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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.

bustrbrwn22 | @bustrbrwn22 | Oct 8, 2020
In reply to @jesfactsmon "@faithwalker007 Wow, that is an amazing description of your pain Renee. I have a much clearer..." + (show)
@jesfactsmon

@faithwalker007
Wow, that is an amazing description of your pain Renee. I have a much clearer picture of, if not WHAT you are experiencing (I'd have to feel it to do that), but actually where it occurs and how it moves and develops in your body. I can feel your frustration and impatience at what this is doing to you and even the fact that it's happening and you are pretty much at the end of your tether over it.

A few minutes ago I was reading the account by @jerid of her case of shingles and the unbelievable and virtually indescribable intensity of pain that occurs with that illness. I think that is part of the frustration of pain sufferers, that they can not communicate to others exactly how terrible experiencing their pain actually is. It's impossible. My guess is that if EVERY person on earth (including all doctors and researchers) were forced to experience pain like she (and you) are trying to convey for at least 30 minutes each and every day, there would be a whole array of effective and safe pain treatments available to all within a remarkably short period of time. Think about it. If everyone knew the level of misery that it is possible for a human being to feel, a whole new level of motivation to find answers would magically open up.

Just a thought. Hank

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@jesfactsmon so well said, Hank. My sister’s pain doctor (according to her) is unbelievably compassionate because his wife suffers from a very painful condition. He always folllows up on promises and even reaches out to other doctors on her behalf. That is what pain management is about.

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bustrbrwn22 | @bustrbrwn22 | Oct 8, 2020
In reply to @faithwalker007 "Neuropathy is what my hubby has in his feet and hands. I have in fingers because..." + (show)
@faithwalker007

Neuropathy is what my hubby has in his feet and hands. I have in fingers because of my carpal tunnel but unfortunately that it not what I have in my feet, back, legs and arms.
CRPS causes what it is called windup. The pain - nerve in nature- begins in my feet or back. My feet feel like they are on fire. Have you ever burned your finger? Had a severe case of case of sunburn? Felt that deep burn when you put ice cold feet in burning hot water? That’s what I’m about except it doesn’t go away. Add tingling like you’re slapping a foot that’s waking up after it’s been frozen for a long time. Then pile on sciatic pain slicing down the back into the heel into the toes along the outside of the foot.
Repeat this in the other side in a quarter measure and in the back at half measure. The right shoulder only acts up if it’s been maneuvering heavy heavy objects since I can’t use my back or Legs to lift anything mainly because I have a torn labrum from my two manipulations to release the frozen shoulder five years ago.
I refuse to let anyone touch it.
Do I want help?
The truth? No I want action. I want to see results. But then again that’s my problem.

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@faithwalker007 I am so sorry for what you are going through. Is there any “movement” we can start to help people who need pain relief? I don’t like the taste of alcohol so I can’t drink myself into abandon like some of my friends have to relieve their pain or anxiety.

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1 reply
summertime4 | @summertime4 | Oct 8, 2020
In reply to @suzanne2 "@jesfactsmon I so totally agree with you! I have been in so much pain the last..." + (show)
@suzanne2

@jesfactsmon I so totally agree with you! I have been in so much pain the last week! But how do I really convey the feeling and degree.? I have no pain medication that helps. I have tramadol which does nothing, I have naproxen and Motrin which do zero, and I am on 1800mg of gabapentin daily to no avail! So I continue to suffer and try to go about my day. I teach kindergarten 3 days a week so those days I really have to suck it up. When I get in the car to drive home I literally collapse before turning on the ignition. At home I drag myself into the house. My husband feels if I can go to work for 4 hours three days a week my pain can't be that bad. But it is I just don't want to sit at home and dwell on it. I did that for 6 months during the COVID quarrintine! But no one will give me give me something that works! Heaven forbid I could have less pain while I teach. So I take bits of THC gummies which are hard to regulate my dose and being ultra sensitive to it makes me a bit dizzy sometimes. Because of my reaction I hesitate to use the gummies.If a doctor really cared they would sit and listen and show care and concern. I have yet to find someone. Needless to say I sit and cry a lot. Sorry I had to vent about this neurological pain!

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@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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2 replies
pfbacon | @pfbacon | Oct 8, 2020

I take 1200 mg of Gabapentin twice during the day because it doesn't make me sleepy and it does make the pain subside. I take Lyrica at bed time because it makes the pain subside but it makes me sleepy so I wouldn't take it during the day. No, Gaba doesn't make me 'high', it just takes the pain away so I can live my normal life. We all react differently to the various meds available so we have to try medicines until we find what works for us. I started with the minimum doses of the most benign meds, then continued with the ones that were effective with the least side effects, then my Neurologist and pain management doctors increased the doses as my condition progressed. Peggy

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pfbacon | @pfbacon | Oct 8, 2020

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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1 reply
Faithwalker007 (Renee) | @faithwalker007 | Oct 8, 2020
In reply to @bustrbrwn22 "@faithwalker007 I am so sorry for what you are going through. Is there any “movement” we..." + (show)
@bustrbrwn22

@faithwalker007 I am so sorry for what you are going through. Is there any “movement” we can start to help people who need pain relief? I don’t like the taste of alcohol so I can’t drink myself into abandon like some of my friends have to relieve their pain or anxiety.

Jump to this post

A “movement” is exactly what we need. I’ve started a petition for legislation in Wyoming. I guess I can make a wider one if need be.
We need to stop being silent. The ADA protects us but we won’t use it.
Wyoming has a suicide rate over twice the National Average. 30/100,000 people. I’m not claiming it has everything to do with chronic pain but it is a factor but we only have 15 Pain specialists in the entire state and its getting harder and harder to get treatment. It’s a recipe for disaster.
I know what the DEA is doing to the pharmacies and physicians here, I was on the receiving end. And I know Wyoming isn’t the only place it’s happening.
If we don’t start speaking out, we won’t be able to.

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1 reply
Faithwalker007 (Renee) | @faithwalker007 | Oct 8, 2020
In reply to @jesfactsmon "@faithwalker007 Wow, that is an amazing description of your pain Renee. I have a much clearer..." + (show)
@jesfactsmon

@faithwalker007
Wow, that is an amazing description of your pain Renee. I have a much clearer picture of, if not WHAT you are experiencing (I'd have to feel it to do that), but actually where it occurs and how it moves and develops in your body. I can feel your frustration and impatience at what this is doing to you and even the fact that it's happening and you are pretty much at the end of your tether over it.

A few minutes ago I was reading the account by @jerid of her case of shingles and the unbelievable and virtually indescribable intensity of pain that occurs with that illness. I think that is part of the frustration of pain sufferers, that they can not communicate to others exactly how terrible experiencing their pain actually is. It's impossible. My guess is that if EVERY person on earth (including all doctors and researchers) were forced to experience pain like she (and you) are trying to convey for at least 30 minutes each and every day, there would be a whole array of effective and safe pain treatments available to all within a remarkably short period of time. Think about it. If everyone knew the level of misery that it is possible for a human being to feel, a whole new level of motivation to find answers would magically open up.

Just a thought. Hank

Jump to this post

Exactly. They say CRPS is the most painful disease known to man but when you Google it, the descriptions are belittled and washed out. Lol It makes me wonder of the medical community even know anything about it. Europe is so much further along when it comes to this disease.
Remission isn’t a possibility for me but progression? That’s something I deal with and focus hard in trying to prevent every day. Stress is a trigger and stupidity from pain doctors is one.
I’m not supposed to do their job but I have to because they know absolutely nothing about my disease state or how to treat it.

REPLY
Faithwalker007 (Renee) | @faithwalker007 | Oct 8, 2020
In reply to @jesfactsmon "@faithwalker007 Wow, that is an amazing description of your pain Renee. I have a much clearer..." + (show)
@jesfactsmon

@faithwalker007
Wow, that is an amazing description of your pain Renee. I have a much clearer picture of, if not WHAT you are experiencing (I'd have to feel it to do that), but actually where it occurs and how it moves and develops in your body. I can feel your frustration and impatience at what this is doing to you and even the fact that it's happening and you are pretty much at the end of your tether over it.

A few minutes ago I was reading the account by @jerid of her case of shingles and the unbelievable and virtually indescribable intensity of pain that occurs with that illness. I think that is part of the frustration of pain sufferers, that they can not communicate to others exactly how terrible experiencing their pain actually is. It's impossible. My guess is that if EVERY person on earth (including all doctors and researchers) were forced to experience pain like she (and you) are trying to convey for at least 30 minutes each and every day, there would be a whole array of effective and safe pain treatments available to all within a remarkably short period of time. Think about it. If everyone knew the level of misery that it is possible for a human being to feel, a whole new level of motivation to find answers would magically open up.

Just a thought. Hank

Jump to this post

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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1 reply
lorirenee1 | @lorirenee1 | Oct 8, 2020
In reply to @summertime4 "@suzanne2 and group I see so many of us prescribed Gabapentin. Some folks on high doses...." + (show)
@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?

Jump to this post

@suzanne2 I was on Gabapentin for foot neuropathy, and it did very little to help. As the Neurologist raised the dose, it still did not help, but did give me balance problems. Eventually, I just weaned off, and my balance returned. No, Gabapentin did not help me. Lori Renee

REPLY
1 reply
lorirenee1 | @lorirenee1 | Oct 8, 2020
In reply to @suzanne2 "@jesfactsmon I so totally agree with you! I have been in so much pain the last..." + (show)
@suzanne2

@jesfactsmon I so totally agree with you! I have been in so much pain the last week! But how do I really convey the feeling and degree.? I have no pain medication that helps. I have tramadol which does nothing, I have naproxen and Motrin which do zero, and I am on 1800mg of gabapentin daily to no avail! So I continue to suffer and try to go about my day. I teach kindergarten 3 days a week so those days I really have to suck it up. When I get in the car to drive home I literally collapse before turning on the ignition. At home I drag myself into the house. My husband feels if I can go to work for 4 hours three days a week my pain can't be that bad. But it is I just don't want to sit at home and dwell on it. I did that for 6 months during the COVID quarrintine! But no one will give me give me something that works! Heaven forbid I could have less pain while I teach. So I take bits of THC gummies which are hard to regulate my dose and being ultra sensitive to it makes me a bit dizzy sometimes. Because of my reaction I hesitate to use the gummies.If a doctor really cared they would sit and listen and show care and concern. I have yet to find someone. Needless to say I sit and cry a lot. Sorry I had to vent about this neurological pain!

Jump to this post

@ 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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