Chronic Pain members - Welcome, please introduce yourself

Hi Dave, @jenniferhunter started a discussion you might find helpful from what other members have shared:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of or tried Myofascial Release Therapy?

I have all the symptoms of ACNES , basically neuropathic pain, as you indicated. Upon movement etc it can be a 10. The pain has not gone away, I have had it for a month but I cannot get a DR to see or examine me so I have to try and tell them over the phone what i think it might be and what medication they should prescribe. Nothing really relieves it ad they will not prescribe any strong analgesia. Can I ask, are people led to believe that we have a great health care system in the UK? because if so then you are truly being lied to, it is horrendous and they do not care whether you live or die.

By way of introduction, my name is Kelly. I’m from the Dallas, TX area. I have erythromelalgia and migraines and was diagnosed with early stage breast cancer this past April. I completed treatment for BC (yay!) but the change in meds have thrown my other conditions into a tailspin. Wondering if anyone else has dealt with erythromelalgia and hormone blockers?
Nice to meet you all.

By way of introduction, my name is Kelly. I’m from the Dallas, TX area. I have erythromelalgia and migraines and was diagnosed with early stage breast cancer this past April. I completed treatment for BC (yay!) but the change in meds have thrown my other conditions into a tailspin. Wondering if anyone else has dealt with erythromelalgia and hormone blockers?
Nice to meet you all.

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.

I get on and off flares of Arthritis/Fib, knees, hands, back ( fusion), ulnar nerve). I know older people who were given low dose prednisone for years. Like another poster in this thread, doctors use to give older people about 5mg once a day for years ( 20) . If its low dose it does not do the same damage. There are some studies that it may help muscle waisting. I imagine if you are diabetic or have other problems it may be contraindicated. When it happens to me I cycle on and off low dose and taper down after a few weeks and it keeps the flares manageable. I can't take Codeines and wouldn't want to long term anyway. I use Kefir to reinforce my gut and that has helped as well. And a good quality Curcumin with pepper. And of course try to walk as much as you can even if its not a lot and stretches.

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.