Chronic Pain members - Welcome, please introduce yourself

Not at my age. I still have to contend to my kidney stones. i may need another operation to remove them.

Hi,

my name is Clare. I have
chronic pain due to chronic pancreatitis which has been caused by Pancreatic Divisum. I’m 32 years old and I am from Wisconsin.

Hi my name is Lori and I currently live in a transitional shelter for domestic violence. My pain started about 30 yrs ago and was somewhat tolerable until over 2 yrs ago when it quickly became extremely intolerable. I'm pretty much bed ridden and it isn't something I tend to easily. It's nice to be able to be here, thank you ☺️

St this point in my life I can't stand to be in my own skin for pain rules and dictates my ever single move.

@janicecarter
Janice, I’m so sorry to hear about your constant pain. Pain also saps your energy.
I just heard from a friend in her 70s with lifelong scoliosis. She is having surgery this week. They are going to fuse 13 vertebrae. It was a difficult decision, but she hopes to get a better quality of life.
Kidney stone pain is another bad one- my daughter has dealt with it.
Have you thought about getting another opinion from a place like Mayo Clinic?

My name is Patricia I live in the southern part of Alabama . I just turned a young 70 . My first time in any support groups, chat. Hopefully I can learn from you all . My ailments are many my faith is still intact my sense of humor keeps me from going insane. My daughter asked me what I wanted for Christmas my response was a cure.

Welcome new members, @lorimarie and @shirleygirl1.

Lori, I'm sorry to hear that you are a victim of domestic violence, but proud of you that you have sought help and are in transition. You said you've been dealing with pain for about 30 years and that you don't even want to be in your own skin. That's a lot. Do you know what the source of your pain is?

Shirley, good for you for venturing onto this support group for support. Can you share more about what you're facing?

@renocmh Hello and welcome, Clare. I'm sorry that you struggle with chronic pain from pancreatitis. That does not sound very pleasant at all. I did a bit of research to better understand pancreatic Divisum, and learned that it is a birth defect. How have you been managing chronic symptoms all along? Have you explored any type of treatment options?

Moderator, please recommend the correct forum for my topic. - thank you!
.........
Am I candidate for Mayo Clinic’s Diagnostic Care Service?

• I turned 76 in the spring of 2022.
• In the fall of 2017, my husband and I were adding sections to our Appalachian Trail adventure in Vermont & New Hampshire.
• We attended multi-day outdoor music festivals.
• We attended and participated in the activities of our teenage grandchildren.
• I shared the work on our mini-farm.
• I looked forward to the extended trips planned by my husband that all involved outdoor activities and active merriment.
• I loved to plan for and host company for life events.
• In other words, I engaged in a robust fulfilling life.

Today
• I endure daily excruciating wide-spread & moving pain, exhaustion, and dizziness. There are no flares; the symptoms are constant.
• If I make it 100 yards to the mailbox and back, I am very lucky.
• I no longer do the shopping.
• I no longer drive.
• I must RSVP all occasions with a “Sorry, I can’t attend.”
• I no longer make reservations for a future event in the hopes that “I will be feeling better.”
• I pay dearly for the slightest and abbreviated effort of engaging in the things that the old me always did.
• I collapse on the sofa, turn the lights out and sit.
• I really do not know myself anymore.

This post is not the place to detail all that is in my diary that covers my health events, clues, and the details of the medical-merry-go-round that I have been on in my quest for a diagnosis and treatment plan. I am, however, going to list the types of doctors and specialists that have been an all-consuming part of my life to give you an idea of what I have tried.

I must comment that I have observed a serious flaw in our medical system.
• It is challenging to find a physician to be the coordinating “quarter back” who interprets the snippets of findings from specialists.
• Specialists, by definition, have a very narrow field of view. They are restricted by their specialty from providing a multi-disciplined approach to problem solving.
• Specialists tend to find symptoms in their “wheelhouses” and discard the bigger, more comprehensive picture and pursue a treatment plan with which they are familiar.

I have been seen and treated by:
• Primary Care Physicians
• Cardiologists
• Gynecologists
• Urologists
• Nephrologists
• Endocrinologists
• Internal Medicine Specialists
• Physical Therapists
• Gastroenterologists
• Acupuncturists
• Pain Management Clinics
• Sleep Disorder and Pulmonary Specialists
• Neurologists
• Vestibular Rehab
• Rheumatologists
• Surgeons
• Dietitians
• Mayo Clinic for Gastroenterology
• Pain Medicine Specialists
• Chiropractors
• Allergists

But again, no ONE provides a multidisciplinary, coordinated approach to make a diagnosis. The medical community tends to provide the approach (treatment) limited to the individual provider’s own tool kit and the treatment plans are not coordinated sometimes at cross-purposes. In my journey, I feel like the medical community is like an auto repair shop that lacks effective diagnostic tools and just keeps changing parts in the hopes that the “strange noise” from the engine goes away.

So, I return to the original question, “Am I candidate for Mayo Clinic’s diagnostic care service?” “Does anyone have experience with Mayo Clinic’s diagnostic care service?”

All thoughts, comments, and suggestions are certainly welcome.
And thank you for reading my story.

Welcome, @mlm666. I would recommend filling out the online request an appointment form to find out if Mayo Clinic is right for you. It is an easy process to learn more.

- Start by going here: http://mayocl.in/1mtmR63
- Click "Begin an online request"
- Complete the 4 step form
- Once you fill out the relevant information, a coordinator will schedule a time to review your request.

To learn more about the Mayo Clinic comprehensive approach:
- See this webpage: Why Choose Mayo Clinic https://www.mayoclinic.org/why-choose-mayo-clinic

You may also be interested in this related discussion in the Visiting Mayo Clinic group:
- Evaluating Care Models at Top Hospitals to Fit an Individual Patient https://connect.mayoclinic.org/discussion/evaluating-care-models-at-top-hospital-to-fit-an-individual-patient/