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.

@johnbishop

Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls - The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website - https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria - Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss - down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane - https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back - How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg
https://www.youtube.com/watch?v=gOZcbNw7sng&feature=youtu.be

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@johnbishop John, thanks for the information and your incredible journey in getting healthier through diet and exercise. Congratulations on your weight loss! I can appreciate how much more difficult It is to achieve with neuropathy. I have believed for over 10 years that our immune system is mostly in a healthy gut containing good flora. A good probiotic supplement will have many different strains of bacteria and contain a huge total count of all the strains. The more different strains and the more total population of bacteria, the better the supplement will be. I did check my probiotic supplement and it does contain the strain of bacteria you mentioned.
Yogurt is another good source of good bacteria. And making your own is even better. The store bought variety contains too much sugar for me. I don’t agree with the current artificial sweeteners like sucralose. I prefer plain. I made my own greek yogurt even before it became popular in the stores. It was a lot of work but delicious fresh. I made it regularly using organic milk. Even my daughter liked it. For those who follow a vegetarian diet without milk and eggs, tempeh is another probiotic food.
Thank you so much for sharing! The information and links will make interesting reading. I always believed in having good health through diet and exercise. I followed it before my AVM and would like to continue with as much as I can. Weight loss is a new challenge for me because of my heat tolerance and muscle weakness. Doctors were puzzled as to why I survived my AVM......diet and exercise says it all! John, good to see you are following your goals for a healthier you. Small steps make big strides. You will get there for a more enjoyable life. Stay safe my friend. Wish you well, Toni

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@avmcbellar

@johnbishop John, thanks for the information and your incredible journey in getting healthier through diet and exercise. Congratulations on your weight loss! I can appreciate how much more difficult It is to achieve with neuropathy. I have believed for over 10 years that our immune system is mostly in a healthy gut containing good flora. A good probiotic supplement will have many different strains of bacteria and contain a huge total count of all the strains. The more different strains and the more total population of bacteria, the better the supplement will be. I did check my probiotic supplement and it does contain the strain of bacteria you mentioned.
Yogurt is another good source of good bacteria. And making your own is even better. The store bought variety contains too much sugar for me. I don’t agree with the current artificial sweeteners like sucralose. I prefer plain. I made my own greek yogurt even before it became popular in the stores. It was a lot of work but delicious fresh. I made it regularly using organic milk. Even my daughter liked it. For those who follow a vegetarian diet without milk and eggs, tempeh is another probiotic food.
Thank you so much for sharing! The information and links will make interesting reading. I always believed in having good health through diet and exercise. I followed it before my AVM and would like to continue with as much as I can. Weight loss is a new challenge for me because of my heat tolerance and muscle weakness. Doctors were puzzled as to why I survived my AVM......diet and exercise says it all! John, good to see you are following your goals for a healthier you. Small steps make big strides. You will get there for a more enjoyable life. Stay safe my friend. Wish you well, Toni

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Thanks Toni @avmcbellar, I use organic half & half with a little organic heavy cream to make my yogurt. I also bought an inexpensive yogurt maker that makes it really easy to make your own. You are right about the small steps making big strides 🙂

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@bustrbrwn22

@jimhd thanks for sharing. Suicide is a daily desire so I have to work hard to remember what I should live for.

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@jimhd. Hi. Do you have a pet/service animal? I'm thinking you probably already do, but just in case, I thought I'd ask. I know so many, including a family member, have them and their lives have improved dramatically.
All my best, Sunnyflower

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@bustrbrwn22

@helennicola @jesfactsmon Do the injections work and do you need multiples in a compressed timeframe? Is a cortisone injection the same as a steroid injection. Sorry for my lack of knowledge and thanks for your patience explaining

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@bustrbrwn22 Hi, yes, cortisone is a steroid. I had a steroid injection Wednesday into my L-Spine. The effects could last weeks or months, no one knows. It's different for everyone. Years ago I had a series of 3 of these and none of them worked so that's when they did my 1st of 3 surgeries I've had.
There are no apologies allowed on Connect. Except for me of course. I'm president of that club but am improving! 😉
Have a blessed weekend. Deeply caring, Sunnyflower 😊

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@sunnyflower

@bustrbrwn22 Hi, yes, cortisone is a steroid. I had a steroid injection Wednesday into my L-Spine. The effects could last weeks or months, no one knows. It's different for everyone. Years ago I had a series of 3 of these and none of them worked so that's when they did my 1st of 3 surgeries I've had.
There are no apologies allowed on Connect. Except for me of course. I'm president of that club but am improving! 😉
Have a blessed weekend. Deeply caring, Sunnyflower 😊

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@sunnyflower I have an injection scheduled for the 23rd. I think it will be the first of 3 but it’s so expensive. Please keep us posted on how it goes. Is there anything someone should be worried about with getting these (besides the standard possibility of infection etc)?

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@helennicola

I’m hoping the one I am going to get will last for while, I have had this bursitis for 6 months and have had P/T, do exercises, use ice and it keeps coming back. It’s worse at night and necessitates using some type of pain relief: lidocaine gel, patches, Aleve, etc. Helen

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Definitely, absolutely hope this one exceeds your expectations by miles!! 🙏 Sunnyflower 🤗

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@colleenyoung

Hi all,
I've noticed a wide variety of related topics being discussed over the past few days. I encourage you to occasionally review the Group Directory https://connect.mayoclinic.org/groups/

There are over 65 groups on Mayo Clinic Connect where people are talking about the things that matter to you. Relevant to recent posts here, I'd like to highlight a few that may interest you:

- Bones, Joints & Muscles https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
Many discussions about osteoporosis and bone health like this one "Treating Osteoporosis" https://connect.mayoclinic.org/discussion/hi-im-new-to-the-site-and-am-interested-in-treating-osteoperosis/

- Chronic Pain
You'll find discussions about headaches and migraines, hip pain, bursitis and much more.

- Depression & Anxiety https://connect.mayoclinic.org/group/depression-anxiety/

- Epilepsy & Seizures https://connect.mayoclinic.org/group/epilepsy-2bb359/

- Joint Replacements https://connect.mayoclinic.org/group/joint-replacements/

- Sleep Health https://connect.mayoclinic.org/group/sleep-health/

- Spine Health https://connect.mayoclinic.org/group/spine-health/

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Thank you Colleen. I hope there's a Rheumatology group. Will look when feeling up to it. And remember! Take care, Sunnyflower 🙃

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@bustrbrwn22

@sunnyflower I have an injection scheduled for the 23rd. I think it will be the first of 3 but it’s so expensive. Please keep us posted on how it goes. Is there anything someone should be worried about with getting these (besides the standard possibility of infection etc)?

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@bustrbrwn22
Hi. My understanding is that one may have the typical side-effects from the steroid ( reading from my discharge summary) :sweating, Flushing or redness of the face and chest, increased heart rate which I had for several hours, slight increase in blood pressure, mood swings, increased appetite (be careful, I was sedated and went crazy with candy!), menstrual changes, restlessness, insomnia, anxiety, hiccups, headache, or extra energy, minor swelling, upset stomach, frequent urination, slight fever, flu-like symptoms. Other than that there can be a little bit of bleeding or infection at the site. I had two injections in different places. I had Conscious Sedation and they did a good job so I didn't feel it at all. I just had to sleep off the sedation. I will be praying for you that it all goes well and completely painless. They even use Lidocaine with my IV so it wasn't bad at all! Take great care and have a good rest of your night, Sunny flower.

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@sunnyflower

Thank you Colleen. I hope there's a Rheumatology group. Will look when feeling up to it. And remember! Take care, Sunnyflower 🙃

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Sunny, I do not see a specific rheumatology topic for Connect. But I did find these by searching for rheumatology or joints in the search window:

Here is something for bones joints and muscles:
https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/

This one about rheumatoid arthritis:
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/?pg=12#comment-332812

This one mentions rheumatology but just has 3 posts:
https://connect.mayoclinic.org/discussion/rheumatologicalneurological/?utm_campaign=search

And, if you look at the following web page it does list other (non Mayo Connect) forums if you are interested: https://www.healthline.com/health/rheumatoid-arthritis-forums#Reach-Out

That was as far as I got. Best, Hank

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@sunnyflower

@bustrbrwn22
Hi. My understanding is that one may have the typical side-effects from the steroid ( reading from my discharge summary) :sweating, Flushing or redness of the face and chest, increased heart rate which I had for several hours, slight increase in blood pressure, mood swings, increased appetite (be careful, I was sedated and went crazy with candy!), menstrual changes, restlessness, insomnia, anxiety, hiccups, headache, or extra energy, minor swelling, upset stomach, frequent urination, slight fever, flu-like symptoms. Other than that there can be a little bit of bleeding or infection at the site. I had two injections in different places. I had Conscious Sedation and they did a good job so I didn't feel it at all. I just had to sleep off the sedation. I will be praying for you that it all goes well and completely painless. They even use Lidocaine with my IV so it wasn't bad at all! Take great care and have a good rest of your night, Sunny flower.

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@sunnyflower just cause I want to talk I did 2 steroid injections many years ago the first was relatively painless but on the second one my pain shot through the roof. The doctor said something about sometimes the whatever the thingie is rides the nerve. Conscious sedation is a godsend! Thanks for letting me share.

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