1. < Chronic Pain

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.

Mentor
Ginger, Volunteer Mentor | @gingerw | May 31, 2019
In reply to @jennyannsaal "I have been struggling with Chiari 1 Malformation, really bad, since my Recalled Takata Airbag blew..." + (show)
@jennyannsaal

I have been struggling with Chiari 1 Malformation, really bad, since my Recalled Takata Airbag blew up. I am really having a hard time finding a Patient Advocate, when I do not feel good, which is for the last year, I cannot think of what to ask. I just accept what the doctors say, and go home. I need a counselor, who understands what I am going through. Today rather than removing my swollen Gallbladder, the Surgeon wanted to admit me to the hospital for Failure to Thrive. I have lost 4 inches in 1 year. I have insurance, I cannot FIND a proper Counselor or anyone for that matter, who cares, to even hear the word Chiari. Thank you if you can help me, as we are running in circles, and I am so weak, I am tired of thinking of this, dealing with this. I do not plan on Surgery for decompression.

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@jennyannsaal Welcome to Mayo Clinic Connect. We are glad you found us! We are all patients here; none of us are medical professionals. We can offer our experiences and share what has worked for us but we cannot offer any medical advice. Like @lioness I had to look up exactly what your situation is and oh my goodness! it must be a difficult struggle everyday! Not knowing where you are at can you turn to your County Medical Association for someone to help you? Or can you go to your insurance company or your medical group to find an advocate? Do you have a trusted friend who could accompany you to appointments and help ask the questions or listen to the comments to understand what is going on? Since this condition is the result of a an airbag malfunction are there any resources tied with the lawsuit that you could work with? In putting your private struggle on a public forum, you are allowing us to research in our heads what might be able to be done to assist you. We are grateful that you are here and trust us. Please continue to post and we'll keep trying to figure out some solutions you might try. I am asking @debbraw @grandmar @parus @hopeful33250 to pitch in any thoughts. I hope your evening goes well,
Ginger

REPLY
lillee | @lillee | May 31, 2019
In reply to @grandmar "Welcome @lillelillee ! I do not have any experience to share with you regarding CBD and..." + (show)
@grandmar

Welcome @lillelillee !
I do not have any experience to share with you regarding CBD and I am afraid I don't have any advice at all.
I just want to welcome you and tell you how badly I feel for all that you have gone through.
I may not have advice, but I have a good ear anytime you want it.
FYI...there is a group for those who have taken anti-anxiety and/or anti-depression meds. It is also a great group with lots of experiences. You might want to check out the group.

Have a great weekend...
Ronnie (GRANDMAr)

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well I great ear goes very far more than you think it does. I feel like a experimental patent a lot and lost trust in the medical field completely. I am treated like a druggie and even if I was no one deserves to hurt.98 surgeries my God can't they get it right. I am still got problems that need surgery but afraid. I wish I could find a great pain doctor. My last doctor got busted by the FBI and I am in Alabama so its even harder to find a good doctI am treated better.. We are planning to finish building our home and sell it and go somewhere that

REPLY
2 replies
lillee | @lillee | May 31, 2019
In reply to @lillee "well I great ear goes very far more than you think it does. I feel like..." + (show)
@lillee

well I great ear goes very far more than you think it does. I feel like a experimental patent a lot and lost trust in the medical field completely. I am treated like a druggie and even if I was no one deserves to hurt.98 surgeries my God can't they get it right. I am still got problems that need surgery but afraid. I wish I could find a great pain doctor. My last doctor got busted by the FBI and I am in Alabama so its even harder to find a good doctI am treated better.. We are planning to finish building our home and sell it and go somewhere that

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somewhere I am treated better

REPLY
1 reply
tazscott | @tazscott | May 31, 2019
In reply to @lillee "somewhere I am treated better" + (show)
@lillee

somewhere I am treated better

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I will say that pain management doctors have really failed patients anymore. They spend all they're time worrying about narcotics and covering they're butts. They forget about true pain patients that have never abused meds once. I had a pain doctors a couple years ago that I had been a patient with him for years. I had been using morphine for over 30 years without one issue. With the FDA new guidelines came out he told all of his patients he was stopping all patients narcotics. And I mean every patients overnight. The most ridiculous thing I have ever seen. Thank goodness I have an awesome mayo doctor that doesn't get all involved into the media hype. I pray you find a truely caring doctor that will help you. Because being in pain 24/7 can wear on you so badly. And it wears on you mental health so much too. But we're all here to help if you need it

REPLY
3 replies
grandmaR | @grandmar | Jun 1, 2019
In reply to @lillee "well I great ear goes very far more than you think it does. I feel like..." + (show)
@lillee

well I great ear goes very far more than you think it does. I feel like a experimental patent a lot and lost trust in the medical field completely. I am treated like a druggie and even if I was no one deserves to hurt.98 surgeries my God can't they get it right. I am still got problems that need surgery but afraid. I wish I could find a great pain doctor. My last doctor got busted by the FBI and I am in Alabama so its even harder to find a good doctI am treated better.. We are planning to finish building our home and sell it and go somewhere that

Jump to this post

@lillee
I am sure you are feeling like an experiment!
I also understand that you feel like they treat you like a drug addict.
I went to one pain doc who used to do a urine test at each visit....amazing!
I saw 4 pain docs before I found 'the one' and that was not until I moved to another state after I retired.
It is exhausting and your issues are certainly more involved than mine.
Given the circumstances, it sounds like until you move, help is not really going to happen.
The only suggestions I can think of at the moment is this....
1. Research the BEST hospital that is within your ability to get to. From there, check out all the docs that you think would be able to handle your situation and try to get an appointment.
2. Do things for yourself that might not 'fix' the problems but might make it easier for you to handle such as theraputic massage, warm water aquatics (even if it is PT), a therapist who specializes in pain management (I found a great one).
3. When you do move, find a state where you can possibly get the help you need.
Don't give up!!!!!!!
I know that it is hard to do, believe me, I wanted to give up lots of time.
I know how living in 24/7 pain can exhaust you body and mind.
Keep posting, someone might just have 'the' suggestion for you!!!!!

Have a great Saturday!
Ronnie (GRANDMAr)

REPLY
1 reply
grandmaR | @grandmar | Jun 1, 2019
In reply to @tazscott "I will say that pain management doctors have really failed patients anymore. They spend all they're..." + (show)
@tazscott

I will say that pain management doctors have really failed patients anymore. They spend all they're time worrying about narcotics and covering they're butts. They forget about true pain patients that have never abused meds once. I had a pain doctors a couple years ago that I had been a patient with him for years. I had been using morphine for over 30 years without one issue. With the FDA new guidelines came out he told all of his patients he was stopping all patients narcotics. And I mean every patients overnight. The most ridiculous thing I have ever seen. Thank goodness I have an awesome mayo doctor that doesn't get all involved into the media hype. I pray you find a truely caring doctor that will help you. Because being in pain 24/7 can wear on you so badly. And it wears on you mental health so much too. But we're all here to help if you need it

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@tazscott
Good Saturday Morning,
I do not think that docs are reacting to 'media hype.'
I think they are reacting to the legal system that has bound their hands.
We cannot expect doctors to do things that might land them with huge fines, loss of license or in jail.
As unhappy as these guidelines make me feel, in MY OPINION, I don't blame the docs.
There ARE pain patients who DO abuse their meds, I know a couple who do.
When I talk about 'abuse', I mean using more than is prescribed.
Could be the prescribed dosage no longer does its job, so taking more is a form of 'abuse.'
As I mentioned in another post, one of my former pain docs used to do a urine screening at each visit.
This was more than 5 years ago.
He must of had a reason.
For me, I've always been afraid of pain meds and used them VERY sparingly.
I'd be given enough for a month and maybe use one or two.
When I had spinal surgery, the doc prescribed pain meds in the hospital and for only a week or two after that.
I think media hype comes in when they say that their are less 'harmful' ways to deal with pain.
Let's remember that these legislatures 'react' to some things so quickly without thinking things out.
Also, we have to remember that it is lay people who make medical decisions from the insurance companies up to the legislatures.
Our medical field is certainly fractured and we need 'THE BEST' of the 'BEST' IN THE MEDICAL FIELDS to help make the decisions that impacts their patients (us).
Opppps, sorry, went off on a tangent.
Think I feel strongly about this???????? LOL

Best of the day to you!
Ronnie (GRANDMAr)

REPLY
1 reply
lillee | @lillee | Jun 1, 2019
In reply to @grandmar "@tazscott Good Saturday Morning, I do not think that docs are reacting to 'media hype.' I..." + (show)
@grandmar

@tazscott
Good Saturday Morning,
I do not think that docs are reacting to 'media hype.'
I think they are reacting to the legal system that has bound their hands.
We cannot expect doctors to do things that might land them with huge fines, loss of license or in jail.
As unhappy as these guidelines make me feel, in MY OPINION, I don't blame the docs.
There ARE pain patients who DO abuse their meds, I know a couple who do.
When I talk about 'abuse', I mean using more than is prescribed.
Could be the prescribed dosage no longer does its job, so taking more is a form of 'abuse.'
As I mentioned in another post, one of my former pain docs used to do a urine screening at each visit.
This was more than 5 years ago.
He must of had a reason.
For me, I've always been afraid of pain meds and used them VERY sparingly.
I'd be given enough for a month and maybe use one or two.
When I had spinal surgery, the doc prescribed pain meds in the hospital and for only a week or two after that.
I think media hype comes in when they say that their are less 'harmful' ways to deal with pain.
Let's remember that these legislatures 'react' to some things so quickly without thinking things out.
Also, we have to remember that it is lay people who make medical decisions from the insurance companies up to the legislatures.
Our medical field is certainly fractured and we need 'THE BEST' of the 'BEST' IN THE MEDICAL FIELDS to help make the decisions that impacts their patients (us).
Opppps, sorry, went off on a tangent.
Think I feel strongly about this???????? LOL

Best of the day to you!
Ronnie (GRANDMAr)

Jump to this post

So do I feel strongly about it. By the way Good Saturday morning to you. I have no trust with the medical field. It seems like I am paying for people who don't take their pain meds right. There are people who don't need it and sell it it makes me so mad because we the ones who need it have to pay for their crap. I just don't understand

REPLY
1 reply
lillee | @lillee | Jun 1, 2019
In reply to @lillee "So do I feel strongly about it. By the way Good Saturday morning to you. I..." + (show)
@lillee

So do I feel strongly about it. By the way Good Saturday morning to you. I have no trust with the medical field. It seems like I am paying for people who don't take their pain meds right. There are people who don't need it and sell it it makes me so mad because we the ones who need it have to pay for their crap. I just don't understand

Jump to this post

I don't blame the docs but at some time they give ones who don't need the meds then look at me a double amputee after 98 surgeries with lupus and tell me that they can't give me anything because of others abusing it somethings wrong there ?

REPLY
1 reply
lillee | @lillee | Jun 1, 2019
In reply to @grandmar "@lillee I am sure you are feeling like an experiment! I also understand that you feel..." + (show)
@grandmar

@lillee
I am sure you are feeling like an experiment!
I also understand that you feel like they treat you like a drug addict.
I went to one pain doc who used to do a urine test at each visit....amazing!
I saw 4 pain docs before I found 'the one' and that was not until I moved to another state after I retired.
It is exhausting and your issues are certainly more involved than mine.
Given the circumstances, it sounds like until you move, help is not really going to happen.
The only suggestions I can think of at the moment is this....
1. Research the BEST hospital that is within your ability to get to. From there, check out all the docs that you think would be able to handle your situation and try to get an appointment.
2. Do things for yourself that might not 'fix' the problems but might make it easier for you to handle such as theraputic massage, warm water aquatics (even if it is PT), a therapist who specializes in pain management (I found a great one).
3. When you do move, find a state where you can possibly get the help you need.
Don't give up!!!!!!!
I know that it is hard to do, believe me, I wanted to give up lots of time.
I know how living in 24/7 pain can exhaust you body and mind.
Keep posting, someone might just have 'the' suggestion for you!!!!!

Have a great Saturday!
Ronnie (GRANDMAr)

Jump to this post

God bless you Ronnie and thank you

REPLY
lillee | @lillee | Jun 1, 2019
In reply to @tazscott "I will say that pain management doctors have really failed patients anymore. They spend all they're..." + (show)
@tazscott

I will say that pain management doctors have really failed patients anymore. They spend all they're time worrying about narcotics and covering they're butts. They forget about true pain patients that have never abused meds once. I had a pain doctors a couple years ago that I had been a patient with him for years. I had been using morphine for over 30 years without one issue. With the FDA new guidelines came out he told all of his patients he was stopping all patients narcotics. And I mean every patients overnight. The most ridiculous thing I have ever seen. Thank goodness I have an awesome mayo doctor that doesn't get all involved into the media hype. I pray you find a truely caring doctor that will help you. Because being in pain 24/7 can wear on you so badly. And it wears on you mental health so much too. But we're all here to help if you need it

Jump to this post

Thank you

REPLY
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