Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@johnhans

I hate to interrupt this discussion, but I have a question and I don't know any way to get an answer other than this way. For a week or more and intermittently before that I have been having email for this topic going to spam. Just neuropathy, no other topic. Any way to change this? Also it can take a day or two until they show up in the spam folder.

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Hi @johnhans have you tried setting a filter on your email program to move the Connect emails into a separate folder and not in your inbox? There's a discussion on how to do it here:

> Groups> Just Want to Talk > [Tip] Filter your Connect emails into a folder
https://connect.mayoclinic.org/discussion/tip-filter-your-connect-emails-into-a-folder-1/

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@johnbishop

Hi @johnhans have you tried setting a filter on your email program to move the Connect emails into a separate folder and not in your inbox? There's a discussion on how to do it here:

> Groups> Just Want to Talk > [Tip] Filter your Connect emails into a folder
https://connect.mayoclinic.org/discussion/tip-filter-your-connect-emails-into-a-folder-1/

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@johnbishop thank you for your reply. I am on an Android phone so those instructions do not apply to my situation. Also it is not that the Connect messages are hard to find in my email folder, but that they do not show up at all. They only show up in spam and then sometimes not for days after. Again thank you for your time and consideration in helping me.

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@johnhans

@johnbishop thank you for your reply. I am on an Android phone so those instructions do not apply to my situation. Also it is not that the Connect messages are hard to find in my email folder, but that they do not show up at all. They only show up in spam and then sometimes not for days after. Again thank you for your time and consideration in helping me.

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Hi @johnhans, Thanks for alerting us to the issue with not receiving Connect email notifications. Several members have reported this issue lately. Email programs are cracking down and tightening their spam filters. To prevent Connect-related emails from going to your junk mail or spam, add Connect's sender address "@n1.hubapplication.com" to your safe sender list. Here are instructions on how to do this for various email types:
– AOL http://www.subscribermail.com/safe-list/address-book-aol-mail.html
– Gmail, Outlook (hotmail) and Yahoo http://onlinegroups.net/blog/2014/02/25/how-to-whitelist-an-email-address/
Additionally, when you find a Connect email in your spam folder, move it back to the inbox and mark "Not Spam." Eventually your email will get it.

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@johnhans– I often have the same problem. At first I thought is was the word CBD when mentioned would kick it out a phishing, but it happens on several other topics? I've just gotten into the habit of checking spam and moving the Mayo ones into my other folder. Jim@thankful

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@thankful

@johnhans– I often have the same problem. At first I thought is was the word CBD when mentioned would kick it out a phishing, but it happens on several other topics? I've just gotten into the habit of checking spam and moving the Mayo ones into my other folder. Jim@thankful

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Thank you for your reply. I have done the reporting as not spam and moving to the regular in folder, but that seems to only work for a while and then back to going into spam. Nothing else seems to work, so I guess I will just have to keep repeating the report as spam and moving to the in box.

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@johnhans

Thank you for your reply. I have done the reporting as not spam and moving to the regular in folder, but that seems to only work for a while and then back to going into spam. Nothing else seems to work, so I guess I will just have to keep repeating the report as spam and moving to the in box.

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@johnhans, @thankful and others with the problem of email notifications not always showing up — I had the same problem and may be able to offer a little insight. I work for an Internet service provider and we recently moved to a better email service with a stronger spam appliance. The problem is that it sometimes recognizes emails that are not spam to us as spam and blocks them. In our case, we are able to log into the "Greymail" spam appliance and see all of the emails sent to us that were blocked from getting to our inbox. I was able to see the good messages that were being blocked and release them. I'm not sure which email service you use (Gmail, Yahoo, etc..) but you may want to check to see if the messages are being blocked.

Gmail messages are missing — https://support.google.com/mail/answer/7015314?co=GENIE.Platform%3DAndroid&hl=en
Find missing emails in Yahoo Mail — https://au.help.yahoo.com/kb/mail-app-for-android/find-missing-emails-yahoo-mail-sln4538.html?

Hope this helps!

Liked by Lisa Lucier

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@thankful and @johnhans The best way to stop Connect-related email from going to your spam folder is to add Connect's sender address "@n1.hubapplication.com" to your safe sender list.

This article explains how to do this common email clients, like Apple mail, Gmail, Outlook (hotmail) and Yahoo. It only takes a few minutes to set up.
https://mailchimp.com/help/about-safe-sender-lists/
If you have further questions or want help setting this up, send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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Hi Colleen, I was diagnosed Ovarian cancer in 2016 and developed neuropathy early on during chemotherapy. Unlike most people, mine did not go away. I also have Hypothyroid, Celiacs, Osteoarthritis and Raynaud's. Because of the Raynaud’s, it was confusing at first; my symptoms weren’t completely the same as before. My feet are super numb, and they feel like I have something thick stuck to the bottom of them. On the upside, the burning and tingling from Raynaud’s is significantly reduced…which means I need to be even more careful about heat and cold. My shins and knees also hurt. My hands are now extremely sensitive, painful as heck and I lost a great deal of my dexterity and strength in them. I was a legal secretary; so, needless to say, the career came to an end. I used to be a musician, artists, seamstress, did extremely delicate embroidery work, smocking and loved gardening. I now try to find other creative outlets that require less dexterity or trauma to my hands.

Last year (2 years later) I went through radiation for breast cancer (I’m BRCA negative, go figure!) and shortly after completing treatment I thought I was having a major flare: Nope, i was diagnosed with fibromyalgia. They changed the AI I was on which helped a bit. I was already on gabapentin so they increased the dose to 2400mg. They also increased Cymbalta to 90 mg, increased the muscle relaxant and added an anti-inflammatory. They also increased the amount of Xanax I take on top of my regular meds. I think it helps the spasms in my hands.

To be honest I am not sure how much all the medication helps. I am still in a lot of pain. Movement helps more than anything. I try to keep moving by doing restorative yoga, or Qi Gong, TaiChi, walking, bicycling, swimming and lake kayaking. I also developed lymphedema which comes with its own set of issues, and does limit some of my activities. It doesn’t help that my immune system hasn’t recovered and I get everything that goes around.

I am stubborn, which I think is a good thing when you have any ONE of these diseases. If something doesn’t work one way, find a work around. Larger handled hair brushes, a stand to hold the hairdryer, gloves that help to hang on to things (I.e. my kayak paddle), shoes that slip on or have Velcro (yes it’s a bit embarrassing sometimes). My sweet husband paints my toenails for me and got me a robotic vacuum. I avoid small buttons, zipper pulls and snaps in favor of larger ones.

I have good and bad days, some days pain wins. Given my diseases, I am blessed to have more time. More time with family and friends.

I am also very blessed to live in Colorado. Four season, each with fun outside activities and the bluest skies ever. And, cbd is legal here. So, when a friend suggested I try It I thought, “why not”. After speaking with my doctor, I did a bunch of research, recruited a friend (five in fact) to go with me, and gave it a try. Finding the right product/blend is tricky but it helps. And it gives me more good days!

Wishing everyone MORE GOOD DAYS!!

#cancersucks #painsucks #moregooddays #todayibeatpain

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@chowmama2

Hi Colleen, I was diagnosed Ovarian cancer in 2016 and developed neuropathy early on during chemotherapy. Unlike most people, mine did not go away. I also have Hypothyroid, Celiacs, Osteoarthritis and Raynaud's. Because of the Raynaud’s, it was confusing at first; my symptoms weren’t completely the same as before. My feet are super numb, and they feel like I have something thick stuck to the bottom of them. On the upside, the burning and tingling from Raynaud’s is significantly reduced…which means I need to be even more careful about heat and cold. My shins and knees also hurt. My hands are now extremely sensitive, painful as heck and I lost a great deal of my dexterity and strength in them. I was a legal secretary; so, needless to say, the career came to an end. I used to be a musician, artists, seamstress, did extremely delicate embroidery work, smocking and loved gardening. I now try to find other creative outlets that require less dexterity or trauma to my hands.

Last year (2 years later) I went through radiation for breast cancer (I’m BRCA negative, go figure!) and shortly after completing treatment I thought I was having a major flare: Nope, i was diagnosed with fibromyalgia. They changed the AI I was on which helped a bit. I was already on gabapentin so they increased the dose to 2400mg. They also increased Cymbalta to 90 mg, increased the muscle relaxant and added an anti-inflammatory. They also increased the amount of Xanax I take on top of my regular meds. I think it helps the spasms in my hands.

To be honest I am not sure how much all the medication helps. I am still in a lot of pain. Movement helps more than anything. I try to keep moving by doing restorative yoga, or Qi Gong, TaiChi, walking, bicycling, swimming and lake kayaking. I also developed lymphedema which comes with its own set of issues, and does limit some of my activities. It doesn’t help that my immune system hasn’t recovered and I get everything that goes around.

I am stubborn, which I think is a good thing when you have any ONE of these diseases. If something doesn’t work one way, find a work around. Larger handled hair brushes, a stand to hold the hairdryer, gloves that help to hang on to things (I.e. my kayak paddle), shoes that slip on or have Velcro (yes it’s a bit embarrassing sometimes). My sweet husband paints my toenails for me and got me a robotic vacuum. I avoid small buttons, zipper pulls and snaps in favor of larger ones.

I have good and bad days, some days pain wins. Given my diseases, I am blessed to have more time. More time with family and friends.

I am also very blessed to live in Colorado. Four season, each with fun outside activities and the bluest skies ever. And, cbd is legal here. So, when a friend suggested I try It I thought, “why not”. After speaking with my doctor, I did a bunch of research, recruited a friend (five in fact) to go with me, and gave it a try. Finding the right product/blend is tricky but it helps. And it gives me more good days!

Wishing everyone MORE GOOD DAYS!!

#cancersucks #painsucks #moregooddays #todayibeatpain

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@chowmama2– I opened up my Mayo connect this morning and your story was my first read. I have to say that after reading it, I would find it very hard to complain about anything today!
We all have something to be thankful for and even though these ailments have robbed you of so many of the things you once enjoyed I sense a strong resolve to keep fighting and enjoy the life you have.
My prayer for you today is that your Joy would be complete!
Ah yes that Colorado sky is so…. blue!
Jim @thankful

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@chowmama2

Hi Colleen, I was diagnosed Ovarian cancer in 2016 and developed neuropathy early on during chemotherapy. Unlike most people, mine did not go away. I also have Hypothyroid, Celiacs, Osteoarthritis and Raynaud's. Because of the Raynaud’s, it was confusing at first; my symptoms weren’t completely the same as before. My feet are super numb, and they feel like I have something thick stuck to the bottom of them. On the upside, the burning and tingling from Raynaud’s is significantly reduced…which means I need to be even more careful about heat and cold. My shins and knees also hurt. My hands are now extremely sensitive, painful as heck and I lost a great deal of my dexterity and strength in them. I was a legal secretary; so, needless to say, the career came to an end. I used to be a musician, artists, seamstress, did extremely delicate embroidery work, smocking and loved gardening. I now try to find other creative outlets that require less dexterity or trauma to my hands.

Last year (2 years later) I went through radiation for breast cancer (I’m BRCA negative, go figure!) and shortly after completing treatment I thought I was having a major flare: Nope, i was diagnosed with fibromyalgia. They changed the AI I was on which helped a bit. I was already on gabapentin so they increased the dose to 2400mg. They also increased Cymbalta to 90 mg, increased the muscle relaxant and added an anti-inflammatory. They also increased the amount of Xanax I take on top of my regular meds. I think it helps the spasms in my hands.

To be honest I am not sure how much all the medication helps. I am still in a lot of pain. Movement helps more than anything. I try to keep moving by doing restorative yoga, or Qi Gong, TaiChi, walking, bicycling, swimming and lake kayaking. I also developed lymphedema which comes with its own set of issues, and does limit some of my activities. It doesn’t help that my immune system hasn’t recovered and I get everything that goes around.

I am stubborn, which I think is a good thing when you have any ONE of these diseases. If something doesn’t work one way, find a work around. Larger handled hair brushes, a stand to hold the hairdryer, gloves that help to hang on to things (I.e. my kayak paddle), shoes that slip on or have Velcro (yes it’s a bit embarrassing sometimes). My sweet husband paints my toenails for me and got me a robotic vacuum. I avoid small buttons, zipper pulls and snaps in favor of larger ones.

I have good and bad days, some days pain wins. Given my diseases, I am blessed to have more time. More time with family and friends.

I am also very blessed to live in Colorado. Four season, each with fun outside activities and the bluest skies ever. And, cbd is legal here. So, when a friend suggested I try It I thought, “why not”. After speaking with my doctor, I did a bunch of research, recruited a friend (five in fact) to go with me, and gave it a try. Finding the right product/blend is tricky but it helps. And it gives me more good days!

Wishing everyone MORE GOOD DAYS!!

#cancersucks #painsucks #moregooddays #todayibeatpain

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Thank you for sharing! I also live in Colorado Springs, CO best move ever for my well being. God Bless, stay in touch!

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@chowmama2

Hi Colleen, I was diagnosed Ovarian cancer in 2016 and developed neuropathy early on during chemotherapy. Unlike most people, mine did not go away. I also have Hypothyroid, Celiacs, Osteoarthritis and Raynaud's. Because of the Raynaud’s, it was confusing at first; my symptoms weren’t completely the same as before. My feet are super numb, and they feel like I have something thick stuck to the bottom of them. On the upside, the burning and tingling from Raynaud’s is significantly reduced…which means I need to be even more careful about heat and cold. My shins and knees also hurt. My hands are now extremely sensitive, painful as heck and I lost a great deal of my dexterity and strength in them. I was a legal secretary; so, needless to say, the career came to an end. I used to be a musician, artists, seamstress, did extremely delicate embroidery work, smocking and loved gardening. I now try to find other creative outlets that require less dexterity or trauma to my hands.

Last year (2 years later) I went through radiation for breast cancer (I’m BRCA negative, go figure!) and shortly after completing treatment I thought I was having a major flare: Nope, i was diagnosed with fibromyalgia. They changed the AI I was on which helped a bit. I was already on gabapentin so they increased the dose to 2400mg. They also increased Cymbalta to 90 mg, increased the muscle relaxant and added an anti-inflammatory. They also increased the amount of Xanax I take on top of my regular meds. I think it helps the spasms in my hands.

To be honest I am not sure how much all the medication helps. I am still in a lot of pain. Movement helps more than anything. I try to keep moving by doing restorative yoga, or Qi Gong, TaiChi, walking, bicycling, swimming and lake kayaking. I also developed lymphedema which comes with its own set of issues, and does limit some of my activities. It doesn’t help that my immune system hasn’t recovered and I get everything that goes around.

I am stubborn, which I think is a good thing when you have any ONE of these diseases. If something doesn’t work one way, find a work around. Larger handled hair brushes, a stand to hold the hairdryer, gloves that help to hang on to things (I.e. my kayak paddle), shoes that slip on or have Velcro (yes it’s a bit embarrassing sometimes). My sweet husband paints my toenails for me and got me a robotic vacuum. I avoid small buttons, zipper pulls and snaps in favor of larger ones.

I have good and bad days, some days pain wins. Given my diseases, I am blessed to have more time. More time with family and friends.

I am also very blessed to live in Colorado. Four season, each with fun outside activities and the bluest skies ever. And, cbd is legal here. So, when a friend suggested I try It I thought, “why not”. After speaking with my doctor, I did a bunch of research, recruited a friend (five in fact) to go with me, and gave it a try. Finding the right product/blend is tricky but it helps. And it gives me more good days!

Wishing everyone MORE GOOD DAYS!!

#cancersucks #painsucks #moregooddays #todayibeatpain

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I wish you all the best Colleen — I want them to find some remedies and cures for you! Peggy

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@chowmama2

Hi Colleen, I was diagnosed Ovarian cancer in 2016 and developed neuropathy early on during chemotherapy. Unlike most people, mine did not go away. I also have Hypothyroid, Celiacs, Osteoarthritis and Raynaud's. Because of the Raynaud’s, it was confusing at first; my symptoms weren’t completely the same as before. My feet are super numb, and they feel like I have something thick stuck to the bottom of them. On the upside, the burning and tingling from Raynaud’s is significantly reduced…which means I need to be even more careful about heat and cold. My shins and knees also hurt. My hands are now extremely sensitive, painful as heck and I lost a great deal of my dexterity and strength in them. I was a legal secretary; so, needless to say, the career came to an end. I used to be a musician, artists, seamstress, did extremely delicate embroidery work, smocking and loved gardening. I now try to find other creative outlets that require less dexterity or trauma to my hands.

Last year (2 years later) I went through radiation for breast cancer (I’m BRCA negative, go figure!) and shortly after completing treatment I thought I was having a major flare: Nope, i was diagnosed with fibromyalgia. They changed the AI I was on which helped a bit. I was already on gabapentin so they increased the dose to 2400mg. They also increased Cymbalta to 90 mg, increased the muscle relaxant and added an anti-inflammatory. They also increased the amount of Xanax I take on top of my regular meds. I think it helps the spasms in my hands.

To be honest I am not sure how much all the medication helps. I am still in a lot of pain. Movement helps more than anything. I try to keep moving by doing restorative yoga, or Qi Gong, TaiChi, walking, bicycling, swimming and lake kayaking. I also developed lymphedema which comes with its own set of issues, and does limit some of my activities. It doesn’t help that my immune system hasn’t recovered and I get everything that goes around.

I am stubborn, which I think is a good thing when you have any ONE of these diseases. If something doesn’t work one way, find a work around. Larger handled hair brushes, a stand to hold the hairdryer, gloves that help to hang on to things (I.e. my kayak paddle), shoes that slip on or have Velcro (yes it’s a bit embarrassing sometimes). My sweet husband paints my toenails for me and got me a robotic vacuum. I avoid small buttons, zipper pulls and snaps in favor of larger ones.

I have good and bad days, some days pain wins. Given my diseases, I am blessed to have more time. More time with family and friends.

I am also very blessed to live in Colorado. Four season, each with fun outside activities and the bluest skies ever. And, cbd is legal here. So, when a friend suggested I try It I thought, “why not”. After speaking with my doctor, I did a bunch of research, recruited a friend (five in fact) to go with me, and gave it a try. Finding the right product/blend is tricky but it helps. And it gives me more good days!

Wishing everyone MORE GOOD DAYS!!

#cancersucks #painsucks #moregooddays #todayibeatpain

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You have inspired me!
Thank you.

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My name is Betty. I have had peripheral neuropathy for about 8 years now. I take Gabapentin 400 (2 capsules) three times a day. I take Venlafaxine in the morning and ALSO 4 blood presure medicines and thyroid medicine.. My pain in my left foot and leg is constant. A neurosurgeon did back surgery on my back and fused L2-S1 with stress fractures at each end after surgery. He now says they have healed but I had constant pain in back and left leg and foot. Last time I saw him he dismissed me and that was 2 years ago. I also has stenosis, degenerative disc disease and the disc above and below fusion and bar in my back are callapsing. My primary sent me to a neurologist and he told me I have seen the best neurosurgion and doctor there are he can't help me. My right foot is now start to tingled and burn. i make myself walk evey morning first thing to help control the pain. I use walking sticks due to balance being so back. My primary is really the only dr. I see now and use my essential oils to supplement my medicines. I slowly am loosing all trust in medical doctors. I feel they don't really care except my primary who has sent me to the pain clinic. We have tried steroid shots which haven't worked, ablazion which worked for two weeks, a mixed compound which made me gain weight really bad and didn't help much with the pain. What do you recommend now. i am retired on medicare and social security. I can't afford to just continue spending money for no results.

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Good evening @betty1954, Welcome to Connect. I am glad you found this forum. I was just about to sign off for the evening when I saw your post. There is a note of discouragement and disappointment in your words. Since I cannot see you or hear you I have to depend on your words. I don't want to read too much into them……just sort of get the feeling that some frustration has you concerned.

You wrote, "he dismissed me". Do you mean that he refused to serve you as a patient? Or that your treatment with him was complete?

One of the most difficult things to hear is that there is no cure for neuropathy. Those of us so afflicted are sort of left to our own resources and the attention of patient-centered clinicians and practitioners. I see that you are using gabapentin and essential oils plus your blood pressure and thyroid medications.

I didn't count your orthopedic surgeries and yet I know you have undergone some extensive surgical efforts. I think you even have me beat. Only now do i know how my reckless lifestyle and resulting surgeries may have contributed to my neuropathy. You didn't mention SFN or small fiber neuropathy. Has that been ruled out?

If you could eliminate one disturbing symptom what would that be? Pain? Lack of mobility? Depression? Anxiety? Let's begin on the same page…..the page of what matters most. I look forward to hearing from you.

May you be free of suffering this evening and have a refreshing sleep. Chris

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@artscaping

Good evening @betty1954, Welcome to Connect. I am glad you found this forum. I was just about to sign off for the evening when I saw your post. There is a note of discouragement and disappointment in your words. Since I cannot see you or hear you I have to depend on your words. I don't want to read too much into them……just sort of get the feeling that some frustration has you concerned.

You wrote, "he dismissed me". Do you mean that he refused to serve you as a patient? Or that your treatment with him was complete?

One of the most difficult things to hear is that there is no cure for neuropathy. Those of us so afflicted are sort of left to our own resources and the attention of patient-centered clinicians and practitioners. I see that you are using gabapentin and essential oils plus your blood pressure and thyroid medications.

I didn't count your orthopedic surgeries and yet I know you have undergone some extensive surgical efforts. I think you even have me beat. Only now do i know how my reckless lifestyle and resulting surgeries may have contributed to my neuropathy. You didn't mention SFN or small fiber neuropathy. Has that been ruled out?

If you could eliminate one disturbing symptom what would that be? Pain? Lack of mobility? Depression? Anxiety? Let's begin on the same page…..the page of what matters most. I look forward to hearing from you.

May you be free of suffering this evening and have a refreshing sleep. Chris

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Thanks for replying Chris. I am very discouraged I guess. My pain never stops. The spasms are ongoing and I try to always smile and tell everyone I am great. I know my primary doctor who is wonderful wants to help but he has also seen doors closed without any answers given. I will have to read up on SFN and small fiber neuropathy. That is something that I have never heard about. I sometimes feel like no one wants to take the time to just sit down and explain to me what to expect or how to deal with what is happening to my body. I feel shoved aside when it comes to doctors explaining anything. I print off each report after seeing a doctor and that is the way I learn more about what is going on than from the doctors. I guess I am looking for a plan on how to deal with this. I am a doer not a sit and let it happen person. I have yet to have someone tell me this is what you can do to get better or feel better or feel more informed. Everyday is more pain and more spasms and no answers.

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