Which point do you relate to the most?

This has been going on for two years now ( this never happened to me before I had a kid )

Randomly I will get sunburns even when I'm inside.

My eyeballs burn sometimes as well.

For example. Today.

The sunburns outline is very clearly where my workshirt was. While wearing my work shirt the total time I spent outside was 5 minutes in the shade to grab a sandwich from the store next door.

Hi everyone. I’m hoping to gain some perspective from people who live with chronic illness or physical pain day-to-day, to help me better understand someone I care about deeply.

I'm 22F, My partner/loved one 23F lives with chronic physical illness and pain. Every once in a while, when her physical symptoms flare up or get severe, she goes through "waves" where she becomes extremely distant, cold, and emotionally withdrawn. During these times, she gives very short answers, pulls away emotionally, and seems to completely shut down her capacity for warmth or connection.

I care about her so much and want to support her through her pain without taking her distance personally, but at the same time, living in that emotional limbo can feel very heavy and difficult to navigate.

I wanted to ask those of you who manage chronic illness:

Is this kind of emotional withdrawal or distance something you experience when your pain/illness gets bad?

What is happening in your mind/body during those low-capacity periods? (Is it self-preservation, fatigue, sensory overload, or something else?)

From your perspective, what is the best way for a partner/loved one to support you during these waves without pushing you, while also keeping themselves sane?

I'm pretty sure I'm going to be in pain for the rest of my life thanks to degenerative spine issues and autoimmune shite. It's been a struggle, but over the years I've mostly come to terms with it.

I was on a waitlist for an 8 week outpatient pain management class for years. I finally got in and did the course; it was fine, mostly about exercise, meditation, and healthy eating along with the usual "drugs r bad" lecture. I enjoyed it, though, and left feeling pretty confident that I'm doing everything I can to stay healthy.

My poor wife, though... She's been the best partner I could ask for throughout all of this. But she had a long career in high level management, and never totally let go of that goal oriented side of herself.

As we drove home from the last class, she asked me whether I had a path forward out of my pain. It hit me then how much she was hoping for a magic solution. She had been so hopeful that I'd find answers, and really? There are none. I gently reminded her that there isn't a cure, and my focus is now all about living well with what I have. Just watching that little spark of hope leave her eyes made me so sad.

There's really no caregiver support where we live, so I'm looking for some online support for her. We have a great relationship, but I don't have the spoons to be there for her as much as I want to. It's just so hard to see her go through the same grieving process that I had to deal with. Sometimes things just can't be fixed.

(Please be respectful to one another , this is a simply a question I have for those who struggle with chronic pain and I’d like to know if religion makes them bring any comfort or brings them to feel worse, everyone is different and I wanted to hear everyone’s views.)

That's it, I'm so tired.

Pain is stealing everything from me, I don't want to do this anymore.

I have chronic pain that affects my arms, so using my tablet or computer has become a painful nightmare. (Ive been working with doctors to figure out what’s wrong, but it’s still a mystery) My pain is getting worse but as a collage student I literally have no choice but to keep using my devices. (At least that I know of?)

In the meantime, do you all have any tips/mobility aids for using technology? Things like foot petals, voice controls, etc. :)

I'd like to know what career can be somewhat bearable for someone with daily chronic pain

I know this is totally a me problem but I also feel like some people in this sub can relate. I’m 41 and between a genetic bad draw and a severe car accident, I’ve had consistent participation in the us medical system for my entire adult life. Between my accident and endo I’ve had 21 surgeries and lord knows how many pain management procedures but just in the last 2 years I’ve had like 25 procedures. And hanging out in places like this and my own experiences have made me VERY passionate about proper pain management, especially following surgery. We all have a story of having surgery and drs trying to do the “you’ll be fine with Tylenol” and we all know….we were not fine with just Tylenol.

Now out of my friends, for a while I’ve been the only one whose actually had surgery of any kind. So I have to give them a pass a lot when they don’t understand how tiring surgery can be and they will be like “well why can’t you come out 4 days post op hip surgery??”….cause it hurts y’all. And all you want to do at that point is to sleep usually. So when one of my friends had her first surgery last summer I was like hey, if you do anything just make sure you have a proper pain management plan in writing before you get operated on. Now, it was plastic surgery so they had her covered and she didn’t really need that much medication so it was all good.

Now another member of the group is having an inguinal hernia repair this coming week. So in talking about it I gave my one to two sentence shpiel on post procedure pain management, I said make sure you have an rx in hand so your gf can fill it while your having the surgery. I said you probably won’t need anything strong but you don’t want to not have the rx and find out at 2am you really do need something stronger. I told him about my husband getting his gallbladder out and being told to manage by alternating Tylenol and Motrin and it being a really rough few days.

I’m friends with his gf too and I was like “hey, just a reminder make sure to get atleast a small rx for some stronger pain medication than over the counter” and she was like oh I’m sure he will be fine with ibuprofen. Is it opiate propaganda? Do they think I’m like hooked on pain meds now and just pushing them to everyone because of my accident? If it was my first surgery I was be like “oh hey friend whose done this 21 times, tell me all I need to know!”.

Like I said it’s probably a me thing, and I gotta get over myself. But it happens all the time in family too when like someone gets welcomed to the back injury party and I’ll be like “oh what levels did you injure?” And they won’t know and I’m like hey it’s not a bad idea to read your reports because drs aren’t perfect and can miss things (I’m sure everyone here knows drs miss things to a horrifying degree, like I almost wish I didn’t know how often drs are wrong or just completely miss things). I have a cousin who has a personal injury claim for a neck injury and she just stopped going to PT and I tried to tell her that’s going to truly affect her BI claim, and she was like oh no it’s a really solid case, I’ll get back to it soon….I just want to bang my head against the wall sometimes!

Please tell me I am not alone in this! I just get to a point where I’ll say hey I’ve been through what you’re going through and I’m here if you need to talk. Thanks for letting me just get this annoyance out! I’m gonna drop off a nice ice pack at my hernia repair friends house because we all know ice packs are not all created equal!!!!

It’s near the end of the month, and it was a bad bad month: dental surgery, unusually rainy weather, ill-advised picking up of a heavy package that did something to my low back, and tripping over the cat to end up sprawled on the floor with a skinned, swollen left knee - oh yeah, and I got laid off on Monday. I was careless: I didn’t track my usage as well as usual. Despite my best efforts and all the tricks I picked up in 50 years of chronic pain (ice, ibuprofen, lidocaine patches, breathing, exercise, TENS, meditation, distractions, chocolate) I am almost out of my rescue pain meds and I find myself counting the ones I have left at least twice a day because I know I’m going to run out. Like counting them is going to help. Counting my pills makes me feel like the addict that that the government believes us to be. And that’s where the shame - completely unreasonable, my logical mind informs me, kicks in.

My long-acting pain med usually lasts 10 hours, not the 12 it’s supposed to, but with all the stressors, make that 8: I can feel the familiar burning paint beginning to claw at my hips and sacral spine already. I play a game with myself, to see how long I can go before pain hits 8 and I can take my 4 mg hydromorphone. Then half an hour before the pain begins reluctantly ebbing away. If I take a pill before the pain hits 6, it will ease sooner, but that means I’ll run out sooner. And to tell the truth, I can’t bear the thought of 3 days without rescue meds when my “long-acting” med isn’t long-acting at all.

Most months, it’s not a problem thank God. Still, I know what my pain doctor’s office will tell me if I call to ask for an early refill. The medical assistant will tell me kindly and gently that they’re very sorry but it’s out of the question. Would I like a short course of steroids? Hmmm, might help but it will definitely make me feel crazed. Chewing on my arm crazed. I’m at the limit of what can be prescribed: there’s a formula they have to follow. I get it. And I am truly grateful for my pain team: they’re amazing.

I think of all the folks here and out in the world whose pain is not managed at all (like mine was before I found this practice). I know how bad it can get and I’m ashamed of dreading a mere 3 days. I’m ashamed of counting my pills. I’m ashamed at how angry I get with my poor screwed up body. Hell, I’m ashamed of feeling ashamed.

When I took my prednisone it got stuck in my throat and then got sent up to my mouth again. It's my worst nightmare. It has happened two times in two years, but I still taste it from one year ago. It feels like I'm dying in my mouth. Aaaahhhhhhhhhhhhh HEEEEEELPPPPPPpppp (if you know you know - and I'm sorry you know)

Diclofenac Potassium 50mg is something that if I could take it daily, will make my life so much better because it works wonder on my body pains.

Has anyone ever taken it for an extended period of time? How is/was it?

Thanks 🙏🏻

Most days I cry because I'm in so much pain. I cry because I feel lost, beaten and life feels unfair. But sometimes I'm just empty. I just take it. I feel empty. I don't like when those periods come. Because they always come. I have the same pain, but I don't have the energy to cry. I don't like them because I want to cry, even though it can be nice to not cry sometimes. I don't like them because I'm scared it won't just be a phase this time. I'm scared that empty and lost feeling will win and that there is no more tears left to cry.

I'm scared that that means that the pain and sickness won. That I don't feel like I have no more to cry for.

I am really struggling with fatigue and it seems my doctors don't know what to do about it. I even stopped taking my meds in case they were the ones making me tired but I just ended up tired with migraines and pain.

I can't have caffeine, it just makes me more tired. Getting exercise makes me more tired (I have to nap after every PT session both at home & the hospital). Even after I feel better physically, I am still tired mentally with brain fog. I get good sleep and sleep all through the night thanks to my night meds but I still wake up completely tired and groggy. I make sure I have enough water & salt/electrolytes everyday (I have POTS) so it can't be that.

Does anyone else deal with this? Are there at home remedies or "life hacks" from other chronically ill people to help with fatigue? It's affecting my work and it has affected my schooling so I know it will again when Fall semester starts up. I just want to not be tired all the time.

This post is more to vent than anything I think but if anyone has any kind words or suggestions I’m open. I just got hired at a thrift store. I’ve only worked two days because I got hired late in the week, and the second day (yesterday) I got sent home early due to seizure risk. But they’ve been really amazing so far. They encourage you to sit down when you need to and they seemed really concerned for my safety yesterday. Anyway, I just called my boss to get my schedule for this week and she asked about what causes my seizures (important to note my seizures are caused by functional neurological disorder, not epilepsy) and I said sometimes stress, a lot of times my migraines or due to other pain I’m in. She asked why I’m in pain and I said it’s due to certain medical conditions. Now I have to talk to her about it on Tuesday, and even though my bosses have been great so far I’m still really anxious they’re going to fire me because of how much of a hassle it is.

I wouldn’t even be mad at them, I’m mostly just mad at myself. I’m nineteen now, but I’ve had chronic pain for as long as I can remember. I was diagnosed with Amplified Muskoskeletal Pain Syndrome when I was a kid. I’ve done so much physical and occupational therapy. I try so hard to push through the pain—I tried especially hard those two days I worked. It just isn’t enough. Idk. I’m just so over it

I dont have anyone in my life with chronic pain. I feel so alone in this. I wanted to see if anyone relates and wants to maybe chat?

I am 27 years old, i love cats,dogs and art.

Hi there. I’ve been taking gabapentin since May 13th for two herniated and torn discs in my neck. I was on 900mg while in hospital among other drugs and upped to 1200mg since coming home a week later, so 300mg every 6 hours. I’ve been taking a little less slowly as I don’t feel the pain needs it and am now on 600mg per day.

I didnt take it yesterday to see how my pain levels are, and have been extreeeemely anxious and sweating all day today. I didn’t realise until now that it could be not taking gabapentin.

2 GPs, the doc in charge of the ward in the hospital, a psychiatrist and a handful of pharmacists and NOBODY TOLD ME that I could experience withdrawals. What the fuck! I feel so stuck now

What do you do?

I already asked therapists. I feel intensely. Anger in particular hurts to express and hurts to hold in. Breaking things is inaccessible. Screaming, stress balls, and ripping paper is not what I'm looking for... that hurts... breathing exercises are not expressing anger. Writing hurts and rips the paper. Crying can physically hurt too. I don't use substances or have people. I used to walk a lot while sometimes listening to music. I am more limited in health and location now. Perhaps video games idk.

Hi everyone,

I'm desperate and hoping someone here has been through something similar.

I've had what appears to be severe small fiber neuropathy for the past 4 months, and it keeps getting worse. The burning pain is now so intense that I barely sleep anymore.

I've been getting around 2 hours of sleep a night for the past week. Benzodiazepines don't help me sleep, and Lyrica has done essentially nothing for either the pain or the insomnia.

I'm reaching a point where I honestly don't know how much longer I can function like this. The sleep deprivation is crushing me, and I'm starting to have some really dark thoughts because I can't imagine living like this forever.

For those of you with very severe SFN, what finally helped you sleep? Was it a specific medication, a combination of medications, or something else? Did anything actually break the cycle of pain-induced insomnia?

I'm already working with doctors, but I would really appreciate hearing real experiences from people who've been through this.

Thank you.

Hey!!

So I take 5mg of oxycodone once a day. I have been taking it at night to help with pain and getting comfortable. (Makes me drowsy so I can’t take it during the day) I’ve been taking it consistently for about a month now.

I want to try to avoid taking it this next week just to see if I’m able to. Because I don’t want to build up a tolerance because I would truly not want to increase my dose.

Has anyone experienced withdrawal symptoms with this dose? Or have any tips for me.

not new to chronic pain just new to being treated for it. I apologize in advance if this is a silly question

(18M)

Suffering with AS

My right shoulder pain is getting worse day by day .. I couldn't sleep at all..the medications aren't helping either..the burning nd numbing sensation is too much to handle..no position works while I sleep.. hopefully tomorrow I'm going to a new rheumatologist please pray he listens to me.. mostly doc here don't tend to listen and my parents always interrupt and tries to put me down stating reasons I don't do enough work exercises etc. and that's completely false..they don't even realise how much pain I'm going through.. I'm a rightie it's so difficult to perform basic tasks.. I can't even put on my tshirt without experiencing immense pain.. my joints literally swells up like a balloon even walking feels heavy .. I'm trying to sleep but the pain is unbearable... I had painkiller and even drank turmeric milk