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A MyFibroTeam Member asked a question πŸ’­
Eastbourne, UK

I'm housebound now as I have mobility problems and hate going out in a wheelchair as I find it so painful. I used to crave to go out but now I'm really not bothered at all, infact it's just a massive hassle. My family are concerned, when I was well I was so out going but now I'm the complete opposite. Daylight even hurts my eyes now.. Anyone else with similar experiences?

March 8, 2016
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Answer Summary

Members shared deeply relatable experiences about becoming housebound due to fibromyalgia, lupus, and chronic pain, with many describing a... Read more

Members shared deeply relatable experiences about becoming housebound due to fibromyalgia, lupus, and chronic pain, with many describing a painful shift from being active, outdoorsy people to struggling even with simple tasks like stepping outside or watching their children's activities. Several members described practical challenges including severe light sensitivity requiring constant sunglasses and darkened homes, mobility issues requiring wheelchairs or walkers, crushing fatigue that makes getting dressed feel impossible, and the emotional toll of missing out on family moments and friendships while watching life continue without them on social media. A recurring theme was the isolation and misunderstanding from loved ones who don't grasp the illness, the guilt and depression from becoming the opposite of who they once were, and the critical importance of fighting the urge to withdraw completely, with gentle encouragement to find small ways to stay connected to people and the outside world even on the hardest days.

A MyFibroTeam Member

I found a picture from two years ago working in my garden. Just two years. Oh I am so different today! I could list all the things that I can't do but I don't wanna......I read everyone's stories and all I can think is what is this THING we are fighting? Over and over I hear how active someone has been and now nothing ! Why have our bodies betrayed us so? Did we push to hard when we were young? We're we not listening when our bodies said enough ?

March 9, 2016
A MyFibroTeam Member

I have started getting like this within the last 6 months or so. I also start feeling helpless and hopeless where I think no one really wants to be around me including my husband and then the mind starts racing making me feel like he's going to get to that point where he just leaves me because I can't do the things I use to do.especially lately with not wanting to go out of the house because I know I'm going to feel worse when I come back home from a simple task like dr appt or sitting outside watching my son play his baseball game. I'm missing so much of my kids life now I can't help to be depressed. But no one that doesn't have this just don't get it and they ask why are you depressed... I've become a prisoner in my own house or more like a hermit. I hate this life I now know will always be part of me.

March 8, 2016
A MyFibroTeam Member

i get out but i struggle with the will to do anything, sometimes eating is too much for me also,,, i get severly depressed because i feel like i am so worthless cause i cant do what i used to be able to do, it is very hard to want to get out of bed, i have even been told people think i am faking my illnesses, and that makes me angry because i try not to judge people so i dont want them judging me.

March 8, 2016
A MyFibroTeam Member

@A MyFibroTeam Member
Hello and greeting from a fellow 68% recluse. What you are dealing with is absolutely normal for ANY person with a serious medical/physical problem. Every person has to (and I mean that in the imperative sense) find a way to fight that desire to hide. Not every day us going to make that possible, but don't isolate yourself to much, I promise that it will become one of the most emotionally deveststing and psychologically damaging aspects of this lousy disease. And ypu wont even realize it until it's to late. The internet is great and im grateful for what it allows us to do. But it's not even close to "real thing", people....the sun.....camping (luxury camping of course, lol) but more than anything, as much as we hate ti admit it.....we truly do need people and so many other things in our lives. I heard an old saying from another country..Being the lone wolf seems fine, until that wolf dies alone and then its just another moment in time that no one is even aware of. I don't want that, you dont sound like you do either. So maybe....it might be good find your "pack". Gentle hugs and a soft howl (lol), I hope you find exactly who snd what you are needing.

March 14, 2016
A MyFibroTeam Member

I do get out but it's seldom and it's just for essential. I was actually going to post a question here myself I had two days where I felt OK and it's almost like it rebounds back 4 times worse. I have such pain in my feet and legs that I'm not sure if it's the fibro or what it could be I had a knee replacement and even let me hurt it's like I hurt all over my neck and my shoulders I don't know what to do. I see a fibro doctor on the 22nd but what am I supposed to do in the meantime? I can't just lay here and sleep I have animals I have some responsibilities and I can't sleep that long but when I'm awake and I'm moving I'm in so much pain I can't begin to describe it. I see no point in an ER visit expense it's hard enough to find a doctor that understands much less someone in the ER. I mean sometimes I just feel so helpless are helpless I just don't know what to do where to go and who to turn to

March 8, 2016

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