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.

@cb772

Snuffy1, hello. How did you manage your pain & what was your answer to pain that makes you feel so much better now. I've given up on doctors because they don't listen to me.

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cb772, hi. After years of taking all sorts of pain meds and lotions, ice, heating pads. etc., I somehow came across an article about the pain relieving benefits of vitamin B6. B6 was purported to relieve inflammation. I used to get some relieve from the non steroidal anti inflammatory (NSAIDs) drugs, but after about 40 years of taking a very old "safer" one, I began to lose about 2 lbs per week, until I had lost some 70 lbs. My GI doctor knew something was wrong, so she had me swallow the medical camera and it showed the reason I was losing weight so fast…my total small intestine was covered with ulcers. Hence she said I should never take another NSAID. After nothing seemed to really relieve the pain, I decided to give the vitamin B6 a try. That was about last November… it didn't do anything right away, but I've noticed that when I take my regular daily meds for blood pressure and thyroid issues, I was not reaching for the pain pills anymore. Looking back, I think it's been at least a month now since I took any pain medication or used any CBD oil rubs. I would suggest you talk with you doctor before starting the B6, there may be medical reasons why he/she has not suggested that to you. Good luck!!

Liked by cb772

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@saleha59

I have a handful of chronic pain issues. Filed for disability in 1997, 6 year battle. I am 61 and from WI.

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Welcome @saleha59, Nice pic. Would you like to add it to your profile?
Here's how:
– How to Update Your Profile https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

What helps you manage your pain? What brings you joy and help distract you from pain?

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@snuffy1

cb772, hi. After years of taking all sorts of pain meds and lotions, ice, heating pads. etc., I somehow came across an article about the pain relieving benefits of vitamin B6. B6 was purported to relieve inflammation. I used to get some relieve from the non steroidal anti inflammatory (NSAIDs) drugs, but after about 40 years of taking a very old "safer" one, I began to lose about 2 lbs per week, until I had lost some 70 lbs. My GI doctor knew something was wrong, so she had me swallow the medical camera and it showed the reason I was losing weight so fast…my total small intestine was covered with ulcers. Hence she said I should never take another NSAID. After nothing seemed to really relieve the pain, I decided to give the vitamin B6 a try. That was about last November… it didn't do anything right away, but I've noticed that when I take my regular daily meds for blood pressure and thyroid issues, I was not reaching for the pain pills anymore. Looking back, I think it's been at least a month now since I took any pain medication or used any CBD oil rubs. I would suggest you talk with you doctor before starting the B6, there may be medical reasons why he/she has not suggested that to you. Good luck!!

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Thank you!

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Hi
Was hoping to get some information on Duloxetine. Would love to hear from people that have taken it and if they were successful?
Thanks

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Hi all, Today's member spotlight features @rwinney, a member well known to members of the Chronic Pain group. Read her interview with fellow member @hopeful33250 to learn more about Rachel: meaningful moments she's had on Mayo Clinic Connect, what motivates and inspires her, and which Hollywood actor would play her in a movie about her life.

– Where there's a Winney, there's a way: Meet @rwinney https://connect.mayoclinic.org/page/about-connect/newsfeed-post/where-theres-a-winney-theres-a-way-meet-rwinney/

+Follow the About Connect page to see all the Member Spotlights and be notified when new spotlights are published: https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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After my unsuccessful nerve blazing treatment I am now trying Cold Laser Red Light Therapy. I refuse to use drugs. I will keep everyone up to date.

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Me too, Jerid — I refuse to take hard drugs … I know I may have to relent some day. My Pain Specialist added Duloxetine to my meds about 6 months ago. I am not sure if it helps; pain is still escalating as the neuropathy spreads. I don't know if it is escalating at a slower rate than it would if I were not taking the Duloxetine. Peggy

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I tried duloxetine and the first night my heart was racing so fast, I stopped immediately. Did u have this when u started? Appreciate any info.
Thank you.

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Seriously check into the Cold Red Light Therapy. I have only been using it for 5 days now, so I can not say yay or nay and I don't want to mislead anyone. Check out a near by massage therapist, chiropractor or order you own online. We have chosen the Laser LRX red light. My husband diligently studied all the cold lasers that are offered. It ran about $1,000.00 and I know for some that may be way out of your price range, but then think about all the $'s being spent on Dr. visits and meds if your insurance is not covering them. It was a bite for us also, but my husband is so caring and sees my suffering and wants me well as much as I do. It is made in Israel and is the latest technology of this device on the market today. I hope this will help at least one person.

OIP

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My name is Renee and I have severe chronic nerve pain from Complex Regional Pain Syndrome. I was diagnosed in February of 2019 after searching for answers from over nine different specialists and providers and numerous MRIs, CT Scans, x-rays, nerve studies, and spinal injections for pain. I was informed by these providers that I had scoliosis, post-surgical inflammation, arthritis, rehab illness, sensitivity to pain and work, and “nothing at all except psychosomatic symptoms.”

I developed severe weakness and pain in my right ankle, side of lower leg, upper leg, and lower back following a right knee replacement in June of 2017 which progressively grew worse and developed into ankle and foot allodynia and foot drop.

After visiting an orthopedic hand-foot specialist nearly 600 miles from my home who immediately referred me to an orthopedic spinal and back specialist, abnormalities were detected and I was referred to a neurologist. I spent seven hours and went $7000 into debt due to insurance refusal to pay for pre-authorized testing at this doctor’s office but he determined that I had major nerve damage to my lumbar-sacral plexus from the knee surgery and most likely Complex Regional Pain Syndrome. He referred me to a chronic pain specialist for further treatment and study.
It was there that I discovered I definitely had CRPS and at the implantation my DRG Spinal Cord Stimulator, the diagnosis was refined to Type 2, progressive with nerve damage and little chance of remission.
Since that day in December 2019, I have lost a 23 year career as a pharmacist, of which I was a manager in the last 6 months, a career as a multi-published Christian author although I do try to write and blog, and an avid outdoorswoman and Hunter, but as you can see, where there is a will, there is an way!
I can’t stand, sit, or lay flat for longer than 15 minutes. I can’t walk farther than 50 yards, lift over 5 lbs, or play my guitar.

I can advocate for those in my position, suffering my pain, and have no other pain relief covers but OPIOIDS. I’m allergic or can’t take any other meds making opioids and my SCS the only relief available to me and my disabled husband (post-surgical traumatic arthritis – 39 surgeries). I also know for a FACT that the CDC Opioid Guidelines do not apply to us.
Thank you and Remember God gives us strength to face the day. Ask Him for it!

In Christ Always,
Renee

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@faithwalker007 Welcome to connect You are one brave women to go through all you did And still get a 4point buck you showed perserverance Congrats on your tenacity. I was an archer hunter back on the days I got a 8 or buck dressed out at 200 lbs my husband came home from the Mts with a 90 lb b uck he didn't live that down

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@faithwalker007

My name is Renee and I have severe chronic nerve pain from Complex Regional Pain Syndrome. I was diagnosed in February of 2019 after searching for answers from over nine different specialists and providers and numerous MRIs, CT Scans, x-rays, nerve studies, and spinal injections for pain. I was informed by these providers that I had scoliosis, post-surgical inflammation, arthritis, rehab illness, sensitivity to pain and work, and “nothing at all except psychosomatic symptoms.”

I developed severe weakness and pain in my right ankle, side of lower leg, upper leg, and lower back following a right knee replacement in June of 2017 which progressively grew worse and developed into ankle and foot allodynia and foot drop.

After visiting an orthopedic hand-foot specialist nearly 600 miles from my home who immediately referred me to an orthopedic spinal and back specialist, abnormalities were detected and I was referred to a neurologist. I spent seven hours and went $7000 into debt due to insurance refusal to pay for pre-authorized testing at this doctor’s office but he determined that I had major nerve damage to my lumbar-sacral plexus from the knee surgery and most likely Complex Regional Pain Syndrome. He referred me to a chronic pain specialist for further treatment and study.
It was there that I discovered I definitely had CRPS and at the implantation my DRG Spinal Cord Stimulator, the diagnosis was refined to Type 2, progressive with nerve damage and little chance of remission.
Since that day in December 2019, I have lost a 23 year career as a pharmacist, of which I was a manager in the last 6 months, a career as a multi-published Christian author although I do try to write and blog, and an avid outdoorswoman and Hunter, but as you can see, where there is a will, there is an way!
I can’t stand, sit, or lay flat for longer than 15 minutes. I can’t walk farther than 50 yards, lift over 5 lbs, or play my guitar.

I can advocate for those in my position, suffering my pain, and have no other pain relief covers but OPIOIDS. I’m allergic or can’t take any other meds making opioids and my SCS the only relief available to me and my disabled husband (post-surgical traumatic arthritis – 39 surgeries). I also know for a FACT that the CDC Opioid Guidelines do not apply to us.
Thank you and Remember God gives us strength to face the day. Ask Him for it!

In Christ Always,
Renee

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@faithwalker007 what are the CDC Opiod Guidelines? Sorry to hear how awfully the medical system failed you.

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@esperanza22

Hi
Was hoping to get some information on Duloxetine. Would love to hear from people that have taken it and if they were successful?
Thanks

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Hi there esperanza22, I am a bit tardy with my response and realized I hadn't connected with you recently. Duloxetine: here's the deal. I was not taking anything in the morning for my SFN (small fiber neuropathy). I was taking Nortriptyline at night for sleeping. After a neuropsychological study, it was found that my pain in the day was being increased by anxiety and depression. A sorry state of affairs, I can assure you. In addition, I had constipation from it.

So….even though it worked for sleep, I tapered off the night-time Nortriptyline in several months. Then I began very slowly to begin and then add to the Duloxetine in the morning. Duloxetine is a much newer medication than Nortriptyline even though it worked as prescribed. Duloxetine is both an anti-anxiety as well as an anti-depressive. Therefore, it helps me get through the day quite well. I have more energy with less pain and a clearer mind. I'll take that.

So what do I do for sleeping? I moved my Gabapentin to the evening also. Helps with pain and my medical cannabis does the rest. I rarely have a bad night, except of course when I have the Neuropathic Itch. And then it is more like a nightmare.

It seems like we all have to create our own paths through this journey of pain, depression, and anxiety. I know that next year things may be different. Right now…I am pleased with the changes and the duloxetine.

May you be free of suffering and the causes of suffering.
Chris

Liked by HankB

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@jerid

Seriously check into the Cold Red Light Therapy. I have only been using it for 5 days now, so I can not say yay or nay and I don't want to mislead anyone. Check out a near by massage therapist, chiropractor or order you own online. We have chosen the Laser LRX red light. My husband diligently studied all the cold lasers that are offered. It ran about $1,000.00 and I know for some that may be way out of your price range, but then think about all the $'s being spent on Dr. visits and meds if your insurance is not covering them. It was a bite for us also, but my husband is so caring and sees my suffering and wants me well as much as I do. It is made in Israel and is the latest technology of this device on the market today. I hope this will help at least one person.

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Hi @jerid could you post a link to this product? I do not find it on Amazon. A direct web link would be helpful. Thanks!

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@artscaping

Hi there esperanza22, I am a bit tardy with my response and realized I hadn't connected with you recently. Duloxetine: here's the deal. I was not taking anything in the morning for my SFN (small fiber neuropathy). I was taking Nortriptyline at night for sleeping. After a neuropsychological study, it was found that my pain in the day was being increased by anxiety and depression. A sorry state of affairs, I can assure you. In addition, I had constipation from it.

So….even though it worked for sleep, I tapered off the night-time Nortriptyline in several months. Then I began very slowly to begin and then add to the Duloxetine in the morning. Duloxetine is a much newer medication than Nortriptyline even though it worked as prescribed. Duloxetine is both an anti-anxiety as well as an anti-depressive. Therefore, it helps me get through the day quite well. I have more energy with less pain and a clearer mind. I'll take that.

So what do I do for sleeping? I moved my Gabapentin to the evening also. Helps with pain and my medical cannabis does the rest. I rarely have a bad night, except of course when I have the Neuropathic Itch. And then it is more like a nightmare.

It seems like we all have to create our own paths through this journey of pain, depression, and anxiety. I know that next year things may be different. Right now…I am pleased with the changes and the duloxetine.

May you be free of suffering and the causes of suffering.
Chris

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Chris Trout
In your post, you mentioned medical cannabis and sleep. I have a sleep disorder that sleep medicine does not know how to treat. It is called epic (non-rem) dreaming and I have suffered with it most of my life. I have mentioned trying cannabis but they don't seem to want to try it. Plus they do not know anything about it. What type, strength, smoke, extract, etc. I am tired of taking antidepressants like a lab rat. Can you tell me anything about how cannabis might affect dreaming?

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