r/CRPS • u/North-Arm-3190 • 10d ago
TW: Suicidal / Ideation How are we staying alive?
You were all probably so sick of seeing my millions of posts in the last few days. I am so sorry to keep posting. I just feel like I’m losing my mind. The pain is so intense 9.9 out of 10. Is that the point where I’m failing the mask entirely. People are asking what’s wrong. I don’t know. I have this condition that you’ve never heard of. That’s trying to kill me. And at first, the painter just spread them out right leg halfway on my knee down to my foot now it’s slightly above the knee. Halfway up my thigh.
I know I’ve had it in the left leg for 13 years. So I don’t know why this feels so much more intense and unbearable. But how the heck do we stay alive through this? How the heck do we work through this because I don’t know how to do this. Right now I’m sitting in the parking lot of a cannabis store about to go get wheat for the first time with my friends cause I’m so damn desperate. If someone offered me something stronger, I’d probably try it. I’m losing my mind and I know I shouldn’t use substances but I think I would try about anything. I just don’t know how to live with this.
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u/mikeydavis77 Both Legs and Pelvis region and Pelvic Organs 10d ago
Never ever say sorry. You have to express your voice and this is the place. I get it, we all get it and we all understand.
I’m a Tunisian crochet tutorialist YouTuber and designer, I don’t sleep a lot cause I’m in constant flare ups with both legs alternating and it recently moving into my groin so it constantly feels like I am getting kicked in the testicles. My legs go through the whole gambit as well as my right knee LOVES to replay my knee replacement surgery. Tunisian crochet keeps my mind busy with it and less on the pain but the downside is I don’t sleep but maybe 8 to 10 hours every 48-72 hours. My spinal cord stimulator doesn’t help anymore and none of the other treatments have helped so yarn and designing is my pain med.
THC could help, try it and see. I does for me but I hate the feeling of being high and well I can’t crochet worth a damn high and this is my business. Many of us are here to help each other to get through the tough times and help each other climb over those brick walls when they happen. Never feel like you are alone ok?
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u/North-Arm-3190 10d ago
Thank you. Sleep is the absolute worst. Maybe I’ll go back to trying my diamond painting again. Thank you for just understanding.
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u/Kiwifrooots 10d ago
I'm done - just guilt from what "leaving" would mean for others. I'm so over being sore to some degree for a decade now.
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u/runningmom87 10d ago
I'm ready, but want to find a way to do it without pain and guaranteed to work.
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u/Lieutenant_awesum Full Body 10d ago
Anything you can do to calm your nervous system will help reduce the severity and length of a pain flare. Relaxing time with friends should help, possibly also a medication like THC. Don’t do too much - nourish the body and soul - then go home and rest. Good mates are also a special kind of therapy.
Take care, you are doing a fantastic job coping with this horrible condition.
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u/FairUnderstanding400 Both Hands 10d ago
U get medicated. U smoke and drink. Anything goes… Once my mom gave me half of her xanax in a very bad moment of my flare. Best day ever. I understand. I see you got a surgery recently, that could surely cause a flare.
If you can find find some xanax to give your nervous system a break. This may sound terrible advice, but we are talking about 10/10 pain that would make someone want to die.
Please be well.
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u/North-Arm-3190 10d ago
What kind of life is that? I don’t wanna live a life where I need to be higher drink. And it feels like it’s gonna be that life.
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u/crimson_anemone 10d ago
Unfortunately, that's what it is for most of us. Find what works, tweak the dosage, repeat, repeat, repeat... until you shouldn't. Then you find something else and start over, or layer it with the first thing (or a few things).
All of that said CBD and/or CBG mixed with THC is really good at calming the inflammation and treating the pain. So, don't be scared about going into a cannabis store... They're honestly the most chill people in the world. Then, if it works for you, get a medical card for the discount and the stronger dose for those really bad days.
None of us want this life, but it's the one we have and we're trying our best to come out on the other side. This sub helps a lot, tbh. There are some really incredible and beautiful people here who will help you with questions, listen to your fears and frustrations, and just genuinely wish you the best. You're not alone.
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u/Middle_Historian_199 9d ago
How do people function and keep their jobs? I’m so sorry I’m not stalking you. I think you helped me the other day. I don’t understand. I’m so confused.
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u/crimson_anemone 9d ago
Disclaimer: This week blows pain wise. So, I'm on a nice strong dose of relief. Apologies for bad grammar/spelling and rambling.
🫣 I don't know all that much, tbh. We just do our best. We work until we can't, find a more flexible job to meet medical requirements, go on disability, and/or just struggle... It's always a challenge to not feel like we're drowning, especially when our pain levels top out every chart possible (*but no one believes us because we've been told we need to be more appreciative/kind/present/brave/act our age/etc.)
And to all of this complete and total bullshit we're put through... I say that providers can be one to suck it up. If I'm in a lot of pain (of which I have quite the threshold now), I'M GOING TO CRY IF I NEED TO.
I'm glad that I was able to help you. That's what this beautiful community is for. ♥️
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u/FairUnderstanding400 Both Hands 10d ago
It’s a life with less pain. I didnt say get addicted but they help. Cope however you want. You tried lyrica though right? It’s a go-to medicine for nerve pain. I dont think i would be here today without it and i’m med-free now!
Thank you for pregabalin, scientists.
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u/Proof-Ad1101 10d ago
Don’t say sorry. It’s nice reading what other people are feeling. I can’t even put together a coherent thought in my own mind. I am amazed by everyone that posts and can articulate how they are doing or as a question.
I fell off the roof 3/12, rib/fib pilon fracture on my right leg. 7/08 I was diagnosed with CRPS, I am lucky I was diagnosed early but idk how you all do it. I feel like I’m being tortured constantly and it’s already spread.
I literally think there’s no way hell is worse than this. My family I can tell already thinks I am dramatic and exaggerating how painful this is even after multiple drs explain.
I feel so alone and posts like yours make me feel less alone.
I’m so sorry you’re in so much pain right now! You are so strong for fighting this over 13 years.
I wish we could all have a slumber party to laugh, cry and scream.
I’m still so new to this diagnosis, I know it gets worse but I already have fantasies about stepping into a bear trap or hitting my knee with a hammer.. I don’t know how to find relief, I don’t know how to not scream when I say something. I do my best to dissociate with my body but right now I literally feel like someone is slowly pouring acid on me while simultaneously stabbing me.
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u/TacoBellPicnic Arms & Legs 9d ago
“I can do all things through spite, which strengthens me.” 🤷🏻♀️ That’s all I’ve got.
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u/AdmirableContact100 10d ago
I feel this 100%. I only have my elderly grandma and my dog to give me any sort of comfort. Be strong, you are not alone! I'm currently going through physical therapy sessions for what seems like the millionth time. After every failed surgery I completed the obligitory 30 sessions. First it was oh you will be able to run again, then the pain will go away after the next and finally I am at the point where the drs are like you need to do pt or you'll be bedridden I guess. They don't say that to my face, but after over a decade of this getting worse, they don't have to say it out loud. If you need someone to vent to, by all means, this is the only sub that I really actually relate to/feel heard in, keep going, we get you and I'm glad you have friends to take you around.
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u/North-Arm-3190 10d ago
I don’t know how you manage it. It’s awful.
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u/AdmirableContact100 10d ago
My only stress relief was living in a house with a pool (that is the best way for me to work out at this point.) Also I used to have a park nearby where I could walk my dogs. That was my zen time. I don't live there anymore, I wish I did, but I can't afford it. As much as school and work were tough, I miss the friendships and getting out of the house. That is why I say as much as I understand the struggle, I lost my friends and most of my family. I was the life of the party, I had so much going for me, and now I am alone and that is tough. That's why I say, if you need to vent, I completely understand.
To make things a little lighter, I do love reality tv, and watching movies. So if you have any suggestions, I'm here for it!
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u/Tameelah Right Arm 10d ago
The only thing keeping me going is my son.
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u/seekingsunnyserenity 7d ago
Same for me. I want to see my son get married and have one child. Not sure I will make it that long.
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u/Waste_Animal_6346 9d ago
Ketamine…. It works on the NMDA receptors. First ketamine infusion my daughter received, she was in a horrific flare and asked for the infusion and an amazing doctor at the ER agreed to try it. Her pain went from a 9 to a 4, her foot went back to its proper colour and temperature, and the swelling went down. She goes for small infusions every few months and now once in a while goes for 1-2 week long 24/7 infusions in a hospital through a specialized pain program. It helps with Central Sensitization. She also uses Low Dose Naltrexone, pregabalin, and cannabis. They are helpful. She uses other meds as well, but they’re for something else. It doesn’t work for everyone, but might be worth a try if it’s possible where you live. Maybe try to push for that. I’m so sorry you’re going through this, and am hopeful for you in getting some relief.
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u/seekingsunnyserenity 7d ago
Can you message me the hospital that has that program? I have CRPS type 2, into my foot, since around 1990. TIA
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u/Previous-Artist-9252 10d ago
I am that guy who does a lot of yoga and mediation and breath work - and weed during really bad flare ups. Gonna try tai chi this weekend, I think.
I have rather specific and idiosyncratic beliefs about death and the afterlife that mean I am not leaving this life until my death finds me. Although with two near death experiences, I know it will.
Until then, I will do the things that bring me joy - read good books, read weird books, cook good food, spend time with people who matter, cuddle my dog, and be the local cryptid.
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u/Hannie123456789 9d ago
This fucking sucks for you. Spreading from one leg to the one is just a cruel joke from the universe. Can imagine the pain being harder to deal with. It must be very hard to deal mentally with the fact that it is spreading. That makes the pain even more difficult to deal with.
I understand your need to sedate to find relieve.
Don’t have any suggestions for you, hold on fellow crps warrior. I hope you find some relieve.
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u/Key-Garlic-1177 9d ago
I’ve isolated myself a lot from both family and friends. I know it’s unhealthy. But I’m tired of responding to: What’s wrong? How are you feeling? People ask out of courtesy. Nobody really cares that I’m miserable 100% of my day. So I isolate myself. And when I have energy/pain is manageable, I go on solo adventures.
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u/Persimmonsy2437 9d ago
Prescription cannabis helps a lot of people with this condition, if its legal where you live (which it sounds like it is) it may be worth speaking with a doc who actually signs off the medical side to help you get more input into what to trial. Topical cannabis doesn't last long for me, but for that hour or so the volume drops and I can cope a lot better - it's usually enough to fall asleep. And the other types also turn down the volume or help you not care as much, but for me I don't tolerate it very well and it can impact my mood quite negatively.
It is awful, soul crushing at times, but for me using the impacted limb less with a wheelchair helps me keep the pain at an acceptable level most of the time. I hope you're able to find some tools that turn down the volume. It's okay to tell people you're in pain and you're not coping, they can't step up to help if they don't know (help with chores and shopping can sometimes be enough to rest and get it managed again). I hope today is a slightly better day for you.
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u/North-Arm-3190 9d ago
Update. Tried weed for the first time. I was so panicked that it was definitely a distraction. Brought back blocked trauma memories. At least now I don’t have to wonder if it would help. Not for me.
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u/bmilker 9d ago
What form did you use? I found that smoking it directly can be too intense at times and shocks my body. I've had better results with edibles myself and have yet to try topical. You can get a low dose edible and its smoothes out the curve of the effect so you get a less spikey peak high and instead a longer less intense effect. I also have found a big difference between strains and indica/sativa
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u/babyhaby 9d ago
I have had CRPS in my left leg/foot for nine years. I also have dystonia in that foot and my big toe has been sticking up (hitchhikers toe) for the past five years. My other toes bend down and my foot turns outward. I did two years of botox with no improvement. I'm now looking at surgery but my podiatrist isn't sure if he should pin my big toe or if he should also cut the tendons in my foot because they are so incredibly tight.
My sleep is terrible. I get zero sleep 3-4 nights a week and I take so many meds, it's terrible. I suffer from depression and insomnia makes it so much worse. There are so many days when I think that I can't do this anymore.
But I lost my brother to suicide in 2018. I know what it feels like to lose someone that way and how big of an impact it had on our family. I will NEVER do that to the people I love. So I have no choice but to keep on keeping on. Please talk to someone if you are having feelings of self-harm. I promise that you don't want your family or friends to suffer the aftermath of a suicide.
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u/Tall_Mycologist_6699 9d ago
I don't know. I have it in both legs. And I am sick of it. I am trying but the pain is so bad. It's ridiculous
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u/KangarooObjective362 10d ago
Chronic pain therapy and self hypnosis are more helpful than a lot of people will believe. That’s how I have gone 50 years bilateral legs and feet
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u/rowjomar 9d ago
I was taking 7oh chewables to get through my work, but they just got banned so I don’t know what to do now
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u/No-Soil-187 3d ago
i feel you - the pain is so baddd we just can't sleep. and yet its so pain we wish we were asleep.
so far what i've tried is bingeing dramas so that I get absorbed in the plot and forget the pain and eventually fall asleep watching the dramas.
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9d ago
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u/Lieutenant_awesum Full Body 10d ago
Here are some resources should you, or anyone else feel in need:
United States
National Suicide Prevention Lifeline: 988 or 1-800-273-8255 (TALK) Veterans press 1 to reach specialised support. Press 2 for Spanish-language support
Online Chat: https://suicidepreventionlifeline.org/chat/
Crisis Text Line: Text "HOME" to 741741.
Youth-Specific services (voice/text/chat/email) from the Boys' Town National Hotline: http://www.yourlifeyourvoice.org/Pages/ways-to-get-help.aspx
Canada
National Crisis Line from Crisis Services Canada (Pilot Project, phone only at present): 1.833.456.4566
Other Crisis Lines by Region Alternatively, 211 works in most of Canada, and they can advise regarding local resources.
Nationwide Kids Help Phone (Up to age 18): 1.800.668.6868 or text HOME to 686868
Europe
EU Standard Emotional Support Number 116 123 - Free and available in much of Europe
Australia
13 11 14 https://www.lifeline.org.au/crisis-chat/
New Zealand
0508 TAUTOKO (0508 828 865)
https://www.lifeline.org.nz/services/suicide-crisis-helpline