New to neuropathy, terrified and seeking advice from you guys

It took me finding this group to help me accept things more. The doctors I had only offered pills to help cope, not one had advice (or time to give) on how to achieve maximum quality of life via exercise, supplements, ointments, diets, mindfulness etc. Zero from them! I didn’t know a single person with whatever I have, or friends of friends, and I know a lot of people. I thought I must have been really rare since there weren’t even any local support groups available for me. This group has shown me I’m not alone, and has been teaching me the “how to live with it”. There’s a wealth of knowledge from real experience here from caring people who are willing to share, so we can experiment and find solutions that may help our individual needs. It’s hard for me to completely accept “idiopathic “ and not still hope for a diagnosis (and of course a Cure for Neuropathy period), but I have accepted that I have to live with it and want to live life to the fullest possible for me. I’m willing to work for it; I do need some medicational help, but cannot be dopey as I already have balance issues🙃. This group has been my lifeline, thanks to all of our mentors, and for all of you in this forum who have been helping me!

@tom01255, I agree with @SusanEllen66. I think a good approach is to research, read and learn as much as you can about your condition and treatments that are available for the symptoms as there really is no cure for neuropathy but there are definitely things that help each of us get through the day (and night!).

Check out this discussion -- Have You Made Any Kind of Peace With Having Your Neuropathy?: https://connect.mayoclinic.org/discussion/have-you-made-any-kind-of-peace-with-having-your-neuropathy/

Hoping you find some relief soon...

Debbie - boy oh boy....you hit home with me in that you don't know anyone else on a personal level that has PN. None of my friends or any family members as well. You begin to think....is this that uncommon? Then, with knowledge thru other people on this website and support groups combined with time, you then realize as several mentors constantly bring up, you're not alone. The sharing of information I've found to be helpful because I feel in many cases, docs just don't know causes, they need a name so idiopathic becomes the label but folks like us who have this know what we're going thru. I feel there is a real cause for all of us with PN, it just hasn't been discovered so for now, share what we know is important and helpful. Best to all and remain positive!

You are absolutely right- your future is one of pain, discomfort, and less. But only YOU can choose how to respond to this certainty. Putting aside the medical journey you’ll be on, PN requires changes to daily life.
If your balance is off, you’ll have to adjust what you enjoy to be safe. I can no longer walk the medium-sized dog, as unexpected pulling may knock me off balance and into a fall. So, I walk by myself or if with the dog, another person holds the leash.
I can’t garden anymore with footing on uneven grass/surfaces, so I garden along the house sidewalks, narrow but long beds, from a stool.
You can travel wherever you like, but you’ll need to make adjustments- hiking rugged paths is out, but walking on paved paths and boardwalks, visiting waterfalls with steps and railings, biking on flat “rails to trails” will be fine. A kayak is out, but a canoe with a strong elbow-to-elbow assist from someone for the in and out is fine. I enjoyed a waterpark this summer, with the grandchildren, went on the high tube slides- just told the kid at the top “I need your help” and reached out my arm. I went to the seashore- chose the beach entrance that has heavy rubber mats on the sand, walked to the water with one hand on my daughter’s shoulder. Rented a bike and biked on the Boardwalk.
One last thought about the traveling- the ADA laws have made it so much easier for people using wheelchairs to enjoy travel. Accommodations for wheelchair use really help we with PN- in public bathrooms and in accessible hotel rooms, there are high toilets and grab bars. In local, state, and national parks, there are paved walkways and most often railings on steps, Disneyworld (I’m going in November) has places to sit and rest everywhere- low rock walls, benches, cafes. I’ll need to pace myself for distances, it I’ll be there.
It’s hard to face the “less”, I was a very active person, always on the go, but now I think in terms of that cliche: life throws you curveballs and you can either hit them back as hard as you can or let them smash you in the face. Wishing you the best- maybe start planning a trip!

I love this! When I look around my house, I see many adaptations I’ve made through the years. My cat litter boxes each have a small stool be them, positioned close to something I can grab on to when I stand up. Gardening is done with a stool, and I just bought a long-handled Fiskars pruner. I can lop from a standing position, then go back and pick up the branches on a good day! I just returned from a trip to visit my sons in NYC, which I do several times a year. We talked about the changes I’ve gone through.
All of these things are painful (I have fibromyalgia
AND SFN - doesn’t seem fair). But I have a large arsenal of medications, topical creams, devices (like my ultrasound device), and I realize this is my new life. I told a friend recently “the old Julie is gone. This is me now”.
Today I am contemplating swimming laps. Not something I enjoy, but the only remaining pain- free exercise for me. I know it will lead to increased pain from the waist down later today. I weigh these options every day, and the days of “ pushing myself” are infrequent.

....wish I could add something which would be of help but I have p.n.along with other issues (narrow angle glaucoma, previous radiationdamage to pelvis organs), tinnitus-hyperacusis-eustachian tube disfunction-ocular migraines etc. am not saying my pn is worse than others' in fact decide not to take meds when it happened in2016 but it's just on top of other illnesses makes it seem worse. I was given NOFLOX for a simple uti wihtout lab test dr in rush ready to go on vacation; no clean catch for urine etc. and even staff who did the urine test stick let it sit there for ages instead of 2 minutes - but i foolishly took the meds and did not realize that it had a black box warning, for those over 65 etc. etc. How lax of me.... ten days or so after finishing antibiotic walked across bedroom floor and could feel every fibre in carpet in fact hurt; then went to make breakfast and hands tingling and hurt and almost numb.. but i decline medication as so many have sensitivities to and toughing it out as I had read not as bad as many other people with it; but now with eustachian tube pain in ears, pressure in head and bowels, fecal incontinence again from too many antibiotics, ageing and a spray of depression and anxiety, I find it hard to be positive. A rushed prescription from dr., the pharmacist just saying dont take with milk and my not reading the 3 pages of info included with the meds; now I am criticized when i want to check out meds and side effects either from leaflet with meds or internet! Kudos and more to those with positive attitudes with an illness that cannot be cured, but I am not feeling positive about anything I have any more... just giving up and its affecting a previously good 40 yr marriage and relationships with adult children as always complaining about how awful I feel..but its true.

Wish I was stronger and could face my demons. J.

Water aerobics for me is fun. I put on a flotation belt every morning at 7AM and do all kinds of movements that help me deal with the side effects of chemo induced peripheral neuropathy. I hate swimming laps like you. Water aerobics helps greatly with range of motion and builds strength and allows me to get my heart rate up. You don’t have to support your weight in the pool, which is not the case with standing exercise programs. You can find lots of info on water aerobics on the internet.

Have you spoken with your physician about TENS? I've read that it has helped some users and the home units today are inexpensive. Best,

Sounds like idiopathic neuropathy which I believe is genetic and very hard to treat. My neuropathy from cancer treatments started in my feet and has spread through my body for 10 years. Doctor friend of mine has idiopathic neuropathy and takes gabopentin which gives him some relief. I would talk to your primary care physician who can prescribe you something to try.

Any other methods to decrease the pain anyone else is using? My Dad is try inferred and seeing slight improvements. I’m taking gabapentin, 13 per day now for feet and legs. My Dr tells me it’s genetic and not cure. Pain in feet, numbness in hands, loss of balance, very tight in all lower muscles so I go to a place called stretch zone which helps get me fully stretched out to decrease the pain. Doctors have no answer as to why my muscles in feet, legs, and hamstrings are so tight.