tonmya is more of a sleep aid than an analgesic. The tablet is a new formulation of an old drug: cyclobenzaprine hydrochloride, a muscle relaxant that is chemically similar to tricyclic antidepressants. It’s meant to be taken before bedtime sublingually (under the tongue) for rapid absorption into the bloodstream.

Tonix has long believed that improving sleep quality, specifically restorative sleep, is the key to reducing fibromyalgia symptoms. Poor sleep not only worsens pain, but causes anxiety and depression, which are common features of fibromyalgia. Pain, poor sleep, and mood disorders become a vicious cycle when fibromyalgia is poorly treated. (Read more at link)