July 22, 2023 at 6:49 pm #445310crps2010Participant
I guess I should introduce myself first. My name is Bryan, I have been living with Chronic Regional Pain Syndrome since 2010 when I was injured at work. I have been to many pain clinics, seen armies of doctors and tried pretty much all treatment options including experimental ones. Nothing really helps my pain at all at least medication wise, except for marijuana but it is no miracle for my pain either. The only thing that really helps is understanding my limitations and not trying to exceed those. This is actually what brought me here today. I exceeded my limitations today, there is no /10 score here unless you’re ready to hear 1000/10. I’m not crying but my body is pouring water out of my eyes, it’s just a reaction to pain. What I did to earn my over the top pain today is worth it to me though. What did I do? I helped do a big tidy up, only doing what I could but still enough to feel like I was helpful for a change. The feeling of being useless is the worst so I’ll take any victory I can get even when the cost is high. I know I can’t do this except for once in a blue moon, because pain + depression go hand in hand. I have never gave up on who I used to be, I know my docs think I should focus on being who I am and not dwelling on that but I love who I was. I used to be very physically active, I would get up and run a marathon distance to the next town just because I felt like doing that. I would take a mountain bike up and over the mountains to the next town again just because I could do that. I joined the army for a challenge and found them lacking. I used to hike up the tallest mountains in the middle of nowhere just to enjoy a view. I’m happy I did all those things, yes I’m a different person today but I still achieved alot before the pain started and that is good enough for me.
July 24, 2023 at 12:41 am #445313crps2010Participant
Update : today I am not the same. My pain is so overwhelming its throwing me over the edge. This is the roller-coaster of chronic pain. Some days you tell yourself you can some way some how deal with it, other days you’re looking for the wrong way out.
July 26, 2023 at 11:00 pm #445316TPC_YaYaModerator
It is nice to meet you, I do wish it was under different circumstances.
Finding our limits can be hard because we are still the same person we were before but now there are those limits and all the feelings that go along with the limits. It is frustrating and maddening and emotional and so much more all wrapped up inside us.
I try to remember on those tough days when the roller-coaster has me twirling in every way possible and my strength seems to be gone, that it is okay to not be okay.
We have our hard days, we have our impossible days and I keep telling myself as long as I keep moving forward when that pain monster lets me breath again, then I win, not the pain.
I have lived with pain for 30 years, it started in my early 20’s and I am much older now. I want to say that there comes a time that I found peace with what my life had become however I would not be totally honest with you or myself.
I don’t think I ever found peace, what I can share from my own experience is that once I found my way through the stages of grief over the loss of what once was, it became a little easier to begin to find my journey forward.
That new journey showed me that I was still me, even though I could not do all the things I once did. The acceptance and hope allowed me to be open to finding ways for me to contribute and feel useful and needed and accomplished.
A big thing that has helped me over the years was having support from others who live with pain.
I want to let you know that we have a support group that meets on a conference call every Tuesday. You can read more about the calls here; https://paincommunity.org/tpc-outreach-support-conference-calls-2023/
The calls are every Tuesday at 7pm ET, 6pm CT, 5pm MT and 4pm PT. The call in number is: 267-807-9601 Passcode: 491-268-096 and press the # key.
I hope that this finds you getting over the pain flare that you were experiencing earlier in the week.
My best to you,
TPC Community Moderator
“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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