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.

Tw/cw (trigger warning/content warning): Suicide
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tw/cw are abbreviations that I learned from mentor @ayeshasharma. They stand for trigger warning and content warning to alert people that the following message includes content that could be triggering for some people. I thought that I would introduce this here as some of the recent posts are talking about pain and how it can lead one to consider the act of taking their own life.

I like that Connect is a safe place where members can talk openly about the value of living and what they live for as well as the very difficult and real challenges of disease, pain and deteriorating quality of life. This frank discussion thread, started by JimHD, is a great example of the honesty and vulnerability that members are willing to share for themselves and for others:
- I survived suicide attempts https://connect.mayoclinic.org/discussion/i-survived-suicide-attempts/

In addition to talking here, I would also like to remind people about the 988 Suicide & Crisis Lifeline.
The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, in the United States.

- Call or text 988
- Chat with a counsellor at https://988lifeline.org/chat/
Chat is available 24/7 across the U.S. You don't need your phone. You can chat on your computer.

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It's been a long time since posting to this group. I just started following a few of the emails on Opioids restrictions and reading the members thoughts on suicide living with this horrid, okay extremely tough, condition, no matter the individual particular condition. Pain is pain, and we shouldn't have to live with it, if there are alternatives. A few years ago I'd be hard pressed to respond as I was mostly bed bound with the tiniest of exertion causing extreme burning pain throughout my entire body. What the maximum dosages of Lyrica, Cymbalta and high dosages of Amitriptyline and Topiramate, and the $8000 in Supplements I purchase from my Functional Diagnostic Nutrition doctor has done is give me breadth in the amount of exertion it takes to set off that cascading pain from hell, though from no fault of my own, some weeks it just comes. I have a blanket behind my chair, here, with a pillow, which is where I spend many of my entire days, in pain and in and out of sleep.

I am on Buprenorphine now, after the pain management folks got a win notched in their belt taking me off of the Fentanyl Patch. I mentioned thoughts of suicide, big mistake, and that's all it took. Who wouldn't have those thoughts when in that amount of pain? I was asking for more, a higher dose, which I know from going there at times, not to get high, and nothing dangerous, but I could live, have a life, with far fewer negative symptoms compared to being in a fetal position because every nerve cell in my body is exploding in burning pain.

So, now I'm at the same place with the Buprenorphine. I know a slightly higher dose has a very positive effect on my situation, with little effects on my mental state. I hate feeling high, and not feeling in control. When I tell the doctor, or Nurse really, the drug is going to the pain, I mean it. But, I'm told, no, you're at the highest dosage that according to the medical literature has the most benefit against side effects. But, I just explained to you that it does and I didn't have side effects - on the contrary? Instead, lets see if your Disability Medicare will pay for a drug pump to be surgically implanted, with a cocktail that the local doctor comes up with, so we can have full control of your pain, and later scratch your heads and say then, well there's nothing more we can do for

However, I will say to those who find themselves in excruciating pain right now, that it will no doubt get better over time. I know that's little consequence when you're in the middle of that pain, but even that pain will subside some. The fact you reached out to this group is already a huge step. I know it's hard relying on others to fight for us, but you have to have faith your situation will get better, because most likely it will. If you're able I do recommend a good FDN Doctor, usually outside of insurance, though mine started taking insurance, just not mine. I put much of my recovery with her.

For those fighting for us, thanks! I see some URLs here, but if there are better ones, I have control of a Fibromyalgia WEB site, that it's time it's taking up the cause.

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@faithwalker007

It’s actually on change.org.
https://www.change.org/NewOpioidLeg2020

I appreciate any and all support we can get!

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@faithwalker and to all my Pain Warriors!!!!! I have just posted the petition from change.org to my facebook page. I will try to make people aware!!!! Renee, you are a soldier!!!!!! Your spirit amazes me!!!! Lori Renee

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@laluzhiker

It's been a long time since posting to this group. I just started following a few of the emails on Opioids restrictions and reading the members thoughts on suicide living with this horrid, okay extremely tough, condition, no matter the individual particular condition. Pain is pain, and we shouldn't have to live with it, if there are alternatives. A few years ago I'd be hard pressed to respond as I was mostly bed bound with the tiniest of exertion causing extreme burning pain throughout my entire body. What the maximum dosages of Lyrica, Cymbalta and high dosages of Amitriptyline and Topiramate, and the $8000 in Supplements I purchase from my Functional Diagnostic Nutrition doctor has done is give me breadth in the amount of exertion it takes to set off that cascading pain from hell, though from no fault of my own, some weeks it just comes. I have a blanket behind my chair, here, with a pillow, which is where I spend many of my entire days, in pain and in and out of sleep.

I am on Buprenorphine now, after the pain management folks got a win notched in their belt taking me off of the Fentanyl Patch. I mentioned thoughts of suicide, big mistake, and that's all it took. Who wouldn't have those thoughts when in that amount of pain? I was asking for more, a higher dose, which I know from going there at times, not to get high, and nothing dangerous, but I could live, have a life, with far fewer negative symptoms compared to being in a fetal position because every nerve cell in my body is exploding in burning pain.

So, now I'm at the same place with the Buprenorphine. I know a slightly higher dose has a very positive effect on my situation, with little effects on my mental state. I hate feeling high, and not feeling in control. When I tell the doctor, or Nurse really, the drug is going to the pain, I mean it. But, I'm told, no, you're at the highest dosage that according to the medical literature has the most benefit against side effects. But, I just explained to you that it does and I didn't have side effects - on the contrary? Instead, lets see if your Disability Medicare will pay for a drug pump to be surgically implanted, with a cocktail that the local doctor comes up with, so we can have full control of your pain, and later scratch your heads and say then, well there's nothing more we can do for

However, I will say to those who find themselves in excruciating pain right now, that it will no doubt get better over time. I know that's little consequence when you're in the middle of that pain, but even that pain will subside some. The fact you reached out to this group is already a huge step. I know it's hard relying on others to fight for us, but you have to have faith your situation will get better, because most likely it will. If you're able I do recommend a good FDN Doctor, usually outside of insurance, though mine started taking insurance, just not mine. I put much of my recovery with her.

For those fighting for us, thanks! I see some URLs here, but if there are better ones, I have control of a Fibromyalgia WEB site, that it's time it's taking up the cause.

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@laluzhiker Your first paragraph that you wrote was an utter tear jerker. I am overwhelmed from you and the pain you endure. I struggle with severe pain as well, and your eloquent description was more than I could bear. We poor people here. Just tragic. Lori Renee

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@woogie When my friend who had the NDE told me what it is like beyond the veil I was in awe of her experience

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@bustrbrwn22

@faithwalker007 Please push for Wisconsin too?

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I need to get a little farther in Wyoming’s Legislation — hopefully it at least written and then I plan on writing a National Petition. I will not stop.

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@bustrbrwn22

@sunnyflower @cb772 @lioness if I could find a Pain-free guaranteed way to
End my life I would because of all pain and diseases. The risk is becoming a vegetable or other horrid things. I believe a merciful God would be sympathetic. A friend of mine who really delves into the Bible said as long as you say a sincere Act of Contrition before hand a God will accept you. I am not in imminent risk of suicide it is just too much to bear. My 3rd day in bed.

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I’ve been in those shoes and still am but God gives me the Strength to face each minute of each day. I’ve decided to use that strength to not only survive but make my voice heard not only for me but you.
They won’t shut me up. I have the right to speak, so do you even if it is from a bed you have no business being in. Actually, especially from one.
The problem? People like us refuse to speak up for fear of losing the care we do have. That, my friends, has to stop... now.
No care is almost the equivalent to the care you have, correct? You are not alone. In fact, you are quickly if not already, the majority.
As the disabled community, we have protection under the ADA, and its time we exercise it.

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@bustrbrwn22

@sunnyflower @cb772 @lioness if I could find a Pain-free guaranteed way to
End my life I would because of all pain and diseases. The risk is becoming a vegetable or other horrid things. I believe a merciful God would be sympathetic. A friend of mine who really delves into the Bible said as long as you say a sincere Act of Contrition before hand a God will accept you. I am not in imminent risk of suicide it is just too much to bear. My 3rd day in bed.

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@bustetbrown It is very tough I've been down a day but please read Colleen,s post if you need help contact the suicide line .With God's help you can fight back say the Lord,s prayer till you start to feel better try to do what exercises you can in bed .My thoughts and pray are for you Fight girl don't let this pain take you then you will be defeated

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@jesfactsmon

I think the problem is not the addicts/abusers, the problem is the faulty reasoning which makes certain busybody people think it's their job to force everyone else in the world conform to their personal opinions about life. They try to control what is not appropriate for them to control. People should just butt out of other people's lives and let them make their own decisions about things that affect them alone, and let them deal with their own consequences, i.e. "Live and let live". It might sound simplistic but I do think the world could be a much better place generally if people could just understand this. Hank

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I hear you there, Hank. Now, how do we manage to get opioids to control pain? I have a small, dwindling stash which I draw from only occasionally and they help me feel a lot better. I just take one on any difficult day since I don't want to run out. After about an hour I realize that I don't hurt anymore and that lasts for about 4 enjoyable hours or maybe longer once the pain is muted.

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@sunnyflower

Hello ellens, @lioness, @faithwalker007, yes, the non-legit substance abusers and their tragic overdoses have caused a great deal of opiophobia in the medical community and also tragically, because of this there is some substandard care going on. If only people understood that patients with legitimate pain do not get high from opiates nor does it really take away our pain rather helps us not to jump or pull the trigger. I have been the victim of stigma on more than one occasion and it has made me feel so awful and has changed my entire life because of it. The judgments and opinions are everywhere. It will take a lot of Education to help people understand but I don't see that happening in the media anytime soon rather only, the opposite is what I see all the time. Never do I see opiates indoors for legitimate pain in the media or talk shows Etc.

Warmest regards to all of you and prayers for relief! Sunny flower 🙏🌹😊

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I think the medical providers are running scared from the government enforcers who don't understand that pain users of opioids are not addicts buying drugs off the street to get high. I think they also don't understand that if a person is working with a provider and wishes to stop and needs help with physical dependence, they can be tapered safely. I've heard ignorant people complain that their Dr turned them into addicts--I'll bet they never asked the Dr to taper them. I wouldn't be surprised if some people who are desperate about their pain might turn to the street for drugs. It's occurred to me but I know that would be way too dangerous. That's the effect that the gov't enforcers could have--contrary to their stated goals.

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