Chronic Pain members - Welcome, please introduce yourself

I was promoted to post my into when I read yours 🙂 - I had only been reading the posts before. I’m working hard to stay on top of it and not underneath of it!

Sue

Hello @mayopam and welcome to Mayo Clinic Connect. It is great to hear that you are so busy enjoying your hobbies and people you care about!

You asked about new developments, so thought I would share a recent publication that you may find useful.

- Fibromyalgia: changing the pain experience:
https://mcpress.mayoclinic.org/healthletter/fibromyalgia-changing-the-pain-experience/
In this article, it talks a good deal about cognitive behavioral therapy (CBT) and how that can help with the pain management. Is this something you have heard about?

Hello @sheld11004 and welcome to Mayo Clinic Connect. So sorry to hear about your accident and subsequent pain as well as the PNS complications.

You will notice that I have moved your post into another discussion on chronic pain to allow you to more easily connect with other members who understand what you are going through. You can find the discussion here: https://connect.mayoclinic.org/discussion/welcome-please-introduce-yourself-welcome-to-the-new-chronic-pain-group-im/

Here is an article that may be of interest. It talks about stretching and movement as two of the ways you can address and attempt to distract from pain.
- 8 tips for managing chronic pain: https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/8-tips-for-managing-chronic-pain

Is there any type of exercise you can tolerate to continue physical movement to some degree, even if just 10-15 minutes a day?

I have a story with many similarities from 2011. All forms of neurostimulation ended up aggravating my pain , like it does for you.
The main thing I can offer is commiseration. It sucks so much..I liken it to being trapped on one side of a river looking across at the other side where people are going about their normal lives oblivious to what a life with chronic pain is like ….it makes me bitter and angry .
I assume you’ve tried the various psychological pain approaches ..both the types that distract in the moment ( meditation , visualization etc) and the mind / body neuroplasticity stuff that changes the way your brain perceives the pain . There are a ton of these ..from books to courses, podcast , apps etc etc . They all have scientific success rates similar to any medical procedure or medicine , so it’s a combination of these that might be the thing . If you haven’t , that’s an important direction to go in .
Once you’ve gone down all those roads , like I have , you can try a “boot camp “ approach where you stop trying treatments , accept this pain demon and focus on living with it ..sounds horrible but it’s a way forward for many . I’m going to try it hopefully. I have applied to the Mayo Clinic's pain rehab program , which has this focus. Scary stuff , but at least I’ll meet people struggling like you and me . In the meantime , maybe a new treatment or surgery will be developed that will help you or me …they are getting better and better at turning nerves on ..they just need to get better at turning rogue ones off.
Feel free to commiserate , but if my “ Debbie downer” story is too triggering , I understand that completely .

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...

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?

@alh123
I am incredibly proud of you! You are more in control than you realize, you are braver than you think and stronger than you think. Please be proud of how far you've come by educating yourself, advocating for yourself and not giving up hope. I know its not easy, but you CAN do this. I believe in you!

@redhatter54 what cute fur babies!

I did receive from Mayo Clinic about a program that is a three week longs, the Boot Camp rehab that is the approach you talk about.
I’m still trying to find a doctor/group that works with hypersensitive nerves in my thigh and groin area which is below the damaged nerve. Touch in that area is painful, wearing clothes is sometimes painful. Physical movement of walking or riding in a car increases my pain.
Still looking for that doctor..

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.

Hi Colleen: My name is Shirley. I'm usually on the COPD group but this time I'm inquiring for my daughter, Kim, and I may not be in the right group so I'll just begin with telling you her symptoms and maybe you or someone out there can direct me or perhaps even help me.

My daughter is 53 years old. About 4 years ago she had a headache that brought her to the ER. She was put in a medically induced coma because the pain was so severe and was in ICU. She developed Sepsis which only worsend everything. Long story short, after many tests they found that her spinal fluid was leaking into her brain so she had to have her spinal fluid drained. She's now on medication for that and has been stable. Last week, very suddenly she was in excruiating pain in the right side of her head, face and neck and she was dizzy. This was very different than the pain she experienced 4 years ago. She went to Urgent Care thinking she was having a stoke. All her vitals were fine so the doctor ruled out a stroke. She's having a brain and head scan this week. So I guess my question is has anyone out there reading this ever experienced anything like this? Her symptoms are all on her right side and they include severe headache, sore throat, neck pain, jaw pain, ear pain, trouble swallowing food and liquids and dizziness. At Christmas last year she suddenly had severe pain in her right side that radiated from the right side of her ribs to underneath her right arm. I don't know if this is related but thought I add that also. She was diagnosed with gout about 2 weeks ago but that was in her left foot. Basically all her pain is in the head and neck area all on the right side. She was given muscle relaxers but they have done nothing to help her pain. She's not one to take the strong pain medication so all she's taking is Ibuprophen and keeping ice packs on her face. The ice packs give her some relief but only for a few minutes. She has a high tolerance for pain but this has brought her to tears. Her doctor is concerned but doesn't seem concerned enough to hospitalize her, especially knowing her background with the spinal cord leakage. Anyway, I told her about the group I follow and how wonderful they are and asked her if she minded if I put her symptoms out there and see f anyone has experienced anything similar.

So thank you all in advance for any information you can share. God bless you all and I pray you all are living a pain-free life right now.

Shirley, from Ohio