Aching legs from Small Fiber Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Oct 23, 2019

One of my relentless symptoms from neuropathy is profusely aching legs. Does anyone share this symptom with me? At times I wonder if it could be another issue. They hurt so bad and create pain when walking continuously. Both legs feel heavy, tired and can't get much mileage. When I walk it's as though they are full of lead and they make me go at a turtles pace. If I stop and don't move they may settle a bit but then same old situation as I walk again. Only relief is being elevated and wrapped with heat or soaking in warm water. That buys me maybe a half hour or an hour tops. Same goes for any topicals. A tight wrap feels good almost like a weighted blanket does. Something about tightening the muscles does too.
I appreciate comments or feed back you may have to share on this.
Thanks all,
Rachel

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

@johnhans

@rwinney the way it was explained to me last year was that Mayo does accept Medicare, but the different departments have differing amounts of people they accept for Medicare. Mayo is very popular and cannot accept everyone for every department. Thus even non Medicare patients may be turned away. I believe the best way would be to have your doctor refer you to Mayo and see what happens. There is also a phone number to call about being admitted. Some one on here probably knows more about this.

Jump to this post

No worries. I have contact numbers and a case number. I've done homework on Mayo just not so much on the rehab program specifically. And I had terrible insurance before being o. Medicare that they did not even recognize. Thank you for sharing the knowledge you have. Be well this evening.

REPLY
@albiet

@healingone can you tell me what they do in the program ?

Jump to this post

Video transcript.

Dr. Sletten is the program director.

CHRISTOPHER SLETTEN: Hello. My name is Christopher Sletten. I am the clinical director of the Mayo Comprehensive Pain Rehabilitation Program, in Jacksonville, Florida. I'd like to take this opportunity to discuss some of our treatment and clinical options for patients with difficult to manage chronic symptoms. The Pain Rehab Program here in Florida opened in October of 2011. And we now have a capacity to treat 30 patients at a time. This program was based on the original model from Rochester, which has been in existence since 1974.

One of the things I'd like you to think about today as we discuss the treatment program is those patients of yours that have been a challenge to manage, you've run out of treatment options, you and your patient are frustrated with what to do next, and you're looking for alternatives to help them manage their symptoms on a long-term basis. Our basic treatment model is based on a cognitive behavior therapy model, with an integrated team approach. The basic components of treatment in our program include physical reconditioning, biofeedback and relaxation strategies, teaching stress management, chemical health, activity moderation, and behavioral interventions for chronic pain.

Historically, pain rehabilitation programs have treated individuals with back pain, headaches, musculoskeletal, limb pain, joint pain, abdominal pain. And certainly, those are the patients that we continue to actively treat. The past few years, we've actually broadened our treatment spectrum to include patients with chronic fatigue, non-epileptic spells, movement disorders, multiple chemical sensitivities, and even individuals with chronic GI distress, including cyclic vomiting, dyspepsia et cetera.

The program itself is a day treatment program based in the hospital. Patients attend Monday through Friday, 8:00 to 4:30, for three consecutive weeks. This is preceded by an admission day, where the patient is evaluated by all the members of the treatment team.

One thing I want to emphasize, for your information, is the fact that we use a multidisciplinary team approach. And in fact, it's very highly interdisciplinary. We use physical therapy, occupational therapy, psychology, nursing, and medical staff in our treatment team. Physical therapy engages in a reconditioning approach that primarily focuses on whole body exercises, stretching, strengthening. But we also minimize and actually de-emphasize the use of modalities and hands-on physical therapy. Occupational therapy employs the use of moderation, modification, and time management, and other strategies, to help the patient engage in a broad range of daily activities.

From a psychological perspective, the groups emphasize stress management, behavioral management, cognitive approaches to managing pain, and coping with chronic symptoms. Our medical team includes the RNs and physician's assistants, and physicians. This group of individuals monitor the patient's health status, monitor medication changes, and form the foundation for our medical supervision of our complex patients.

Throughout the whole history of pain rehabilitation, we focus on three pillars of treatment. And I've alluded to those briefly. We emphasize medication elimination. Particularly with the strong psychoactive medications, we actively and thoroughly eliminate opiate analgesics, benzodiazepines, sleeping medications, stimulants. We also reduce and eliminate muscle relaxers, anti-inflammatories, and other symptom-managing agents. Our physical therapy regimen includes, as I mentioned, physical reconditioning. And we work with the individuals to change their approach to their chronic symptoms, from one of symptom management to lifestyle management.

We have a very active evaluation and admission process. Most of our patients wait a matter of days to a few weeks for admission. We're very keenly interested in getting the appropriate patient into treatment as quickly as possible, since many have been suffering for a great many years.

Our outcomes have been well established. The treatment literature for the effectiveness of pain rehab is well established. We have consistently shown a significant decrease in pain scores, depression scores. We've also seen a significant improvement in daily activities and the patient's perception of control over their pain state.

Research activities, both here and in Rochester, continue. and the maintenance of these gains is also quite profound. Over 75% of our patients are still showing treatment improvement one year after the program. Additionally, we work very actively to help our patients reduce their reliance on the health care system. We actively educate them about the appropriate use of primary care, de-emphasizing continued utilization of specialty care and symptom management treatment.

Finally, what happens after the program, all of our patients are invited to aftercare, which occurs, at this point, on an every other month basis for two hours in an afternoon. And patients are encouraged to return to meet with the staff and other graduates of the program. This time we found to be very clinically effective for the patients to experience support from staff and other graduates, and also somewhat of a refresher course in the principles of pain rehabilitation.

Any questions or interest in this program can be directed to the Pain Rehabilitation Center. We are very interested in assisting you and your patients to have them have a better future and a better outcome in dealing with their chronic symptoms. Thank you very much.

PUBLISHED

May 5, 2015

Refer a Patient
NPI Number Required
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REPLY
@lisalucier

This might indeed be a good new thread, @rwinney, on the subject of swallowing discomfort and pain, if you'd be willing to start it.

Jump to this post

Hi Lisa. I started a thread - there is a bit to move now. I hope it can get streamlined. Not sure how easy it is on your end but, thanks for helping!

REPLY
@albiet

@healingone can you tell me what they do in the program ?

Jump to this post

Overview
Mayo Clinic's Pain Rehabilitation Center (PRC) was one of the first pain rehabilitation programs in the world. In operation since 1974 in Rochester, Minnesota, the PRC has helped thousands of people with chronic pain.

Similar centers were established in 2011 at Mayo Clinic's campus in Jacksonville, Florida, and in 2016 at Mayo Clinic's campus in Phoenix, Arizona.

Woman pedaling with her arms
Physical therapy boosts strength and endurance
A physical therapist shows a woman how to use an exercise machine to help increase her cardiovascular endurance.

The Pain Rehabilitation Center at each campus is staffed with an integrated team of health care professionals trained in many areas, including pain medicine, physical therapy, psychology, occupational therapy, biofeedback and nursing.

The program assists participants in eliminating the use of pain medications. Individuals who are not taking pain medications also are welcome to attend the PRC, and they make up a large proportion of participants in the program.

With the support of staff and peers in the program, participants regain strength and stamina, and shift toward a focus on what they can do to regain control over their life again.

The PRC at all three campuses provides a three-week program for adults. The Minnesota PRC also offers a two-day program for adults as well as pediatric programs for those age 13 and older.

People come to Mayo Clinic's Pain Rehabilitation Center with many different types of chronic pain and conditions. Examples include:

Chronic back pain
Fibromyalgia
Nonepileptic spells
Chronic fatigue
Headaches, including migraines
Generalized pain or pain in multiple areas
Abdominal pain
Postural orthostatic tachycardia syndrome (POTS)
Upper or lower body pain, such as pain in the chest wall, jaw, face, pelvis or joints
Pain after removal of breast tissue from a breast (mastectomy)
Nerve (neuropathic) pain
Complex regional pain syndrome
In addition to chronic pain, some people also have depression. Psychologists provide group-based cognitive behavioral treatments and help identify a trained therapist close to the person's home for care after program completion.

© 1998-2020 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved.

REPLY
@healingone

Video transcript.

Dr. Sletten is the program director.

CHRISTOPHER SLETTEN: Hello. My name is Christopher Sletten. I am the clinical director of the Mayo Comprehensive Pain Rehabilitation Program, in Jacksonville, Florida. I'd like to take this opportunity to discuss some of our treatment and clinical options for patients with difficult to manage chronic symptoms. The Pain Rehab Program here in Florida opened in October of 2011. And we now have a capacity to treat 30 patients at a time. This program was based on the original model from Rochester, which has been in existence since 1974.

One of the things I'd like you to think about today as we discuss the treatment program is those patients of yours that have been a challenge to manage, you've run out of treatment options, you and your patient are frustrated with what to do next, and you're looking for alternatives to help them manage their symptoms on a long-term basis. Our basic treatment model is based on a cognitive behavior therapy model, with an integrated team approach. The basic components of treatment in our program include physical reconditioning, biofeedback and relaxation strategies, teaching stress management, chemical health, activity moderation, and behavioral interventions for chronic pain.

Historically, pain rehabilitation programs have treated individuals with back pain, headaches, musculoskeletal, limb pain, joint pain, abdominal pain. And certainly, those are the patients that we continue to actively treat. The past few years, we've actually broadened our treatment spectrum to include patients with chronic fatigue, non-epileptic spells, movement disorders, multiple chemical sensitivities, and even individuals with chronic GI distress, including cyclic vomiting, dyspepsia et cetera.

The program itself is a day treatment program based in the hospital. Patients attend Monday through Friday, 8:00 to 4:30, for three consecutive weeks. This is preceded by an admission day, where the patient is evaluated by all the members of the treatment team.

One thing I want to emphasize, for your information, is the fact that we use a multidisciplinary team approach. And in fact, it's very highly interdisciplinary. We use physical therapy, occupational therapy, psychology, nursing, and medical staff in our treatment team. Physical therapy engages in a reconditioning approach that primarily focuses on whole body exercises, stretching, strengthening. But we also minimize and actually de-emphasize the use of modalities and hands-on physical therapy. Occupational therapy employs the use of moderation, modification, and time management, and other strategies, to help the patient engage in a broad range of daily activities.

From a psychological perspective, the groups emphasize stress management, behavioral management, cognitive approaches to managing pain, and coping with chronic symptoms. Our medical team includes the RNs and physician's assistants, and physicians. This group of individuals monitor the patient's health status, monitor medication changes, and form the foundation for our medical supervision of our complex patients.

Throughout the whole history of pain rehabilitation, we focus on three pillars of treatment. And I've alluded to those briefly. We emphasize medication elimination. Particularly with the strong psychoactive medications, we actively and thoroughly eliminate opiate analgesics, benzodiazepines, sleeping medications, stimulants. We also reduce and eliminate muscle relaxers, anti-inflammatories, and other symptom-managing agents. Our physical therapy regimen includes, as I mentioned, physical reconditioning. And we work with the individuals to change their approach to their chronic symptoms, from one of symptom management to lifestyle management.

We have a very active evaluation and admission process. Most of our patients wait a matter of days to a few weeks for admission. We're very keenly interested in getting the appropriate patient into treatment as quickly as possible, since many have been suffering for a great many years.

Our outcomes have been well established. The treatment literature for the effectiveness of pain rehab is well established. We have consistently shown a significant decrease in pain scores, depression scores. We've also seen a significant improvement in daily activities and the patient's perception of control over their pain state.

Research activities, both here and in Rochester, continue. and the maintenance of these gains is also quite profound. Over 75% of our patients are still showing treatment improvement one year after the program. Additionally, we work very actively to help our patients reduce their reliance on the health care system. We actively educate them about the appropriate use of primary care, de-emphasizing continued utilization of specialty care and symptom management treatment.

Finally, what happens after the program, all of our patients are invited to aftercare, which occurs, at this point, on an every other month basis for two hours in an afternoon. And patients are encouraged to return to meet with the staff and other graduates of the program. This time we found to be very clinically effective for the patients to experience support from staff and other graduates, and also somewhat of a refresher course in the principles of pain rehabilitation.

Any questions or interest in this program can be directed to the Pain Rehabilitation Center. We are very interested in assisting you and your patients to have them have a better future and a better outcome in dealing with their chronic symptoms. Thank you very much.

PUBLISHED

May 5, 2015

Refer a Patient
NPI Number Required
Related Videos

Practical evaluation and management of the patient with spasticity
Practical evaluation and management of the patient with spasticity

Mayo Clinic physiatrists Billie A. Schultz, M.D., and Michael C. Wainberg, M.D., present clinical and objective measures commonly used to assess patients with spasticity and discuss multidisciplinary interventions for management.

Improving muscle health
Improving muscle health

Nathan K. LeBrasseur, M.S., Ph.D., associate professor and co-chair of research in the Department of Physical Medicine and Rehabilitation, Mayo Clinic College of Medicine, discusses age- and disease-associated muscle loss.

Gene therapy for neuromuscular diseases: Surprising lessons learned from dogs
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Martin Childers, D.O., Ph.D., is joined by Carmen M. Terzic, M.D., Ph.D., to discuss his gene therapy work.

Age-related muscle loss
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Nathan K. LeBrasseur, M.S., Ph.D., discusses research at the Robert and Arlene Kogod Center on Aging with Carmen M. Terzic, M.D., Ph.D., chair of Physical Medicine and Rehabilitation, at the 2015 Fourth Annual Symposium on Regenerative Rehabilitation.

Gene therapy for cartilage regeneration
Gene therapy for cartilage regeneration

Christopher H. Evans, Ph.D., and Carmen M. Terzic, M.D., Ph.D., discuss gene therapy for cartilage regeneration at the 2015 Fourth Annual Symposium on Regenerative Rehabilitation.

Using ultrasound elastography to quantify passive muscle stiffness in children: Effect of spasticity and botulinum toxin on muscle
Using ultrasound elastography to quantify passive muscle stiffness in children: Effect of spasticity and botulinum toxin on muscle

Joline E. Brandenburg, M.D., Physical Medicine and Rehabilitation, discusses the rationale for studying passive muscle stiffness, the effects of spasticity on muscle in children with cerebral palsy.

Use of exoskeletons in individuals with spinal cord injuries
Use of exoskeletons in individuals with spinal cord injuries

A three-phase clinical trial explores a lightweight exoskeleton system to evaluate its impact on the lives of people with mobility issues due to spinal cord injuries.

Adipose-derived stem cell treatment for osteoarthritic knees
Adipose-derived stem cell treatment for osteoarthritic knees

Jay Smith, M.D., describes a clinical trial to evaluate the safety and efficacy of adipose-derived mesenchymal stromal cell injections as a treatment for people with osteoarthritic knees.

Enhancing stem cell therapeutics for volumetric muscle loss
Enhancing stem cell therapeutics for volumetric muscle loss

Thomas Rando, M.D., Ph.D., chief of neurology and director, Rehabilitation Research and Development, Stanford University, and Carmen M. Terzic, M.D., Ph.D., chair of Mayo Clinic Physical Medicine and Rehabilitation, discuss enhancing stem ...

HELPFUL LINKS

Request An Appointment
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Contact Us
About Mayo Clinic
Employees
Site Map
Any use of this site constitutes your agreement to the Terms and Conditions and Privacy Policy linked below.

Terms and Conditions
Privacy Policy
Notice of Privacy Practices

Mayo Clinic is a not-for-profit organization and proceeds from Web advertising help support our mission. Mayo Clinic does not endorse any of the third party products and services advertised.

Advertising and sponsorship policy
Advertising and sponsorship opportunities

A single copy of these materials may be reprinted for noncommercial personal use only. "Mayo," "Mayo Clinic," "MayoClinic.com," "EmbodyHealth," "Enhance your life," and the triple-shield Mayo Clinic logo are trademarks of Mayo Foundation for Medical Education and Research.

Powered by the BroadcastMed Network
BroadcastMed Privacy Policy
© 1998-2020 Mayo Foundation for Medical Education and Research. All rights reserved.

Jump to this post

W O W ! ! ! Thank you so much for posting such helpful, awesome information. What a dream this would be. If only Mayo offered scholarships.

REPLY
@jimhd

I'm a native New Yorker, lived in Brockport, Canandaigua and Jamestown. Then my parents moved to California while I was in college. I have esophageal dysmotility and silent reflux and whatever. I chew everything endlessly until it's pureed. The little bite of food makes its way to the top of my esophagus, then it moseys on down to the bottom of the esophagus and waits for the valve to open and allow the food to get to my stomach. Right now I'm eating pancakes in a restaurant. I don't want to know how many calories of syrup I've used to make it easier to swallow. My poor wife, who isn't with me, finishes her meal when I'm only half way. Usually she plays games on her tablet while I finish the chore of swallowing. I find that I am eating less because I get tired of the process. That's something the speech therapist warmed me of, and told me not to lose any more weight. Recently swallowing liquid has become an issue. Not supposed to drink carbonated drinks or use a straw.

I'm done with chewing now, so I'm going to head home.

Happy Chewing!

Jim

Jump to this post

@jimhd Hi, Jim, @lioness asked me to jump in here. When you say that swallowing liquids is a problem, do you mean those with a regular consistency? I had the same problem when I was first diagnosed. It was suggested that I use a product called Thick-it. You add it to your drink to thicken it and it’s tasteless. Not sure if that info helps, but....Becky

REPLY

Thought this link to an overview of the Pain Rehabilitation Center might be useful https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

REPLY
@rwinney

So much to this life! I liked it wayyyy better when I was young and naive. 😉

Jump to this post

@rwinney I'm glad you feel better today .I'm have routine blood work today .With pain everyday is an adventure.

REPLY
@becsbuddy

@jimhd Hi, Jim, @lioness asked me to jump in here. When you say that swallowing liquids is a problem, do you mean those with a regular consistency? I had the same problem when I was first diagnosed. It was suggested that I use a product called Thick-it. You add it to your drink to thicken it and it’s tasteless. Not sure if that info helps, but....Becky

Jump to this post

@becsbuddy For the life of me I can remember that name and so simple thanks putting it in my Brain roledex

REPLY
@tfarrell

Preaching to the gallery. My right calf has just about disappeared, I have trouble getting up if I’m on my knees and I get pain so bad at night I just want to take a hammer and beat my legs. I’m tired from getting the attacks 2-3 nights a week and waking up in the morning wondering where my legs are.

Jump to this post

Hi, @tfarrell - welcome to Mayo Clinic Connect. I believe you are talking about attacks of numbness in your calf as well as pain in your legs? Is that correct? Are you getting any treatment currently?

REPLY
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