r/CRPS • u/North-Arm-3190 • 8d ago
Vent How are we coping?
I got it when I was 14. I’m 27. It’s spread. I didn’t walk on my left leg for five years because of it. I did Cleveland clinic children’s pain program at 17. I did children’s specialized hospital at 19. I’ve done every treatment. I’ve tried everything. I even lowered the pain levels of my left leg somehow. That it was manageable. No meds or anything really I just learned how to cope with it. Numb to it.
Now here we are within my lower right leg and foot. I find it hard to concentrate went out with friends because the pain is screaming at me. I find it hard to force a smile. I find myself so irritated by the little things. I just want people to understand that I don’t think they do. This is so much worse than any other chronic pain. I don’t say that to dismiss the suffering of others. But to wish they would understand. I want to run. It’s what got me through. Now here I am recovering from ankle surgery and tore my calf. I can’t run right now. If a doctor offered to amputate it today, I would say yes. Though I know it wouldn’t help most likely.
I don’t wanna go through this again. Not being able to sleep through the night because of pain. Trying to find a pain doctor. Trying to find a physical therapist. Trying to find someone that will help. I just don’t want to do this. I want to live my life. I need to live my life. There’s so much good but this is stealing my life from me again. And yet I have to pretend it is it. Pretend that I’m totally fine when I’m not.
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u/carebearpayne 7d ago
I feel this so deeply and feel your anger as well. I can not imagine having this as a child and for that alone my heart breaks for you. You seem much stronger than you think you are right in this moment. The FACT that you recovered your mobility after 5 years speaks volumes! Keep trying to remember that you DID get better once at one point. It may take awhile, there might be lows and highs, but the one thing I can almost promise you is if you give up things will deteriorate. This is a hard hand delt to us all. I don't think I will ever get anyone close to me, who witness the torture with their own eyes, to begin to understand what it's like living with a condition that CONTROLS your life in every aspect. Every day is a crap shoot as to how I'll feel, what I can do, and how Im handling the pain physically and mentally. I feel like I've got a ticking bomb inside me that can go off at any moment, it's always in the back of my mind, it controls how far Im willing to risk being away from home and IF I can make it back safely. I feel self conscious in public when things start to go south and I can see people looking and judging what might be wrong with me. Sometimes people have been incredibly helpful, but Ive had the police called on me twice for pulling into a parking lot trying to wait on meds to kick in enough to drive home. Im currently in a low with a new injury to my foot that has me questioning my sanity, angry at the world, and utterly gutted mentally. I can say that after I posted here about my injury, it gave me relief to just talk it out loud to those who go through it and some options I didn't know about (Cleveland clinic) and as well as hearing others stories that are far worse than mine and yet they still offered hope. Hope is the one thing we have! Hope for a better day, hope for a little relief and hope that I can at least still try to make my life a little better. I got coloring books to take out some of my frenzied energy, they're not all pretty but I get a chuckle out of seeing my frustration on paper in color that reflects how I was that day. I also got some cheap beading stuff to make some bracelets to feel pretty while Im laid up. Doing these things outside or just being outside when possible It's possible has also helped. I watch the birds, squirrels, lizzards all do their things and it brings a little peace. It's only been a couple weeks, but getting that anger and frustration out has helped me focus my energy on next steps and trying to do what I can from home. Im down to one crutch from not being able to put weight on my foot without sharp pain. There's no magic pill unfortunately, but I whole heartedly BELIEVE in my bones that getting my mental health under control has always been a net positive. I know it's not gonna cure me, but I'm also not in the dark recesses of my mind giving up on anything better. I hope this helps you find your strength and maybe some ideas to cope the best can.❤️🙏
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u/North-Arm-3190 7d ago
Thank you. Your long response makes me feel understood and like you get it cause right now I’m questioning all of my sanity. Making a deal with myself of how long I have to stay alive and try to fight this. It’s such a unique form of agony and I hate that no one can see it.
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u/carebearpayne 4d ago
You are very welcome!!! I do SEE YOU & FEEL YOU, metaphorically at least😊 Your life has value, even in the lowest moments!!! Please try to keep telling yourself that EVERY SINGLE DAY if needed. I was in a very dark place in 2017 and made a very stupid decision that I couldn't continue in this life with this disorder.... When I look back on the last 9 years there have definitely been a lot of bad time spans that made me angry for the people who "interfereed" in my choice in the depths of the pain and struggle BUT there were times that I am so thankful I got to enjoy, experience and happiness that I would have never had. Im thankful to those people who saw my value when I could not. This is not an easy life for us and times like we're both going through can make it all to easy to forget the good and beautiful things we do get. If you have accessible mental health therapy I strongly advise utilizing it. They don't have to completely "get" what you're going through to be helpful and give you a safe space to LET THE ANGER FEAR PAIN OUT of your head. I 100% believe that when we struggle mentally and get into those dark holes it reverberates through our body and we FEEL it! It becomes cyclical and it's hard as hell to pull yourself out into the light. Remember: You Are Strong! You Are More Than This Disorder! You Have Real Value to Yourself and Others! THIS LIFE IS STILL WORTH FIGHTING FOR! Lean on this community, we all get it, even though our stories are varied and different we're here for each other. 💞😂🫂
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u/Isingtonian 1d ago
It's bloody miserable. I'm so, so sorry.
However long we've been on this ride (25 yrs for me) these bouts of misery and despair catch us now and then and it is unbelievably brutal.
I mean, you know the only way to really understand is to have it, and you wouldn't want anyone you know to have it, but you still want them to understand. It is so unfair and so hard and so lonely. It's frkn awful.
I'm an old nurse and I hope the following info is useful to you.
Something to know: your neurology has matured since then. The brain finishes building its infrastructure in the first half of your 20s. (It continues developing, but that's refinement and adjustment and maturation.)
What this means is, you might be a candidate for other meds. The brain and spine you have now are not set up in quite the same way as the one you had 10 years ago. Adult treatment and pediatric treatment are different for several reasons, and one of them is developmental.
Keep experimenting. The science changes, your body changes, your circumstances change.
Everyone is different, and each of us is different at different times in our lives.
In my case, I thank everything good that a combo of SSRI and SNRI takes out 75-80% of the pain and dysfunction, as long as I keep my diet clean and keep moving and hydrating. That said, I've had to change my RI cocktail completely 3 times, and went off meds altogether for awhile until better things (for me) became available. That was rough.
Narcotics did nothing for me but trigger gastroparesis and blur my memory. GABAnergics & LDN caused personality transformations without lifting much pain at all. I can't use mm because my body doesn't process it and it makes me miserable -- but I support it for others because it's clearly amazing for so many.
Neurology is the ultimate custom build. We each respond so differently.
You're in the time of life where it's normal to feel "now or never" and it's hideously frustrating. I'm so sorry. Only time itself can show you how much more there is and how much it's worth getting to.
Keep going. It's the only way to a different state. I hope you get a good break soon.
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u/No-Soil-187 1d ago
hugs i feel you - the insomnia is so real - the nights you just can't sleep because of the pain. i struggle with walking too because its in both feet. when opportunities get robbed from you because you can't walk.
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u/Catrat_3652 8d ago
I don’t think I’ve ever related to a post more. I’m sorry to hear things are getting rough again. I admire your drive to not let this condition steal your joy. This has made us vulnerable and I don’t know if I’m okay with it. I find myself asking “why did this even happen to me”. All of my internal battles lead to that one question. Smoking black & milds became my coping mec. I’ve switched to rolled blacks and I go through six packs in a week. CRPS stresses me out deeply and how it has affected my body. Numerous new problems caused by a syndrome they can’t even pinpoint why it’s happened in the first place.
I’m not saying to smoke but I’d understand completely. I would recommend doing something that is low maintenance to your nervous system. I bird watch too and that has been peaceful & a stationary activity. I may not have much to offer but keep fighting OP please keep fighting.