#fibro fog

[calmmyfears]

sleep deprived and too fatigued to think is my normal state of being, i have to accept.

[castellveinya]

“Stop saying you’re disabled. It’s so negative.”

Well, I’m not going to start saying, “I have ‘different abilities,’” like I’m a part of the X-Men. Thank you very much.

…But maybe I will. That isn’t too bad of an idea.

[bellatrixxmarierose]

Found on instagram 🙃

[myalgicencephalomyelitiscfstom]

[seasonallydefective]

If you want a visceral example of struggling with brain fog:

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.

The word I was looking for was relatable.

[gayvampyr]

this shouldn’t have to be said but if someone who struggles with cognitive issues due to things such as fibro fog, adhd etc has difficulty speaking or getting their point across, do not point it out. im talking about stuttering, misremembering words and definitions, using the wrong words in place of other ones, mixing up words or merging them together. you are allowed to help us find the right word but wait for us to ask first and give us a chance to find it ourselves. blurting out random words causes a lot more confusion for us and we often end up losing our train of thought.

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.

like the jokes might seem harmless or lighthearted but it hurts nonetheless because we are constantly in a struggle against our own brains. it seems like it should be such an obvious thing, not to tease or make fun of someone with cognitive issues, but so many people do it, including some of you who don’t think you do— particularly if you don’t think the reason behind it is a disability. it’s not the same as joking about your friend making a typo in the group chat. (actually sometimes it is). those are generally minor slip-ups that happen to everyone. for a lot of us, they’re constant. we’re almost always trying to get our brains to work with us rather than against us and pointing it out only makes it that much harder to concentrate on actually articulating our thoughts instead of focusing purely on avoiding misspeaking so you won’t point it out again. obviously this will vary from person to person, not everyone with these symptoms feels the same way i do, but i think it’s a good rule of thumb to just. not interrupt and/or draw unnecessary/unwanted attention to our speech problems. i don’t think it’s too much to ask.

[stars-and-branches]

god save me from the dumb shit i say when hit with brain fog

[lifewithchronicpain]

FDA Approves First New Fibromyalgia Drug in 15 Years — Pain News Network

By Pat Anson Fibromyalgia sufferers who have yearned for new treatments finally have one. Tonix Pharmaceuticals says the Food and Drug Admi

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)

If this works it would be a game changer for me, I am always tired.