ChronicPain — Bruno's ramblings

📝 I had forgotten how bad it gets

Wed, 08 Apr 2026 14:10:24 +0000

For over a year, with small periods of inactivity here and there, I had some paid work, writing and reviewing other people's writings, mostly the latter. This was the only thing I found I could do at my own pace, with no fixed schedule, whenever my lack of health allowed it. Although I didn't make a ton of money monthly, it allowed me to pay my medication, basic expenses, and the weed or weed derivative I used to keep the pain low enough so I could keep working for more than an hour a day. And, for a while, I had enough pain relief that I could almost feel a glimpse of normalcy, as long as I reduced my physical effort to a minimum.

At some point, this made me think the good times would keep up, and I was no longer feeling like dead weight to everyone around me. Reality is a bitch, though, and doesn't care about anyone. Eventually, the work began to dry up. Every month, the amount of work decreased to the point I am today, with barely any paid work in the last three months.

We have a saying here: “no money, no vices”. I had gotten used to a manageable level of pain (keep in mind that what I consider manageable is still a crazy amount of pain), and I had forgotten how bad it gets. I didn't forget this shit is awful, but I had forgotten exactly how painful it can get.

Let me give you a fresh example: last Monday, at dinner, my fingers were hurting so much I could barely cut my own food.

Now, I'm back to literally burning my back just to get a small relief. I'm not joking or exaggerating. Almost a week later, I still have blisters from putting a hot water bag directly on my back a few times per day. If I don't brute force the pain signals with other stuff, like the burning feeling, I can't get pain relief. This is what I suspect happens with the weed: the increase in serotonin production forces the brain to allocate more resources to it, leaving less for the pain signals.

I'm currently trying to find another work option, but it's not an easy thing to do when you have these constraints.

#ChronicPain #Fibromyalgia #Ramblings #Pain

📝 As gutwrenching as relatable

Fri, 26 Sep 2025 12:49:13 +0000

This blog post is one of the most gutwrenching and relatable things – IMHO, at least for me – I've read in the last half-decade. The “You'll be ok. We're here for you.” that soon changes to “You're not ok yet? Get over that, don't be a wuss. Bye!” is all too relatable for me.

Most of the people in my life just stopped reaching out, and I'm left to do it if I want to talk to them. And if they won't do it, I sure as hell won't because I have other stuff to worry about, like having the energy to cook. It may not even be a small task for you, but for someone with chronic pain, IT IS a big endeavour.

#ChronicPain #Fibromyalgia #Health

📝 Struggles of acceptance

Tue, 08 Jul 2025 01:15:06 +0000

I stumbled upon this post on r/fibromyalgia, titled “How long did it take you to accept it?”. As I'm writing this, I'm still processing both the post and the comments; at the same time, feeling relieved that it's a lot more common to struggle to accept this fucking syndrome.

Knowing I'm not one of the few who struggle with accepting this and all the limitations it imposes is like taking weight off my chest. And to be honest, I don't think I'll ever fully accept this. Why would I? To me, that's like giving up, conceding defeat. Yes, I still cling to the hope that either a cure will be found or a medication will be developed that actually stops the pain. Or that the pain might one day stop by itself, just like it started.

Accepting it would mean I've given up on hope.

Of course, this doesn't mean I haven't adapted. I've developed strategies to deal with the pain level I'm feeling as I perform whatever task I'm doing and how it changes as I execute it.

A good example of this is cooking. Even if I'm just cooking a simple stew, there are days that I have to start cooking it 4 to 6 hours before the usual time and do it in small steps, with long periods of rest in between, because standing up for 10 minutes feels like torture. Think: “Getting the pan out and the ingredients. Rest. Chop some ingredients. Rest. Chop more ingredients. Rest.”

This may not make sense to you. That's OK. It probably wouldn't make sense to me either if I didn't live with nonstop pain.

#Fibromyalgia #ChronicPain

📝 I may be a failed human torch

Tue, 17 Jun 2025 12:58:40 +0000

One of the symptoms I hate the most in fibromyalgia is how it messes with my internal temperature perception. Whatever the season we're in, if I'm in pain, I'm sweating. If I do something that my body interprets as physical effort, I transform into a human sweat waterfall. Sometimes, things get even worse, and I feel so hot that I have trouble breathing.

Let me use today as an example. When I woke up, I brushed my teeth and then cleaned Chico's toilet. In a matter of seconds, my t-shirt was soaked in sweat, and my eyes were burning from the perspiration dripping from my forehead and into my eyes.

But it gets worse. Sometimes, I feel so hot that I have trouble breathing. And today was another example of that.

All of this because I woke up, got out of bed, brushed my teeth, and cleaned my cat's toilet. Just this.

There's an upside to this, though [I'm trying to look on the bright side of this, ok...]. Occasionally, before I start feeling the pain increasing, I start feeling crazy hot and sweating. This allows me to at least have a few moments to prepare myself for the upcoming pain increase. Those few moments can go from a few seconds to a few minutes, but never more than that, unfortunately.

Better than nothing, though 🤷.

#ChronicPain #Fibromyalgia #Pain

📝 My sleep quality is getting poorer by the day

Tue, 04 Jun 2024 17:31:34 +0000

I don't know what the fuck is going on, but my sleep quality, which was already bad, has decreased dramatically over the last weeks. I can sleep, but I have a very light sleep and wake up much more tired than I used to. Somedays, I feel so exhausted and dizzy that it takes me over an hour to get out of bed, and even then, I stumble on everything during the first hour or two after getting up. I can't even go down the stairs without grabbing the railing to avoid falling.

#Fibromyalgia #Sleep #ChronicPain

📝 Research on fibromyalgia seems to have stalled

Thu, 18 Apr 2024 01:21:01 +0000

I have fibromyalgia, a hell that began almost four years ago. During the first two years, more or less, I read a lot of studies. Still, none got me genuinely excited. That is until a team in Sweden decided to see if the syndrome has an autoimmune origin. The first part of their investigation points to that, and there was subsequent Research from another team that also showed solid evidence of this hypothesis being correct. The second part of the Swede's is still pending.

As far as I know, that's it for Research. A team or even two might be doing work around fibromyalgia, but publishing it will probably take a while. Even after that, assuming the identification of the syndrome's origin and the development of an effective treatment, it will take even more time to adjust the current shitty therapies available that fail miserably at keeping the pain at bay or at least at non-hellish levels.

Every day, the hope of getting access to an effective treatment for fibromyalgia during my lifetime fades away, little by little.

#Health #Fibromyalgia #ChronicPain #Research

📝 When the brain fuse goes kaput - or how it can be hard to express yourself

Wed, 10 Jan 2024 18:00:00 +0000

I was watching Shiza's Twitch stream around an hour ago, and at some point, burnout came up in the conversation. This made me think about what I've been experiencing, and it's eerily similar to burnout, although it's not the same thing, and there's more to it.

You may know this as brain fog. Covid brought this issue to the spotlight. The difficulties concentrating and lack of mental energy are severe issues in chronic pain (and we now know that it also occurs with COVID-19), and they're hard to deal with. But, at least to me, the worst part of brain fog is the cognitive impairment.

Cognitive impairment is a broad term. Wikipedia has a great page on it if you want to check it out. One of the areas that has impacted me is how I express myself. I've lost count of the times I wanted to say one thing, my brain couldn't figure out the best way to do it, either because I couldn't recall some of the words I wanted or I couldn't do the proper association of ideas and concepts to express myself. I always went the kind of similar to what I want to say route because it felt identical then.

Of course, if your brain is borking itself, this feeling of similarity can be misleading. And, oh boy, it is! More times than I would like to admit.

Just before watching Shiza's stream, I had a quick online chat with someone. I wanted to reply with something, but I couldn't get my ideas sorted to express myself as I intended, so I chose the kind of similar route. At the time, I thought I had replied in a way comparable to what I intended.

During her stream, I recalled this quick convo and checked what I had written. Lo and behold, I didn't pass the message as intended and even sounded a bit like an idiot. I know I'm an idiot (we all are in someone's eyes, one way or another), but I'm not that kind of idiot.

IRL, this is even worse. Online, sometimes I wait a while before replying so I can garner the mental energy to do so. I don't have this luxury in person, and it can backfire. As you can imagine, this creates a lot of stress for me. Even if I say that I didn't express myself adequately and try to explain what I intended to speak to the best of my ability, I always end up mad at myself.

No wonder I'm always stressed, and some medical exams picked up an abnormal heart rate... My brain is like a single-core, single-threaded, 400MHz CPU with 128Mb of RAM, trying to compile the latest stable Firefox.

PS: You should take a look at Shizamura's work (she's on Mastodon) and even commission a drawing. Just check out the drawing she made of my baby boy, Chico. Gorgeous!