Chronic Pain members - Welcome, please introduce yourself

@nickeyfriskle Welcome to connect A great group,caring group of people with different problems We give our experience with
what helps us Wish you well in getting a treatment for your pelvic pain

@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

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

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?

@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.

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

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.

@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

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

@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