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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.

Profile picture for bustrbrwn22
bustrbrwn22 | @bustrbrwn22 | Sep 5, 2022
In reply to @moniesluv1974 "I'm Monique. I'm in constant severe pain all day everyday. I've been diagnosed with fibromyalgia, degenerative..." + (show)
Profile picture for moniesluv1974 @moniesluv1974

I'm Monique. I'm in constant severe pain all day everyday. I've been diagnosed with fibromyalgia, degenerative disc disease, cronic granulomatous, cronic fatigue syndrome, gerd, ibs, and type II diabetes. Ive had 3 left rotator cuff surgeries, 2 cervical fusions, lumbar fusion, gull bladder removal, inguinal hernia repar, partial hysterectomy, 2 broken ankles and 3 ingrown toenail surgeries. I take 5mg of Hydrocone every 8 hrs, 900mg 3x per day of gabapentin, 2500 MG of tylenol all for pain. Nothing works. I'm on the heating pad several times a day, I use salanpas pain patches every day and muscle rubs. I need help. Don't know how much more I can take. Please help, any suggestions

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@moniesluv1974 Hi, Monique. I have no idea how old you are but you sound like you have a lot of very painful conditions. I’m not sure how you feel about pain medication but it seems like your dosage is very small, even for someone without half of your conditions, 5 mg every 8 hours. Do you have a pain management doctor that can adjust your dosage or are you trying not to use opioids? I am so sorry you have all of this going on with you!

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Profile picture for SusanEllen66 Susan McMichael
SusanEllen66 Susan McMichael | @SusanEllen66 | Sep 5, 2022
In reply to @rwinney "Hello everyone, welcome to Connect - @redhatter, @chesbeau, @sheld11004, @mayopam, @szucker99, @samz0429 and all - My..." + (show)
Profile picture for Rachel, Volunteer Mentor @rwinney

Hello everyone, welcome to Connect - @redhatter, @chesbeau, @sheld11004, @mayopam, @szucker99, @samz0429 and all -

My apologies for this being a group message and not addressing you each individually. I have read your posts. Thank you for sharing your chronic pain journeys, it's
not always easy to do. I'm very sorry for all that you're going through. For me it's a little difficult to read about so many chronic struggles that I relate to and have compassion for. I live with Central Sensitization Syndrome (CSS) which basically means my central and peripheral nervous systems are hypersensitive sending louder messages to my brain. CSS helps explain a lot about migraine, gut issues, neuropathy, sleep disorders, CRPS, etc...

As you folks navigate Connect, I'd like to throw some food for thought your way regarding CSS and pain management. For those who may not be aware, Mayo Clinic has a comprehensive Pain Rehabilitation Center (PRC) at all 3 of it's locations, MN, AZ and FL. I graduated the PRC almost 2 years ago with the tools I needed for pain management and self help. It was the most rewarding thing I have ever done for myself. Here's a link with information about the PRC:

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Like some of you, I was on the merry-go-round of failed treatments, meds not doing enough anymore, and doctor after doctor. This is called the "Cycle of Pain" and it's hard to not get trapped in it. I didn't have a plan of how to manage all of my conditions physically or emotionally. Through research, I finally discovered the following video by Mayo Clinic's Dr. Sletten of the Pain Rehabilitation Center. He made sense of what I was going through and what I could do to help myself collectively. Take a look...


As you'll find, Dr. Sletten explains CSS and the science behind chronic pain and symptoms. He makes sense of the mind body connection and how it can be managed through a comprehensive plan that includes the 4 pillars of physical, emotional, behavioral and chemical.

I'm always curious what folks think about the video and look forward to hearing back from you. I'm happy to help or further elaborate on my experience with the PRC and pain management. Do you mind letting me know what you think? Did any parts of the video resonate or help you have a better understanding of your chronic symptoms or a new approach in managing them?

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Thanks for sharing this! I found the video very reassuring. All this pain and the life disruption it causes is not in my head! On paper, I appear to be a very healthy person, but my body knows how to hijack me…
Fibromyalgia, osteoarthritis, peripheral neuropathy, and 2 forms of Vasculitis plague me daily. Unless things get bad, I manage to go through my day without having to take pain medicine including Tylenol because even that makes me sleepy!
Topical magnesium creams, Aspercream, and Biofreeze are my go to helpers.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 6, 2022
In reply to @chelle2001 "Hi Rachel, Thank you for sharing this video! It was really interesting as it's a whole..." + (show)
Profile picture for chelle2001 @chelle2001

Hi Rachel,

Thank you for sharing this video! It was really interesting as it's a whole different approach to dealing with chronic pain. I am really intrigued. I just got accepted to Mayo through General Internal Medicine and will be visiting the Rochester location. I have lupus and fibromyalgia, so I will be meeting with a General Practitioner, Rheumatologist and have a Fibromyalgia consultation in the Integrative Medicine and Health department. If the PRC clinic is something I am interested in doing, would I just mention my interest to the doctors and see if they would be willing to refer me? I have not been diagnosed with CSS but it is spot on with what I am experiencing. I have pain signals going off all over my body day in and day out and my body is hypersensitive to many things - what I ingest, sound, smells, weather changes, heat, cold, etc. The pain is progressively getting worse and the pain meds don't nearly help enough. My doctors keep upping the dose or adding more, which I hate to do.

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Hi @chelle2001, nice to meet you!
Your feedback is much appreciated, thank you for responding. Great news that you are in with Mayo for consultations with a team of specialists. You will be well cared for, and I can imagine no stone will be left unturned.

Mayo doctors/specialists and the PRC play for the same team at Mayo however, what I learned from Dr. Sletten during my time of rehab was that some Mayo doctors do end up referring patients to the PRC for rehabilitation when there are just no more medical interventions to help chronic pain sufferers and doctors have nothing left to give from their specialty lanes. Procedures and medications run the course and become less effective. If that is what you find after meeting with your Mayo team in MN, and they don't suggest the PRC then yes, absolutely you can request a referral to the Pain Rehab Center.

Either way I'm ecstatic for you and have hope that your Mayo visit will be a step in the right direction. I'm happy as heck that you now are armed with more knowledge about CSS and the chronic symptoms you experience. I am not a doctor, but in my opinion, you experience central and peripheral sensory nervous systems upregulation which is CSS. Now you have important information in your back pocket. Knowledge is power! When do you head to MN?

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Profile picture for Rachel, Volunteer Mentor
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 6, 2022
In reply to @SusanEllen66 "Thanks for sharing this! I found the video very reassuring. All this pain and the life..." + (show)
Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

Thanks for sharing this! I found the video very reassuring. All this pain and the life disruption it causes is not in my head! On paper, I appear to be a very healthy person, but my body knows how to hijack me…
Fibromyalgia, osteoarthritis, peripheral neuropathy, and 2 forms of Vasculitis plague me daily. Unless things get bad, I manage to go through my day without having to take pain medicine including Tylenol because even that makes me sleepy!
Topical magnesium creams, Aspercream, and Biofreeze are my go to helpers.

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You're welcome @SusanEllen66! Thanks for sharing your perspective on the video and about yourself. Girl, it is not in your head, and I appreciate that you mention feeling that way. I felt that way for many years as well, since childhood actually, something was heightened, and I chalked it up to me being a self-proclaimed delicate flower. As time went on and life threw more at me, stress and anxiety played roles. Through the PRC I learned that I am a healthy person overall, no diseases. And despite how I feel because my body hijacks me too, I can find a better quality of life.

Since I went to the Mayo PRC, I now know the
"why behind the what"
and am prepared with an arsenal of tools, strategies and have a self-managing plan.

Congratulations to you for learning about CSS and how it effects our bodies through the course of chronic symptoms. And good for you for not using or minimizing medications. I'm glad topicals bring you relief. Do you have any other tips on self-management or how you handle difficult days?

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Profile picture for moniesluv1974
moniesluv1974 | @moniesluv1974 | Sep 6, 2022
In reply to @bustrbrwn22 "@moniesluv1974 Hi, Monique. I have no idea how old you are but you sound like you..." + (show)
Profile picture for bustrbrwn22 @bustrbrwn22

@moniesluv1974 Hi, Monique. I have no idea how old you are but you sound like you have a lot of very painful conditions. I’m not sure how you feel about pain medication but it seems like your dosage is very small, even for someone without half of your conditions, 5 mg every 8 hours. Do you have a pain management doctor that can adjust your dosage or are you trying not to use opioids? I am so sorry you have all of this going on with you!

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Hello there, thanks for your response. Yes matter of fact I'm at my pain management doctor now. They're sending me to have water therapy. They try not to prescribed too much opioid. But I will ask for atleast the next dosage up. I'm 48yrs old and have been dealing with this 13yrs. It worsens every year.

REPLY
1 reply
Profile picture for Rachel, Volunteer Mentor
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 6, 2022
In reply to @moniesluv1974 "I'm Monique. I'm in constant severe pain all day everyday. I've been diagnosed with fibromyalgia, degenerative..." + (show)
Profile picture for moniesluv1974 @moniesluv1974

I'm Monique. I'm in constant severe pain all day everyday. I've been diagnosed with fibromyalgia, degenerative disc disease, cronic granulomatous, cronic fatigue syndrome, gerd, ibs, and type II diabetes. Ive had 3 left rotator cuff surgeries, 2 cervical fusions, lumbar fusion, gull bladder removal, inguinal hernia repar, partial hysterectomy, 2 broken ankles and 3 ingrown toenail surgeries. I take 5mg of Hydrocone every 8 hrs, 900mg 3x per day of gabapentin, 2500 MG of tylenol all for pain. Nothing works. I'm on the heating pad several times a day, I use salanpas pain patches every day and muscle rubs. I need help. Don't know how much more I can take. Please help, any suggestions

Jump to this post

@moniesluv1974 Hi Monique, welcome to Connect.
You are dealing with a lot, I'm so sorry. The first thing I want to stress is that no matter your struggle, hang on to hope. Remind yourself that you are strong and will persevere.

Thankfully you've reached out for help and suggestions. You're not alone in your pain journey. I know how isolating it can be and how helpless it can feel, especially at a younger age and feeling like "nothing works". I've been through my fair share throughout my 40's.

I'd like to help in any way I can and have a few questions to start.

Are your doctors trying their best to continue to help keep you comfortable and manage your chronic pain?

Do you feel you have been correctly diagnosed or are you still searching for answers?

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1 reply
Profile picture for bustrbrwn22
bustrbrwn22 | @bustrbrwn22 | Sep 6, 2022
In reply to @moniesluv1974 "Hello there, thanks for your response. Yes matter of fact I'm at my pain management doctor..." + (show)
Profile picture for moniesluv1974 @moniesluv1974

Hello there, thanks for your response. Yes matter of fact I'm at my pain management doctor now. They're sending me to have water therapy. They try not to prescribed too much opioid. But I will ask for atleast the next dosage up. I'm 48yrs old and have been dealing with this 13yrs. It worsens every year.

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@moniesluv1974 I totally understand not overprescribing opioids and the current hysteria surrounding them, but when taking them responsibly they can add a great amount of quality of life that would make any kind of exercise or stretching more appealing. It is important to keep our aerobic and muscle strength as we age as once they are lost, they are hard to be regained. This will allow you to search for other ways to manage or heal so you are not dependent on opioids forever, if you are lucky. It did work for me. I understand everyone has to make their own choices and I support whatever yours might be.

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Profile picture for moniesluv1974
moniesluv1974 | @moniesluv1974 | Sep 6, 2022

Update, I received 5 trigger point injections today. Two in my neck, 1 in my sciatica, and one in each hip. It took the edge off but I'm still in pain. My doctor scheduled me to come back in a week. I will update you when she gives me an update. I'm on my heating pad as I have been the past few weeks. Maybe they'll up my meds to help ease some of this pain. I do start aquatic therapy Monday, hopefully that'll help also. Thanks

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1 reply
Profile picture for moniesluv1974
moniesluv1974 | @moniesluv1974 | Sep 6, 2022
In reply to @rwinney "@moniesluv1974 Hi Monique, welcome to Connect. You are dealing with a lot, I'm so sorry. The..." + (show)
Profile picture for Rachel, Volunteer Mentor @rwinney

@moniesluv1974 Hi Monique, welcome to Connect.
You are dealing with a lot, I'm so sorry. The first thing I want to stress is that no matter your struggle, hang on to hope. Remind yourself that you are strong and will persevere.

Thankfully you've reached out for help and suggestions. You're not alone in your pain journey. I know how isolating it can be and how helpless it can feel, especially at a younger age and feeling like "nothing works". I've been through my fair share throughout my 40's.

I'd like to help in any way I can and have a few questions to start.

Are your doctors trying their best to continue to help keep you comfortable and manage your chronic pain?

Do you feel you have been correctly diagnosed or are you still searching for answers?

Jump to this post

Thanks for your response. I received 5 trigger point injections today, 2 in my neck, 1 in my sciatica, and 1 in each hip. So far it just took the edge off but I'm still in pain. I'm scheduled for Tuesday hopefully they'll give me something to help. This I'm depressing. Pain every day all day leaves me miserable. Hopefully I can get help

REPLY
Profile picture for Rachel, Volunteer Mentor
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 6, 2022
In reply to @moniesluv1974 "Update, I received 5 trigger point injections today. Two in my neck, 1 in my sciatica,..." + (show)
Profile picture for moniesluv1974 @moniesluv1974

Update, I received 5 trigger point injections today. Two in my neck, 1 in my sciatica, and one in each hip. It took the edge off but I'm still in pain. My doctor scheduled me to come back in a week. I will update you when she gives me an update. I'm on my heating pad as I have been the past few weeks. Maybe they'll up my meds to help ease some of this pain. I do start aquatic therapy Monday, hopefully that'll help also. Thanks

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Hey, thanks for the update. My fingers are crossed for you to feel relief from the trigger point injections. That would be awesome if at your one week follow up you'll be reporting progress. Is this the first time you've received trigger point?

I hope you'll also update us on how aquatic therapy goes Monday. It's supposed to be a fantastic way of relieving pain from joints and being weightless for movement. You're making moves, keep up the good work! 💪

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