Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@lorirenee1

@ To all my pain warriors!!!!! I get so saddened for all of us. People and even our doctors, don't really understand. Yes, there are some good doctors, that really try to do their best, but "THE STATE OF THE ART" with chronic pain is entirely limited. Most drugs barely work, and few patients are lucky enough to respond well with limited side effects and lowered pain. The opiod crisis has made it almost impossible for the pain patient to get the medicines he needs. And truly, unless you experience this relentless, unstoppable pain, you don't quite get it. And you shouldn't, really! I think we all have protective mechanisms inside ourselves that buffer us from human suffering. It is way too much to hear, to think about, to really feel. Even my pain doctor really does not like to talk about pain!!!! I swear, the guy does not like it!!! He is more of a "fixer" type. He can handle the epidurals, surgeries, etc., but the discussions make him squirm. I actually think he is a softie. But I really can't talk to him. Those of us who have even one person to really hear, are very lucky. The mechanisms of pain are getting more and more understood. The treatment seems almost not there. The insidiousness of CRPS is astounding. How it can morph, go from one place to another!!! The Science behind CRPS is unbearable to even read! Pain in itself, is a disease. It spreads, it morphs like an evil monster. I told God to give me a day I could handle today. I told God to not give me more than I can handle. I told him to keep an eye on me. I wake up, each new day, with both hope, and terror. In a blink of an eye, goes anyone. May God bless and keep all of you, Lori Renee

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Thank you Lori for saying it so well. They just don't understand it they make it more and more difficult for us to help us because pain I fix everything in our lives in our body and our soul. If they only understood how important it is to have the right pain doctors and understanding of how to treat us. Depending what kind of doctor you see and if you see a neurosurgeon they want to operate. Hey doctor want to put stimulators in you that's where they make their money cuz they don't make any money dispensing opioids. I had to pain doctors drop me because they didn't want to treat me anymore cuz they couldn't understand my pain and my condition called arachnoiditis. They don't know how to treat it and they don't know what it is and I don't know how to diagnose it and whether I still have a spinal leak. Anybody can help me on that matter I appreciate it. Right now I'm in emergency room we paid on my left side and I don't know what that's coming from. Thanks Donald

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@donfeld. My thoughts are with you as you are in the hospital. Please keep us posted!

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@lorirenee1

@ To all my pain warriors!!!!! I get so saddened for all of us. People and even our doctors, don't really understand. Yes, there are some good doctors, that really try to do their best, but "THE STATE OF THE ART" with chronic pain is entirely limited. Most drugs barely work, and few patients are lucky enough to respond well with limited side effects and lowered pain. The opiod crisis has made it almost impossible for the pain patient to get the medicines he needs. And truly, unless you experience this relentless, unstoppable pain, you don't quite get it. And you shouldn't, really! I think we all have protective mechanisms inside ourselves that buffer us from human suffering. It is way too much to hear, to think about, to really feel. Even my pain doctor really does not like to talk about pain!!!! I swear, the guy does not like it!!! He is more of a "fixer" type. He can handle the epidurals, surgeries, etc., but the discussions make him squirm. I actually think he is a softie. But I really can't talk to him. Those of us who have even one person to really hear, are very lucky. The mechanisms of pain are getting more and more understood. The treatment seems almost not there. The insidiousness of CRPS is astounding. How it can morph, go from one place to another!!! The Science behind CRPS is unbearable to even read! Pain in itself, is a disease. It spreads, it morphs like an evil monster. I told God to give me a day I could handle today. I told God to not give me more than I can handle. I told him to keep an eye on me. I wake up, each new day, with both hope, and terror. In a blink of an eye, goes anyone. May God bless and keep all of you, Lori Renee

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Lori, God is the only Strength I have to get through today. Yes, some days it’s more than I can handle. He doesn’t promise that He won’t give us that but He does say He will give us the Strength that surpasses all understanding and I can get through anything with Him.
Did I count on it being a life with congenital hearing and sight difficulties, IBD, a frozen shoulder for two years and arthritis for 15, and now, of all things, CRPS? Of course not.
But I stopped looking in the past and dwelling on my future long time ago. I can’t waste energy on them. Lol
You probably know exactly what I’m talking about too!
My body is ravaged every single second and I must focus on quarantining my mind from that torture.
Most everyone in this nation is preoccupied about COVID-19 right now. I could care less. Why?
Why worry about getting a virus that has a 2% mortality rate when I already live in hell today.
And if the truth be known, I’ve seen a multitude of physicians since 2017 and only one has listened AND understood what I’ve told him about my life of pain and that was Dr. Angelo Santiago, the neurologist who spent 9 hours diagnosing me the day I saw him in February of 2018. Why? He spent a year learning how to walk, speak, and practice his craft again after an automobile accident nearly took his life.

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@faithwalker007

I did the last part of your post yesterday in fact. Shame on me. I was reading something political on Facebook and I was at the peak hour of my pain cycle (right before my next pain meds) and some idiot made a stupid comment and I said the same thing or something like it.
I dared him to walk an hour...a day in my shoes and maybe his perspective on life in this Nation, of this World may change.
Of course he came back with some ego-filled, hate-mongering, racist comment but what am I to expect?

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@faithwalker007 I am so sorry someone would respond in that way. Real, chronic pain that never relents is unbelievably unbearable to deal with. Funny how we commoners can’t get reasonable doses of pain meds but I just read about another celebrity who’s in rehab for an ungodly amount of OxyContin daily. But it keeps happening for celebrities and billionaires. Sorry if I come across spiteful but it isn’t fair.

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@pfbacon

I found doctors who listen to what I'm concerned with and try to help me with that. I have been to doctors who don't listen, they ask the questions the computer tells them to ask and prescribe what the computer tells them to. I left those doctors and kept looking until I found ones that listen. Peggy

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@pfbacon I had a doctor accuse me of shopping around because I was not getting relief from the gaba and cymbalta etc. I was so taken aback I just sat there and left when he asked if he could do anything else for me.

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@summertime4

@suzanne2 and group I see so many of us prescribed Gabapentin. Some folks on high doses. I am taking 600 mg a bedtime (No don't sleep} and pain management and neurologist say that is a baby dose and I need to go up. Why. I don't see a difference except during the day it makes me tired at 900 mg which she wants me to take Everyone I talk to takes gabapentin even those without neuropathy. How many here are prescribed gabapentin and do you see a difference in your pain level? Thank you. Oh I did hear that it acts as a sedative. Is that so for anyone?

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@summertime4 I’ve been on the maximum dose and it did make me groggy but not enough to actually sleep. It did nothing for the pain. I did take a couple falls down the stairs though when I didn’t get my timing right to go to bed. After the 3rd fall I got off of it. It also did not help my anxiety or depression.

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@faithwalker007

Lori, God is the only Strength I have to get through today. Yes, some days it’s more than I can handle. He doesn’t promise that He won’t give us that but He does say He will give us the Strength that surpasses all understanding and I can get through anything with Him.
Did I count on it being a life with congenital hearing and sight difficulties, IBD, a frozen shoulder for two years and arthritis for 15, and now, of all things, CRPS? Of course not.
But I stopped looking in the past and dwelling on my future long time ago. I can’t waste energy on them. Lol
You probably know exactly what I’m talking about too!
My body is ravaged every single second and I must focus on quarantining my mind from that torture.
Most everyone in this nation is preoccupied about COVID-19 right now. I could care less. Why?
Why worry about getting a virus that has a 2% mortality rate when I already live in hell today.
And if the truth be known, I’ve seen a multitude of physicians since 2017 and only one has listened AND understood what I’ve told him about my life of pain and that was Dr. Angelo Santiago, the neurologist who spent 9 hours diagnosing me the day I saw him in February of 2018. Why? He spent a year learning how to walk, speak, and practice his craft again after an automobile accident nearly took his life.

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@faithwalker007 you make absolute sense. I shouldn’t be scared of Covid but if I get it I am afraid my lichen planus will go out of control and it isn’t pretty all over your body. It’s embarrassing and disgusting to apply cream everywhere, in embarrassing places, twice a day looking forward to your skin getting thin. I do live in hell and unfortunately my husband has to, too, because I can’t do much

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In reply to @faithwalker007 "SMH... wow" + (show)
@faithwalker007

SMH... wow

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@faithwalker007 What does SMH stand for? I’m a little older. Thanks!

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@bustrbrwn22 ..Not being afraid of Covid is Crazy talk ... one never knows how your body will respond.. Unless you have a team of doctors standing by with a helicopter or two ... Stay away from COVID Exposure.. I think I won't bother reading such nonsensical emails..

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