Aching legs from Small Fiber Neuropathy

Posted by rwinney @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

@healingone

I have Neuropathy, but I am not to the point you are yet.

Has Mayo assessed you for Chronic Pain Syndrome?

Mayo has an excellent Pain and Rehabilitation Program if you qualify to attend the 3 week training.

Have a great day!

Jump to this post

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

REPLY
@rwinney

Hello. Who is your post meant for?
Rachel

Jump to this post

@rwinney This has been a problem long standing We all need to address this way @lioness then I know it's for me You put this before the body of your comments Hope people read this makes it much easier then trying to desiver who it's for.Glad you asked this Linda Are you feeling any better

REPLY
@healingone

I have Neuropathy, but I am not to the point you are yet.

Has Mayo assessed you for Chronic Pain Syndrome?

Mayo has an excellent Pain and Rehabilitation Program if you qualify to attend the 3 week training.

Have a great day!

Jump to this post

Yes, I too am interested to hear more about the program if you can share more detail. Thank you – Rachel

REPLY
@healingone

I have Neuropathy, but I am not to the point you are yet.

Has Mayo assessed you for Chronic Pain Syndrome?

Mayo has an excellent Pain and Rehabilitation Program if you qualify to attend the 3 week training.

Have a great day!

Jump to this post

Curious if they accept Medicare? I have been turned down already for evaluation by Mayo last year.

REPLY
@lioness

@rwinney This has been a problem long standing We all need to address this way @lioness then I know it's for me You put this before the body of your comments Hope people read this makes it much easier then trying to desiver who it's for.Glad you asked this Linda Are you feeling any better

Jump to this post

Yes, much better than yesterday. Thank you.

REPLY
@rwinney

Curious if they accept Medicare? I have been turned down already for evaluation by Mayo last year.

Jump to this post

@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.

REPLY
@albiet

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

Jump to this post

If your search Mayo Pain and Rehabilitation Program on Connect, there is a video, Mayo Clinic Comprehensive Pain Rehabilitation Center in Jacksonville, Florida.

I am not able to post links yet.

On YouTube, Dr. Sluten has a Central Sensitization video. Central Sensitization is what the program treats.

Have a great day!

REPLY
@rwinney

May I ask anyone out there…if you also experience uncontrollable temperature regulation, flush skin/ face, dizziness? I have experienced all of these symptoms for several years and understand that it's part of my autonomic and sensory neuropathic discomforts. Ruled out menopause as I was greatly confused for some time.

Also, and I believe @jimhd suffers from this…my newest "trick" is swallowing discomfort and pain. It began last September and I thought it was happening because of dense food (peanut butter sandwhich) but has now progressed to happening with a simple sip of water. My esophagus feels every bit go down from a tiny pill to a chunk of meat. There are times when the food or pill feels as if it lingers in the top of my stomach or at the sides of my throat. I now need to cut food smaller, chew longer and drink more. Still, I'm very uncomfortable for the next 1-2 hours. I never choke but the sensations are there. Sometimes more noticeable than others. Overall it's discomfort but there can be pain that makes me feel like I need to stand tall and elongate my body for things to pass through. Have doubled over from it too.

My research tells me it's muscle weakness from SFPN, which explains the inconsistency, verses digestive problems. Either way, I'm back with a gastroenterologist while tryng to figure out my "chronic copper poisoning" for the past year and going for an esophogram with endoscopy on tap.

Come one, come all with any thoughts, experiences or advice on any if this. I probably should have started a new thread.

Jump to this post

@rwinney, Your new "trick" has been around my neighborhood for more than a year. It started when I flew home to CA right before the big fire last summer. My granddaughter drove me up the mountain.

Shortly after we arrived, we got the notice to evacuate. We were just finishing our breakfast at the Plant Food Supper Club (cool place). I was pretty anxious and that is when it started…could not swallow and I panicked because of the discomfort. My granddaughter told me not to talk so much and it would get better because I was sucking air too fast……..and I think she was right. Evidently I was taking in too much air because of the anxiety. Now I know how to stop the esophageal swallowing issue. If I have problems, a few moments of MFR (myofascial release therapy) will calm everything down. My MFR therapist told me it is not an uncommon problem. First step to try is meditation. Just ramp everything down…..
Be at ease with your body. Chris

REPLY
@rwinney

Curious if they accept Medicare? I have been turned down already for evaluation by Mayo last year.

Jump to this post

They are excepting my Medicare I understand

Liked by rwinney

REPLY
@artscaping

@rwinney, Your new "trick" has been around my neighborhood for more than a year. It started when I flew home to CA right before the big fire last summer. My granddaughter drove me up the mountain.

Shortly after we arrived, we got the notice to evacuate. We were just finishing our breakfast at the Plant Food Supper Club (cool place). I was pretty anxious and that is when it started…could not swallow and I panicked because of the discomfort. My granddaughter told me not to talk so much and it would get better because I was sucking air too fast……..and I think she was right. Evidently I was taking in too much air because of the anxiety. Now I know how to stop the esophageal swallowing issue. If I have problems, a few moments of MFR (myofascial release therapy) will calm everything down. My MFR therapist told me it is not an uncommon problem. First step to try is meditation. Just ramp everything down…..
Be at ease with your body. Chris

Jump to this post

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

Liked by lioness

REPLY
@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!

Liked by Lisa Lucier

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
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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.

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

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

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