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.

@lilgrizz

Hello, new here! Hope to make some friends. When I talk to my family( I have no friends) about my pain and my pain meds they look at me like I have a 2nd head. While I suffer from chronic pain brought on by ms and lupus and just recently degenerative scoliosis I did get some relief from my back pain, just some, when I had two surgeries to correct a 64 degree curve that was curving at a very fast rate at about 10 degrees a year. I’m 50 and already could not stand up straight and had a significant hump on my back. Sorry getting off topic. The surgeries consisted of putting in 2 rods and about 50 something screws running from the base of my neck down to my tailbone. I got quit a laugh in mikee post about the longest but crack. Sorda reminds me of myself. Getting off topic again. sorry. you will find that I do that often and I do apologize. since my ms has become active my cognitive abilities have suffered greatly. At one point I was once a very intelligent person now I’m just stupid. THe chronic pain I endure from all my conditions is controlled mostly by 10mg of oxymorphone 4xday. and a 75mcg fentynl patch. I was also recently on Opana ER 40mg 2xday but that has now been taken off the market because of the idiots who melt it down and shoot it up. So I wonder if anyone knows an equivalent to opana er 40mg because what i’m taking now just aint getting it. my doc increased my fentynl patch from 50 to 75 to make up for no longer having the opana but it is just no enough. Would love to hear from anyone.

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@lilgrizz

This is the format I usually use so everyone knows who my comment is for. It’s confusing when people don’t specify.

I understand that there’s a tragic epidemic of opiate abuse in America, and I understand that something needs to be done. I think that doctors should be able to prescribe whatever med is appropriate for a patient, especially for chronic pain. I also understand that some doctors will abuse the system. I don’t know if there’s a perfect solution. I just hope that we’ll be able to get what we need to manage the pain.

Jim

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@jeya

Hello, I’m Jeya and I had a heart attack and a stent put in 3 months ago. But this also brought my fibro and RA to the forefront and I having been suffering a great deal of pain. My recovery and rehab has been slower because of this, and it has been very frustrating for me. My doctor did increase my Lyrica to 300 and I’m feeling a little better. Wanted to have support and help. Thanks!

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@jeya

Welcome to Connect, a safe place to find support and a great resource for finding answers to your questions. I’m glad that Lyrica is helping. I had a bad reaction to it and was in the hospital for a few days – incoherent, unable to finish a sentence, lost memory and a few other things. I was really disappointed because it was the only med that had relieved the neuropathy pain.

There are groups here that are for folks with RA and fibromyalgia. I know that someone will direct you to those groups, so I will leave that to them. I pray that you’ll have a full recovery from the heart attack.

Jim

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Thank you! I’m sorry that Lyrica didn’t work out for you.

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@lilgrizz

Hello, new here! Hope to make some friends. When I talk to my family( I have no friends) about my pain and my pain meds they look at me like I have a 2nd head. While I suffer from chronic pain brought on by ms and lupus and just recently degenerative scoliosis I did get some relief from my back pain, just some, when I had two surgeries to correct a 64 degree curve that was curving at a very fast rate at about 10 degrees a year. I’m 50 and already could not stand up straight and had a significant hump on my back. Sorry getting off topic. The surgeries consisted of putting in 2 rods and about 50 something screws running from the base of my neck down to my tailbone. I got quit a laugh in mikee post about the longest but crack. Sorda reminds me of myself. Getting off topic again. sorry. you will find that I do that often and I do apologize. since my ms has become active my cognitive abilities have suffered greatly. At one point I was once a very intelligent person now I’m just stupid. THe chronic pain I endure from all my conditions is controlled mostly by 10mg of oxymorphone 4xday. and a 75mcg fentynl patch. I was also recently on Opana ER 40mg 2xday but that has now been taken off the market because of the idiots who melt it down and shoot it up. So I wonder if anyone knows an equivalent to opana er 40mg because what i’m taking now just aint getting it. my doc increased my fentynl patch from 50 to 75 to make up for no longer having the opana but it is just no enough. Would love to hear from anyone.

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Agreed. Was replying to similar poster, and my smart phone did a flip and threw my post into the twight light zone. A viodin (now Norco) user, not a drug abuser. Victorious 69

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Hi,
Stephanie from NYC. Had spine surgery five years ago for Spondilolysthesis but it failed. Now see pain management Dr. Who has prescribed Oxy 5 mg. one and one half per day. – a low dose not covering my pain. Now has me trying low-dose Naltrexone (LDN) and is titrating me up. No relief yet. About 2 years ago, got Fibro, and it gets worse monthly. In NYC have no acces to medical marijuana. Also have a Nevro Spinal Cord Stimulator which is effective on my back pain, but has no effect on my Fibro. Suffering daily, and unable to live an active life.

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@jeya

Hello, I’m Jeya and I had a heart attack and a stent put in 3 months ago. But this also brought my fibro and RA to the forefront and I having been suffering a great deal of pain. My recovery and rehab has been slower because of this, and it has been very frustrating for me. My doctor did increase my Lyrica to 300 and I’m feeling a little better. Wanted to have support and help. Thanks!

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@hi! yes you do need support. i also have ra with great pain and i know you are suffering. myself and i know others do feel for you and do care for you. have heart problems as many of us do. you could be very surprised as you heal. your lifestyle can be quite ok. just hang in there.@@

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@slobignat

Hi,
Stephanie from NYC. Had spine surgery five years ago for Spondilolysthesis but it failed. Now see pain management Dr. Who has prescribed Oxy 5 mg. one and one half per day. – a low dose not covering my pain. Now has me trying low-dose Naltrexone (LDN) and is titrating me up. No relief yet. About 2 years ago, got Fibro, and it gets worse monthly. In NYC have no acces to medical marijuana. Also have a Nevro Spinal Cord Stimulator which is effective on my back pain, but has no effect on my Fibro. Suffering daily, and unable to live an active life.

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@slobignat

Hi, Stephanie. Welcome to the group. You’ll find here many good people who share issues similar to yours, and will offer support. Chronic pain, whatever the cause, is surely a real challenge. I recently had a Burst DR spinal cord stimulator implant to treat my peripheral neuropathy pain in my feet. It’s made a big difference, and I’ve been able to reduce two of my pain meds.

I’m sorry you’re having so much pain from fibromyalgia. I know several people who suffer from it, and it’s an unrelenting disease. I hope you find some relief soon. There’s a discussion “fibromyalgia pain” in the chronic pain group that you might like to look at.

Jim, volunteer mentor

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Hi,
My name is Nicole. I have a Labral tear in my hip with impingement on a nerve. I’m in pain 24/7 and was interested in stem cell therapy at Mayo. I was wondering if this treatment has worked for anyone. I just dove right in with it. It’s very nice to see so many others in this discussion group as it is so hard to find people that understand how awful it is.

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Hello @nicole32

I appreciate your question regarding hip pain. This sounds very difficult for you and I’m sure you would like to find some relief. In searching through our Members at Mayo Connect, I found two members who have discussed labral tear in the hip, @aprilarlady and @flounder, I hope that they will join in this discussion. Also, I see that Mayo Clinic has done (or perhaps is doing) some clinical studies on regenerative medicine, here is the website, Consult Service http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service. Or simply call 1-844-276-2003 to speak with one of our experts. Perhaps a phone call to them will provide you with some more information.

I will also invite @jimhd into this discussion, who has dealt with chronic pain and @JustinMcClanahan who has discussed regenerative medicine at Mayo.

We look forward to getting to know you better and supporting you at this time. If we may ask, how long have you had this pain? What other treatments have been suggested to you or that you have tried (PT, etc.) ?

Teresa

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@nicole32

Hi,
My name is Nicole. I have a Labral tear in my hip with impingement on a nerve. I’m in pain 24/7 and was interested in stem cell therapy at Mayo. I was wondering if this treatment has worked for anyone. I just dove right in with it. It’s very nice to see so many others in this discussion group as it is so hard to find people that understand how awful it is.

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Hi Nicole. Welcome. I don’t have your particular issue but do contend with my own kind of 24/7 so have a lot of empathy for your situation. However, a very good friend just had “platelet rich plasma” regenerative injections for her hip and is thrilled with the result. That may also be an option to check out. She said the procedure was painless and that alone is encouraging.

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@nicole32

Hi,
My name is Nicole. I have a Labral tear in my hip with impingement on a nerve. I’m in pain 24/7 and was interested in stem cell therapy at Mayo. I was wondering if this treatment has worked for anyone. I just dove right in with it. It’s very nice to see so many others in this discussion group as it is so hard to find people that understand how awful it is.

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@nicole32

Most of us here can empathize with you at some level. 24/7 is enough to drive a person crazy! I guess some would say I’m one of the crazy ones. I’m glad you found this group of truly good people, who are always quick to lend support. I had a spinal cord stimulator implant a few months ago, and I’m so thankful for the amount of relief I’ve received. I still have pain, along with various other things, but I can handle the new level of pain, at least so far. Welcome to Connect.

Jim

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I just found this site and am very relieved to feel less isolated. I am an active 75 yr old now slowed down by back and leg pain from spinal stenosis, arthritis, and scoliosis. In addition to surgery, I am looking at stem cell therapy or laser treatment. Added to the mix, I have fibromyalgia. I have tried a chiropractor, massage therapy, physical therapy, acupuncture and am now losing weight. Until recently, I was able to go to the Y for yoga, Zumba, weights and cardio. I welcome any suggestions to reduce pain that does not involve controlled drugs. Leslie324

Liked by Lisa Lucier

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@leslie324

I just found this site and am very relieved to feel less isolated. I am an active 75 yr old now slowed down by back and leg pain from spinal stenosis, arthritis, and scoliosis. In addition to surgery, I am looking at stem cell therapy or laser treatment. Added to the mix, I have fibromyalgia. I have tried a chiropractor, massage therapy, physical therapy, acupuncture and am now losing weight. Until recently, I was able to go to the Y for yoga, Zumba, weights and cardio. I welcome any suggestions to reduce pain that does not involve controlled drugs. Leslie324

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Hi Leslie,
I know you tried Accupuncture,but maybe try it for longer.It helped me with pain but it took doing it every week for 5 months and I would have been very sceptical.I had been in pain,chronic,for 6 years.
Best wishes

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@leslie324

I just found this site and am very relieved to feel less isolated. I am an active 75 yr old now slowed down by back and leg pain from spinal stenosis, arthritis, and scoliosis. In addition to surgery, I am looking at stem cell therapy or laser treatment. Added to the mix, I have fibromyalgia. I have tried a chiropractor, massage therapy, physical therapy, acupuncture and am now losing weight. Until recently, I was able to go to the Y for yoga, Zumba, weights and cardio. I welcome any suggestions to reduce pain that does not involve controlled drugs. Leslie324

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Thank you so much. Actually, acupuncture does help me–it puts me to sleep! Had it free after my first knee replacement. I did wonder about having it done for my back. With surgery out as an option due to serious illness in my husband’s family, I will try it again.

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Hello @leslie324 and @nicole32. You both mentioned stem cells. You may want to check out this conversation taking place on Connect, https://connect.mayoclinic.org/discussion/has-anyone-used-prp-or-stem-cell-therapy-to-fix-cervical-discs/.

In that discussion you will see great discussion about stem cell therapy, as well as, posts from me on how to contact Mayo Clinic’s Regenerative Medicine to inquire about stem cell replacement.

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