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.

@pfbacon

I have taken gabapentin every day since 2018 - no side effects - quells my symptons of axonal sensory neuropathy - I couldn't live without it. We're all different. Doctors usually try the most conservative treatment first and if it doesn't work they try another one, and another, until they find something that helps you. Peggy

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@pfbacon I couldn't agree with you more on that. I've been taking it for a year and it also helps me to function; probably be taking it for the rest of my life, which I'm OK with. My Drs and I make a checklist and are currently going down it, crossing off options and checking all the boxes til we get to the bottom with a much different approach for all my chronic pain.

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@peggyedge

Those are the same health issues I have. Doc changed me to Meloxicam which did not cause weight gain.

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Hi Peggy - Meloxicam is a non-steroidal anti-inflammatory (NSAID), a class of drugs that many of us cannot take. It's purpose is to reduce inflammation from things like arthritis, thus relieving the pain. I'm glad to hear it works for you.
Gabapentin is in a different class, drugs used to treat seizures, neuropathy, nerve pain and some other conditions. Sometimes it works for chronic pain as well, but this is a very complex issue. Sometimes it takes a lot of trying, like @rivermaya34 is describing to find a solution.
Sue

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I am only sharing my experiences, not advocating for one medication or another.

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@peggyedge

I am only sharing my experiences, not advocating for one medication or another.

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I didn't read it as advocating. Just wanted to be sure everyone here knew they weren't in the same class of meds. When my arthritis flares I definitely wish I could still use it.
Sue

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I am Terri and new to this group. Have had chronic pain for 22 years. Not sure but I suspect that a fall I had in 1981 onto a stone floor at 8 mos pregnant had a lot to do with this but no problems with pain happened until 20 years later. When Occipital Neuralgia developed on my left side. Also I was gluten intolerant and did not know it. And also had bone spurs in my neck that started causing much pain 20 Yrs after the fall which after MRI in 2001, showed nerve pinching in my neck. That became intolerable so I had micro-neuro surgery in 2007 to have them scraped away. But as is often the case, I received nerve damage from the surgery. And did not know I was in process of developing Fibromyalgia. I have been on only Lyrica for 12 years. Honestly it is amazing that I am still living in 2022. I have an extremely angry CNS. Have extreme cold weather sensitivity so I spend the winter in Fl.

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@irr4et

I am Terri and new to this group. Have had chronic pain for 22 years. Not sure but I suspect that a fall I had in 1981 onto a stone floor at 8 mos pregnant had a lot to do with this but no problems with pain happened until 20 years later. When Occipital Neuralgia developed on my left side. Also I was gluten intolerant and did not know it. And also had bone spurs in my neck that started causing much pain 20 Yrs after the fall which after MRI in 2001, showed nerve pinching in my neck. That became intolerable so I had micro-neuro surgery in 2007 to have them scraped away. But as is often the case, I received nerve damage from the surgery. And did not know I was in process of developing Fibromyalgia. I have been on only Lyrica for 12 years. Honestly it is amazing that I am still living in 2022. I have an extremely angry CNS. Have extreme cold weather sensitivity so I spend the winter in Fl.

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@irr4et Hi Terrie, welcome. I'm certainly glad you are still living in 2022. You explain a pretty bumpy road that has not been easy. I'm sure being on Connect will help you learn from others, and find support along your continued journey.

A lot of what you mention lines up with a chronic pain condition called Central Sensitization Syndrome (CSS). Are you familiar with CSS? Your fibromyalgia, sensitivity to cold, an increase in nerve pain all these years later, really does line up with this condition. CSS is an overactive central nervous system, or as you state, angry CNS. Great way to describe it (I've got an angry one too).

Here is a video presentation by Dr. Sletten from the Mayo Clinic. You may find it interesting, and maybe even resonate with much of what he explains.

Terrie, how you are currently managing your pain, beyond Lyrica? What distracts you from pain and makes you laugh? Do you have an exercise regime?

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@rwinney

@irr4et Hi Terrie, welcome. I'm certainly glad you are still living in 2022. You explain a pretty bumpy road that has not been easy. I'm sure being on Connect will help you learn from others, and find support along your continued journey.

A lot of what you mention lines up with a chronic pain condition called Central Sensitization Syndrome (CSS). Are you familiar with CSS? Your fibromyalgia, sensitivity to cold, an increase in nerve pain all these years later, really does line up with this condition. CSS is an overactive central nervous system, or as you state, angry CNS. Great way to describe it (I've got an angry one too).

Here is a video presentation by Dr. Sletten from the Mayo Clinic. You may find it interesting, and maybe even resonate with much of what he explains.

Terrie, how you are currently managing your pain, beyond Lyrica? What distracts you from pain and makes you laugh? Do you have an exercise regime?

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I am sad to report that I have lost my joy in life but glad to report I have much joy in my faith. Yes I do have very bad CSS and Dysautonomia. Adrenal fatigue also - my BP will not stay up so I have to take Florinef. I live alone in Fl bc my husband is up north and not retired yet. My little grand daughters make me laugh. I walk a lot outdoors when the weather is sunny. I used to do light hand weights and leg press machine but now that makes me flare. I do stretch at home but that increases my pain too. Dental cleanings mean huge flare next two or three days. I do have Ketamine sublingual melts - it only takes 1/3rd to help reduce pain but it’s psychoactive and I must have someone at home with me. That means I have to hire someone. Ketamine does not help me go to sleep. I have a ? - Does a Whole Body Vibration Plate help Fibro pain?

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@irr4et

I am sad to report that I have lost my joy in life but glad to report I have much joy in my faith. Yes I do have very bad CSS and Dysautonomia. Adrenal fatigue also - my BP will not stay up so I have to take Florinef. I live alone in Fl bc my husband is up north and not retired yet. My little grand daughters make me laugh. I walk a lot outdoors when the weather is sunny. I used to do light hand weights and leg press machine but now that makes me flare. I do stretch at home but that increases my pain too. Dental cleanings mean huge flare next two or three days. I do have Ketamine sublingual melts - it only takes 1/3rd to help reduce pain but it’s psychoactive and I must have someone at home with me. That means I have to hire someone. Ketamine does not help me go to sleep. I have a ? - Does a Whole Body Vibration Plate help Fibro pain?

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@irr4et Having joy in your faith is something to hold on tight to. Grandchildren, what a blessing! That makes me happy for you.

I was lost emotionally, physically, and behaviorally, from chronic conditions because I did not know how to treat myself or manage all the chaos that came from it. I very much relate to your flares and set backs. Also, medications aka chemicals, that I used to help my pain, ultimately enhanced my pain and made me loopy in the process. It was an absolute nightmare. A frightening place to be.

Doctors and Specialists are generally not educated in CSS treatment. The person living with chronic pain upregulation from CSS does generally not have knowledge
on how to properly manage their symptoms which is why things just get worse from deconditioning. It's a viscous cycle.

Mayo Clinic in Jacksonville, FL offers a phenominal pain rehab program that helps people just like you and I, and is designed to improve function and quality of life. How far is Jacksonville from you? Is this something you might consider?

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my name is Berge Markarian, 94 years old, have backache due to spondylosis= arthritis of the spine , have had multiple physical therapies, Facet injections , radiofrequency ablations without any result. I just started taking Turmeric, hoping I will have some relief

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@bergem

my name is Berge Markarian, 94 years old, have backache due to spondylosis= arthritis of the spine , have had multiple physical therapies, Facet injections , radiofrequency ablations without any result. I just started taking Turmeric, hoping I will have some relief

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Don’t expect anything! It didn’t work at all for my neuropathy!

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