Living with Neuropathy - Welcome to the group

Thanks, I am Beth
I was formerly a Parent Educator. I worked with people that had open court cases, and they were additionally mentally disabled. My husband and I also had a group home. I no longer work due to this condition. I have had this since around 2005. I formely enjoyed skiing, hanging out in the mountains, reading a good book, and riding my bike. I no longer do these things as it is just too difficult.
I find that I am often exhausted, I took a sleeping test and they said I needed to use a CPap machine along with oxygen. Do you think it has anything to do with having neuropathy? I should add that I had Sepsis prior to getting neuropathy. After that life-threatening disease, it left me with neuropathy, low oxygen levels, balance issues, and weakness as well as tremendous bouts of pain. Has anyone ever gotten significally better from this condition, without medical intervention? They tell me that it isn't possible without medication, but I thought I would ask anyway. I am on quite a bit of medicine, and I have a pain implant. They all help but I would like to look forward to doing some of my former activities again. Thanks for any input it is appreciatated.

@crisis1152 - Reminds me of an old Johnny Cash song "I've Been Everywhere Man" - Except it would be I've tried everything man.😊 I haven't tried that many but have tried the tens and looked into a few of the other popular cure your neuropathy advertising. Fortunately I only have numbness with my neuropathy - my story and some of our other members experiences are in the previous discussion I shared in my first post above - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Couple of sites you might find helpful:
- Beware Expensive Treatments of Peripheral Neuropathy: https://www.foundationforpn.org/2016/04/11/5179/
- Living Well with PN: https://www.foundationforpn.org/living-well/
- Neuropathy Commons: https://neuropathycommons.org/

You mentioned you a looking at the Calmare Scrambler Therapy in the future. There is a discussion you might want to read through here:
- Calmare (scrambler) Therapy anyone?: https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

Beth, all I can say from my disability is that whether you do or not does not mean life is over or less. What it does mean is that life is different. But was your life before, when you were an Educator, the same as when you were a child romping through life? No, it was different. Now you have new issues on your mind, concerns to deal with just like the Educator had over the child.
Do we want the pain, the fatigue? No, but it comes with the challenges. And the joy if we make the effort to find that as well.
I’ll be praying that you find it all including the mission.

@bethunger I think you speak for a lot of us. We would all like to get back to doing some of our former activities. I've found that is not really possible for me so I try to find new activities that I can do and enjoy. I've had idiopathic small fiber peripheral neuropathy for 20+ years that I know of but only recently had the diagnosis in 2016. I also have obstructive sleep apnea which was diagnosed a couple of years ago but I'm pretty sure I've had the symptoms most of my adult life as I have always been a big time snorer. I've read that not all people who snore have obstructive sleep apnea but most people who have sleep apnea snore. I did find some information that might shed some light on your question does sleep apnea have anything to do with neuropathy.

Obstructive sleep apnoea: an underestimated cause of peripheral neuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117642/

I think it takes about a year of steadily using a CPAP before you really reap the benefits of not being exhausted often. Have you thought about looking into something like the Mayo Clinic Pain Rehabilitation Center to see if it would help with the pain? - https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Hi All, I just happened to notice that my last post was number 1000. It made me think about this past year since Jan. '20 when I stumbled upon Connect as I desperately searched for ideas to help my wife Linda's neuropathy (I am her humble research assistant), and started reading and interacting with others. My experience here has been very helpful to both myself and Linda. I have learned a little bit about a whole lot of things (emphasis on "little" so take all my advice with one big grain of salt always!). Being here has made me aware of a lot. Reading and participating in conversation here has made me think, not just about pain and health but also about morality and ethics, attitudes and social mores of today's world, as well as about myself. I just want to say that being on Connect has been a big help to us and I want to say thanks to Mayo for sponsoring this site, as well as the people like Colleen Young and others who do such a thoroughly professional job overseeing Connect, and all the marvelous people who come here to both help and be helped, with advice and support.

OK, that is off my chest. And this is post is 1001. Best, Hank

Hi All, I just happened to notice that my last post was number 1000. It made me think about this past year since Jan. '20 when I stumbled upon Connect as I desperately searched for ideas to help my wife Linda's neuropathy (I am her humble research assistant), and started reading and interacting with others. My experience here has been very helpful to both myself and Linda. I have learned a little bit about a whole lot of things (emphasis on "little" so take all my advice with one big grain of salt always!). Being here has made me aware of a lot. Reading and participating in conversation here has made me think, not just about pain and health but also about morality and ethics, attitudes and social mores of today's world, as well as about myself. I just want to say that being on Connect has been a big help to us and I want to say thanks to Mayo for sponsoring this site, as well as the people like Colleen Young and others who do such a thoroughly professional job overseeing Connect, and all the marvelous people who come here to both help and be helped, with advice and support.

OK, that is off my chest. And this is post is 1001. Best, Hank

@jesfactsmon I'm grateful to have made your acquaintance over the past year. I've never had many friends, so it means a lot to me to have a virtual friend. Thanks, Hank.

Jim

@sunnyflower
Be cautious using a walker. I had one and trying to stand up and fell sideways and split my head on a table. When I tried to get up I fell again. It looked like a massacre took place in my living room. I suppose I felt overly confident with the walker. So be careful.
Take care,
Jake

Hi Sunny. Thank you. I feel I am fortunate to have experienced life in both worlds. It has made me truly appreciate where I am presently. I had the opportunity when I was younger to bond with elderly residents because I knew the old way of life as they had experienced it. Having common grounds with them gave me the interest to listen and ask questions. In return it raised their spirit to share their life with me since I had a good understanding.
My husband does not like eating vegetables as much as I do. He is not a big fan but he will eat baby spinach in a salad. Raw form will have the most nutrients. What I do is mix baby spinach with a spring mix of greens to make a salad. I then add whatever I have on hand like cucumber, mini pepper, tomato, red onion, fresh mushroom, green olives, avocado, and pepperoncini. For a salad dressing I just simply use extra virgin olive oil and vinegar. There are different types of vinegars depending on your taste. I vary between balsamic, apple cider, and red wine. I season my salad with dried oregano, salt and black pepper, and garlic powder. Make sure to toss well. We have this at least twice a week. I also eat boiled greens with olive oil, lemon juice, and salt several times each week. I use whatever greens are available during the year. You’re welcome. Best wishes. Toni