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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?
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Hello Jessamyn, I 'd like to extend a very warm welcome to the Connect group! My heart is extremely heavy to learn about your and your mother's journey. I understand pain and suffering very well and the toll it takes on the patient and their loved ones.
You are an angel to care for your mom and put forth the time and effort to try to help her.
I am not sure how to advise you regarding the best place for her but I know many people will reach out here to you and hopefully have the info you need.
I am certain you will receive a tremendous amount of support, encouragement, compassion and information here as I have.
I will be upholding you in prayer that you will have the comfort of God and His peace through Christ (Philippians 4:7), which surpasses human understanding, in your circumstances.
This alone and solely is what gets me through the many fires we all walk through in this life.
I will also pray for much relief for you both and that you will find just the right help you need.
Many blessings and warmest wishes, Sunnyflower. 🙏🌹😊
Hello @jessamyn, Welcome to Mayo Clinic Connect. I know it must extremely difficult being an only child and not knowing what to do to help your mother. Thank you for being her advocate in getting help. We recently had a member share her experience with the Mayo Clinic Pain Rehabilitation Center that may be helpful if that would be an option. Each of the Mayo Clinic Campus has one, if the Arizona campus is an option.
Here is the post shared by the member - https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/?pg=1#comment-439036
Here's the Mayo Clinic Pain Rehabilitation Center page that describes the program - https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713
There is also a discussion on CRPS that you might want to read what others have shared.
- CRPS - anyone suffering with complex regional pain syndrome: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/
I'm sure that looking at all of your Mom's medications is part of any pain clinics process. Do you know what diagnosis was given by the doctors for the medications your mom is taking?
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3 ReactionsWhat I have learned so far on my journey. Peripheral Neuropathy is what I call a "hodge-podge" disease because every patient gets a mixture of different symptoms depending on what type of nerves have been affected (motor, sensory, autonomic) It seems like each patient has to find a "hodge-podge" recipe to help relieve their pain and other symptoms. Patients have to work together and share notes and experiences of what remedies have helped them. Thats why we have all signed up on Mayo Clinic Connect. Pain Specialists can only do so much by Rx pharmaceuticals. I just figured this out. I want to thank everybody in this group for all their feedback and ideas of how to manage all the different types of symptoms.
Thank you 👱♀️
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3 Reactions@lweave2
And regarding Connect as a source of ideas, I'd like to add that it is like "the gift that keeps on giving" as the longer you follow this forum the more ideas you will come across over time. I have latched on to different ideas here, some good, some great, and of course some misfires. But overall it's been nothing but a welcome tool for learning and hoping in a pleasant and positive social context. Thanks to everybody who keeps coming back over and over, it is appreciated! Best, Hank
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1 ReactionThank 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!
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2 Reactionsthank you very much sunnyflower. I go through stages , mostly I feel numb and my mom and I get in lost of fights because she doesn't feel like I understand how serious her condition is , like I should be MORE upset. but my mom has been sick since I was very young and I feel bad but both of us are kind of tired of it all. It affects my quality of life and well I just don't know if I should take it more seriously and act like it is an emergency because a lot of times my mom talks about not wanting to "go on" anymore and asks if I would forgive her if she did have to "Go" I don't have kids yet and I want my mom to live to be a grandma, but I also don't want her to live with this quality of life she has right now:/. How do you build your faith?
I have a spiritual program, but don't feel directly connected with my higher power very often. Thanks
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3 Reactions@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
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6 Reactions@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?
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3 Reactions@johnbishop John, before I commit to have a SCS implanted I've been thinking a lot about what worked and what didn't, and I'm researching what might be done to reach the areas that didn't improve with the trial. I'm not an easy patient, and I'll ask the doctor about the possibility of installing one of the leads in a different--very damaged--area of my spine. Here's hoping...
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2 ReactionsMy 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.
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