Hi Rachel
Thanks for the link. I will listen to the whole thing later. I believe I have seen his earlier video.
I have participated in mindfulness courses, and practice it as well (although not as well as I should). I use Curable, and I am an advocate for mindfulness practice.
However, I'd like to point out that in the case of typical Small Fiber Peripheral Neuropathy, there is an actual physical injury (tissue damage), which can be demonstrated by a punch biopsy. Similarly in other forms of PN.
This is somewhat different from other forms of chronic pain syndromes.
Not to discourage anyone from trying this form of therapy. In many cases, it is the only thing that works.
Hi @jeffrapp, it's nice to hear from you again. You and I have chatted in the past about Curable and the practice of mindfulness. I think the Curable App is a great, useful tool, and I love that you advocate for it's use on Connect to help others. Thank you!
I appreciate you making the point about tissue damage and neuropathies. I also was diagnosed with SFN via a skin punch biopsy. Whew, it all gets too confusing sometimes 😜. To correct myself, what I learned at Mayo Clinic from Dr. Sletten regarding the upregulation of the central nervous system and peripheral input resulting in increased sensitization and chronic symptoms (Central Sensitization Syndrome), was that both acute and chronic conditions CAN have tissue damage. Here is the difference from a CSS perspective:
It's so important that each person reviews pain-management programs, tools, apps, books, and other options to identify what may be best designed for their success. Learning and understanding as much as possible about their disease, syndrome, or damage is always best before navigating therapies or programs. As many of us find out, including me, is that trial and error typically occur. We try and try again.
Regardless of why we have chronic symptoms, the blue print is pretty much the same when seeking a better quality of life... acceptance, moderation, modification, mindfulness, emotional and behavioral strategies, distraction, healthy diet and exercise, finding joy, gratitude, and humor. It's a full tool box! Mayo PRC offers a comprehensive approach to all of this and more which is why it was the best fit for me.
Hi Rachel. We are looking into the PRC program in Jacksonville. However, this may be a little too long for us and after speaking with them, the program is open to all types of chronic issues. We saw on another website that there is a two-day program solely focusing on fibromyalgia in Jacksonville offered by the Mayo Clinic. Just wondering if you know anything about this two-day program, as you seem to be very knowledgeable about the programs there. Thank you.
Hi Rachel. We are looking into the PRC program in Jacksonville. However, this may be a little too long for us and after speaking with them, the program is open to all types of chronic issues. We saw on another website that there is a two-day program solely focusing on fibromyalgia in Jacksonville offered by the Mayo Clinic. Just wondering if you know anything about this two-day program, as you seem to be very knowledgeable about the programs there. Thank you.
Hi @mindfulness. I'm sorry, I do not have direct experience or knowledge about the two-day program in Minnesota. It does not appear Florida offers a 2-day program. Here is a link about Mayo PRC's Featured Programs: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713
I would call Florida directly to confirm your question about what you saw on another website. Click "request an appointment" in the link provided to find Florida's phone number to the PRC.
Hi @mindfulness. I'm sorry, I do not have direct experience or knowledge about the two-day program in Minnesota. It does not appear Florida offers a 2-day program. Here is a link about Mayo PRC's Featured Programs: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713
I would call Florida directly to confirm your question about what you saw on another website. Click "request an appointment" in the link provided to find Florida's phone number to the PRC.
Thank you. The link you provided is very helpful.
We have been reading up on somatosensory rehabilitation to desensitize symptoms of allodynia. Have you tried some sort of desensitization therapy for allodynia?
We have been exploring the mind-body syndrome approach, but my husband has his doubts that this can work because he has not seen an improvement. He is getting demoralized and losing faith in the "process". He has been avoiding medication but, in the end, thinks he may end up starting a medication if this doesn't work in the near future. He is having a difficult time.
Thank you. The link you provided is very helpful.
We have been reading up on somatosensory rehabilitation to desensitize symptoms of allodynia. Have you tried some sort of desensitization therapy for allodynia?
We have been exploring the mind-body syndrome approach, but my husband has his doubts that this can work because he has not seen an improvement. He is getting demoralized and losing faith in the "process". He has been avoiding medication but, in the end, thinks he may end up starting a medication if this doesn't work in the near future. He is having a difficult time.
@mindfulness Hey there. I'm so sorry your husband continues to struggle. Has he spoke to his neurologist about what medication might give relief? I understand him being reluctant, but it might be time.
Chronic conditions can take over emotionally, physically and behaviorally, and before we know it, symptoms intensify. I hope he is speaking to a therapist to learn ways to manage his emotions. Meditation and diaphragmatic breathing is a good way to calm the system.
For Central Sensitization sensory issues of sound, taste, light, temperature, I have used graded exposure therapy to slowly desensitize my sensitized sensors, similar concept of retraining.
I found this informative blog on samatosensory rehabilitation: https://rsds.org/somatosensory-rehabilitation-allodynia/
Please give your husband a pat on the back from me and tell him to hang in there. 🙏 There is hope, keep the faith and continue to advocate.
@mindfulness Hey there. I'm so sorry your husband continues to struggle. Has he spoke to his neurologist about what medication might give relief? I understand him being reluctant, but it might be time.
Chronic conditions can take over emotionally, physically and behaviorally, and before we know it, symptoms intensify. I hope he is speaking to a therapist to learn ways to manage his emotions. Meditation and diaphragmatic breathing is a good way to calm the system.
For Central Sensitization sensory issues of sound, taste, light, temperature, I have used graded exposure therapy to slowly desensitize my sensitized sensors, similar concept of retraining.
I found this informative blog on samatosensory rehabilitation: https://rsds.org/somatosensory-rehabilitation-allodynia/
Please give your husband a pat on the back from me and tell him to hang in there. 🙏 There is hope, keep the faith and continue to advocate.
Hi Rachel
I read your link and find it very interesting.
I have allodynia from small fiber peripheral neuropathy (SFPN). The posteding may contain helpful information for people who suffer from allodynia from some conditions, but I don't believe it would work for mine.
In the link's protocol, the initial goal is to isolate the nerve(s) causing the condition, which would not work in SFPN since, by definition, SFPN affects the very small nerves which are scattered diffusely in the feet, leg, and hands, involving many larger nerves.
This link provides potentially helpful information for people suffering from some causes of allodynia, but not all.
Hi Rachel
I read your link and find it very interesting.
I have allodynia from small fiber peripheral neuropathy (SFPN). The posteding may contain helpful information for people who suffer from allodynia from some conditions, but I don't believe it would work for mine.
In the link's protocol, the initial goal is to isolate the nerve(s) causing the condition, which would not work in SFPN since, by definition, SFPN affects the very small nerves which are scattered diffusely in the feet, leg, and hands, involving many larger nerves.
This link provides potentially helpful information for people suffering from some causes of allodynia, but not all.
@jeffrapp Unfortunately, not all treatments work for everyone or their underlying causes. I felt this blog's focus on how somatosensory rehabilitation is used for treatment of desensitizing allodynia, caused from Complex Regional Pain Syndrome, gave a good description for a member who was inquiring about somatosensory rehabilitation whom does not have SFN.
@jeffrapp Unfortunately, not all treatments work for everyone or their underlying causes. I felt this blog's focus on how somatosensory rehabilitation is used for treatment of desensitizing allodynia, caused from Complex Regional Pain Syndrome, gave a good description for a member who was inquiring about somatosensory rehabilitation whom does not have SFN.
Hi Rachel
You are correct.
I was trying to clarify. Sometimes, these posts are difficult to follow, and it may have not been clear to some that the treatment you presented was not applicable to all forms of peripheral neuropathy.
Keep up the good work.
Hi Rachel
You are correct.
I was trying to clarify. Sometimes, these posts are difficult to follow, and it may have not been clear to some that the treatment you presented was not applicable to all forms of peripheral neuropathy.
Keep up the good work.
Does anyone have any suggestions on how to let others know not to come up and touch you? For example - hugs, grabbing your arms/elbows, slapping your shoulders etc etc. I don't want to have to wear a tshirt that outright reads "Please don't touch my skin" or something to that effect, but I'm not opposed to that either. Just a friendly visual reminder to people who you engage in conversations with at work, home or in public settings. The concept is like having a medic alert bracelet that alerts people to something so they know how to appropriately respond. I can't exactly tattoo my neck or face to reflect this, but I really need something so people know to avoid touching me at all costs bc my pain is SO high. Thanks yall.
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Hi @jeffrapp, it's nice to hear from you again. You and I have chatted in the past about Curable and the practice of mindfulness. I think the Curable App is a great, useful tool, and I love that you advocate for it's use on Connect to help others. Thank you!
I appreciate you making the point about tissue damage and neuropathies. I also was diagnosed with SFN via a skin punch biopsy. Whew, it all gets too confusing sometimes 😜. To correct myself, what I learned at Mayo Clinic from Dr. Sletten regarding the upregulation of the central nervous system and peripheral input resulting in increased sensitization and chronic symptoms (Central Sensitization Syndrome), was that both acute and chronic conditions CAN have tissue damage. Here is the difference from a CSS perspective:
ACUTE - ------> CHRONIC -
Sudden onset/ Variable onset
Short-lived / Long - lasting
Tissue damage / Tissue damage
Equal symptoms / Unequal symptoms
Treatments work / Treatments +/-
I am not a doctor, so it's probably best explained by Dr. Sletten in his CSS video:
- https://www.youtube.com/watch?v=vJNhdnSK3WQ
It's so important that each person reviews pain-management programs, tools, apps, books, and other options to identify what may be best designed for their success. Learning and understanding as much as possible about their disease, syndrome, or damage is always best before navigating therapies or programs. As many of us find out, including me, is that trial and error typically occur. We try and try again.
Regardless of why we have chronic symptoms, the blue print is pretty much the same when seeking a better quality of life... acceptance, moderation, modification, mindfulness, emotional and behavioral strategies, distraction, healthy diet and exercise, finding joy, gratitude, and humor. It's a full tool box! Mayo PRC offers a comprehensive approach to all of this and more which is why it was the best fit for me.
-
Like -
Helpful -
Hug
4 ReactionsHi Rachel. We are looking into the PRC program in Jacksonville. However, this may be a little too long for us and after speaking with them, the program is open to all types of chronic issues. We saw on another website that there is a two-day program solely focusing on fibromyalgia in Jacksonville offered by the Mayo Clinic. Just wondering if you know anything about this two-day program, as you seem to be very knowledgeable about the programs there. Thank you.
-
Like -
Helpful -
Hug
2 ReactionsHi @mindfulness. I'm sorry, I do not have direct experience or knowledge about the two-day program in Minnesota. It does not appear Florida offers a 2-day program. Here is a link about Mayo PRC's Featured Programs:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713
I would call Florida directly to confirm your question about what you saw on another website. Click "request an appointment" in the link provided to find Florida's phone number to the PRC.
-
Like -
Helpful -
Hug
3 ReactionsThank you. The link you provided is very helpful.
We have been reading up on somatosensory rehabilitation to desensitize symptoms of allodynia. Have you tried some sort of desensitization therapy for allodynia?
We have been exploring the mind-body syndrome approach, but my husband has his doubts that this can work because he has not seen an improvement. He is getting demoralized and losing faith in the "process". He has been avoiding medication but, in the end, thinks he may end up starting a medication if this doesn't work in the near future. He is having a difficult time.
@mindfulness Hey there. I'm so sorry your husband continues to struggle. Has he spoke to his neurologist about what medication might give relief? I understand him being reluctant, but it might be time.
Chronic conditions can take over emotionally, physically and behaviorally, and before we know it, symptoms intensify. I hope he is speaking to a therapist to learn ways to manage his emotions. Meditation and diaphragmatic breathing is a good way to calm the system.
For Central Sensitization sensory issues of sound, taste, light, temperature, I have used graded exposure therapy to slowly desensitize my sensitized sensors, similar concept of retraining.
I found this informative blog on samatosensory rehabilitation:
https://rsds.org/somatosensory-rehabilitation-allodynia/
Please give your husband a pat on the back from me and tell him to hang in there. 🙏 There is hope, keep the faith and continue to advocate.
-
Like -
Helpful -
Hug
3 ReactionsHi Rachel
I read your link and find it very interesting.
I have allodynia from small fiber peripheral neuropathy (SFPN). The posteding may contain helpful information for people who suffer from allodynia from some conditions, but I don't believe it would work for mine.
In the link's protocol, the initial goal is to isolate the nerve(s) causing the condition, which would not work in SFPN since, by definition, SFPN affects the very small nerves which are scattered diffusely in the feet, leg, and hands, involving many larger nerves.
This link provides potentially helpful information for people suffering from some causes of allodynia, but not all.
-
Like -
Helpful -
Hug
2 Reactions@jeffrapp Unfortunately, not all treatments work for everyone or their underlying causes. I felt this blog's focus on how somatosensory rehabilitation is used for treatment of desensitizing allodynia, caused from Complex Regional Pain Syndrome, gave a good description for a member who was inquiring about somatosensory rehabilitation whom does not have SFN.
-
Like -
Helpful -
Hug
4 ReactionsHi Rachel
You are correct.
I was trying to clarify. Sometimes, these posts are difficult to follow, and it may have not been clear to some that the treatment you presented was not applicable to all forms of peripheral neuropathy.
Keep up the good work.
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Helpful -
Hug
2 ReactionsThank you, you too.
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Hug
1 ReactionHello, I have a question -
Does anyone have any suggestions on how to let others know not to come up and touch you? For example - hugs, grabbing your arms/elbows, slapping your shoulders etc etc. I don't want to have to wear a tshirt that outright reads "Please don't touch my skin" or something to that effect, but I'm not opposed to that either. Just a friendly visual reminder to people who you engage in conversations with at work, home or in public settings. The concept is like having a medic alert bracelet that alerts people to something so they know how to appropriately respond. I can't exactly tattoo my neck or face to reflect this, but I really need something so people know to avoid touching me at all costs bc my pain is SO high. Thanks yall.
-
Like -
Helpful -
Hug
3 Reactions