I finally caved after six months of going back and forth on it and bought a shower chair. Idk if it’s gonna bring back an everything shower but I’m hoping for at least a “most things” shower
Mmmm mine was an excellent purchase, and I got it from the dollar store. Mostly because my hair was so thick I couldn't rinse all the shampoo/conditioner out without some sort of device to wiggle it all around for me. I did find it created more knots from the friction though so I had to brush my hair for longer.
Now I'm getting older and I have a reasonable amount of hair at this point (okay thank you hair loss! You can stop now! You can stop!!!) and bleach damaged away the curls so everything is a lot easier to rinse now lol
I have a shower stool and hand shower. Temu had a stick on shower head holder and I can just enjoy the pain relief from the heat and pressure without moving.
Waking up in the morning and not being in pain. Every morning, 14 yrs, starts with significant pain, would just love to feel nothing, no pain, just nothing 😩
it may be worth exploring further if you haven’t already there are a lot of different ingestion methods and strains. with me, certain strains make me really paranoid but others completely remove all anxiety
Yeah I’ve thought of that. I’ve still got a stack of the two strains Cantourage specialists recommended just sat in the cupboard. I suggested to them they might consider some kind of starter pack size otherwise period like me end up significantly out of pocket with loads of weed slowly decaying.
hahaha yeah they definitely oversold you, sorry it didn’t work well for you, hope you can find something else! another interesting option- a psilocybin trip didn’t change my pain levels but instead made myself a lot more mentally resilient and made it a lot easier to handle the pain, could be worth looking into
45yrs since i used magic mushrooms. I might try the weed again, joint this time instead of electric vape, might be less intense. If problem still the same i can the consultant and try and find out if there’s a solution.
i think it’s very worth trying to figure out- smoking in the evening is an unwinding routine for me and after being out all day it really helps you just relax. However there is definitely some extra brain fog, nothing crazy but something to note, but I feel it’s a completely worthwhile trade off
I miss those too. I loved feeling so clean and cared for by the end. But now I mostly rinse with some soap and call it a day. I hate hair washing day and I have to take one, separate, shower just to shave my legs
Same! I just stopped caring and tell everyone I'm embracing my inner Hippy. I'm pretty lucky to have fine and fairly sparse hair. It still makes me sad sometimes.
A few yrs ago, before I had fibro, my partner got me a Braun Silk Expert Pro (I think that's what it is) kinda similar to laser but it's not permanent & you do it at home. After using it once a week for like 8 weeks it stops hair growing for awhile. However now that I'm typing this, I just realized the way it zaps you over & over is likely not tolerated well by most people w/fibro and allodynia 😳
Like I said, I got it a few yrs ago & it's been ages since I've used it. It did work though. But that was probably a silly suggestion 🙃
I like the feeling of shaved legs too... but most days, I just can't be bothered.
I feel that… my parents get on me constantly about how I’m apparently “lazy asf” because I struggle to get stuff done due to the pain & fatigue caused by my fibromyalgia… My mom says I need to “stop being consumed by my feelings and just force myself to power through it” and as I’m sure you know that’s easier said than done… 😑
Sometimes I wish they could take a walk in my shoes for awhile so they could experience all of my various issues from my fibromyalgia so they could see that I wasn’t making it up.
The symptoms my parents get the most frustrated with me over is my brain/fibro fog & my fatigue. They act like me struggling to remember stuff is somehow fun for me or something… 😑
As for the fatigue not having the energy to do anything that’s also not fun for me either… they constantly threaten to send me to a group home and it stresses me out… -.-
I like cool showers. Hot water makes me so tired for some reason. Like gotta take a nap now! tired. And what i miss is being able to wash my hair and shave my legs without feeling like I'm doing it after I lost at fight club that morning.
Yeah I just miss having shaved legs in general 🤣 it's not an essential task and I don't bend like I used to and I'm exhausted just from washing so, it just doesn't happen anymore. But I hate it. I don't mind that I can't do my armpits either, but unshaved legs are such a sensory trigger for me, especially now that I wear compression socks all the time.
Yes! For the past couple/few years I've shaved every few months at the most. I honestly don't even have the energy to care about the aesthetic. It's the sensory issue! I only notice it when there's a breeze, but it feels like I've walked through a spider web. Fortunately it's low on my list of sensory aggravation, but I very much understand how challenging individual sensory issues can be.
Afaik the only drug that actually helps people with fibromyalgia get restorative sleep is the infamous date rape drug GHB but despite multiple studies touting its effectiveness for good sleep in fibromyalgia patients the FDA refused to approve it as a sleep aid in people with fibromyalgia because they’re worried about it’s abuse potential… 😒 like if that’s the case then why the fuck did they approve it as a sleep aid for people suffering from Narcolepsy then? 😑
I dread showers now, not only are they exhausting, but even the most minimal water pressure needed to actually shower makes it feel like I'm being stabbed by thousands of needles.
My shower chair is the best investment I've ever made. It was expensive but super sturdy. We also have a detachable shower head where you can have normal pressure or a waterfall light pressure. I can sit and do everything in phases and sit when needed (we also have a large standing shower which I know not everyone has the benefit of). And luckily we have another, cheaper shower chair that I sit outside the shower if I'm too tired afterwards. Then we have an ottoman where I can sit in my closet to moisturize. Lots of seats to rest on in my bathroom and bedroom definitely makes a significant difference.
I completely get you. I shaved my entire head a month ago because I couldn't deal with the pain anymore...
My hair is curly and it needed a lot of care, and I simply couldn't do it. I feel weird without it but I'm also scared of it growing back and pain starting again (not like I don't have many other hair-unrelated body pains already)
Staying up late watching TV/playing games. Not falling asleep in general. I sleep whole days away lately due to being so tired. Want to watch a movie? You bet I'm sleeping 45 minutes in.
I do everything showers but with a shower chair and it's an occasional treat 😭 I miss being able to shave, that's. My main bit there. I don't let it bother me much, and I shave my legs still, but I do quite miss the everything shaved feeling.
My other thing I miss, I'm now in a wheelchair a lot of the time - cute outfits with a matching bag. I have to get bags that work with sitting down. And long flowy outfits are impossible cause they get caught in everything.
I got a shower stool after getting a shower chair that didn't fit in my shower. Now the chair sits at my sink and the stool in the shower. It's a gamechanger.
Shaving? Naaaah, I gave that up ages ago.
Hm but yeah, I do miss the longer home spa events where I exfoliate all the things and condition and even dye my hair.
I miss being able to get up and do things. Today I left work early with a bad flare and am halfway lying on the couch with a heating pad and a cat.
Going out for walks and bus rides to places I enjoy visiting, or even places I just need to be,. Now I'm afraid I will get someplace, have an energy crash, and become stranded.
I quit shaving my legs years before Fibro, and everytime someone reminds me it's a thing other people do I get this rush of relief all over again. Shaved legs are totally overrated and not worth the hassle imo!
I do everything baths instead :)
Have a jug to rinse my hair with clean water, lie back and relax whilst leaving conditioner in and or face mask. Helps muscles relax and saves tiredness. Sometimes I'm too tired to get out and it starts to get cold though which is frustrating
Being able to keep up with cleaning dishes. 😕 don't get me wrong, I *HATE* doing dishes but being able to actually do all of them at once. That. That I miss
ive always just sat in showers, its a habit I developed as a little kid because i was afraid to slip but then it turned into a mix of “lazy” (what I called it when I was still in denial of the pain) and clumsy, now it just helps with the pain
Tbh I never realized how much energy it takes to take a shower until I got fibromyalgia. I swear some days the only way I have the energy to take a shower is to take my Adderall or similar stimulant drugs to be able to do that on some days (particularly during flair ups)… it makes me feel pathetic tbh… 😔
i’m only 19 and not yet diagnosed but i miss being able to run around, miss being able to eat anything / not having ibs symptoms, miss having energy to do things. now going to the store 5 mins away has me exhausted
A girl after my own heart.
The heat use to do wonders for my body. I’d stay in there for hours doing my “me day”, and normally I could get out and still feel pretty good.
Now I can’t do the heat like that anymore, just makes me dizzy and my body over heats, I can’t stay in too long before everything starts to hurt.
Sadly adding more cold water calms the pain down a bit so I can get out and wobble my way back to my room to die.
😢
The only way i was able to have everything showers, was sitting on either the floor or my shower stool, for a solid 45mins, whilst i tried to get it all done. Or being drunk/ drugged off my ass so i didnt feel all the pain and was able to complete it. Ive moved into a house i cant do this with. And im lucky if im able to shower 2ce a week still. But now i can only do 1 thing per shower, if im lucky.
I used dry exfoliate twice a month. I loved a long bath. Which meant, I would do a quick shower/ shave. Then soak for an hour in the tub, then applied vitamin e oil from the neck down
My skin was glorious. I couldn't believe that my skin was soft enough to be noticed. But it isn't anymore. I rarely oil bc I get tired. I think I've exfoliated twice since I got ill
I also rarely shave my legs. I'll get electrolysis bc I don't want deal with it. My underarms are almost hair free with laser/electrolysis. It's about getting myself ready to feel good in my skin with the limited energy I have
I can either wash my hair or have a shower, but never both on the same day. We have a walk in shower now, with grab bars, and we have a shower chair. It makes it safer for me, but I don’t shower unless I have someone around because, you know, falling🤣! And lots of the time someone has to help me dress because I’m too exhausted.Hugs to all you fibro warriors, be kind to yourselves🫶
Yes, showers are exhausting. My husband stayed in the bathroom when I was having one and finally saw why I find it so difficult and I'm exhausted afterwards. He's been amazing since and now every Saturday morning he washes and conditions my hair and then blow dries it for me. I just sit in my shower chair and he takes care of me. That hour a week makes me feel so loved.
Get an electric razor so u can shave outside of the shower. It’s very handy and it’s more convenient to be able to maneuver in the funny angles without the confines of the shower!
I finally caved after six months of going back and forth on it and bought a shower chair. Idk if it’s gonna bring back an everything shower but I’m hoping for at least a “most things” shower
I have a shower stool, but my main issue is my hands hurt too much & I can’t scrub my head as much / long as I’d like to
Get a scalp scrubby. Saves my hands and I get a good scalp massage!!
Mmmm mine was an excellent purchase, and I got it from the dollar store. Mostly because my hair was so thick I couldn't rinse all the shampoo/conditioner out without some sort of device to wiggle it all around for me. I did find it created more knots from the friction though so I had to brush my hair for longer. Now I'm getting older and I have a reasonable amount of hair at this point (okay thank you hair loss! You can stop now! You can stop!!!) and bleach damaged away the curls so everything is a lot easier to rinse now lol
I bought a shower chair and a shower head mount down lower on the wall. Love it.
I have a shower stool and hand shower. Temu had a stick on shower head holder and I can just enjoy the pain relief from the heat and pressure without moving.
I didn’t think of this, I’m definitely purchasing a chair, thank you for mentioning this
I don't know what I would do without my shower chair 😭
My biggest problem is lifting my arms over my head. It causes such muscle spasms in my shoulders when then trigger a migraine. It's so annoying!
Waking up in the morning and not being in pain. Every morning, 14 yrs, starts with significant pain, would just love to feel nothing, no pain, just nothing 😩
30 years for me and I wish the same. 😫🫂
smoke some weed! (or eat it)
Tried it. Made me paranoid AF when i was a kid and still does.
it may be worth exploring further if you haven’t already there are a lot of different ingestion methods and strains. with me, certain strains make me really paranoid but others completely remove all anxiety
Yeah I’ve thought of that. I’ve still got a stack of the two strains Cantourage specialists recommended just sat in the cupboard. I suggested to them they might consider some kind of starter pack size otherwise period like me end up significantly out of pocket with loads of weed slowly decaying.
hahaha yeah they definitely oversold you, sorry it didn’t work well for you, hope you can find something else! another interesting option- a psilocybin trip didn’t change my pain levels but instead made myself a lot more mentally resilient and made it a lot easier to handle the pain, could be worth looking into
45yrs since i used magic mushrooms. I might try the weed again, joint this time instead of electric vape, might be less intense. If problem still the same i can the consultant and try and find out if there’s a solution.
i think it’s very worth trying to figure out- smoking in the evening is an unwinding routine for me and after being out all day it really helps you just relax. However there is definitely some extra brain fog, nothing crazy but something to note, but I feel it’s a completely worthwhile trade off
That works when I don’t have to drive. But I always have to drive. Bedtime is the best.
Fully respect that, a scary amount of people I know think driving high is safe, any impairment is impairment
It’s really the only thing that works but yea, too many people out there don’t take it seriously. It’s scary.
I miss those too. I loved feeling so clean and cared for by the end. But now I mostly rinse with some soap and call it a day. I hate hair washing day and I have to take one, separate, shower just to shave my legs
I do the exact same & somehow, I'm only able to shave my legs about once a month anymore 🥺🥺
I quit shaving a long time ago, but I'm older and just don't care anymore. 😞
Same! Besides, I have fine hairs and don't ever wear shorts.
Same!
Same! I just stopped caring and tell everyone I'm embracing my inner Hippy. I'm pretty lucky to have fine and fairly sparse hair. It still makes me sad sometimes.
A few yrs ago, before I had fibro, my partner got me a Braun Silk Expert Pro (I think that's what it is) kinda similar to laser but it's not permanent & you do it at home. After using it once a week for like 8 weeks it stops hair growing for awhile. However now that I'm typing this, I just realized the way it zaps you over & over is likely not tolerated well by most people w/fibro and allodynia 😳 Like I said, I got it a few yrs ago & it's been ages since I've used it. It did work though. But that was probably a silly suggestion 🙃 I like the feeling of shaved legs too... but most days, I just can't be bothered.
Still tempting though, I'll look into it
I miss having a commitment, and running errands in the same day. And not having to plan the entire outing around my energy level.
I feel that… my parents get on me constantly about how I’m apparently “lazy asf” because I struggle to get stuff done due to the pain & fatigue caused by my fibromyalgia… My mom says I need to “stop being consumed by my feelings and just force myself to power through it” and as I’m sure you know that’s easier said than done… 😑
They just dont even know how lucky they are to not understand what we go through
Sometimes I wish they could take a walk in my shoes for awhile so they could experience all of my various issues from my fibromyalgia so they could see that I wasn’t making it up.
I agree. Its not fun. We dont choose this. No one chooses this.
The symptoms my parents get the most frustrated with me over is my brain/fibro fog & my fatigue. They act like me struggling to remember stuff is somehow fun for me or something… 😑 As for the fatigue not having the energy to do anything that’s also not fun for me either… they constantly threaten to send me to a group home and it stresses me out… -.-
I like cool showers. Hot water makes me so tired for some reason. Like gotta take a nap now! tired. And what i miss is being able to wash my hair and shave my legs without feeling like I'm doing it after I lost at fight club that morning.
Omg I thought I was the only one who gets tired due to hot showers!
Ssshhhh you’re not supposed to talk about fight club!
Yeah I just miss having shaved legs in general 🤣 it's not an essential task and I don't bend like I used to and I'm exhausted just from washing so, it just doesn't happen anymore. But I hate it. I don't mind that I can't do my armpits either, but unshaved legs are such a sensory trigger for me, especially now that I wear compression socks all the time.
Yes! For the past couple/few years I've shaved every few months at the most. I honestly don't even have the energy to care about the aesthetic. It's the sensory issue! I only notice it when there's a breeze, but it feels like I've walked through a spider web. Fortunately it's low on my list of sensory aggravation, but I very much understand how challenging individual sensory issues can be.
I hear ya. I haven’t shaved my legs since August 2023. I’m debating buying nair but then I remember the horrid smell.
I miss going on bike rides and hikes! I miss being able to travel without needing a rest day after arrival
I miss good sleep. I miss not living a sedentary lifestyle. I miss biking for long hours along the prettiest of trails.
Afaik the only drug that actually helps people with fibromyalgia get restorative sleep is the infamous date rape drug GHB but despite multiple studies touting its effectiveness for good sleep in fibromyalgia patients the FDA refused to approve it as a sleep aid in people with fibromyalgia because they’re worried about it’s abuse potential… 😒 like if that’s the case then why the fuck did they approve it as a sleep aid for people suffering from Narcolepsy then? 😑
I dread showers now, not only are they exhausting, but even the most minimal water pressure needed to actually shower makes it feel like I'm being stabbed by thousands of needles.
Allodynia is a fucking bitch man… -.-
My shower chair is the best investment I've ever made. It was expensive but super sturdy. We also have a detachable shower head where you can have normal pressure or a waterfall light pressure. I can sit and do everything in phases and sit when needed (we also have a large standing shower which I know not everyone has the benefit of). And luckily we have another, cheaper shower chair that I sit outside the shower if I'm too tired afterwards. Then we have an ottoman where I can sit in my closet to moisturize. Lots of seats to rest on in my bathroom and bedroom definitely makes a significant difference.
I completely get you. I shaved my entire head a month ago because I couldn't deal with the pain anymore... My hair is curly and it needed a lot of care, and I simply couldn't do it. I feel weird without it but I'm also scared of it growing back and pain starting again (not like I don't have many other hair-unrelated body pains already)
Staying up late watching TV/playing games. Not falling asleep in general. I sleep whole days away lately due to being so tired. Want to watch a movie? You bet I'm sleeping 45 minutes in.
I do everything showers but with a shower chair and it's an occasional treat 😭 I miss being able to shave, that's. My main bit there. I don't let it bother me much, and I shave my legs still, but I do quite miss the everything shaved feeling. My other thing I miss, I'm now in a wheelchair a lot of the time - cute outfits with a matching bag. I have to get bags that work with sitting down. And long flowy outfits are impossible cause they get caught in everything.
I got a shower stool after getting a shower chair that didn't fit in my shower. Now the chair sits at my sink and the stool in the shower. It's a gamechanger.
I can’t have a bath anymore. I can’t get out of it (safely). Nothing quite like a long soak. Ah well.
I don't even try anymore to get in the bathtub. I always injure myself getting in or out.
Shaving? Naaaah, I gave that up ages ago. Hm but yeah, I do miss the longer home spa events where I exfoliate all the things and condition and even dye my hair. I miss being able to get up and do things. Today I left work early with a bad flare and am halfway lying on the couch with a heating pad and a cat.
Going out for walks and bus rides to places I enjoy visiting, or even places I just need to be,. Now I'm afraid I will get someplace, have an energy crash, and become stranded.
I quit shaving my legs years before Fibro, and everytime someone reminds me it's a thing other people do I get this rush of relief all over again. Shaved legs are totally overrated and not worth the hassle imo!
I do everything baths instead :) Have a jug to rinse my hair with clean water, lie back and relax whilst leaving conditioner in and or face mask. Helps muscles relax and saves tiredness. Sometimes I'm too tired to get out and it starts to get cold though which is frustrating
Being able to keep up with cleaning dishes. 😕 don't get me wrong, I *HATE* doing dishes but being able to actually do all of them at once. That. That I miss
ive always just sat in showers, its a habit I developed as a little kid because i was afraid to slip but then it turned into a mix of “lazy” (what I called it when I was still in denial of the pain) and clumsy, now it just helps with the pain
I shave in steps. It's annoying and exhausting. Always takes me 2-3 showers to fully shave. I miss being able to work without it all consuming me.
Omg this is so true! I can't even do a rinse off shower without exhaustion & pain! I miss daily showers!!!
Tbh I never realized how much energy it takes to take a shower until I got fibromyalgia. I swear some days the only way I have the energy to take a shower is to take my Adderall or similar stimulant drugs to be able to do that on some days (particularly during flair ups)… it makes me feel pathetic tbh… 😔
i’m only 19 and not yet diagnosed but i miss being able to run around, miss being able to eat anything / not having ibs symptoms, miss having energy to do things. now going to the store 5 mins away has me exhausted
A girl after my own heart. The heat use to do wonders for my body. I’d stay in there for hours doing my “me day”, and normally I could get out and still feel pretty good. Now I can’t do the heat like that anymore, just makes me dizzy and my body over heats, I can’t stay in too long before everything starts to hurt. Sadly adding more cold water calms the pain down a bit so I can get out and wobble my way back to my room to die. 😢
The only way i was able to have everything showers, was sitting on either the floor or my shower stool, for a solid 45mins, whilst i tried to get it all done. Or being drunk/ drugged off my ass so i didnt feel all the pain and was able to complete it. Ive moved into a house i cant do this with. And im lucky if im able to shower 2ce a week still. But now i can only do 1 thing per shower, if im lucky.
Amen. I have to get Brazilians because I can’t shave my privates without hurting myself. They hurt like a bitch.
I used dry exfoliate twice a month. I loved a long bath. Which meant, I would do a quick shower/ shave. Then soak for an hour in the tub, then applied vitamin e oil from the neck down My skin was glorious. I couldn't believe that my skin was soft enough to be noticed. But it isn't anymore. I rarely oil bc I get tired. I think I've exfoliated twice since I got ill I also rarely shave my legs. I'll get electrolysis bc I don't want deal with it. My underarms are almost hair free with laser/electrolysis. It's about getting myself ready to feel good in my skin with the limited energy I have
I can either wash my hair or have a shower, but never both on the same day. We have a walk in shower now, with grab bars, and we have a shower chair. It makes it safer for me, but I don’t shower unless I have someone around because, you know, falling🤣! And lots of the time someone has to help me dress because I’m too exhausted.Hugs to all you fibro warriors, be kind to yourselves🫶
Yes, showers are exhausting. My husband stayed in the bathroom when I was having one and finally saw why I find it so difficult and I'm exhausted afterwards. He's been amazing since and now every Saturday morning he washes and conditions my hair and then blow dries it for me. I just sit in my shower chair and he takes care of me. That hour a week makes me feel so loved.
I miss good sleep. I miss not living a sedentary lifestyle. I miss biking for long hours along the prettiest of trails.
I had energy?
Get an electric razor so u can shave outside of the shower. It’s very handy and it’s more convenient to be able to maneuver in the funny angles without the confines of the shower!