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.

@nickyfriskel

Hi I'm Nicky, 54yrs old, mother of three grown children. I'm an RN working in a local hospital. I've been having chronic pelvic pain on and off for years intermittently…. Was misdiagnosed a couple times but hopefully next week will bring me some answers and some relief!

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@nickyfriskel Welcome to Mayo connect. As an RN, you have a knowledge base that most of us don't have, and have seen things behind the scenes that we are not party to. I bet that makes it all the more frustrating to not have a good diagnosis yet for your pain. I hope that you will come back and let us know how we can assist you in this journey. Meanwhile, how are you handling the day-to-day of the discomfort now?
Ginger

Liked by lioness

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Hi Ginger… Thank you for the welcome… And yes being an RN does give me more knowledge but not always in a good way! I am scheduled for an MRI on Monday and I see a pelvic specialist on Wednesday… He has a great reputation and some patients come to the US from out of country to see him! I am so hopeful right now!! And as a double whammy while we were trying to figure out my diagnosis my gynecologist did a biopsy and found that I also have an Autoimmune disease in my pelvic area…. Some days I just wonder what I did to deserve all this!!! For pain relief I take the max dose of Neurontin 1200mg three times a day which makes me stutter sometimes and I also get tremors…. My doc also prescribed lidocaine ointment 10% which works really well once you get past not feeling your hooha when you wipe!!
I was wondering if anyone has an issue with moisture…. I feel that if I sweat or get a little damp it really exacerbates the pain… To the point that I can't stand anything touching me….
Nicky

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@mlross4508

Hi.
I too have been on a long journey of finding pain relief after several failed back surgeries. MFR therapy that I went through at Therapy in the Rocks in Sedona Az has really made my life so much better. I’ve been doing once a week MFR therapy , which helped open the door as it was the only treatment that helped with my spine, neurological issues, physical activities etc. But I really needed intensive therapy as once a week was not cutting it.
It’s a 2-3 Week intensive therapy program where you have 2-3 treatments per day!! Which has made a dramatic improvement in my quality of life. It’s no cake walk but you can start to feel and see the changes within the first 3-4 days. It’s not cheap but I would recommend it to all who have tried everything under the sun. If not able to go to the John Barnes facilitates , then I’d look for a PT that specializes in MFR.
GOOD LUCK

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Hi, my name is Ute. This is my first time on this blog, and I found your reply to Jennifer helpful. As you, I have been dealing with chronic pain now for eight years. I suffer from brachial Plexopathy, a peripheral nerve condition, following a fall that displaced my clavicle. Damage to my brachial plexus only manifested itself nearly a couple of years post 2009 injury. I lost function in my arm and hand on a week-by-week basis. Then the excruciating pain in my shoulder and upper arm began and has not subsided since. I was an enthusiastic hiker and climber here in the beautiful PNW where I had moved to from a Miami, Florida, to pursue my great passion as frequently as desired. My condition has ruined that. I can no longer wear a pack, and hiking/climbing mounts trails is too painful for my left extremity. Starting in 2016, I travelled out-of-state to USC, Mayo Clinic, and Washington University. All in all, I ended up with a prescription of Hydromorphone to get me ready for a Fentanyl patch, and a wrist fusion just six months ago that keeps my hand adhered to the wrist.

Opiates do not work for nerve conditions, and anticonvulsants and antidepressants make me sick and more suicidal. My PT can no longer help me. I keep fit despite the pain, hoping to get back into my beloved mountains and forests that I am bonded to. Fate perhaps led me to your comment when I first opened the blog. There you mentioned John Barnes and your intensive treatment at his facility. Looks exactly what I am looking for. Being very body self aware, I have experienced this myofascial release inadvertently on occasions. I don’t know how long ago you were at his facility. Is it still helping you? And, if you don’t mind, what was the cost for this intensive 2-3 week therapy?

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@adalwolfa

Hi, my name is Ute. This is my first time on this blog, and I found your reply to Jennifer helpful. As you, I have been dealing with chronic pain now for eight years. I suffer from brachial Plexopathy, a peripheral nerve condition, following a fall that displaced my clavicle. Damage to my brachial plexus only manifested itself nearly a couple of years post 2009 injury. I lost function in my arm and hand on a week-by-week basis. Then the excruciating pain in my shoulder and upper arm began and has not subsided since. I was an enthusiastic hiker and climber here in the beautiful PNW where I had moved to from a Miami, Florida, to pursue my great passion as frequently as desired. My condition has ruined that. I can no longer wear a pack, and hiking/climbing mounts trails is too painful for my left extremity. Starting in 2016, I travelled out-of-state to USC, Mayo Clinic, and Washington University. All in all, I ended up with a prescription of Hydromorphone to get me ready for a Fentanyl patch, and a wrist fusion just six months ago that keeps my hand adhered to the wrist.

Opiates do not work for nerve conditions, and anticonvulsants and antidepressants make me sick and more suicidal. My PT can no longer help me. I keep fit despite the pain, hoping to get back into my beloved mountains and forests that I am bonded to. Fate perhaps led me to your comment when I first opened the blog. There you mentioned John Barnes and your intensive treatment at his facility. Looks exactly what I am looking for. Being very body self aware, I have experienced this myofascial release inadvertently on occasions. I don’t know how long ago you were at his facility. Is it still helping you? And, if you don’t mind, what was the cost for this intensive 2-3 week therapy?

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@adalwolfa Welcome, Ute. Was there any surgery offered that could help you with the displaced clavicle? I know someone who had a congenital problem with the clavicle where the ligaments were small and weak and lost their connection to the sternum. She had surgery to reattach them, but it isn't a great solution because they will move more than they should even though they are attached. She can use her arm, but can't lift or raise it much. I got the impression from what she said that there are very few surgeons for that kind of problem. Do you still have compression of the brachial plexus from the clavicle? Since you have been seen at Mayo, you might want to connect with the department with Regenerative Medicine studies and see if there is anything you could participate in. I don't have any experience with that, but the are having some good results with stem cells with regeneration of the spinal cord in a patient. That was just in the news feed.

I have not had an intensive MFR treatment, but my therapist does MFR with me every week and told me about it. The cost might be a couple thousand dollars from what she said, but only the provider can answer that. They have 2 locations, one in Sedona, and another. There is a provider finder on the myofascialrelease.com website. Here is our myofascial release discussion where there is a lot of information and links. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I have done MFR since about 2012 and my PT is an expert level in the John Barnes methods. I do a lot on my own at home which helps my progress with thoracic outlet syndrome. In the middle of this, I had cervical spine surgery, and I am back working on the TOS again and making progress. I have lived with this for years, and it takes a lot of work and patience to work through the layers of tight tissue. There are also workshops around the country from John Barnes and some are geared for patients. He could be there, but not always as he is older now, and has a lot of his PTs teaching his methods. It would also be a place to connect with MFR therapists. From my personal experience, MFR helps me a lot, and I keep it going by adding my efforts at home, so I have self treatments most days with only one session with my PT. If I was to stop stretching on my own, I wouldn't progress anymore. Once you get the body moving properly again, you have to keep moving to avoid developing more problems.

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Good afternoon @adalwolfa, Welcome ….. to Connect. You have met a couple of great Connect members in @mlross4508, and @jenniferhunter. I may have a reference of some value in a brachial plexus surgeon and diagnostician in Houston, Texas. http://www.drnathbrachialplexus.com/ . A family member fell off her bicycle and injured her shoulder. She was seen at Mayo in 2005 where the diagnosis was excellent but the surgery options were not available at that time. She was referred to Dr. Nath in Houston. He was at the top of the heap when it comes to surgical procedures to "fix" a brachial plexus injury. The surgery went well and she was off to Europe to enter some bike runs. He has written books and has videos. I have photos of her shoulder before the surgery….pretty shocking. This may not pan out for you but may be worth comparing to other options. Knowledge is power. Be safe and free of suffering. Chris

Liked by Jennifer Hunter

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I got some test results in the mail today. I had to look up some big medical words to find out that the news is not too bad: I have arthritis and Stenosis in my neck, hyper-expansion in my lungs and more arthritis in the spine. It could be worse. I'm glad it's not cancer, broken bones, blood clots, leprosy … I'll see the doctors this week and get some kind of medicine hopefully.

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@pfbacon

I got some test results in the mail today. I had to look up some big medical words to find out that the news is not too bad: I have arthritis and Stenosis in my neck, hyper-expansion in my lungs and more arthritis in the spine. It could be worse. I'm glad it's not cancer, broken bones, blood clots, leprosy … I'll see the doctors this week and get some kind of medicine hopefully.

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@pfbacon, Thank you so much for sharing your results with the Connect community. When folks do that it helps everyone learn. Would you say that you can relate the symptoms you have been experiencing to the test results? What would be great is if you can share some of the results of your meeting with the doctors and tell us how they interpreted the tests and what their recommendations are at this point. Thanks for being an active and helpful member. Chris

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Everyone here helps me too. I had pain in my shoulder and neck, and also, congestion in my lungs making me short-winded and coughing a lot. I'll see both doctors this week and let you know. I'm hoping for physical therapy, not surgery or drugs. Peggy

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@pfbacon

I got some test results in the mail today. I had to look up some big medical words to find out that the news is not too bad: I have arthritis and Stenosis in my neck, hyper-expansion in my lungs and more arthritis in the spine. It could be worse. I'm glad it's not cancer, broken bones, blood clots, leprosy … I'll see the doctors this week and get some kind of medicine hopefully.

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@pfbacon Now you know what you have that's a relieve you can get treatment I have arthritis all through me In back ,hands and elsewhere Dr has me on Meloxicam Helps so much but I do have 2back fractures as well For me Meloxicam gives me relief Good luck .Will you keep us posted

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@artscaping

Good afternoon @adalwolfa, Welcome ….. to Connect. You have met a couple of great Connect members in @mlross4508, and @jenniferhunter. I may have a reference of some value in a brachial plexus surgeon and diagnostician in Houston, Texas. http://www.drnathbrachialplexus.com/ . A family member fell off her bicycle and injured her shoulder. She was seen at Mayo in 2005 where the diagnosis was excellent but the surgery options were not available at that time. She was referred to Dr. Nath in Houston. He was at the top of the heap when it comes to surgical procedures to "fix" a brachial plexus injury. The surgery went well and she was off to Europe to enter some bike runs. He has written books and has videos. I have photos of her shoulder before the surgery….pretty shocking. This may not pan out for you but may be worth comparing to other options. Knowledge is power. Be safe and free of suffering. Chris

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@adalwolfa @artscaping I remembered this doctor had been recommended by other patients here and they do brachial plexus surgeries. Here is the website https://www.advancedreconstruction.com/brachial-plexus-injuries-program/

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@pfbacon

How can we tell whether we have stressed fascias or not ? Would the MFR Therapy hurt us if we don't have it? Peggy

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MFR is a special type of PT that is designed to NOT be painful in order to get relief. It’s a slow deliberate treatment that slowly releases the fascia by either pushing, pulling, or stretching the fascia. It has worked wonders for me.
When searching for relief, make sure the treatment is done by a PT that has been trained by the pioneer John Barnes. It’s a very specialized type of PT.
Good luck

Liked by Jennifer Hunter

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@mlross4508

MFR is a special type of PT that is designed to NOT be painful in order to get relief. It’s a slow deliberate treatment that slowly releases the fascia by either pushing, pulling, or stretching the fascia. It has worked wonders for me.
When searching for relief, make sure the treatment is done by a PT that has been trained by the pioneer John Barnes. It’s a very specialized type of PT.
Good luck

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Thanks. I have researched it already and viewed some videos on their website. I’m a bit skeptical after that but will pursue it and learn more. After being in debilitating pain for years, one leaves no stone unturned.

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@jenniferhunter

@adalwolfa Welcome, Ute. Was there any surgery offered that could help you with the displaced clavicle? I know someone who had a congenital problem with the clavicle where the ligaments were small and weak and lost their connection to the sternum. She had surgery to reattach them, but it isn't a great solution because they will move more than they should even though they are attached. She can use her arm, but can't lift or raise it much. I got the impression from what she said that there are very few surgeons for that kind of problem. Do you still have compression of the brachial plexus from the clavicle? Since you have been seen at Mayo, you might want to connect with the department with Regenerative Medicine studies and see if there is anything you could participate in. I don't have any experience with that, but the are having some good results with stem cells with regeneration of the spinal cord in a patient. That was just in the news feed.

I have not had an intensive MFR treatment, but my therapist does MFR with me every week and told me about it. The cost might be a couple thousand dollars from what she said, but only the provider can answer that. They have 2 locations, one in Sedona, and another. There is a provider finder on the myofascialrelease.com website. Here is our myofascial release discussion where there is a lot of information and links. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I have done MFR since about 2012 and my PT is an expert level in the John Barnes methods. I do a lot on my own at home which helps my progress with thoracic outlet syndrome. In the middle of this, I had cervical spine surgery, and I am back working on the TOS again and making progress. I have lived with this for years, and it takes a lot of work and patience to work through the layers of tight tissue. There are also workshops around the country from John Barnes and some are geared for patients. He could be there, but not always as he is older now, and has a lot of his PTs teaching his methods. It would also be a place to connect with MFR therapists. From my personal experience, MFR helps me a lot, and I keep it going by adding my efforts at home, so I have self treatments most days with only one session with my PT. If I was to stop stretching on my own, I wouldn't progress anymore. Once you get the body moving properly again, you have to keep moving to avoid developing more problems.

Jump to this post

I have been at the Mayo Clinic and the Washington University. No viable pain solution has been offered. Regenerative medicine was not discussed. Surgery is no longer an option since the injury occurred in 2009. I, too do a lot in helping myself with a lot of exercise and fifteen miles of hill walking every week. The John Barnes method is certainly something that I am interested in, and I shall contact them shortly. I believe that would help me also. Thanks for your input.

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@artscaping

Good afternoon @adalwolfa, Welcome ….. to Connect. You have met a couple of great Connect members in @mlross4508, and @jenniferhunter. I may have a reference of some value in a brachial plexus surgeon and diagnostician in Houston, Texas. http://www.drnathbrachialplexus.com/ . A family member fell off her bicycle and injured her shoulder. She was seen at Mayo in 2005 where the diagnosis was excellent but the surgery options were not available at that time. She was referred to Dr. Nath in Houston. He was at the top of the heap when it comes to surgical procedures to "fix" a brachial plexus injury. The surgery went well and she was off to Europe to enter some bike runs. He has written books and has videos. I have photos of her shoulder before the surgery….pretty shocking. This may not pan out for you but may be worth comparing to other options. Knowledge is power. Be safe and free of suffering. Chris

Jump to this post

Yes, I have heard about Dr. Nathan. However, my injury was in 2009 and scar tissue, etc. make surgery a risky option for me. To boot, I have been that route already at the Mayo Clinic and the Washington University. I am looking for pain relief, and I was glad to hear on this blog about the Myofascial Release. That I will pursue. The concept makes total sense. Thanks for your input.

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@adalwolfa

Yes, I have heard about Dr. Nathan. However, my injury was in 2009 and scar tissue, etc. make surgery a risky option for me. To boot, I have been that route already at the Mayo Clinic and the Washington University. I am looking for pain relief, and I was glad to hear on this blog about the Myofascial Release. That I will pursue. The concept makes total sense. Thanks for your input.

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Good morning @adalwolfa, Wow…you are really digging in to find a tried and true option for pain management. I have already posted about my life with MFR.

Right now my pain is the all-over variety….where one size fits all. It is pretty much all I can do in the morning to drag my body into a hot shower. I then work on the restrictions on my own.

By Thursday when I have my MFR treatment, I have used yoga stretches, a cervical collar for my neck, 4 inch balls to get my spine in alignment, some hands-on movements to help with restrictions and considerable amounts of the appropriate medical cannabis, both topical and tincture.

I may not make it to the introduction of functionally restorative stem therapies. So I will stay active, give back to others and practice mindful meditation to help find joy every day. May you be free of suffering today. Chris

Liked by lioness

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