u/Alps_Useful

I made a couple of posts recently about how bad things have got, and how useless the drs are. After speaking to a bunch of people here, and a couple of specialists at hospital, I did manage to get my head more or less in the game with how to approach things. Getting to the bottom of what's going on, getting the right people and treatment eetc.

But, aside from the mental health team. How do we go about the extreme isolation and loneliness here? When I spend maybe 70-80% of my time bed bound.

My wife is usually looking after our baby who is 22 months I think. Unsure what age they are infant or baby. I do sometimes go downstairs and sit with them for a bit, but recently it's been brutal and I start shaking with pain and have to leave.

One route is ofc to make the living room more comfortable somehow, but it's the heat, light, sound, pain etc. Feels like a lot would need adjusting just so I can kinda manage. And others would suffer so I could exist. What do we do in general when we are so isolated from the world? Making friends is tough, and what would we even talk about? My life is pain and torture and even the smallest normalcy is punished later. I can't go do a social thing with them, my hobbies are on pause (Warhammer models, arpg gaming, modding games, pixel art, Pokémon card collection me and wife share).

Like I'm hitting a mental wall trying to figure out how to even begin socialising or talking or anything. I have no life to speak of. My brain fog makes me stupid as hell at times and not able to answer basic stuff sometimes. So how do I connect with anyone. I have interests, but I'm unable to act on them, all my Warhammer is packed away, so are the Pokémon folders. I try and play diablo 4 sometimes, but I'm slow and just kinda walk around randomly. I don't do endgame things or really much of anything. I get maybe an hour or 2 of pixel art a fortnite currently, and it's mostly just remaking some of my older stuff a bit better. Modding games had been paused since November.

This is long winded and whiney, I don't know how to socialise or not feel trapped here when I can't do much and barely leave my room let alone the house.

This is partly a rant, and partly my honest feelings.

In the UK right now, I'm under pain management and drs.

I am constantly told they do not prescribe any medications, they will not give anything for pain, anything for the electric shock like feelings (feel like I'm being tasered and literally tear muscles due to it), nothing for the feeling of fire ants under my skin that prevent me sleeping for around 40 hours. I sleep once every 2 days for 3-6 hours it's so bad.

The gps say it's fibromyalgia and send me home, the pain clinic says talk to the GP and they can't do anything. They say they talk to their med team and they suggest nothing. I'm honestly unsure what purpose this team even serves at this point. Is it just to tell me I'm screwed for life and it will never get easier? Is it to block any communication about any form of treatment options?

I'm not being funny, but it's 2026 and we are leaving people like me in agony with pain easily on 8+ and spasms or whatever we are gonna call them (no one will tell me what to call them), that literally dislocate my right shoulder tear muscles in my back, and cause me agony on a scale I black out due to.

But there's nothing? No research in the past 30 years has made any progress at all, there's a handful of medications that have a low chance of success and I'm told I now need to just deal with it.

And yes I have been told exactly them words. And asked what im doing about it to change my life. The life where im literally blacking out in pain and having my body lose control and feel like I'm being tasered. Where I get so exhausted, I can't even get out of bed on a bad day. Not due to laziness, but because it feels like COVID fatigue, that I'm completely incapable of overriding in any way. The gps ask me what I want them to do? Like im suppose to know the answers, I can barely think straight. I'm spending half my time convincing myself not to end it because this is my life. Pain management literally saying the same thing, "what do you expect us to do?"

Am I crazy? Your job maybe, help me deal with pain that shuts my brain down, help me with anything at all, maybe help me with some long term way to cope. Some way to calm the spasms when my wife is holding me in bed so I don't damage my body more.

I'm not sure the purpose of the GPS or pain management at this point. It's filtering me into not getting anything. The migraines are under control, my suicidal thoughts come and go, without duloxetine id already have done it tbh. I'm struggling to believe in 2026 this is what we are calling progress. Talking about green zones and living hour by hour. While my body rips itself apart and I collapse in exhaustion. My memory and cognition are shot, my intelligence is out the window. I can barely structure a coherent though half the time, and I'm expected in 5 minutes Infront of a GP to spell out exactly what I want and need from them. Like they are not the medical team here.

I'm not against mental health stuff, I literally studied psychology throughout college and university. It was my career path. I'm well aware of mental health and positivity. But there's a limit where it feels like I'm being lied to and told thinking positive thoughts is some magic weapon Vs this. I see others with fibromyalgia that I've met irl and I'm not even on the same spectrum. My days consist of hoping I can get out of bed to see my baby for a few hours. And stepping outside is a complete shock to my system. I'm sensitive to light and sound, it literally hurts me. I use ear protection and reactors. And I often find myself so overwhelmed I just can't do it. Pure sensory overload. I managed maybe an hour a month shopping.

If I go to say the park or somewhere with my baby and wife for more than 2 hours, I'm bed bound for literal days. As in I'm unable to move, I'm practically paralysed. Then I'm told I'm pushing too hard? I'm barely existing. If I pushed any less I'd stay in bed all the time.

Either I'm missing the point here, or modern medical staff have no clue at all and are just putting all unknowns into fibromyalgia and leaving us to suffer. It's actually shocking to me.

Hi, I have spent the last 12 years dealing with what drs think is fibromyalgia. I'm not sure it is, but they also refuse to look into any other options no matter how hard I try.

I'm at the point where I either give up, or I assume this is my life. What can I do practically to make my life and house suitable, under the assumption that I will always be in severe pain, have memory and cognitive issues, and relapse all the time.

As it stands right now, I live with my wife, our baby and her mum. I spend most of my time upstairs since the living room is uncomfortable for me. I can manage a few hours a day with the baby. Every so often I relapse and am useless for around 7-10 days for no discernable reason. Ranging from extreme spasms, nerves firing off randomly, pain that is around 8+ and fatigue. When this happens, I can't even get out of bed most of the time. I sleep around 3 hours every 30-40.

I have never found a trigger, and am at a complete loss how to even prevent it. So I'm at the point that we just have to assume it will happen rather than trying to prevent it.

What can I do to make looking after the baby more manageable, he will soon be an infant/toddler and is running around. What can I do to spend more time with family, and try and do more without triggering a flare up. I'm unable to spend more than an hour outside every few days or I spend the next couple in bed in agony.

Drs have all but abandoned me at this point. My migraines are controlled luckily. They were around 4 ever week or two. Taking ametriptaline and sumatriptan. I have duloxetine to stop me killing myself and it works for that purpose but not for the pain or spasms. They keep saying it's a pain medication, I'm not seeing it at all. I am on no pain meds or anything else that affects the nerves in any way. I have a nerve issue in my groin that affects my bladder and currently under urology for that, this is technically a different issue if we assume fibromyalgia is my main condition. The nerve is causing my muscles to lock and prevent me going toilet basically. Trying physio but tbh it's too painful and we are investigating ways of me managing or else we try Botox.

I am sensitive to light and use glasses that turn dark outside. I am sensitive to sound and use earbuds when out or in living room. I am sensitive to heat and wear shorts mostly and shoes that allows air to flow.

I have twitches that make me throw and drop things, and stumble. My main issues are the major spasms which bend my back the wrong way suddenly and dislocated my right arm. I tear muscles when these occur, mostly at nights. I have pins and needles and the feeling of fire ants under my skin in my groin and legs. I have extreme memory issues, difficulty putting names to faces, or words to objects and struggle with cognitive stuff overall. I will get lost outside on my own as I cannot do directions or figure out a to b.

The reason im making the post is to see if anyone has any practical help outside of lifestyle nonsense that pain management keep pushing. It has not worked at all, and they appear to not want to put me on anything medication wise. I need to feel like life is worth living with my family, and make it as comfortable as possible to exist. I'm not sure how else to word it. The sofa is painful and I don't last long, the baby is loud and I love him, but he's a lot at this age (around 22 months). I try and play my docked steam deck at night to relax but it's painful and I often give up due to the pain. I can't do my hobbies which were pixel art and Warhammer.

My wife spends a lot of time with the baby, and I spend a lot of time up stairs. There are weeks where I can spend around 2-3 hours with him in the morning while she has a lie in. But it's inconsistent sadly. There's also days every so often I go town and shopping (around once a month mostly), but this causes extreme pain the following day.

Sorry this is long, and thanks for any advice.