Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

Profile picture for Jake @jakedduck1

@sunnyflower
How much Gapapentin are you taking now?
Hope you’re feeling better,
Jake

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Hey there cannot tell whether or not I've already replied to this but I currently take 300 mg three times a day. Take good care!

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Profile picture for Hank @jesfactsmon

@sunnyflower
Thanks Sunny. You did mention this before but I had forgotten about it. I will check them out to see if they allow a trial membership. If they would let me check it out a bit first I would certainly be more interested. I have a high skepticism ratio but you are really keen on them and I put a lot of stock in what you say so I will take a look at their site. Thanks, and hope all is well, Hank

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Hello dear friend! Boy I am so far behind on the neuropathy emails I don't think I will ever catch up and fear some will go an answer that were directed towards me and so I'm trying hard to find those but not making much progress. I got behind because I was afflicted with some new health problems which are required so much time for treatment here at home doing self care that it's just overwhelming! I still been praying everyone and really cared deeply how everyone is doing. Yes a problem with my eyes is now causing me to have to use warm moist compresses for 40 minutes a day and that's if I do both eyes at a time and for 20 minutes twice daily cannot see anything. So, I do one eye at a time and that amounts to 80 minutes a day and then I have to do eye drops throughout the day and to do them properly you have to put them in, immediately blocked tear duct and hold it for two to three minutes so that's that many minutes more for self care. Appointment at night and wow it's just hard to read anything is my ice continue to sting and burn. It's the typical old age dry eye and meibomian gland dysfunction however, it is also part of my autoimmune disease / my rheumatologist and ophthalmologist.

But enough about me how are you and Linda doing? I hope you guys are doing well. Did you both get the vaccinations? I feel fine now and have visited my family for the first time since before Thanksgiving and believe me it was a huge blessing! Oh how I miss them so! I was so lonely!

Please know I'm thinking about and praying for you guys. Private message me if you need to and I've been thinking about private messaging you about what to do with all these emails and how you told me how you avoid that. I will have to search for that I hope and pray I bookmarked it LOL as you may have read, I do not see the icons at John Bishop told me about near my picture on my profile page nor anywhere on my profile page! The only thing I found was that when you go to Mayo Clinic connect and there's a column going down the left side for groups and accounts and stuff there is the word messages there so when I clicked on that it brought me to all of my private messages. I am grateful! But yeah John Bishop spend a lot of time explaining to me how to find my bookmarked items and there was no bookmark item on my profile page at all anywhere on both my cell phone and laptop. No wonder I've been so frustrated trying to get around on connect.

, take good care and warmest regards, Sunny

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Profile picture for Hank @jesfactsmon

@sunnyflower
Thanks Sunny. You did mention this before but I had forgotten about it. I will check them out to see if they allow a trial membership. If they would let me check it out a bit first I would certainly be more interested. I have a high skepticism ratio but you are really keen on them and I put a lot of stock in what you say so I will take a look at their site. Thanks, and hope all is well, Hank

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PS: I did see the bookmark icon one time but not since then.

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Profile picture for sunnyflower @sunnyflower

Hello dear friend! Boy I am so far behind on the neuropathy emails I don't think I will ever catch up and fear some will go an answer that were directed towards me and so I'm trying hard to find those but not making much progress. I got behind because I was afflicted with some new health problems which are required so much time for treatment here at home doing self care that it's just overwhelming! I still been praying everyone and really cared deeply how everyone is doing. Yes a problem with my eyes is now causing me to have to use warm moist compresses for 40 minutes a day and that's if I do both eyes at a time and for 20 minutes twice daily cannot see anything. So, I do one eye at a time and that amounts to 80 minutes a day and then I have to do eye drops throughout the day and to do them properly you have to put them in, immediately blocked tear duct and hold it for two to three minutes so that's that many minutes more for self care. Appointment at night and wow it's just hard to read anything is my ice continue to sting and burn. It's the typical old age dry eye and meibomian gland dysfunction however, it is also part of my autoimmune disease / my rheumatologist and ophthalmologist.

But enough about me how are you and Linda doing? I hope you guys are doing well. Did you both get the vaccinations? I feel fine now and have visited my family for the first time since before Thanksgiving and believe me it was a huge blessing! Oh how I miss them so! I was so lonely!

Please know I'm thinking about and praying for you guys. Private message me if you need to and I've been thinking about private messaging you about what to do with all these emails and how you told me how you avoid that. I will have to search for that I hope and pray I bookmarked it LOL as you may have read, I do not see the icons at John Bishop told me about near my picture on my profile page nor anywhere on my profile page! The only thing I found was that when you go to Mayo Clinic connect and there's a column going down the left side for groups and accounts and stuff there is the word messages there so when I clicked on that it brought me to all of my private messages. I am grateful! But yeah John Bishop spend a lot of time explaining to me how to find my bookmarked items and there was no bookmark item on my profile page at all anywhere on both my cell phone and laptop. No wonder I've been so frustrated trying to get around on connect.

, take good care and warmest regards, Sunny

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Hi Sunny, hope you are doing well. I am also having to do the eye routine due to the recent onset of Sjögren’s; If you wouldn’t mind sharing, can you tell me which eye drops you have found to work best for you? I’ve been trying 4-5 different brands but haven’t yet decided which I like best. Helen

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Profile picture for sunnyflower @sunnyflower

PS: I did see the bookmark icon one time but not since then.

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Found the bookmarks! They were right in front of me! I had been looking for the icon when instead, it was written as a word beneath my picture among other options!! Geesh, I can't find a rock to crawl under! 🙄

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Profile picture for sunnyflower @sunnyflower

Found the bookmarks! They were right in front of me! I had been looking for the icon when instead, it was written as a word beneath my picture among other options!! Geesh, I can't find a rock to crawl under! 🙄

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@sunnyflower, make room for me under that rock. I did the same thing. Hahahaha, Chris

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Profile picture for Hank @jesfactsmon

@sunnyflower
Thanks Sunny. You did mention this before but I had forgotten about it. I will check them out to see if they allow a trial membership. If they would let me check it out a bit first I would certainly be more interested. I have a high skepticism ratio but you are really keen on them and I put a lot of stock in what you say so I will take a look at their site. Thanks, and hope all is well, Hank

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Let me know. 😊

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Profile picture for Hank @jesfactsmon

@straightaway22
Hi, have you started taking Maximum strength Neuropathy support formula? If you want to try it, it does not appear to me to have anything harmful in it. It will either help you or not. After the first bottle, if you have not gotten any benefit, just move on. It has a few of the things my wife takes for her neuropathy, i.e. lipoic acid, benfotiamine, acetyl l carnitine, b12, turmeric and others. Of these, she has noticeable benefits from her turmeric (curcumin) supplement more than some of the others, but some people swear by lipoic acid (we take r lipoic acid), b12, it's kind of all over the map depending on the person, just like everything involving neuropathy. It also contains some herbs such as feverfew, skullcap, and others, which might be good, I do not know. The question I would have would be to the quality and source of each different component, which is why we take things individually after researching them. Best, Hank

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Hello Everyone, whenever I want to introduce a new supp to my arsenal, I call the pharmacist (they know more about drugs than doctors per my pharmacology continuing medical education). They often tell me that the supp has contraindications with one of my meds. Often the supp can either diminish or augment the therapeutic dose of one or more of my meds which could be dangerous. So please make sure you do the same, even if you are only taking one medication! I give them the info on the bottle they need and they can always find that supp, at least so far over the years. It can be potentially serious. Be safe, stay well and many blessings, Sunnyflower 😊

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Profile picture for sunnyflower @sunnyflower

Hello Everyone, whenever I want to introduce a new supp to my arsenal, I call the pharmacist (they know more about drugs than doctors per my pharmacology continuing medical education). They often tell me that the supp has contraindications with one of my meds. Often the supp can either diminish or augment the therapeutic dose of one or more of my meds which could be dangerous. So please make sure you do the same, even if you are only taking one medication! I give them the info on the bottle they need and they can always find that supp, at least so far over the years. It can be potentially serious. Be safe, stay well and many blessings, Sunnyflower 😊

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Ooops, forgot to include @straightaway22 in my above reply to Hank. So sorry!

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Profile picture for sunnyflower @sunnyflower

Hello Everyone, whenever I want to introduce a new supp to my arsenal, I call the pharmacist (they know more about drugs than doctors per my pharmacology continuing medical education). They often tell me that the supp has contraindications with one of my meds. Often the supp can either diminish or augment the therapeutic dose of one or more of my meds which could be dangerous. So please make sure you do the same, even if you are only taking one medication! I give them the info on the bottle they need and they can always find that supp, at least so far over the years. It can be potentially serious. Be safe, stay well and many blessings, Sunnyflower 😊

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I’ve been taking Maximum Strength Neuropathy for about a week. No results yet good or bad. I think I need to take it for at least a month. I will come back on this site and let you know..

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