Living with Neuropathy - Welcome to the group

@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

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!

@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

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

@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?

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

@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.

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.