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?

Hi @2sweet my A1C was 5.8 last January but has always been in the 5.7 to 6.1 range. I too have issues walking due to arthritis, neuropathy and a bad knee. I do think a person still needs to try and do as much as they can without causing a lot of pain. I'm not quite as strict with my diet as you have been but I do try to eat organic when I can, eat mostly poultry and some pork and not too much red meat but still like hamburgers made at home. I avoid all fast food like the plague.

Is there anything they can do reduce your hip pain?

Hoping you have a good weekend.

John

REPLY

Hi John, I don't know where you live, but I am near Lancaster, PA and we have a GREAT fast food restaurant near my retirement community, and on weekdays, until 1 PM they deliver, I found the place when I started going to physical therapy as it is just across the street. You'd love it……as no food there is processed. You ask for chicken and you get an intact piece of chicken or slices thereof!. They specialize in sandwiches, soups and salads. It is a rather a local chain named Isaac's and all of their sandwiches have bird's names. And if you see a sandwich you'd like that might be advertised let's say on a pretzel roll, I change it to whole wheat bread! No problem. Everyday they have a different soup made fresh daily. Many soups are spicy which I don't care for but most of the time they have a great non-spiced one .ALSO with loads of veggies. and maybe some meat….and you can see the pieces of meat, again not chopped up or unrecognizable. And their sandwiches are huge……I usually make a sandwich go for two meals. I used to get their GOONEY BIRD which is turkey and sprouts but now my favorite is twisted chicken which is chicken with a LOT OF FREESH SPINACH! . @gailfaith

REPLY
@gailfaith

Hi John, I don't know where you live, but I am near Lancaster, PA and we have a GREAT fast food restaurant near my retirement community, and on weekdays, until 1 PM they deliver, I found the place when I started going to physical therapy as it is just across the street. You'd love it……as no food there is processed. You ask for chicken and you get an intact piece of chicken or slices thereof!. They specialize in sandwiches, soups and salads. It is a rather a local chain named Isaac's and all of their sandwiches have bird's names. And if you see a sandwich you'd like that might be advertised let's say on a pretzel roll, I change it to whole wheat bread! No problem. Everyday they have a different soup made fresh daily. Many soups are spicy which I don't care for but most of the time they have a great non-spiced one .ALSO with loads of veggies. and maybe some meat….and you can see the pieces of meat, again not chopped up or unrecognizable. And their sandwiches are huge……I usually make a sandwich go for two meals. I used to get their GOONEY BIRD which is turkey and sprouts but now my favorite is twisted chicken which is chicken with a LOT OF FREESH SPINACH! . @gailfaith

Jump to this post

Oh, lucky you! I wish I had an I Isaac's near me in Springfield, Missouri.

REPLY
@gailfaith

Hi John, I don't know where you live, but I am near Lancaster, PA and we have a GREAT fast food restaurant near my retirement community, and on weekdays, until 1 PM they deliver, I found the place when I started going to physical therapy as it is just across the street. You'd love it……as no food there is processed. You ask for chicken and you get an intact piece of chicken or slices thereof!. They specialize in sandwiches, soups and salads. It is a rather a local chain named Isaac's and all of their sandwiches have bird's names. And if you see a sandwich you'd like that might be advertised let's say on a pretzel roll, I change it to whole wheat bread! No problem. Everyday they have a different soup made fresh daily. Many soups are spicy which I don't care for but most of the time they have a great non-spiced one .ALSO with loads of veggies. and maybe some meat….and you can see the pieces of meat, again not chopped up or unrecognizable. And their sandwiches are huge……I usually make a sandwich go for two meals. I used to get their GOONEY BIRD which is turkey and sprouts but now my favorite is twisted chicken which is chicken with a LOT OF FREESH SPINACH! . @gailfaith

Jump to this post

Isaac's sounds like a great place to eat @gailfaith. We've got a couple of cafes here in our small town and a historic restaurant (http://www.hubbellhouserestaurant.com/) all with really good food that use the real deal so I'm really lucky that way. There are also a lot of the not so good places close by for fast food that I avoid. Still I have learned to eat to live and try to shy away from my old live to eat habits.

REPLY

Thank you for your response and the links you sent. I am looking forward to checking them out when I have some good time alone. Is it important to know what form of neuropathy I have? My diagnosis was several years ago.

REPLY

Hi @2sweet – I have no medical training or background but I would want to know if it were me what type of neuropathy I have. When I was diagnosed I was told I have idiopathic small fiber peripheral neuropathy most likely hereditary. I'm not sure from knowing makes a difference other than maybe knowing what the long term symptoms or outcome maybe. If your diagnosis was a few years ago I'm pretty sure your doctor can tell you what type of neuropathy you have.

REPLY

My name is Gwyneth. I suffer from fybromyalgia and osteoarthritis.

REPLY

Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have a really complicated health story so I won’t try to share it all. My kidneys failed about 9 yrs ago due to kidney stones destroying them. I was on dialysis for 5 yrs. I got a kidney transplant in November of 2014. The neuropathy started about 6 mos before my transplant. It was very severe. I cried every day and took 10 mgs of norco twice a day. It didn’t help. My pain dr suggested trying Interferential Therapy which is similar to a TENS unit but does more things. I used it for about 1 1/2 yrs and it helped tremendously. However, I still have pain in my feet. I’m down to 5 mgs of norco once a day so I’m thankful for that. I was considering acupuncture but I don’t know anyone who’s tried it. I’m hoping maying you all will have some other ideas to try. Thanks for letting me join and share my story.

REPLY
@gwyneth

My name is Gwyneth. I suffer from fybromyalgia and osteoarthritis.

Jump to this post

Hi @gwyneth — welcome to Connect. I'm glad you found us. Connect is a good, safe place to ask questions and learn what others with similar health concerns are doing for treatments. I have small fiber peripheral neuropathy, polymyalgia rheumatica and osteopenia along with a few other minor issues. Since you mentioned that you suffer from fibromyalgia and osteoarthritis you might be interested in recently started discussion here on Connect.

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Other discussions you may be interested in:

Groups > Chronic Pain > fibromyalgia pain
https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/

@gwyneth are you able to share what you do for the pain associated with fibromyalgia and osteoarthritis? Do you have any questions you are trying to get answered?

John

REPLY
@banksnc49

Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have a really complicated health story so I won’t try to share it all. My kidneys failed about 9 yrs ago due to kidney stones destroying them. I was on dialysis for 5 yrs. I got a kidney transplant in November of 2014. The neuropathy started about 6 mos before my transplant. It was very severe. I cried every day and took 10 mgs of norco twice a day. It didn’t help. My pain dr suggested trying Interferential Therapy which is similar to a TENS unit but does more things. I used it for about 1 1/2 yrs and it helped tremendously. However, I still have pain in my feet. I’m down to 5 mgs of norco once a day so I’m thankful for that. I was considering acupuncture but I don’t know anyone who’s tried it. I’m hoping maying you all will have some other ideas to try. Thanks for letting me join and share my story.

Jump to this post

Hi Nancy @banksnc49 — welcome to Connect. Thank you for sharing. You certainly have been through a lot. I only have numbness with my peripheral neuropathy in my legs and feet and no pain. I have tried a TENS unit but didn't have much success with it. I know others have used them with different levels of success. I do take over the counter supplements for my neuropathy which have helped some.

I'm tagging other members who have neuropathy to see if they can share some ideas with you on what they use for treatments. @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @gailfaith @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @mfobrien36 @timmckinney — do you have any suggestions for Nancy?

Nancy since you mentioned have had a kidney transplant I would also like to invite two of our Connect Mentors @rosemarya and @hopeful33250 to see if they can offer any suggestions.

John

REPLY

Hello Nancy @banksnc49! I am a volunteer mentor like John and do have some neuropathy, but mine seems to be more autonomic and affects my digestive system more than hands and feet. I am afraid I don't have the kind of experience with symptoms as severe as you describe, but there are many members who keep this topic running regularly and I expect you will see some excellent suggestions. I know I can at least be supportive and hopefully learn from you. I am diabetic and it is entirely possible I will experience some peripheral N if I am here long enough with diabetes. Please keep us up to speed on how you are doing and I will keep watching for info about your foot pain and I am sort of a chronic surfer, so I will run across some things to share.
Blessings,
Gary

REPLY

Hi Gary. Thanks for your post. It sounds as though you’ve had some real struggles with your health. It’s great how you’ve overcome some big obstacles in your life so far. God bless. I look forward to sharing with you again.

REPLY
@banksnc49

Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have a really complicated health story so I won’t try to share it all. My kidneys failed about 9 yrs ago due to kidney stones destroying them. I was on dialysis for 5 yrs. I got a kidney transplant in November of 2014. The neuropathy started about 6 mos before my transplant. It was very severe. I cried every day and took 10 mgs of norco twice a day. It didn’t help. My pain dr suggested trying Interferential Therapy which is similar to a TENS unit but does more things. I used it for about 1 1/2 yrs and it helped tremendously. However, I still have pain in my feet. I’m down to 5 mgs of norco once a day so I’m thankful for that. I was considering acupuncture but I don’t know anyone who’s tried it. I’m hoping maying you all will have some other ideas to try. Thanks for letting me join and share my story.

Jump to this post

Hi John. Thanks for your response. I look forward to sharing information with others. Thanks for referring me to the kidney transplant people.

REPLY
@banksnc49

Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have a really complicated health story so I won’t try to share it all. My kidneys failed about 9 yrs ago due to kidney stones destroying them. I was on dialysis for 5 yrs. I got a kidney transplant in November of 2014. The neuropathy started about 6 mos before my transplant. It was very severe. I cried every day and took 10 mgs of norco twice a day. It didn’t help. My pain dr suggested trying Interferential Therapy which is similar to a TENS unit but does more things. I used it for about 1 1/2 yrs and it helped tremendously. However, I still have pain in my feet. I’m down to 5 mgs of norco once a day so I’m thankful for that. I was considering acupuncture but I don’t know anyone who’s tried it. I’m hoping maying you all will have some other ideas to try. Thanks for letting me join and share my story.

Jump to this post

@banksnc49, Hi, Nancy, I want to add my welcome to Mayo Clinic Connect. I do not have any experience with neuropathy. However, I am liver/kidney recipient (2009) and I am always honored to meet another kidney recipient. I volunteer as a mentor in the Transplant Discussion Group. I would like to extend a hand to you and ask you to visit the Transplant Discussion Group. There is a variety of interesting conversations happening there and I want you to know that you are welcome to read, and to join in anywhere. https://connect.mayoclinic.org/group/transplants/
I would be happy to join you there anytime. I look forward to hearing more of your transplant story.

I am not aware of any relationship between kidney failure (kidney stones) and neuropathy. Do you think that there is any connection?
Rosemary

REPLY

Good morning all, I’ve posted here before and have been tolerating burning numbness in my left foot and left lower leg. My neopathy was caused by stenosis in my lower back. After two lumbar surgeries, I’m left with the neopathy in my left foot. I still have muscle strength so I can walk well but the pain is quite strong when walking or standing. I’ve had this problem for 10 years. I take Gabapentin at 2,000mg per day and use a topical OTC cream by MagniLife. I’ve also tried the large doseage of vitamins called “The Protocol”. Lately my burning pain has increased. Does anyone have a similar problem where the burning foot pain increases over time? I’m also wondering if the Gabapentin effectiveness decreases with time. If anyone can give me some feedback, I’d appreciate it. Thank you.

REPLY
Please login or register to post a reply.