1. < Neuropathy
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.

jessamyn | @jessamyn | Nov 12, 2020
In reply to @erikas "@jessamyn Regarding, "How do you build your faith?, many members find healing and solace in faith...." + (show)
@erikas

@jessamyn Regarding, "How do you build your faith?, many members find healing and solace in faith. You may wish to join this discussion:

- How Spirituality Can Help Stress https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/

You also mention that palliative care has been suggested for your mom. Palliative care is more appropriately named Symptom Management care or Comfort Care. It is not exclusively care meant only at the end of life, but is specifically focused on managing pain and other symptoms that affect quality of life. It is a holistic approach dealing with physical symptoms and emotional and spiritual needs as well, and can involve family members, not just the patient. I encourage you and your mom to look into it.

On the one hand you feel maybe you should take your mother's pain, "more seriously" but on the other hand you feel numb to it because it is all you have ever known. It must be extremely difficult to hear your mother talk about suicide. I saw in another post in a different discussion that you have attended Al-Anon for 11 years. This leads me to believe that you and your mother have a difficult relationship aside from her "pain." Did I get that right?

Jump to this post

My mom has had an eating disorder for most of her life, but she is not an alcoholic or addict. My dad got sober from drugs and alcohol when I was 5 and it is a family disease so lots of our family have "isms" I also go to ACA adult children of alcoholics. My mom and my relationship has been very strong and kind for most of our lives, we just are less close now, partly because I am distancing myself- both on purpose and not.

REPLY
jessamyn | @jessamyn | Nov 12, 2020
In reply to @jesfactsmon "@jessamyn Hi there, my wife's progressive neuropathy began 6 years ago. I am her only caregiver...." + (show)
@jesfactsmon

@jessamyn
Hi there, my wife's progressive neuropathy began 6 years ago. I am her only caregiver. It's becoming more and more of a full time occupation. To use a runner's analogy, I am learning that this is like a marathon rather than a sprint. When you run a sprint you give as much as you can for the entire run, 100% output, as much as is possible. In a marathon you have to pace yourself, you have to keep going but DON'T put in all you have for most of the run, otherwise you won't do well and maybe won't even finish. As a full time caregiver who will likely be doing this for many years to come, I have to realize, that just like in a marathon, I have to pace myself. Which means:

1) don't get down on myself if I don't have full blown empathy at all times and in all situations

2) being there is what is the most important thing, regardless of whether or not I am putting out 100% all the time, which I can't

3) making sure that all the REQUIRED needs are being met always, addressing the extra needs are gravy, which I DO want to provide but need to realize I might not ALWAYS be able to

4) I will have failures (like losing my patience) and the only thing to do is learn from the failures and move on, just don't beat myself up too much, and hopefully I will do better next time

To generalize, the bottom line with all of these is to be kind to oneself, just as much as being kind to one's loved one; we are human and can't expect to be superhuman, we just need to do the best we can. A lot of the love that we have for our loved ones is evidenced by the fact that we are there for them. When our loved one comes to know this, it is a tremendous comfort for them, even in times that are stressful, having that confidence that the caregiver will always be there gives them a tremendous positive lift or benefit.

This is my own set of feelings about this from my limited experience so far. Kindness, to yourself as much as to your loved one, is first and foremost the most important element in caregiving.

Best, Hank

Jump to this post

Thank you Hank. I agree with and know most of this stuff, just harder to actually practice. And how do you speak to your wife and let her know that you are running a marathon and not a sprint?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Nov 12, 2020
In reply to @jessamyn "Thank you for this. She hasn't had much of a diagnosis besides fibromyalgia. she hasn't wanted..." + (show)
@jessamyn

Thank you for this. She hasn't had much of a diagnosis besides fibromyalgia. she hasn't wanted to get a neuropathy test because she feels like it might trigger more neuropathy. She has a primary care doctor and we had been using a medical advocate which I think I might look into doing again. They have also been discussing getting her some palliative care even though she is not dying. This seems like a very helpful group. I also had been going to a caretaker support group for a while before COVID, but didn't find very many other people who had parents as young as my mom. She is only 66! She has had pain since I was 8 and she got a Traumatic Brain Injury and everything kind of spiraled down hilll after that, but she has been able to manage her pain until this past year when it became neuropathic. She got into the SCIPP program at Stanford, but decided she wasn't interested in going because it wasn't focused on diagnostics, mostly just on managing pain meds, but I am not so sure that we shouldn't just have her go there for a week because they have a psychiatrist and PT and NP.... Thanks for reading!

Jump to this post

@jessamyn, I think that might work out better than you think if you can get your mom to go to the facility for a week. Having a multidisciplinary team approach for treatment could be beneficial. You mentioned your mother had a Traumatic Brain Injury when you were 8 years old. There is another Connect discussion that might be helpful - Adult Life after a Traumatic Brain Injury (TBI): https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/

Another discussion members have found helpful covers a multitude of pain causing conditions and might be another option for your mom.
Myofascial Release Therapy (MFR) for treating compression and pain discussion: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
sunnyflower | @sunnyflower | Nov 12, 2020
In reply to @johnbishop "@sunnyflower I was not able to find a discussion but I did find your post that..." + (show)
@johnbishop

@sunnyflower I was not able to find a discussion but I did find your post that talks about the topic. It is in the Neuropathy Medications discussion - https://connect.mayoclinic.org/discussion/neuropathy-medications/?pg=4#comment-423296

Jump to this post

Hi John, thanks so much. When time allows, would you please walk me through the steps that led you to finding this articular discussion? If it doesn't take you too much time that is. Thanks so much, Sunny

REPLY
1 reply
sunnyflower | @sunnyflower | Nov 12, 2020
In reply to @airpod "How did they find adrenal insufficiency, blood test? See I don't know the difference with poly..." + (show)
@airpod

How did they find adrenal insufficiency, blood test? See I don't know the difference with poly or perephial nueropathy

Jump to this post

Hello airpod. I think I may have already answered this so forgive the repeat if so. I just wanted to be sure I didn't miss this. They found my adrenal insufficiency w/ a cortisol blood test. It was low. And, I had symptoms. I wish you all the best, Sunnyflower

REPLY
sunnyflower | @sunnyflower | Nov 12, 2020
In reply to @erikas "@jessamyn Regarding, "How do you build your faith?, many members find healing and solace in faith...." + (show)
@erikas

@jessamyn Regarding, "How do you build your faith?, many members find healing and solace in faith. You may wish to join this discussion:

- How Spirituality Can Help Stress https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/

You also mention that palliative care has been suggested for your mom. Palliative care is more appropriately named Symptom Management care or Comfort Care. It is not exclusively care meant only at the end of life, but is specifically focused on managing pain and other symptoms that affect quality of life. It is a holistic approach dealing with physical symptoms and emotional and spiritual needs as well, and can involve family members, not just the patient. I encourage you and your mom to look into it.

On the one hand you feel maybe you should take your mother's pain, "more seriously" but on the other hand you feel numb to it because it is all you have ever known. It must be extremely difficult to hear your mother talk about suicide. I saw in another post in a different discussion that you have attended Al-Anon for 11 years. This leads me to believe that you and your mother have a difficult relationship aside from her "pain." Did I get that right?

Jump to this post

Sounds very complicated @sessamyn. As you know I'm sure, that the caregiver can become ill or more ill, or affected in some not so good ways, than the person they are caring for. Yes, this is also true of an enabler which I'm sure you've heard in your Al-Anon meetings, however I am NOT using this principle in that context nor suggesting this is true of you and your mom's relationship.

Are you still active in your meetings online? I'm not a licensed therapist but had a thought just now. I don't know you or your circumstances well enough, but wondered if you've ever considered co-dependent anonymous to try for a meeting or two? The subject may not apply to you and your circumstances with your mom, but there might be some nuggets there to glean?? Just a thought. I do not judge nor know you and your story well enough to know if that would be a good idea.

You are very strong to share your story and I'm so glad you feel you can that here. I know I speak for all of us that we really do care and want to help so please continue to reach out.

Upholding you and your family in prayer, Sunnyflower

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Nov 12, 2020
In reply to @sunnyflower "Hi John, thanks so much. When time allows, would you please walk me through the steps..." + (show)
@sunnyflower

Hi John, thanks so much. When time allows, would you please walk me through the steps that led you to finding this articular discussion? If it doesn't take you too much time that is. Thanks so much, Sunny

Jump to this post

@sunnyflower - I would be happy to walk you though how I found your post.
1 - I copied a phrase out of your message to me "they didn't want to enable me" (without the quotes).
2 - I went to the top of the discussion and clicked the search icon (magnifying glass on a computer) or the search box at the top of your phone/tablet.
3 - I pasted the "they didn't want to enable me" into the search box and pressed Enter (or Search button on phone/tablet).
4 - It brought up a list of posts and the one I was looking for was the first one by you.
REPLY
1 reply
sunnyflower | @sunnyflower | Nov 13, 2020
In reply to @johnbishop "@sunnyflower - I would be happy to walk you though how I found your post. 1..." + (show)
@johnbishop

@sunnyflower - I would be happy to walk you though how I found your post.
1 - I copied a phrase out of your message to me "they didn't want to enable me" (without the quotes).
2 - I went to the top of the discussion and clicked the search icon (magnifying glass on a computer) or the search box at the top of your phone/tablet.
3 - I pasted the "they didn't want to enable me" into the search box and pressed Enter (or Search button on phone/tablet).
4 - It brought up a list of posts and the one I was looking for was the first one by you.

Jump to this post

Thx John. I tried it and it worked!

REPLY
bustrbrwn22 | @bustrbrwn22 | Nov 13, 2020

Hi all. I have just been given Zonisamide to help treat my sciatica. It’s primary an anticonvulsant. Has anyone else used or know anyone will experience with? I’m scared because lamictal/lamotragine gave me seizures and it’s an anticonvulsant as well. Thanks.

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Nov 13, 2020

I’m going to try posting again to see if any responses. Does anyone else have neuropathy/sciatica that goes into the bottom of their feet feeling like pick axes most of the day or a hammer pounding? I’ve tried injections, TENS, started myofascial therapy, various antidepressants/anticonvulsants and the only thing so far that’s helped is hydrocodone. TENS only helps when wearing on the bottom of my feet.

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.