Living with Neuropathy - Welcome to the group

I mean I literally can barely stand when I'm preparing food Not that I can't stand it as in I don't like it bc I do like to LOL!

Is it difficult for you to walk indoors? Will a walker help you? Some come with a seat. You can use the walker to stand. Sorry to hear are having difficulty standing. Do you have a caregiver who can help you? I do the best I can due to my physical disability. I couldn’t stand or walk at first. It took time to strengthen my muscle and to learn to walk again. I still have the dizziness which limits my mobility. Push yourself to learn but be careful not to fall. It was not easy for me because the dizziness and motion sickness made me feel awful. I did what I could. I try to figure out ways to make tasks easier on me.

@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

Thank you so much for the warm welcome. I have felt very alone in this disease, so it is so helpful to read what others have done to increase their functioning and cope with this condition. I hope I can learn and contribute as I learn more about Neuropathy.

Sunny, you can also use a wheelchair. It may be safer to use your arms to rotate the wheels and move around. You have worked in the medical field for 20 years. I am sure you will find the best way for you. Physical therapy taught me to use a quad cane for outdoors to manage uneven surfaces. I also have a transport chair for long distances to manage trails or events like fairs.

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.

I can relate to that. I can barely stand for two minutes. I can’t sit, lie down, or walk. My dog is the one who gives things for me. I have a cane, walker, and scooter. I have a chair I sleep in. All I want is to have one day without pain and am still dreaming about it happening.
I’ll wait for it or not but either way, I’ll survive.

@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

@bethunger
Hi Beth, I do understand what you mean about missing former abilities and pursuits that are now not possible. My wife Linda has debilitating PN and she is very fatigued more often than not. She, and I as her only source of care, both lead a lifestyle that has been seriously curtailed. I particularly miss our little trips/vacations. Because of our current lifestyle, adjusting to covid lockdowns was a piece of cake.

Anyway, I also wanted to tell you that Linda had sleep apnea for many years, I would estimate at least 30 years during our marriage. She would always say she woke up more tired in the morning than when she went to bed. Due to our ignorance we did not think about her tiredness being due to a sleep disturbance. I knew she snored and often gasped for breath while sleeping but did not realize it could be so bad for her as to be life threatening. Anyway, after we realized (finally) that something needed to be done for her, she tried a number of things (e.g. breathe rite strips, etc.), none of which helped. She resisted a cpap machine and also did not seek medical advice, just figuring she'd lived with it this long, just keep on doing so. Finally, one of us got the bright idea to have her try to elevate her upper body using a sleep wedge pillow. If you do not know what I mean, here is an example from Amazon (not the kind she got but looks very similar): https://www.amazon.com/Pillow-Stylish-Jacquard-Sleeping-Heartburn/dp/B082XKFYLJ/ref=sr_1_9?dchild=1&keywords=sleep+wedge&qid=1613053384&sr=8-9

As soon as she started using it (about 2 years ago) her sleep apnea completely disappeared. She has been getting great sleep ever since (except for occasional insomnia, sometimes PN related). I can tell her energy improved generally after this change was implemented. Perhaps you might want to give a wedge a try, if you can stand sleeping being slightly elevated. Linda has slept on her back since her 2014 mastectomy so it was not a difficult transition, as it might be for a side sleeper. Anyway, thought I'd pass this along for what it's worth. Best of luck, Hank

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.