I can testify that, in the 3 states in which I lived, not one doctor could come up with ANY solution to ease my pain, although one in particular worked her heart out trying.
@user* I've been thinking about no one being able to think of a dr who has been helpful to them - and - there must be so many kinds of PN, so many causes, there must be equally as many treatments, and to find the one that works for a particular individual might be like looking for the proverbial needle in haystack? or, perhaps as many have said - there is no treatment!!! You do have to be your own advocate - keep looking, trying new things, sharing what you have learned and what others have learned.
@user_ch98d0b5c, I don't believe it's against the rules to name a doctor who has helped you in some way. I am thinking it's more along the line of what @barbarn is suggesting. There are so many types of PN and no one treatment works for everyone. That said if I found a doctor that "fixed" the numbness in my PN I would certainly give them the credit. I have found supplements that help but they do not cure PN and they may or may not work for everyone.
So I would just like to add, keep asking questions and sharing what you find if something works for you. We are all on this journey together.
I have non diabetic polyneuropathy & the fatigue is crushing. I can do very little but sleep. Is there treatment for this relentless exhaustion? Thanks. Elden
Elden @elden -- welcome to Connect. Fatigue can be crushing. Have you tried any treatments or been recommended any treatments by your doctor? Have you ever been tested for sleep apnea? The reason I ask is while I don't feel I have chronic fatigue I have been tired a lot during the daytime and recently while being treated for another condition was tested and found out I have obstructive sleep apnea. I was surprised at the statistics of how many people have it and do not know they have it. I certainly didn't know and didn't think I had it. You might want to check out the following discussions:
Hello again John. How are you tested for sleep apnea ? Do you have to be hospitalized for it ? And what did you do to improve it ? I feel like I have an obstruction on my left side after the nerve blocks . Thank you !!
Hello again John. How are you tested for sleep apnea ? Do you have to be hospitalized for it ? And what did you do to improve it ? I feel like I have an obstruction on my left side after the nerve blocks . Thank you !!
Hi @marinelastef, I had two different tests. The first one I had was the at home overnight study and the second one I had to stay overnight at Mayo Clinic - which could also be done at a hospital, etc. The second test was more thorough with more probes hooked to you to measure your breathing, heart, leg movement and more. Really interesting test and revealed a lot more than the simple home test.
The treatment if you have obstructive sleep apnea is usually a CPAP machine to help with the breathing. I've been using one for 7 days now and I'm still getting used to it but I think it's helping.
I would talk to your doctor and discuss the possibility of having sleep apnea. If you do have it, the great news is that it is treatable.
Would love to hear back if you are tested and what the outcome is.
Hello again John. How are you tested for sleep apnea ? Do you have to be hospitalized for it ? And what did you do to improve it ? I feel like I have an obstruction on my left side after the nerve blocks . Thank you !!
First of all I have to tell you what a wonderful human being you are. I’ve seen you responding and spreading the knowledge you have with all of us .
I will definitely ask my doctor if I can be tested for sleep apnea. I do have many issues with it, ether waking up breathless or numb or completely drenched with sweet. Hopefully that can help with longer and more restful nights .
I’m interested in any supplements and techniques or medications to alleviate the neurophatic pain. So far nothing works for me either. But we must fight to be heard by someone and let doctors know what we go through and how desabilitating this condition is !!
Hello again John. How are you tested for sleep apnea ? Do you have to be hospitalized for it ? And what did you do to improve it ? I feel like I have an obstruction on my left side after the nerve blocks . Thank you !!
Hi @marinelastef, I found the supplements that I take in a closed Facebook group. This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://solutions2pnpd.com/. I did my own research before joining the group which is what I think everyone should do. Although it works for me, it may not work for everyone as all of us are a little different. Rather than repeat my story here is the link where I posted how it's helped me.
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=45#comment-65985
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I can testify that, in the 3 states in which I lived, not one doctor could come up with ANY solution to ease my pain, although one in particular worked her heart out trying.
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3 Reactions@user* I've been thinking about no one being able to think of a dr who has been helpful to them - and - there must be so many kinds of PN, so many causes, there must be equally as many treatments, and to find the one that works for a particular individual might be like looking for the proverbial needle in haystack? or, perhaps as many have said - there is no treatment!!! You do have to be your own advocate - keep looking, trying new things, sharing what you have learned and what others have learned.
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Like -
Helpful -
Hug
4 Reactions@user_ch98d0b5c, I don't believe it's against the rules to name a doctor who has helped you in some way. I am thinking it's more along the line of what @barbarn is suggesting. There are so many types of PN and no one treatment works for everyone. That said if I found a doctor that "fixed" the numbness in my PN I would certainly give them the credit. I have found supplements that help but they do not cure PN and they may or may not work for everyone.
So I would just like to add, keep asking questions and sharing what you find if something works for you. We are all on this journey together.
John
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Like -
Helpful -
Hug
3 ReactionsElden @elden -- welcome to Connect. Fatigue can be crushing. Have you tried any treatments or been recommended any treatments by your doctor? Have you ever been tested for sleep apnea? The reason I ask is while I don't feel I have chronic fatigue I have been tired a lot during the daytime and recently while being treated for another condition was tested and found out I have obstructive sleep apnea. I was surprised at the statistics of how many people have it and do not know they have it. I certainly didn't know and didn't think I had it. You might want to check out the following discussions:
Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
-- https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/
Groups > Autoimmune Diseases > Autoimmune Diseases and Fatigue
-- https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
Groups > Sleep Health > Sleep Apnea and CPAP machines
-- https://connect.mayoclinic.org/discussion/sleep-apnea-29d741/
John
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2 ReactionsHello again John. How are you tested for sleep apnea ? Do you have to be hospitalized for it ? And what did you do to improve it ? I feel like I have an obstruction on my left side after the nerve blocks . Thank you !!
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Helpful -
Hug
1 ReactionHi @marinelastef, I had two different tests. The first one I had was the at home overnight study and the second one I had to stay overnight at Mayo Clinic - which could also be done at a hospital, etc. The second test was more thorough with more probes hooked to you to measure your breathing, heart, leg movement and more. Really interesting test and revealed a lot more than the simple home test.
Mayo Clinic Patient Video - Home Overnight Oximetry
-- https://www.mayoclinic.org/patient-education-videos/overnight-oximetry
Obstructive Sleep Apnea - Diagnosis and Treatment
-- https://www.mayoclinic.org/diseases-conditions/obstructive-sleep-apnea/diagnosis-treatment/drc-20352095
The treatment if you have obstructive sleep apnea is usually a CPAP machine to help with the breathing. I've been using one for 7 days now and I'm still getting used to it but I think it's helping.
I would talk to your doctor and discuss the possibility of having sleep apnea. If you do have it, the great news is that it is treatable.
Would love to hear back if you are tested and what the outcome is.
Thank you!
John
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Hug
2 ReactionsHello John !!
First of all I have to tell you what a wonderful human being you are. I’ve seen you responding and spreading the knowledge you have with all of us .
I will definitely ask my doctor if I can be tested for sleep apnea. I do have many issues with it, ether waking up breathless or numb or completely drenched with sweet. Hopefully that can help with longer and more restful nights .
Thank you so much again for the info !!
Best wishes !!
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2 ReactionsI’m interested in any supplements and techniques or medications to alleviate the neurophatic pain. So far nothing works for me either. But we must fight to be heard by someone and let doctors know what we go through and how desabilitating this condition is !!
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Hug
2 ReactionsThank you for the kind words @marinelastef ! Hoping you find some answers for longer and more restful nights.
John
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2 ReactionsHi @marinelastef, I found the supplements that I take in a closed Facebook group. This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://solutions2pnpd.com/. I did my own research before joining the group which is what I think everyone should do. Although it works for me, it may not work for everyone as all of us are a little different. Rather than repeat my story here is the link where I posted how it's helped me.
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=45#comment-65985
John
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Hug
2 Reactions