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.

rllh5403 | @rllh5403 | Nov 10, 2023

Yes, I have balance issues from time to time.

Debbie | @dbeshears1 | Nov 11, 2023

In reply to @jakedduck1 "@jubantique @SusanEllen66 Yes that’s true. When I took it there was no time release Gabapentin. I..." + (show)

I’m not medically fluent to know what immediate release vs time release is exactly. But my general googling suggests that the Gabapentin tablet I take can take 2-3 hours to “kick in”. I worked gradually up to 800 mg 3x a day to find my optimal spot, where I’ve been about 6 years at that level. I feel I maintain a good comfort level with little if any side affects with the pills spread out evenly. I look at it as keeping the medicine flowing at an even level. In the event I miss a dose, my body usually lets me know with a low level nerve pain starting in my legs after 2-3 hours. When I finally take the missed dose, it seems to take a couple hours for my body to return to the even keel it was used to. I’m ecstatic when I realized I missed a whole dose without my body realizing it, but that’s rare. For me & my Gabapentin type, I’ve learned my body does best on the 3 even doses a day. Some can enjoy lower doses at more frequent intervals but I know that it would be a scheduling challenge for me to have more time slots. I’d work with your doctor to find what helps you stay more comfortable and stable!

charlotte1952 | @charlotte1952 | Nov 11, 2023

In reply to @lisasgroup "Have you talked to a pain psychologist? They can help many." + (show)

No I have not. I didn’t even know there was such a field. I will ask when I see my oncologist next appointment. Thank you. And wish you well!

charlotte1952 | @charlotte1952 | Nov 11, 2023

In reply to @dbeshears1 "I’m not medically fluent to know what immediate release vs time release is exactly. But my..." + (show)

Thank you for your comment. I will discuss this evenly spaced dosage with at my next Dr appointment. I have been taking 1 am, 2 noon and 3 at bedtime. ( 300 mgs). What you described makes total sense. When you have been on this medication for a long time you can listen to your body and know what works. Take care and wish you well.

SusanEllen66 | @SusanEllen66 | Nov 11, 2023

In reply to @jakedduck1 "@SusanEllen66 Have you thought about getting 100 mg of Gabapentin and cutting it in half of..." + (show)

@jakedduck1 If I remember correctly, they are capsules so you can’t cut them.
I take medications for other diseases and I think my body is overwhelmed…

Debbie | @dbeshears1 | Nov 12, 2023

In reply to @SusanEllen66 "@jakedduck1 If I remember correctly, they are capsules so you can’t cut them. I take medications..." + (show)

The ones I take are tablets and can be cut. When I was going through throat radiation, I needed to cut them in half in order to be able to swallow them, as the pills (my 800mg ones) are rather large for even my normal throat to swallow. It was even hard to cut with my pill splitter and crusher if I needed to. But with the capsules you describe, I’ve always understood you shouldn’t try to take any of the contents out of those. I would certainly talk to your doctor about prescribing a different form and dosage if you don’t need it in the capsule form.

rllh5403 | @rllh5403 | Nov 12, 2023

I have PMR and SFN. Would I need to see a neurologist for SFN and a rheumatologist for the PMR?

lgpn5094 | @lgpn5094 | Nov 13, 2023

I have idiopathic SF Neuropathy (diagnosed 2018). 100mg GabaPentin 6x per day. I twisted a knee 3 months ago. X-rays showed bones OK, Orthopedic said come back next year.
Question: How much does neuropathy inhibit join healing? Should I increase GP or accelerate any Orthopedic steps based on neuropathy retarding my healing?

SusanEllen66 | @SusanEllen66 | Nov 13, 2023

In reply to @lgpn5094 "I have idiopathic SF Neuropathy (diagnosed 2018). 100mg GabaPentin 6x per day. I twisted a knee..." + (show)

@lgpn5094 of course we are not doctors so we should not advise anyone on this.
I will tell you, that I have had both of my knees totally replaced while having neuropathy. I didn’t notice any issues. I was not taking Gabapentin at that time either.

rajoy | @rajoy | Nov 16, 2023

In reply to @domiha "Hi, Rich. Glad you posted to the group. Is your PN a result of diabetes? chemo?..." + (show)

Cause unknown. Feet and legs. Not in hands. I have Kaiser Insurance. Been to primary care doc. and a couple of neuroligists. Nobody has mentioned surgery.
The last neurologist told me it is going to get worse and there is nothing she can do for me. So I haven't been out of my house for about 1 1/2 years except to see a doc. My wife travels and I am here alone for a few days at a time. Really sucks.
If the Doc is right I am headed foe a LTC facility soon. Luckily I have LTC Insurance.