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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@johnbishop

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?

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Yes, my p.t. is doing it now.

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@horthog

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.

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There is a clinic in wimbledon that treats ACNES. GOOGLE ACNES WIMBLEDON

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Hi @notmoff - I've moved your post to this chronic pain discussion "Welcome Please Introduce Yourself" and think your helpful book suggestions will be well received here.

I've tagged @colleenyoung in case she has a thought of where else your list should be shared.

Thank you for sharing the following collection of pain management books recommended by your pain management group - Kaiser Regional Chronic Pain programs:

• Buddha’s Brain: The Practical Neuroscience of Happiness, Love,
and Wisdom by Rick Hanson, PhD, and Richard Mendius, MD
(available for purchase in the KP Health Education Department)

• They Can’t Find Anything Wrong! 7 Keys to Understanding,
Treating, and Healing Stress Illness by David D. Clarke, PhD

• Writing to Heal: A Guided Journal for Recovering from Trauma
and Emotional Upheaval by J. W. Pennebaker

• The Little ACT Workbook by Michael Sinclair, PhD

• The Mindful Self-Compassion Workbook: A Proven Way to Accept
Yourself, Build Inner Strength, and Thrive by Kristin Neff, PhD, and
Managing Your Pain Participant Workbook 130
Christopher Germer, PhD

• The Brain’s Way of Healing by Norman Doidge, MD

• Living Beyond Your Pain: Using Acceptance and Commitment
Therapy to Ease Chronic Pain by JoAnne Dahl, PhD, Tobias
Lundgren, MS, and Steven C. Hayes, PhD

• Managing Pain before It Manages You by Margaret Caudill, MD,
PhD

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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.

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@kellyc14

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.

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Welcome to the funny farm. 😁 while I suffer from migraine that's not my main. I can't help with the your specific issue but this is a great place to find support and sometimes answers.

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@kellyc14

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.

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@kellyc14 Hello and welcome, Kelly, it's nice to meet you too. From the sounds of it you have your challenges, I'm sorry about that.

Congratulations on early detection of breast cancer and completing treatment! Good news. I understand how things like sensory issues and migraine can be difficultly managed when medications mitigate. Although I'm not familiar with hormone blockers, having CSS and migraine, I empathize with you.

Perhaps this discussion about hormone blockers will provide help -

Questions about Hormone Blockers: Side Effects -
https://connect.mayoclinic.org/discussion/lost-and-confussed/
How long have you been on the new meds?

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@mlm666

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.

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OMG,you are so right! We DO need a medical "generalist" to be our coordinator! This is a freakin' full-time job! Hoping you find a solution! This is a slow death for you to suffer like this. You have my complete heartfelt wishes that you'll find an answer. 🤗

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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.

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@msddsq

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.

Jump to this post

I have lower back pain, neck pain and ankle pain. I am intrigued that you are managing pain with diet. I am trying to put off cortisone shot as long as possible. I see a chiropractor rwice a week. There will be a break as my chiropractor is having surgery for breast cancer. So I am keeping up the stretching and perscribed PT exercises but I want to know more about diet. Maybe that will help with circulation.

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@mlm666

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.

Jump to this post

The one provider you didn’t mention, although it may be an error, was rehabilitation medicine. A good one who are internet’s first and a DO over an MD. The Doctor of Osteopathic Medicine knows your bones I feel a bit better than an MD. And in my personal experience of suffering since my 1988 fall I feel I’ve received better care from DO’s overall. They are both essentially trained the same in rehab medicine though. My 2 cents,

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