New to neuropathy, terrified and seeking advice from you guys

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!

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.

Welcome @mikeconnors1, There are many causes for neuropathy. I'm not sure if you have done any reading or research on the condition but here are a couple of sites that really helped me early on when I was diagnosed with idiopathic small fiber peripheral neuropathy.

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You mentioned going to a place called the stretch zone has helped decrease your pain. There is a discussion on Myofascial Release Therapy (MFR) which has helped others that you might want to read through - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There are also other discussions where members have shared there experience with what has helped them.
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you able to share a little more about your diagnosis?

@johnbishop Yes he labeled it neuropathy of the extremities (small fiber). Told me it was likely genetic as my dad has it though not nearly as pronounced for him. He feels it only in his feet. Dr offered to find a testing clinic be able to label the exact neuropathy in hopes that progress could be made on a cure. My onset was about 4 years ago but it seems to be getting worse much quicker now. Thank you for the resources I will dive in now. Has any one reported consistently tight muscles in the feet, calves and hamstrings in the forum. It’s odd because once stretched out the symptoms are much better but never feel like I’m fully stretched out so I’m wondering if this is more related to my active exercise routine rather than the neuropathy. Thanks again.

@johnbishop Yes he labeled it neuropathy of the extremities (small fiber). Told me it was likely genetic as my dad has it though not nearly as pronounced for him. He feels it only in his feet. Dr offered to find a testing clinic be able to label the exact neuropathy in hopes that progress could be made on a cure. My onset was about 4 years ago but it seems to be getting worse much quicker now. Thank you for the resources I will dive in now. Has any one reported consistently tight muscles in the feet, calves and hamstrings in the forum. It’s odd because once stretched out the symptoms are much better but never feel like I’m fully stretched out so I’m wondering if this is more related to my active exercise routine rather than the neuropathy. Thanks again.

Hi @mikeconnors1
I am a bit busy at the moment, I will write a longer post, with regards to muscles and tightness. My short answer is for me they are related. I will mention what i am doing for it.

JFN

....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.