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.

@beau238

Hi, I'm new to this site and apologize in advance for any "faux pas" regarding protocol. I have been suffering from sciatica since 2014 and have had numerous epidurals and RFAs after physical therapy p[roved unsuccessful. In 2019 a laminectomy was performed in the L5-S1 region which was also unsuccessful. Last April my pain management doctor (an anesthesiologist) attempted an SCS test . In doing so, he irritated a nerve and the test was aborted after five days. (The doctor claimed he had to circumvent scar tissue which resulted in the irritation.) Now the nerve has settled and the doctor is recommending a surgeon attempt the trial. Obviously I'm concerned and am reaching out to those who may have had a similar experience. Any feedback will be appreciated. BEAU238

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Hello @ beau238, welcome to Connect. Thank you for coming to seek a connection with others who may have had a similar experience with sciatica and irritated nerves.

I'm sorry that you've been through a lot over the years, attempting to find relief. I share your experience with failed epidurals, RFA's, and physical therapy. Through my trials and errors with failed procedures, I finally landed on central sensitization syndrome (CSS). It's a chronic pain syndrome which affects nerves, muscles, joints and sensory input. I attended Mayo Clinic's Pain Rehab Center to better learn how to live with chronic pain.

I'm hoping another member joins the conversation with some advice and experience to share that is familiar with SCS test. Unfortunately, I am not.

Do you have any other options through your pain management team towards finding relief? How do you currently handle your discomfort?

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@rwinney

Hello @ beau238, welcome to Connect. Thank you for coming to seek a connection with others who may have had a similar experience with sciatica and irritated nerves.

I'm sorry that you've been through a lot over the years, attempting to find relief. I share your experience with failed epidurals, RFA's, and physical therapy. Through my trials and errors with failed procedures, I finally landed on central sensitization syndrome (CSS). It's a chronic pain syndrome which affects nerves, muscles, joints and sensory input. I attended Mayo Clinic's Pain Rehab Center to better learn how to live with chronic pain.

I'm hoping another member joins the conversation with some advice and experience to share that is familiar with SCS test. Unfortunately, I am not.

Do you have any other options through your pain management team towards finding relief? How do you currently handle your discomfort?

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Thank you for your reply. I'm updating my post to include I am a on blood thinner (Aggranox- it's kinda like aspirin on steroids) having suffered a ischemic stroke in 2013. Honestly I cannot distinguish which pain is sciatica related and which pain may be stroke related. I'm ready to rule out an SCS due to the blood thinner.

I'm currently on 7.5mg oxy (4x/day) and 30 mg Cymbalta (1x) and apply Lidocaine 5% ointment. I've also tried various otc ointments and creams without much success. And I exercise regularly. I want to get off the oxy, but fear my options are limited. Lyrica and gabapentin have been eliminated as both left me drowsy and lethargic. My PCP prescribed a low dosage (30mg) of Cymbalta in hopes it won't produce similar side effects. And if successful, we'll gradually increase the dosage. I'm wondering if there are other options available other than what I've described. I am in the process of finding another pain management specialist but have become cautious towards those recommending additional procedures. Your suggestions are appreciated! BEAU238

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Chronic pain does not respond well opioids. There is no magic pill — and your pain is real. It may be intensified by central sensitization syndrome (CSS). Mayo’s 3-week outpatient Pain Rehab program is effective. You learn techniques that help you become more comfortable and functional. . . I was skeptical and really did not want to attend. I learned better ways of doing things, gentle exercise that respected my body and how to pace myself mindfully. Am I pain free? No. Am I more comfortable? Yes. I went from walking 1200 steps/day to 10,000+ steps/day. I used to spend a lot of time in bed before PRC. . . Mayo’s Pain Rehab program is effective.

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@jojo123456

Chronic pain does not respond well opioids. There is no magic pill — and your pain is real. It may be intensified by central sensitization syndrome (CSS). Mayo’s 3-week outpatient Pain Rehab program is effective. You learn techniques that help you become more comfortable and functional. . . I was skeptical and really did not want to attend. I learned better ways of doing things, gentle exercise that respected my body and how to pace myself mindfully. Am I pain free? No. Am I more comfortable? Yes. I went from walking 1200 steps/day to 10,000+ steps/day. I used to spend a lot of time in bed before PRC. . . Mayo’s Pain Rehab program is effective.

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Hello @jojo123456! I'm grateful you shared your experience at Mayo Clinic's Pain Rehabilitation Center, thank you! It's nice to hear when someone benefits from a healthier way of dealing with, and living in chronic pain.

You hit the nail on the head that opiates, and other medications, are scientifically known to increase and intensify pain causing hyperalgesia. I experienced the vicious cycle as I took may different medications in search of, as you say, the "magic pill".

It's a sad reality being stuck in the cycle of wanting to be fixed or helped, and trying anything and everything possible. It's extremely difficult to see your way out to a better opportunity.

Congratulations on being a PRC graduate! Such a huge accomplishment. May I ask when you graduated, and what part of the program has made the biggest, most positive impact on your new "C Life"?

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@beau238

Thank you for your reply. I'm updating my post to include I am a on blood thinner (Aggranox- it's kinda like aspirin on steroids) having suffered a ischemic stroke in 2013. Honestly I cannot distinguish which pain is sciatica related and which pain may be stroke related. I'm ready to rule out an SCS due to the blood thinner.

I'm currently on 7.5mg oxy (4x/day) and 30 mg Cymbalta (1x) and apply Lidocaine 5% ointment. I've also tried various otc ointments and creams without much success. And I exercise regularly. I want to get off the oxy, but fear my options are limited. Lyrica and gabapentin have been eliminated as both left me drowsy and lethargic. My PCP prescribed a low dosage (30mg) of Cymbalta in hopes it won't produce similar side effects. And if successful, we'll gradually increase the dosage. I'm wondering if there are other options available other than what I've described. I am in the process of finding another pain management specialist but have become cautious towards those recommending additional procedures. Your suggestions are appreciated! BEAU238

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You have tried many ways to handle to your chronic symptoms, and are still hopeful to find suggestions for your path forward. That's inspiring!

My suggestion for you is to take a moment and watch Dr. Sletten from the Mayo Clinic, Jacksonville, explain central sensitization syndrome (CSS). He teaches at Mayo's Pain Rehabilitation Center (PRC), and he and his team do an incredible job.

https://www.youtube.com/watch?v=8defN4iIbhohttps://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I'm hopeful that you find a pain management "team". Through my past experiences, I never had a team or group effort that was collectively trying to improve my quality of life, given my circumstances. I benefited greatly from PRC's comprehensive, all inclusive approach on teaching me how to live my best possible life with quality. I gained independence and confidence back, and felt like I was in charge of my well being again.

Do you mind sharing your feedback after watching the videos?

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@rwinney

You have tried many ways to handle to your chronic symptoms, and are still hopeful to find suggestions for your path forward. That's inspiring!

My suggestion for you is to take a moment and watch Dr. Sletten from the Mayo Clinic, Jacksonville, explain central sensitization syndrome (CSS). He teaches at Mayo's Pain Rehabilitation Center (PRC), and he and his team do an incredible job.

https://www.youtube.com/watch?v=8defN4iIbhohttps://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I'm hopeful that you find a pain management "team". Through my past experiences, I never had a team or group effort that was collectively trying to improve my quality of life, given my circumstances. I benefited greatly from PRC's comprehensive, all inclusive approach on teaching me how to live my best possible life with quality. I gained independence and confidence back, and felt like I was in charge of my well being again.

Do you mind sharing your feedback after watching the videos?

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@beau238 My apologies....I attached one video, and one link below the video which is an overview of the PRC program. I'm sorry for any confusion.

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@aggie98

I have horrible peripheral neuropathy pain from my toes to my knees. I can no longer walk. A couple years ago my so-called pain doctor took all pain meds away from me and all his patients due to the “Opium Crisis.” Now what? All of us are being punished because of a few druggies who want to kill themselves. Many chronic pain sufferers have killed themselves due to the pain. Any suggestions for pain relief?

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That has been my argument. You cannot turn a patient who is in severe pain away from the E.R. and tell them there is nothing you can do for them. That is a sure-fire recipe for someone to harm or kill themselves. They feel hopeless, to begin with, and also frightened that they will be in pain for the rest of their lives. They wonder what is the point. I wonder how many lives could have been saved if they were given the medication they needed to help alleviate at (at least), some of their pain.

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@donfeld

There is no question that with the physical therapy and lots of deep conversations it does improve your situation as long as you're in classes and dealing with in a daily basis. Once you leave there you've got to keep this regiment up which is not the easiest thing in the world for the average person and I guess you got to be really have a tremendous desire to keep that regiment up. I did get off the opioids during that time which was great but months later my strong pain came back again and I bought that for some time, but I've learned that opioids are not the answer. So I fight that everyday and unless I did a severe injury is the only time I would ever consider opioids again. Physically when I was done there's no question I felt much improvement so I said go experience it and everybody gets different things out of it which is hard to say whether it's a good for you or it's not something that would fit. The staff is great people are great and you're beating lot of nice people who are in the same situation you already. That alone you get a lot out of and you make some new friends. Hope it works for you

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Hello there @donfeld, how are you doing? I'm checking in to follow up on Mayo Pain Rehab Center (PRC), and thank you for sharing your helpful PRC experience and insight with me last year.

I graduated PRC October of 2020. It was a rebirth, and gave me my life back. Getting off opiates was the best thing I could have done as it reduced the intensity of my symptoms. Learning how to use my body better through PT and OT, and creating a schedule were my most helpful tools.

If you don't mind me asking, what tools do you find most helpful since graduating PRC?

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@rwinney

Hello @jojo123456! I'm grateful you shared your experience at Mayo Clinic's Pain Rehabilitation Center, thank you! It's nice to hear when someone benefits from a healthier way of dealing with, and living in chronic pain.

You hit the nail on the head that opiates, and other medications, are scientifically known to increase and intensify pain causing hyperalgesia. I experienced the vicious cycle as I took may different medications in search of, as you say, the "magic pill".

It's a sad reality being stuck in the cycle of wanting to be fixed or helped, and trying anything and everything possible. It's extremely difficult to see your way out to a better opportunity.

Congratulations on being a PRC graduate! Such a huge accomplishment. May I ask when you graduated, and what part of the program has made the biggest, most positive impact on your new "C Life"?

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I think it was the fall of 2017. . .

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About at my wit's end ! I've been dealing with chronic Migraines for almost 15 months now. Been to my Local ER Hospital allot. See a Nuero, My reg Doctor and been to pain management . Been admitted in Hospital many times. Have had CT scans and Ct Scans with contrast . Always normal. My Migraines started 15 months ago after passing out 3 seperate times. I've tried infusions, many meds and even give myself monthly shots with not much success ?? And yes i've done Botox also. I just don't know what to do anymore . Anyone that suffers have any suggestions on what i can do ?? I've used up all my FMLA already this year . Unfortunatly still missing work on and off. My employer has been understanding but when missing is to much ??? I've been averaging 3-4 migranes a week. Pretty much always have constant headaches . Thank You

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