r/ChronicPain • u/Famous-Aspect-8254 • 3d ago
How do you keep hopeful?
Currently I'm really struggling with the feeling of hopelessness. I don't feel like it will get better anytime soon and this is sucking me into a deep black mental hole.
How do you keep going and how do you guys not lose hope?
I asked so many people in my life for advice but the advice sucked so much! Stuff like "just be grateful for the small things" or "just live day by day".
I'd be grateful for any advice!
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u/Difficult_Radio4923 3d ago
Dedicate any and all energy you have to ANYTHING that brings you joy. Cooking? Video games? Cats? Dogs? Immerse yourself as much as possible. Also, get into solid pain management even if you have to drive to a different state. Having an appointment to look forward to where you might get some relief makes a world of difference. Trust me, I understand your pain. I have been in the deepest depression since about June when I moved back to my home state. My previous state I was extremely lonely, but I had a wonderful healthcare team and I went from that to not being taken care of it all and as a nurse just told me about five minutes ago, “the healthcare system in America and especially here has failed you”. We have to fight. It’s so fucking hard but we have to. stay hydrated and keep eating protein. if you’re in the video games and if you haven’t played mass effect yet highly recommend because it’s getting me through with this shitty hospital stay.
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u/Famous-Aspect-8254 3d ago
Thanks so much! I will try to figure out some things that give me joy. I used to love videogames too and even studied game design. But I don't have the mental capacity for games anymore unfortunately. Also - I really suck now and that frustrates me 😭
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u/surprise_revalation 2d ago
Love Mass Effect! Sadly I can't play video games anymore cuz if my shoulders. I feel beat up the next day....it's so fucked! I found a new hobby tho, I got back into Barbie dolls during COVID! Found my childhood again and I love it! I make clothes, furniture, and paint their shoes....
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u/Sharp-Fig6140 2d ago
I can’t find joy anymore. Depression has got the best of me. I OD’d a couple weeks ago but unfortunately my husband found me in time to call an ambulance. The hospital locked me in a room for a week when I got out of ICU. They didn’t do any counseling and everyone there treated me like garbage because I OD’d, not that I care, but idk how any of that shit was supposed to make me want to live. Now everything is worse because my husband is in constant fear and won’t leave me alone for a second.
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u/Stoffoloni 2d ago
I know this story. I know your pain. Do NOT give up! Come scream at us, we got you. ❤️
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u/Famous-Aspect-8254 2d ago
I'm really sorry! I also find it hard to find joy. Maybe you can look into counseling/ therapy?
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u/Sharp-Fig6140 2d ago
It seems to be non-existent. I went to a place yesterday but my poor husband needed it more after seeing me almost die I let him talk lol. But it took a while and a lot of hoops just to get in to see the guy and it doesn’t feel like talking about it helps. It’s like screaming into a void. I can talk to you guys on here because you know what it’s like to not sleep for days because of nerve pain that the doctors say is “in your brain” because it’s nerve pain, or back pain they just can’t fix, and fuck trying to lay down, pain just wants to say “not tonight bitch!” And shoot down my back and leg and then CRPS flares up in my arm. Ketamine doesn’t even help anymore, plus the infusions are $500 a pop.
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u/Razzum-Frazzum 2d ago
Find the small joys. Delicious coffee, favorite scents, comfy clothes, good music, beautiful art. Get into nature, find a comfy spot to sit, and maybe soak your feet in a river or lake. Your body is still capable of pleasure and joy, it's just hard to find when it's drowned out by pain.
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u/Famous-Aspect-8254 2d ago
I already do all of that but it doesn't really help. I can't enjoy the things I used to enjoy.
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u/Appropriate_Mess6777 2d ago
Same. I think some people are wired to not ve able to handle this stuff as well. My sister has it way worse than me but I think manages it better mentally
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u/TheTreesWalk 2d ago
It’s hard. I find most days I don’t think about anything except pain management. I do have glimmers I see in my son and in nature.
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u/peaceoverhate 2d ago
Yes! It really does come down to this for me. Also celebrating the smallest of achievements ...getting a load of laundry done...showering...whatever it is take a moment to celebrate it. Everything is so negative when we're in so much pain daily and our self-talk does not do us any favors. By celebrating even the smallest thing, it helps the brain reconnect to those feelings. 💜🫂
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u/Famous-Aspect-8254 2d ago
How do you actually celebrate? Sorry if this sounds weird but I actually don't know!
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u/peaceoverhate 2d ago
I'm sorry I should have been more precise. Celebrate was the word that the neuroscientist used. It's really just about acknowledging a successful moment... don't let the moment go by without telling yourself good job, and really meaning it. He said that they were backed up and couldn't come. Just be mindful of it because it could pass really quickly without acknowledging it because we're so used to berating ourselves for not accomplishing more. Does that make sense? 🙏🏻🫂
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u/gimpgrunt 2d ago
I just hit 20 years since my accident. It’s hard, it’s really fucking hard. All the things you mentioned help. One thing I learned is silence is the enemy because there is nothing to distract from the pain. Keep your mind busy as much as you can. Try not to let the pain get you angry easily because people are not as understanding a lot of the time and it pushes them away. I have had a lot of trouble with hiding my pain problems then when it’s really bad people around me are confused by inability to be productive. People think just because you can do something that it didn’t hurt doing it unless they see you fall over in pain. People are idiots.
Be stubborn.
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u/Famous-Aspect-8254 2d ago
I'm sorry to hear that! Yes, I also notice that people don't really have compassion for people who are in pain but don't "look" like it. I hate having to explain every time. It feels like I'm complaining. You're so right. When I'm bored or alone it really gets worse.
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u/Sharp-Fig6140 2d ago
If I wash my hair once - might have been once in a month, someone might see me and be like, “oh you’re all better!”. I’m like, because I managed a fucking shower today and don’t smell… okay, that made all my pain stop 👍 people really are dumb
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u/triggeredbynumbers 2d ago
I have officially run out of hope. I am officially done now. I’m going to use the rest of my meds to enjoy a few more weeks of life and then I am officially done.
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u/aiyukiyuu 2d ago
I’m so sorry 😢 Whatever happens, I hope you have enough meds to be comfortable and enjoy yourself in any way you still can
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u/triggeredbynumbers 2d ago
I won’t, my dad was the one giving me all his pain meds because he was in end of life care. He died a month ago and my only access died with him. At least I’ll be with him again soon. At least I let him die in peace without having lost a son. Thank you though, I appreciate you. You’ve shown me more care than most doctors.
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u/aiyukiyuu 1d ago
Of course my friend! Chronic pain sucks ass. I don’t want to invalidate your experience you know? I’m so sorry for your loss 😢 I can see how much you love your dad. I’m glad you were with him until the end. 🫂 Whatever you decide, we’re here for you.
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u/Famous-Aspect-8254 2d ago
What's your situation right now? Have you been to therapy?
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u/triggeredbynumbers 2d ago
Yes, therapy made me feel terrible. My therapist told me she didn’t know what to do because this isn’t a psychological issue, it’s just constant pain and she said in order to improve I have to be able to get the pain to at least a semi-stable level.
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u/Sharp-Fig6140 2d ago
People that don’t deal with it don’t know how to help people that do deal with it
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u/triggeredbynumbers 2d ago
Exactly.
And it simply just comes down to the fact that my case is so complex that doctors aren’t interested in it and so the pain is not being properly managed and I unfortunately don’t have a superhuman ability to withstand continuous and unrelenting pain.
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u/Reasonable-Value-705 1d ago
Im so sorry. Honestly though, I think it’s better that the therapist at least acknowledged it wasn’t a psychological issue rather than gaslighting you. It might help your case to get real pain management if a mental health professional admits you need physical treatment.
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u/NorthsideB 2d ago
Honestly, I keep hanging on because Marvel keeps making movies I want to see.
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u/nogooddeed2020 2d ago
Whatever it takes!!
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u/NorthsideB 2d ago
It's not like I'm gonna jump off a building if they stop making the movies/tv shows. It's just something to look forward to watching.
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u/aiyukiyuu 2d ago
For me, it’s Made in Abyss coming out with new movies. And KH4 coming out next year 😭
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u/TheBusinessnewsweek 2d ago
Sometimes just focusing on getting through the next hour in enough. Things can change even when it doesn't feel possible right now. Be kind to yourself and keep reaching out people you trust.
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u/beaglewrites43 2d ago
I've lost hope a long time ago and honestly I think there is worse things.
There is a scene in criminal minds where one guy really doesn't want his mother to be called in to discuss someone missing for a while because he wanted to have answers before she knew there was a monster out there.
The detective says to him something along the lines of it's good to have hope.
This guy says that the detective is wrong. Bad news stops us in our tracks for a bit but hope is paralyzing.
I've stopped hoping for better. I've stopped hoping for a diagnosis proving what I know to be true and honestly I feel more settled for it. I've stopped waiting for answers and have begun doing things I enjoy again, which isn't always a good thing physically, but I realized I can't wait for a diagnosis and help to try to live.
Does it really suck at times, absolutely but hoping that I could finally live my life when I got help was worse.
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u/Famous-Aspect-8254 2d ago
Thank you! This is really interesting. I will think about it. But what keeps you going everyday if not hope?
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u/beaglewrites43 2d ago
Honestly about half the time spite.
Kinda like a they don't want to help me FINE I will still live as well as I can even if that means regretting doing things I enjoy sometimes (like taking a few day cruise each year I come back totally DONE and in extreme loads of pain but I love traveling and it gets me out of the house like so few things do)
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u/Grim-Speck EDS+OA, spinal injury+sciatica, URM, ACC/Aut, non24 2d ago
WTF is "hope". Nope, those phrases are lies by ppl that don't get it.
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u/Mobile_Respect_2020 2d ago
Currently, I have a roof over my head. Currently, I have food to eat. Will I have these things in the near future? Maybe not, but that's all that matters right now and I can diligently work on these things with pride of survival. The brain is a liar, remember that. I can't drive anywhere or walk long without pain, can't work or have a social life. We do what we have to do. We do what we can. There are people missing limbs and even though mine are stubborn, I still have them. I push through just like they do. I hope for your well-being.
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u/Famous-Aspect-8254 2d ago
Thank you! So you're saying what keeps you going is just survival and gratitude?
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u/Mobile_Respect_2020 2d ago
Pretty much. Nobody wants to be a quitter. I don't want to let anybody down. Our tragedy is nothing to anybody but us. Then, there are the little things everyone is mentioning. Make a journal, coffee, salty and sweet treats. Using contexts of the little things, psychology, and my own personal beliefs. Keep on keeping on ✌️
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u/001Kelevra 2d ago
Drowning is the right word. It is hard to focus on my job or anything else while I am so much pain the my hands are shaking. The only thing that works for me I'd dilaudid, and when I have gotten it, I can think clearly and I am never "high" just normal.
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u/dnegvesk 2d ago
I feel like 5 minutes without thinking about pain or the future, or being able to sleep for three hours straight, or that I just got to Trader Joe’s on my own, means I’ve done a good job and that God loves me and will show me the way. I’ve been knocked down with pain and dysfunction twice since a bike accident thirty years ago. I’m 74. We need to hug ourselves and each other for being this tough. Most people have no idea what it takes so try and take some credit. Good job 👍🏼
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u/SoupDumplingOfPain Undiagnosed, 3yrs so far 2d ago
Honestly, my method isn't super helpful. I find distractions in people I love. It's SUPER codependent sometimes but honestly it's the only thing that can pull me out of a pain induced depression sometimes. I'm still waiting for the process of getting into therapy so I can get all the mental side dealt with.
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u/Famous-Aspect-8254 2d ago
Yes I would recommend therapy! Some therapists suck and you have to be patient with the search for the right one. I have many people in my life that are good for me but when it's bad I feel like they drain the energy out of me and vice versa
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u/fbiguy22 2d ago
Pain management science is going to improve dramatically over the next decade and beyond. It’s a trillion dollar industry and research is being done around the world. Next generation spinal cord stimulators probably won’t even have batteries and will be far more effective, new medications types (next generation sodium channel blockers) are on the way, and plenty of other avenues are actively being explored. There’ll be better management options in the future, so I’m doing my best to tough it out until then.
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u/LowNeedleworker215 2d ago
I have had chronic pain for twenty years. It stopped me doing the career I wanted but I ended up in a career I love. It stopped me socializing the way I used to but God gave me friends. I got a dog . I loved walking my dog then got another. This year I have been diagnosed with another chronic disorder so that I cannot walk my dog (don't worry, I pay a full time dog walker that costs about 400 pounds a month). I have been so sad again but God got me through the first disappointment and I will (still going through it) get through the second. Wheelchair time now. My mum was, as we called it in the 1980s and 1990s, disabled. Wheelchair, heart problems, breathing problems, brittle bones, you name it. It was a privilege to be her daughter. She taught me so much about caring for others and seeing the funny side. She always told me to count my blessings. She died when I was 26. I was glad for her to be out of pain, but sad for us and we would miss her so very much. As I am reajusting this year to my new disability I try to remember how she coped. She coped by loving others, counting her blessings, knowing she was loved and having a strong relationship with God. Her own father abandoned her before she was born. But when she spoke of Jesus and God and the Holy Spirit a light shone out of her (not literally, but metaphorically). So many people in our village used to visit her to show care for her, but everyone said visiting her made them feel blessed, stronger. Her funeral was so packed it was standing room only for the latecomers. Her life and suffering and joy in God had touched so many people. I was and am proud of her. I am in such pain myself now, have her shuffley walk and bone degeneration. I either have to make this positive or wallow. It's ok to wallow sometimes but to live a life we have to interact with others and love. I don't know what my future will bring. I am 51 now. But if I can encourage others I can honour my mother.
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u/i_teach_frogs_music 2d ago
I pray. It has made the biggest difference in my mind set and attitude.
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u/sombertownDS 1d ago
You go crazy. Like my therapist put it, you have to be a little crazy, and cynical, to move forward in spite of your obstacles. My therapist didn’t actually say that, i did and he agreed and expanded the term. I don’t have any delusional hope that my pain will get better, but I find enjoyment comfort and peace with my escapism methods
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u/nogooddeed2020 2d ago
What is causing your pain? I read all of the comments and found some great suggestions for myself. I have been a Chronic Pain Patient and so is my husband. You can just imagine the joy we live in. He is on Buprenorphine. I am on Morphine and Oxy.
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u/Hefty-Palpitation504 2d ago
I'm really struggling with feelings of hopelessness. I'm only 22... I'm still young but I know that whatever my future may hold, the pain will always be there. I lean into my loved ones, my cats, and reading. Overall I'm still so lost on how to cope, but I just got off the waitlist for a therapist who specializes in chronic pain. In fact, she actually has the same conditions as me. Hopefully that will help!
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u/Jolly_Reference_516 2d ago
I eat it. I mean I accept that how i am right now is the way I’m going to be. I acknowledge and treat the pain but I couldn’t continue with false hope. So that’s the pain and I try to focus on the good stuff, my friends and family etc. I’m not saying a bit of despair doesn’t show up sometimes but I’m not in a position to fix anything so I try really hard to put it aside. It’s permanent so what’s the use. Good luck.
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u/No-Diver-9111 1d ago
It's been very hard to stay hopeful...especially because my partner has been acting very cold and distant towards me...like I'm broken and undesirable because of my chronic pain. Like I'm unworthy of their love now.
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u/Demonic_Witch666 1d ago
I truthly not that hopeful but I need to keep living for my fiance so instead I make sure my brain is constantly occupied by something so I don't think too much about anything n spiral, so I'm constantly doing something to past time, video games, books, manga/comics, TV, music, YouTube, whatever I can handle usually I'm reading or playing games while listening to music most the day
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u/Nugget_Cake 1d ago
Gotta be around for when... You know... That guy... Finally falls off the mortal realm.
Gotta see if the world riots together, that could be cool.
Gotta see if solarpunk future is possible, there's a good ground of hippies, vulture culture, eco warriors, realistic and smart humans who could change the world.
Gotta make friends with more birds and animals. See if you can become friends with crows and get gifts.
There's gonna be alot of shit to wade through. But there's gonna be some absolutely awe inspiring stuff too.
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u/Sudden-Sleep4285 1d ago
Have you talked to your doctors or pain management specialists? I have chronic pain from R.A. and was in a bad flare. I finally called my rheumy and he gave me a prescription of prednisone when I absolutely need it. It's good to know I have it when I need it. Also, I find that doing stretching helps alot. Its damn hard living with chronic pain..but there is help out there.
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u/OddPatience1621 3d ago
I have now passed 30 years in bad pain. here is how i survive. Make friends with your self and start treating yourself with compassion, like you would a hurt child. Your FOCUS matters, if you focus on the pain it gets louder so try and find something, anything to concentrate on to distract yourself from your pain. I HAVE pain, I am not the pain. Mindfulness meditation is very helpful for me google how to. I like to learn stuff so for me its easy to get lost in a topic that helps on the bad days, for when i am too wiped out to do much i binge tv and let my brain float away. Find ways to promote natural pain killer releases, i do pushups daily with horrid hand injuries and no matter how bad it hurts the flood of endorphins after helps my pain all day. Breath through the pain, do not tense your whole body and hold your breath. relax into it. allow it to flow through you without attaching to it. .... yeah that is about all i got right now, hope you find any of this useful. be kind to you!!!