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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

cocodab | @cocodab | Jul 13, 2019
In reply to @summertime4 "I was put on Gabapentin for fibromyalgia and was later diagnosed also with peripheral neuropathy. I..." + (show)
@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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johnhans | @johnhans | Jul 13, 2019
In reply to @summertime4 "I was put on Gabapentin for fibromyalgia and was later diagnosed also with peripheral neuropathy. I..." + (show)
@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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1 reply
cocodab | @cocodab | Jul 13, 2019

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.

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1 reply
steeldove | @steeldove | Jul 13, 2019
In reply to @wilcy "Gabapentin did nothing but messed up my memory" + (show)
@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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wilcy | @wilcy | Jul 13, 2019
In reply to @grandmar "Welcome @wilcy I've had neuropathy for a brief time. No one seems to know why it..." + (show)
@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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summertime4 | @summertime4 | Jul 13, 2019
In reply to @johnhans "I took topamax for years and then my doctor wanted me off of it because if..." + (show)
@johnhans

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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And so. We are probably already dependent if on that long so why al of a sudden. Does he think we will break in the pharmacy and steal their topamax. It doesn't make me feel that kind of good. Some times you just have to wonder.

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1 reply
wilcy | @wilcy | Jul 13, 2019
In reply to @summertime4 "And so. We are probably already dependent if on that long so why al of a..." + (show)
@summertime4

And so. We are probably already dependent if on that long so why al of a sudden. Does he think we will break in the pharmacy and steal their topamax. It doesn't make me feel that kind of good. Some times you just have to wonder.

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Am 68, so what if I get addicted?

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1 reply
cocodab | @cocodab | Jul 13, 2019
In reply to @wilcy "Am 68, so what if I get addicted?" + (show)
@wilcy

Am 68, so what if I get addicted?

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If I was well tomorrow I would so gladly flush all that down the toilet. The difference is when you continue to use something when it’s not needed. I am waiting for that day and hoping for it.

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johnhans | @johnhans | Jul 13, 2019

There is a list put out by the federal government of what drugs can cause dependency or addiction in elderly. Notice the
can and not will. It is up to each doctor to decide. In my case I felt the Topamax was not doing a lot so he said quit. Also notice the listing of both addicted and dependent. It was pointed out to me years ago on Connect that they are two different things. Addicted means the body will come to need it; that is it will be unable to function without having it. That is not including the normal use of the drug. Dependent means we grow used to having it and feel we cannot go without it. The body will still function normally, outside of the drugs use, if you do not take it.

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