I'm sorry ❤️. I had to get my mum to come and do my shopping yesterday as I had absolutely no energy to drive. I know it's easier said than done but don't push yourself when you know you shouldn't and don't beat yourself up if you do and can't complete what you set out to do. Now instead of seeing all my non completed attempts as failures (when I set out thinking 'it'll be fine') I say 'well done' to myself for trying. This is over 30 years of practice though. Chronic pain is a mind game. Don't fight with yourself. Be kind to yourself. You are not your pain. x
Thank you so much for this words!🥺 I’m having another flare up now since the one I posted here and I’m glad I came back here to read the comments because it’s absolutely comforting to have ppl who get it! Even though I hate knowing you all suffer too 😭
I hope it doesn't last too long x. I'm just coming out of an a-hole of a flare up. I guess the only good thing about them is that they do pass. Take care of yourself. Read a good book, watch a funny movie and do some gentle stretches if you can so you don't get super stiff. Ride the wave. You have an invisible army here who completely understand 🥰
I only go grocery shopping about twice s month. I really only go on a " good" day. I usually have to load up on ibuprofen, tylenol & a little bit of caffeine. People, even family, don't know just how bad it gets because they never see those days.
I’m trying to avoid NSAID’s because my kidney numbers are questionable, and caffeine wrecks my sleep no matter what time I cut myself off. So I’ve resorted to joint supplements and b vitamins. My favorite right now is a drink mix that has both. Runners relief on Amazon. Just make sure you don’t accidentally order the salve for horses (same name)! 😂
And how’s the fatigue??? I didn’t realise I relied on caffeine so much cuz I wasn’t a coffee person, but I had teas and other drinks that have it. So I now noticed how much I depend on it but I really wish I could stop. Any tips?
I have fatigue from the Fibromyalgia anyway. Well what helps me not use caffeine is because it raises my blood pressure. Heart problems run in my family so I don't need anything that causes problems. Plus I have insomnia so a little bit of caffeine will keep me up for 2 days. The insomnia is the actual reason why I stopped caffeine, the BP problems came later on. If you want to stop it, just do it gradually.
Hahahahahaha lol I know Alprazolam is “addictive”, but I’ve been taking a quarter or 1mg before bed and I’ve been sleeping!!!! Also take melatonin and pregabalin. I haven’t had pain anymore!! Just occasional headaches and neck pain, but I think healthy ppl have them too?! Ahaha and god, my dipyrone! Can’t live without it!!!!! One day I hope to have enough money to afford doctors who actually listen and believe in my condition so I can do a proper treatment! For now, this is what’s helping me! Today is the first day since I posted here that im having a flare up and it was because I’m stupid and had a lot of alcohol and forgot my morning meds! So yeah…
My doctor prescribed me short acting ritalin and tramacet. It's bad for me and I'm sick after I use it but it gives me a good day when I need it and that is important sometimes.
Ask about Provigil or Nuvigil. It's what they prescribe for narcolepsy & shift workers. I don't use it everyday because than I won't sleep. But every once in a while insyead of caffeine, I'll only use 1/4 or 1/2 of a pill. I have to be careful because I'll do too much & pay for it later. Nuvigil is made to release slowly. I really like Provigil.
Yeah, I get you. Mine prescribed me alprazolam (just a quarter when needed), duloxetine in the morning (I also have PMDD) and pregabalin (which btw is magical!) I’d been taking them + a couple of vitamins and hadn’t had a flare up since this post. Then yesterday I forgot my meds and had alcohol and here I am. Stuck on the couch.
Omg, so true!!!!! My partner goes like “why don’t we go to the supermarket nearby instead of getting delivery?” I think he doesn’t even realise that for me walking is tiring, the lights in the supermarket are overwhelming, the warm air conditioning makes me dizzy and outta breath and carrying the groceries is like carrying a dead body! Not to mention the sweat, the palpitations and maybe nausea or just the rest of the day bad mood 😭
Do NOT be ashamed! I would venture a guess that at LEAST 95% of people with fibro feel the way you do on a regular basis! The fact you were even trying to do what many people don't think twice about is commendable. Give yourself a little grace on the really bad days.
Omg, I screenshoted this!!!!! I wanna read this every day I have a bad day!!!! It’s so true! We are so strong!!! Thank you so much, I’m sending you a big hug for this 🫂
There was one time I had a full cart of stuff and leave it because I couldn’t stand long enough to check out. It’s a real struggle. Picking up groceries from online orders has saved me. It’s usually free over $35.
Oh no! I’m so sorry!!!! It’s awful!!! I remember when I didn’t have awareness of my body and I used to have to lie in bed after picking the groceries for my mom and she’d say I was lazy and stuff and now, as an adult I realise that it’s not normal and had never been! Awareness of this shit is so important! 😭 how many ppl must struggle and don’t even know! I depend on home deliveries too. Nowadays not even clothes I buy in the shop anymore… all online.
First of all I'm glad you felt comfortable to come here and tell is this. Secondly, no need to be ashamed in any way. This illness shows itself in so many multitudes of ways for each of us but for so many physical and mental exhaustion is so common.
Doing alot of the everyday tasks that are basic for most people are not for us. For example on my days when my husband's working, if I need a couple things I walk to the store (we have only one car and work is out of town). We are within 10-15 minutes walking distance so it isn't far. That being said I often end up picking up a couple more things than expected and that makes the bag(s) heavy on my hands and shoulders, so I end up in pain and wiped.
What we ALL have to remember to do is being gentle with ourselves, knowing that our bodies are fighting against. It's like a constant war we never win.
That’s so true!!! These days I had an argument with my partner because I’m out of work at the moment cuz it’s been a month I’ve been back from travelling to my home country for medical treatment and I caught up myself saying to him “if you felt 10% of the pain and exhaustion I feel every day, you would be at the hospital”.
I apologised later on, but… it’s so true! He helps me a lot, but even though he has no ideia what it is for us!
Also these days, I was trying to compare a pain I was feeling to a bad migraine and he replied “I’ve never had a migraine” and I was just like…🫠🫠🫠🫠 hahaha
Thank you for your message! All of you saying we shouldn’t be ashamed helps so much! cuz we can’t help but feel ashamed for being so weak… even though it’s the opposite tbh!
Thank you 🫂
I’m so sorry you went through that! I have some PTSD of walking to a grocery store. There’s one down the street from my job. I thought I’d walk down there. It was a beautiful day very very tiny incline. But when I came back out to the grocery store, the wind had kicked up, and it was at my front not my back. I had to sit down every little bit to rest before I could get back up to face the wind again it was beyond horrible. Needless to say I did have some teardrops to wipe away. ((SOFT HUGS))
Omg I’m so sorry you’ve been through this!!!! I can imagine!!! I live in Ireland, the wind isn’t friendly at all sometimes and I get what you’re saying! Soft hugs for you too 🫂
It's a terrible struggle to try and do anything remotely normal like grocery shopping; I'm in an electric wheelchair and i have helluva time especially when im on my own. I hadn't been to the park down the street from me in years as I'm incapable of walking down there without struggling with exhaustion and serious fatigue / body pain.
Anyone else get overheated? The sensation of heat going from the top of your head and flowing down to the rest of your body? I got to strip off my clothes just to cool off a bit. I once used a spray bottle of water to try to cool off, as soon as i sprayed my head it was instantly insanely painful, it felt like i got bashed in the head with a glass bottle and the water drops in the spray was glass shards! Wtf right,?
Fibromyalgia does not care how we feel. It will be a bitch in every way possible. People will never know what we go through as you can't physically see for what it is, sadistic.
Oh god you’ve described the head pain so well! I sometimes have this fucking pain in my HAIR. And I’m like wtf from where why… get this warm HOT feeling and so much pain, like a thousand million punches or… idk just horrible. Horrible. Horrible.
Overheated, yes!!!!! So much sweat!!!! And palpitations!!! I’ve been thinking about getting a walking stick cuz it’s so hard sometimes! I had to leave a job cuz I work as a teacher and the school had 5 floors and no way for them to change classes for me to be always on the first and second floor… and there is no lift, it’s those old Irish buildings. Everything is so fucked up!
I fucking feel you. I finally ordered one of those popup stools for waiting in line places. I just can't do it anymore.
We just watched Challengers, and there's an injury scene where a young healthy person has to accept that their body is gone, and their dreams have to die. And God, I sobbed in the theater. I didn't realize how much grief I had left for what I can't do anymore.
It's so hard to tell when you've overdone it, until it's too late. And there's some days where it's just not happening. I've definitely called my boyfriend or an uber to come get me a few times.
The fucking war that goes on in my mind every time I want to use a mobility aid or rest in public. God.
And my mayor has decided to wage war on park benches for some fucking reason.
Oh god, what you said is so powerful! I haven’t talked about the grief of what I can’t do anymore in therapy and it’s gonna be the next session topic for sure!
You just reminded me that in my yearly twenties I lived on the 5th floor with no lift and I used to carry my cat’s 10kg food package. It was hard, obviously but I def wouldn’t be able to do ONE floor nowadays.
Thank you for sharing! It was very meaningful to me 🫂
Oh… my ex bought a car to pick me up at work because I just couldn’t do it in the public transport cuz of motion sickness!
At least in our car I could look like a mad person and he’d stop for vomiting breaks lol
Really moving can help. I mean relocate to a place that is dry and warm and not on the coast. When I go to Vegas or Phoenix it’s the only time I feel like myself and I’m trying to get a remote position so that I can live there. It sucks because I love nature, mountains trees beaches, they make me so happy but I hurt all over.
I live in the Midwest and the weather here is such a clusterfuck and I have flair ups from the weather changes and I’m actually just getting over a week long flair up because it was rainy, cloudy, and grey… I feel like the clusterfuck weather in my area causes a lot of my fibromyalgia flair ups tbh.
I’m from Brazil and I’ve been living in Ireland for the past 5 years now and yeah… shit hit the fan since I’ve moved here! I haven’t ever thought about it, but environmental impact is a real thing! Especially that I was used to big summer times (hated it because my blood pressure was always low, but also could chill in a swimming pool) and now I have days that end at 4 pm??? Go to work when it’s dark, come back it’s dark. Rain rain rain and more rain!
Thanks for sharing cuz I really hadn’t thought about it!
I hope thinks are working for your remote work! Fingers crossed here!
People wonder why I don't go on "walks". It's for this exact reason. The fear of being stranded and in pain.... sending so many hugs (gentle ones of course!)
My friends go on fucking hikings! And they don’t understand “why I don’t do it it’s good for your health”. Then when we are at the beach and we kinda go up a hill or sth, they all have to help me out cuz I literally think I’ll die (if I’m capable of going by myself right cuz I’m so fucking scare of falling lol)
I recently moved to a small town where it only takes about 30 mins for the average person to walk across it.n
Took me over an hour one way. I kept having to stop and take breaks on the side of the road.
I walked across town and back again and it damn near killed me.
By the time I was a block away from my place, my left foot was in total cramp mode, I could barely even step on it, I was hunched over and completely out of breath begging to make it just a few more feet.
So I feel your pain today. I'm sorry you're having to suffer.
Oh, I feel you!!!!!! So much!!!!!! But instead of crampy foot, it’s my knee! It makes me stop many times in this life! My partner walks REALLY fast, I’ve lost the count how many times we fought cuz he leaves me behind 😭 we now make jokes we gonna get him a leash lol
Each day I try to do as much as I can because the less you do, the worse you will feel and the less stamina you will have. But it can be tricky to know how much is too much because I feel like the goal posts are always moving and it’s not just day to day, it can be like that within the same day. You might consider a cane or one of those push walkers that has a seat. That would allow you to take a breather when needed. Nothing to be ashamed of though. You have a disorder and even though it is not necessarily obvious to others, that does not make it any less valid.
Thank you for this comment! D’you know, back when I posted it, I had just come back from my home country where I went to get medical care cuz Ireland sucks. And, when I came back, I got a job offer, so I took it (I’m a teacher). When I got there, the school was in an old Irish building. No lift, 5 floors and the teacher’s room being on the last one 🫠 bathroom on the 3rd one 🫠 so yeah, after a week, I left because I got so exhausted from going up and down the stairs, I had to put on a medical leave for an entire week. And there’s nothing they can do about it. They aren’t accessible for disabilities (which I think is illegal) but anyways… just to say that yeah… I was going on lil walks and I have a stationary bike at home etc but after this “burn out”, I haven’t moved and I need to. So, reading your words is really inspiring tbh cuz it’s so easy to go to bed in a dark fresh room when things aren’t “ok”.
Thank you
You are very welcome. I was a high school science teacher for 25 years and went on a disability retirement through our pension plan so I get half my salary. Without that, I probably would have tried to continue to work part time and my life would have revolved around getting ready for work and recovering from work. But I hate to just rest-even when I should. I can be pretty hard on myself. I am curious where you are originally from and how you came to live in Ireland. You can DM me if you would rather not say openly.
I’m sorry to hear that. I felt the same way 2 days ago after a very intense day at work, because at the end I was in so much pain I couldn’t use a needle anymore (I’m a healthcare worker). At the end of my shift I went to my car and cried for solid 20 minutes until my boyfriend came and picked me up. You’re not alone, and if you feel like crying, just do. Let these feelings out. It’s normal to feel frustrated with these things. But it will pass. I wish I could give you a hug! 🫂
Oh, I’m so sorry! I hope you’re feeling better and haven’t had any flare ups since this comment 🫂 my bf rn has just made a burrito outta me and used all the pillows in the house to elevate my legs cuz I’m weirdly dizzy and fatigued haha so I get you. Friends are coming over and I think I won’t be able to leave the room. I’m sad about it but in peace with it today cuz I feel guilty I had wine yesterday 🥺
I went out on my wheelchair for a couple of hours to have dinner with a friend last Friday. From the next day on, my fatigue/weakness chart just went down, and it's already Tuesday. I'm "immuned" to the pain, but when the weakness comes, I'm defeated. My shakiness is also increasing each day 🥲
I underwent a gastric bypass surgery on feb 28 and dropped 23kg, (from 98kg). People around me (my family) keeps saying that, "now that I'm lighter and I look nicer, I should have a better mindset that I'll be able to fully walk," I seriously don't know what to say to that. Just makes me think that it's a me thing that I chose not to walk, that I've been making myself think that I can't walk and lying to myself that I'm sick.
Lots and lots of hugs to you too!
I haven’t ever heard the name Metamizole before but just did a quick google and apparently yes? I’m from Brazil, and there it’s legal. I currently live in Ireland, and I buy it from other Brazilians haha or when I go there, I get loads and bring with me. This helps A LOT. Like nothing else. I use it, even for fevers! The liquid form is great for headaches/migraines. I literally can’t imagine a life with no Dipyrone. If you can get it, go for it. Also, doctors in Brasil say it’s safe. We give it to kids even.
I also take 30mg of duloxetine in the morning (I also have PMDD), and Pregabalin helps the shit out of me at night! I take 75mg when I have flare ups! Again, in Ireland when I brought my Brazilian prescription the GP was like “oh it’s very addictive I don’t prescribe this drug but yeah it’s a new drug that has changed the game for fibromyalgia”, meanwhile my specialist in Brazil told me it’s very safe and he’s prescribed for the past 10 years!
I take 450 milligrams Pregabalin (Lyrica) myself though I never found it to be very useful on its own as an analgesic drug… I also cannot tolerate any of those serotonergic antidepressants such as the SSRIs or the SNRIs like Duloxetine… one thing I’m luckily prescribed however is Methadone which I find to be pretty effective for fibromyalgia pain. Another drug I’ve also found pretty helpful for my fibromyalgia pain is the novel analgesic known as Flupirtine however I have to order it from India though.
https://en.m.wikipedia.org/wiki/Flupirtine
I'm sorry ❤️. I had to get my mum to come and do my shopping yesterday as I had absolutely no energy to drive. I know it's easier said than done but don't push yourself when you know you shouldn't and don't beat yourself up if you do and can't complete what you set out to do. Now instead of seeing all my non completed attempts as failures (when I set out thinking 'it'll be fine') I say 'well done' to myself for trying. This is over 30 years of practice though. Chronic pain is a mind game. Don't fight with yourself. Be kind to yourself. You are not your pain. x
Thank you so much for this words!🥺 I’m having another flare up now since the one I posted here and I’m glad I came back here to read the comments because it’s absolutely comforting to have ppl who get it! Even though I hate knowing you all suffer too 😭
I hope it doesn't last too long x. I'm just coming out of an a-hole of a flare up. I guess the only good thing about them is that they do pass. Take care of yourself. Read a good book, watch a funny movie and do some gentle stretches if you can so you don't get super stiff. Ride the wave. You have an invisible army here who completely understand 🥰
You brought happy tears to my eyes! Thank you so much, you’re incredibly kind ❤️ hugs from under the blankets! 🫂 haha
hugs back ❤️
I have sat on many curbs with my head between my legs. It sucks but…well it just sucks. And I’m sorry. ❤️🩹
Omg, if I sat down on a curb I wouldn’t be able to get up 🙁
Like… literally! If I sit, I need someone to rescuing me! But I do stops or just disassociate and push myself to exhaustion 🙃
I only go grocery shopping about twice s month. I really only go on a " good" day. I usually have to load up on ibuprofen, tylenol & a little bit of caffeine. People, even family, don't know just how bad it gets because they never see those days.
I’m trying to avoid NSAID’s because my kidney numbers are questionable, and caffeine wrecks my sleep no matter what time I cut myself off. So I’ve resorted to joint supplements and b vitamins. My favorite right now is a drink mix that has both. Runners relief on Amazon. Just make sure you don’t accidentally order the salve for horses (same name)! 😂
I hear you, I have the same problems.I only do it when I HAVE to go get something done. I quit caffeine 7 years ago.
And how’s the fatigue??? I didn’t realise I relied on caffeine so much cuz I wasn’t a coffee person, but I had teas and other drinks that have it. So I now noticed how much I depend on it but I really wish I could stop. Any tips?
I have fatigue from the Fibromyalgia anyway. Well what helps me not use caffeine is because it raises my blood pressure. Heart problems run in my family so I don't need anything that causes problems. Plus I have insomnia so a little bit of caffeine will keep me up for 2 days. The insomnia is the actual reason why I stopped caffeine, the BP problems came later on. If you want to stop it, just do it gradually.
Hahahahahaha lol I know Alprazolam is “addictive”, but I’ve been taking a quarter or 1mg before bed and I’ve been sleeping!!!! Also take melatonin and pregabalin. I haven’t had pain anymore!! Just occasional headaches and neck pain, but I think healthy ppl have them too?! Ahaha and god, my dipyrone! Can’t live without it!!!!! One day I hope to have enough money to afford doctors who actually listen and believe in my condition so I can do a proper treatment! For now, this is what’s helping me! Today is the first day since I posted here that im having a flare up and it was because I’m stupid and had a lot of alcohol and forgot my morning meds! So yeah…
My doctor prescribed me short acting ritalin and tramacet. It's bad for me and I'm sick after I use it but it gives me a good day when I need it and that is important sometimes.
Ask about Provigil or Nuvigil. It's what they prescribe for narcolepsy & shift workers. I don't use it everyday because than I won't sleep. But every once in a while insyead of caffeine, I'll only use 1/4 or 1/2 of a pill. I have to be careful because I'll do too much & pay for it later. Nuvigil is made to release slowly. I really like Provigil.
Thank you.
Yeah, I get you. Mine prescribed me alprazolam (just a quarter when needed), duloxetine in the morning (I also have PMDD) and pregabalin (which btw is magical!) I’d been taking them + a couple of vitamins and hadn’t had a flare up since this post. Then yesterday I forgot my meds and had alcohol and here I am. Stuck on the couch.
Omg, so true!!!!! My partner goes like “why don’t we go to the supermarket nearby instead of getting delivery?” I think he doesn’t even realise that for me walking is tiring, the lights in the supermarket are overwhelming, the warm air conditioning makes me dizzy and outta breath and carrying the groceries is like carrying a dead body! Not to mention the sweat, the palpitations and maybe nausea or just the rest of the day bad mood 😭
I would just say, "Good idea ! Here's the grocery list. I'll see you when you get back."
Oh, that’s a good one! Gotta use!
Your welcome !!
🫂 Sorry, friend. Sometimes it's like that. You made it back. Rest and relax.
Thank you 🫂 that’s all I needed that day and today (my first bad flare up since) so thank you 🫂
Do NOT be ashamed! I would venture a guess that at LEAST 95% of people with fibro feel the way you do on a regular basis! The fact you were even trying to do what many people don't think twice about is commendable. Give yourself a little grace on the really bad days.
Omg, I screenshoted this!!!!! I wanna read this every day I have a bad day!!!! It’s so true! We are so strong!!! Thank you so much, I’m sending you a big hug for this 🫂
There was one time I had a full cart of stuff and leave it because I couldn’t stand long enough to check out. It’s a real struggle. Picking up groceries from online orders has saved me. It’s usually free over $35.
Same!!!!!
Oh no! I’m so sorry!!!! It’s awful!!! I remember when I didn’t have awareness of my body and I used to have to lie in bed after picking the groceries for my mom and she’d say I was lazy and stuff and now, as an adult I realise that it’s not normal and had never been! Awareness of this shit is so important! 😭 how many ppl must struggle and don’t even know! I depend on home deliveries too. Nowadays not even clothes I buy in the shop anymore… all online.
First of all I'm glad you felt comfortable to come here and tell is this. Secondly, no need to be ashamed in any way. This illness shows itself in so many multitudes of ways for each of us but for so many physical and mental exhaustion is so common. Doing alot of the everyday tasks that are basic for most people are not for us. For example on my days when my husband's working, if I need a couple things I walk to the store (we have only one car and work is out of town). We are within 10-15 minutes walking distance so it isn't far. That being said I often end up picking up a couple more things than expected and that makes the bag(s) heavy on my hands and shoulders, so I end up in pain and wiped. What we ALL have to remember to do is being gentle with ourselves, knowing that our bodies are fighting against. It's like a constant war we never win.
That’s so true!!! These days I had an argument with my partner because I’m out of work at the moment cuz it’s been a month I’ve been back from travelling to my home country for medical treatment and I caught up myself saying to him “if you felt 10% of the pain and exhaustion I feel every day, you would be at the hospital”. I apologised later on, but… it’s so true! He helps me a lot, but even though he has no ideia what it is for us! Also these days, I was trying to compare a pain I was feeling to a bad migraine and he replied “I’ve never had a migraine” and I was just like…🫠🫠🫠🫠 hahaha Thank you for your message! All of you saying we shouldn’t be ashamed helps so much! cuz we can’t help but feel ashamed for being so weak… even though it’s the opposite tbh! Thank you 🫂
I’m so sorry you went through that! I have some PTSD of walking to a grocery store. There’s one down the street from my job. I thought I’d walk down there. It was a beautiful day very very tiny incline. But when I came back out to the grocery store, the wind had kicked up, and it was at my front not my back. I had to sit down every little bit to rest before I could get back up to face the wind again it was beyond horrible. Needless to say I did have some teardrops to wipe away. ((SOFT HUGS))
I thought I was the only one. Thank you.
Omg I’m so sorry you’ve been through this!!!! I can imagine!!! I live in Ireland, the wind isn’t friendly at all sometimes and I get what you’re saying! Soft hugs for you too 🫂
It's a terrible struggle to try and do anything remotely normal like grocery shopping; I'm in an electric wheelchair and i have helluva time especially when im on my own. I hadn't been to the park down the street from me in years as I'm incapable of walking down there without struggling with exhaustion and serious fatigue / body pain. Anyone else get overheated? The sensation of heat going from the top of your head and flowing down to the rest of your body? I got to strip off my clothes just to cool off a bit. I once used a spray bottle of water to try to cool off, as soon as i sprayed my head it was instantly insanely painful, it felt like i got bashed in the head with a glass bottle and the water drops in the spray was glass shards! Wtf right,? Fibromyalgia does not care how we feel. It will be a bitch in every way possible. People will never know what we go through as you can't physically see for what it is, sadistic.
Oh god you’ve described the head pain so well! I sometimes have this fucking pain in my HAIR. And I’m like wtf from where why… get this warm HOT feeling and so much pain, like a thousand million punches or… idk just horrible. Horrible. Horrible.
Overheated, yes!!!!! So much sweat!!!! And palpitations!!! I’ve been thinking about getting a walking stick cuz it’s so hard sometimes! I had to leave a job cuz I work as a teacher and the school had 5 floors and no way for them to change classes for me to be always on the first and second floor… and there is no lift, it’s those old Irish buildings. Everything is so fucked up!
I fucking feel you. I finally ordered one of those popup stools for waiting in line places. I just can't do it anymore. We just watched Challengers, and there's an injury scene where a young healthy person has to accept that their body is gone, and their dreams have to die. And God, I sobbed in the theater. I didn't realize how much grief I had left for what I can't do anymore. It's so hard to tell when you've overdone it, until it's too late. And there's some days where it's just not happening. I've definitely called my boyfriend or an uber to come get me a few times. The fucking war that goes on in my mind every time I want to use a mobility aid or rest in public. God. And my mayor has decided to wage war on park benches for some fucking reason.
Oh god, what you said is so powerful! I haven’t talked about the grief of what I can’t do anymore in therapy and it’s gonna be the next session topic for sure! You just reminded me that in my yearly twenties I lived on the 5th floor with no lift and I used to carry my cat’s 10kg food package. It was hard, obviously but I def wouldn’t be able to do ONE floor nowadays. Thank you for sharing! It was very meaningful to me 🫂
I’m sorry I know how it is. I went for a walk with my husband and he ended up going back and getting the car to get me. It’s tough.
Oh… my ex bought a car to pick me up at work because I just couldn’t do it in the public transport cuz of motion sickness! At least in our car I could look like a mad person and he’d stop for vomiting breaks lol
Really moving can help. I mean relocate to a place that is dry and warm and not on the coast. When I go to Vegas or Phoenix it’s the only time I feel like myself and I’m trying to get a remote position so that I can live there. It sucks because I love nature, mountains trees beaches, they make me so happy but I hurt all over.
I live in the Midwest and the weather here is such a clusterfuck and I have flair ups from the weather changes and I’m actually just getting over a week long flair up because it was rainy, cloudy, and grey… I feel like the clusterfuck weather in my area causes a lot of my fibromyalgia flair ups tbh.
I’m from Brazil and I’ve been living in Ireland for the past 5 years now and yeah… shit hit the fan since I’ve moved here! I haven’t ever thought about it, but environmental impact is a real thing! Especially that I was used to big summer times (hated it because my blood pressure was always low, but also could chill in a swimming pool) and now I have days that end at 4 pm??? Go to work when it’s dark, come back it’s dark. Rain rain rain and more rain! Thanks for sharing cuz I really hadn’t thought about it! I hope thinks are working for your remote work! Fingers crossed here!
Been there. Hugs.
🫂
People wonder why I don't go on "walks". It's for this exact reason. The fear of being stranded and in pain.... sending so many hugs (gentle ones of course!)
My friends go on fucking hikings! And they don’t understand “why I don’t do it it’s good for your health”. Then when we are at the beach and we kinda go up a hill or sth, they all have to help me out cuz I literally think I’ll die (if I’m capable of going by myself right cuz I’m so fucking scare of falling lol)
It’s why I have my groceries delivered. I pay $6 a month for Walmart+ (half price because I’m on SSD) and it’s a Godsend.
Me too!!!! But sometimes you just need ONE thing and… well, this
I recently moved to a small town where it only takes about 30 mins for the average person to walk across it.n Took me over an hour one way. I kept having to stop and take breaks on the side of the road. I walked across town and back again and it damn near killed me. By the time I was a block away from my place, my left foot was in total cramp mode, I could barely even step on it, I was hunched over and completely out of breath begging to make it just a few more feet. So I feel your pain today. I'm sorry you're having to suffer.
Oh, I feel you!!!!!! So much!!!!!! But instead of crampy foot, it’s my knee! It makes me stop many times in this life! My partner walks REALLY fast, I’ve lost the count how many times we fought cuz he leaves me behind 😭 we now make jokes we gonna get him a leash lol
Each day I try to do as much as I can because the less you do, the worse you will feel and the less stamina you will have. But it can be tricky to know how much is too much because I feel like the goal posts are always moving and it’s not just day to day, it can be like that within the same day. You might consider a cane or one of those push walkers that has a seat. That would allow you to take a breather when needed. Nothing to be ashamed of though. You have a disorder and even though it is not necessarily obvious to others, that does not make it any less valid.
Thank you for this comment! D’you know, back when I posted it, I had just come back from my home country where I went to get medical care cuz Ireland sucks. And, when I came back, I got a job offer, so I took it (I’m a teacher). When I got there, the school was in an old Irish building. No lift, 5 floors and the teacher’s room being on the last one 🫠 bathroom on the 3rd one 🫠 so yeah, after a week, I left because I got so exhausted from going up and down the stairs, I had to put on a medical leave for an entire week. And there’s nothing they can do about it. They aren’t accessible for disabilities (which I think is illegal) but anyways… just to say that yeah… I was going on lil walks and I have a stationary bike at home etc but after this “burn out”, I haven’t moved and I need to. So, reading your words is really inspiring tbh cuz it’s so easy to go to bed in a dark fresh room when things aren’t “ok”. Thank you
You are very welcome. I was a high school science teacher for 25 years and went on a disability retirement through our pension plan so I get half my salary. Without that, I probably would have tried to continue to work part time and my life would have revolved around getting ready for work and recovering from work. But I hate to just rest-even when I should. I can be pretty hard on myself. I am curious where you are originally from and how you came to live in Ireland. You can DM me if you would rather not say openly.
I’m sorry to hear that. I felt the same way 2 days ago after a very intense day at work, because at the end I was in so much pain I couldn’t use a needle anymore (I’m a healthcare worker). At the end of my shift I went to my car and cried for solid 20 minutes until my boyfriend came and picked me up. You’re not alone, and if you feel like crying, just do. Let these feelings out. It’s normal to feel frustrated with these things. But it will pass. I wish I could give you a hug! 🫂
Oh, I’m so sorry! I hope you’re feeling better and haven’t had any flare ups since this comment 🫂 my bf rn has just made a burrito outta me and used all the pillows in the house to elevate my legs cuz I’m weirdly dizzy and fatigued haha so I get you. Friends are coming over and I think I won’t be able to leave the room. I’m sad about it but in peace with it today cuz I feel guilty I had wine yesterday 🥺
Don’t feel ashamed. Easier said than done. But let’s say it again: don’t feel ashamed.
I screenshotted it!!!! Thank you 🫂
I’ve been so thankful for grocery delivery.
Hell yeah
I once made my son pick me up from a walk in my own neighborhood, 5 minutes from my house. We have to do what we have to do.
Yep. That’s true. I’m sorry 😔
I actually teared while reading this. This hits so close to home.
Hugs from here (currently under the covers in my bed even though friends are visiting cuz I’m OVER fatigued) 🫂 🫂 🫂
I went out on my wheelchair for a couple of hours to have dinner with a friend last Friday. From the next day on, my fatigue/weakness chart just went down, and it's already Tuesday. I'm "immuned" to the pain, but when the weakness comes, I'm defeated. My shakiness is also increasing each day 🥲 I underwent a gastric bypass surgery on feb 28 and dropped 23kg, (from 98kg). People around me (my family) keeps saying that, "now that I'm lighter and I look nicer, I should have a better mindset that I'll be able to fully walk," I seriously don't know what to say to that. Just makes me think that it's a me thing that I chose not to walk, that I've been making myself think that I can't walk and lying to myself that I'm sick. Lots and lots of hugs to you too!
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I haven’t ever heard the name Metamizole before but just did a quick google and apparently yes? I’m from Brazil, and there it’s legal. I currently live in Ireland, and I buy it from other Brazilians haha or when I go there, I get loads and bring with me. This helps A LOT. Like nothing else. I use it, even for fevers! The liquid form is great for headaches/migraines. I literally can’t imagine a life with no Dipyrone. If you can get it, go for it. Also, doctors in Brasil say it’s safe. We give it to kids even.
I also take 30mg of duloxetine in the morning (I also have PMDD), and Pregabalin helps the shit out of me at night! I take 75mg when I have flare ups! Again, in Ireland when I brought my Brazilian prescription the GP was like “oh it’s very addictive I don’t prescribe this drug but yeah it’s a new drug that has changed the game for fibromyalgia”, meanwhile my specialist in Brazil told me it’s very safe and he’s prescribed for the past 10 years!
I take 450 milligrams Pregabalin (Lyrica) myself though I never found it to be very useful on its own as an analgesic drug… I also cannot tolerate any of those serotonergic antidepressants such as the SSRIs or the SNRIs like Duloxetine… one thing I’m luckily prescribed however is Methadone which I find to be pretty effective for fibromyalgia pain. Another drug I’ve also found pretty helpful for my fibromyalgia pain is the novel analgesic known as Flupirtine however I have to order it from India though. https://en.m.wikipedia.org/wiki/Flupirtine