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?

@retiredteacher

@contentandwell It is ironic, but I hope to find something that will help so that walking is possible again. At this point, I cannot even grocery shop, so my husband is having to do that in spurts. We'll get through this though my feet may not improve, My concern is the erratic blood numbers for my diabetes. I have researched and see that extreme heat definitely affects the numbers. We have had temps ten to fifteen degrees higher than the norm and even in in the house with AC it is still too warm. We just take it one day at a time.
Thanks for caring.
Carol

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Hi @retiredteacher, I hope controlling your diabetes will help with your feet. I would think the blood sugars are effected by the foods consumed and the amount of exercise. Perhaps when the air temperature is warmer, a person is less likely to move around as much, thus the blood sugars will be higher. I also have a more difficult time when the weather is hotter. I do less as a result and have to take many breaks when doing things around the house. I do not have diabetes but I share the symptoms due to my AVM.

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Hi my name is Catie. I have a vitamin B 12 deficiency and am now having peripheral neuropathy pain. My symptoms progressed very quickly in 1 week. I started with internal vibrations that have spread everywhere and now I have muscle weakness in my legs and burning pain in my feet and hands. It often hurts to wash my hands and put weight on my feet. I just started Gabapentin. Any tips on how to deal with the pain are greatly appreciated.
Thank you for the group!
Catie

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@cbnewpain

Hi my name is Catie. I have a vitamin B 12 deficiency and am now having peripheral neuropathy pain. My symptoms progressed very quickly in 1 week. I started with internal vibrations that have spread everywhere and now I have muscle weakness in my legs and burning pain in my feet and hands. It often hurts to wash my hands and put weight on my feet. I just started Gabapentin. Any tips on how to deal with the pain are greatly appreciated.
Thank you for the group!
Catie

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Am about to try medical marijuana! Steve

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Gabapentin did nothing but messed up my memory

Liked by johnhans, grandmaR

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@wilcy

Gabapentin did nothing but messed up my memory

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I just started taking gabapentin. The doctor warned me that it could cause problems with my anxiety and depression and it did. After taking a low dose of 2 pills in a day I started feeling very anxious and angry. I started crying all the time. I could not stop. Now that the medication has worn off I am doing fine. No more gabapentin for me. I have friend who has taken it and no problems. Gabapentin has even been given as anti-anxiety meds, but though in some it works as an anxiety inducer. That is why it is important to listen to your doctor.

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@wilcy

Gabapentin did nothing but messed up my memory

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Welcome @wilcy
I've had neuropathy for a brief time. No one seems to know why it started. However, I am very lucky (so far) because I do not suffer from any pain. I don't know what the future holds, none of us do, but I will take things as they come.
I also take Gabapentin for a variety of other issues I have. I do not feel it helps me either. I was very interested in your comment about it impacting your memory! My memory SUCKS (pardon the French)! I've been thinking of coming off the Gabapentin, but each time I do, I have some sort of a flare up and the docs tell me to remain on. Guess I'll see
Sorry I can't help you regarding how to manage the pain, but there are many other wonderful people in the group who can give you suggestions.
Enjoy the remainder of the weekend!
Ronnie (GRANDMAr)

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@johnhans

I just started taking gabapentin. The doctor warned me that it could cause problems with my anxiety and depression and it did. After taking a low dose of 2 pills in a day I started feeling very anxious and angry. I started crying all the time. I could not stop. Now that the medication has worn off I am doing fine. No more gabapentin for me. I have friend who has taken it and no problems. Gabapentin has even been given as anti-anxiety meds, but though in some it works as an anxiety inducer. That is why it is important to listen to your doctor.

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@johnhans

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@johnhans

I just started taking gabapentin. The doctor warned me that it could cause problems with my anxiety and depression and it did. After taking a low dose of 2 pills in a day I started feeling very anxious and angry. I started crying all the time. I could not stop. Now that the medication has worn off I am doing fine. No more gabapentin for me. I have friend who has taken it and no problems. Gabapentin has even been given as anti-anxiety meds, but though in some it works as an anxiety inducer. That is why it is important to listen to your doctor.

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@johnhans
Good to know!!!!
Thanks!
Ronnie (GRANDMAr)

Liked by johnhans

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@cbnewpain

Hi my name is Catie. I have a vitamin B 12 deficiency and am now having peripheral neuropathy pain. My symptoms progressed very quickly in 1 week. I started with internal vibrations that have spread everywhere and now I have muscle weakness in my legs and burning pain in my feet and hands. It often hurts to wash my hands and put weight on my feet. I just started Gabapentin. Any tips on how to deal with the pain are greatly appreciated.
Thank you for the group!
Catie

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Hello Catie @cbnewpain — Welcome to Connect. You mentioned you have vitamin B12 deficiency. Vitamin B12 deficiency can cause nerve damage and other symptoms.

Vitamin B12 deficiency can be sneaky, harmful
https://www.health.harvard.edu/blog/vitamin-b12-deficiency-can-be-sneaky-harmful-201301105780

Is your doctor trying to boost your B12 levels to help with the nerve pain? I only have numbness with my small fiber peripheral neuropathy so I'm hoping other members can share their experience and what helps with the pain.

Liked by johnhans

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I was put on Gabapentin for fibromyalgia and was later diagnosed also with peripheral neuropathy. I had serious swelling of feet, toes, ankle and leg with terrific pain. Was then diagnosed with lymphedema. I was referred to a neurologist who immediately took me off gabapentin because it can contribute to the swelling. She prescribed Topamax and I have been taking that for almost 2 months. I would like to note that the swelling and fluid retention did not in any way decrease when I stopped the gabapentin. However, I stay on the topamax because it does not cause weight gain and in fact I have lost some weight. Another plus I see is that I do not have that the feeling of bugs crawling and jerking around in my legs. I am sleeping fairly well. I don't know if anyone else has been prescribed Topamax , but so far I am not having any problems that I am aware of.

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@summertime4

I was put on Gabapentin for fibromyalgia and was later diagnosed also with peripheral neuropathy. I had serious swelling of feet, toes, ankle and leg with terrific pain. Was then diagnosed with lymphedema. I was referred to a neurologist who immediately took me off gabapentin because it can contribute to the swelling. She prescribed Topamax and I have been taking that for almost 2 months. I would like to note that the swelling and fluid retention did not in any way decrease when I stopped the gabapentin. However, I stay on the topamax because it does not cause weight gain and in fact I have lost some weight. Another plus I see is that I do not have that the feeling of bugs crawling and jerking around in my legs. I am sleeping fairly well. I don't know if anyone else has been prescribed Topamax , but so far I am not having any problems that I am aware of.

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I was on gaban for two years it only gave me problems and 20 pounds . Did not help at all. Eventually my face started swelling and I went off it.
I am now and have been on topamax for quite a few years and it doesn’t give me any bad side effects. For me topamax is much better with less or no side effects. Much luck to you!

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@summertime4

I was put on Gabapentin for fibromyalgia and was later diagnosed also with peripheral neuropathy. I had serious swelling of feet, toes, ankle and leg with terrific pain. Was then diagnosed with lymphedema. I was referred to a neurologist who immediately took me off gabapentin because it can contribute to the swelling. She prescribed Topamax and I have been taking that for almost 2 months. I would like to note that the swelling and fluid retention did not in any way decrease when I stopped the gabapentin. However, I stay on the topamax because it does not cause weight gain and in fact I have lost some weight. Another plus I see is that I do not have that the feeling of bugs crawling and jerking around in my legs. I am sleeping fairly well. I don't know if anyone else has been prescribed Topamax , but so far I am not having any problems that I am aware of.

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I took topamax for years and then my doctor wanted me off of it because if being elderly. The elderly can become dependent.

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I can’t see being able to come off it unless they come up with new medicine. My condition is getting worse. Simply task are difficult, walk on some days is horrific and I seem to leave the house now less and less. I have allergy to any sulfa type-based medication allergic to now gaban.
No fun waking up like this.

55871D7F-DF8C-405B-B2E5-4F6670244485

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@wilcy

Gabapentin did nothing but messed up my memory

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@wilcy Gabapentin did absolutely nothing for my pain, and it screwed up my memory. Only benefit of Gabapentin is that taken an hour or so before bedtime along with 100 mg of Tramadol helps me sleep.

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@grandmar

Welcome @wilcy
I've had neuropathy for a brief time. No one seems to know why it started. However, I am very lucky (so far) because I do not suffer from any pain. I don't know what the future holds, none of us do, but I will take things as they come.
I also take Gabapentin for a variety of other issues I have. I do not feel it helps me either. I was very interested in your comment about it impacting your memory! My memory SUCKS (pardon the French)! I've been thinking of coming off the Gabapentin, but each time I do, I have some sort of a flare up and the docs tell me to remain on. Guess I'll see
Sorry I can't help you regarding how to manage the pain, but there are many other wonderful people in the group who can give you suggestions.
Enjoy the remainder of the weekend!
Ronnie (GRANDMAr)

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Tks! Saw another doctor 2 days ago! He said he would not personally use Gabapentin! Too dangerous, especially the memory!

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