Living with Neuropathy - Welcome to the group

@faithwalker007 I overdid some menial tasks this am so now am ramping up to a 9 in pain. Stupid my own fault. So sifting through emails and was looking at job postings and denigrating myself for jobs I’ll never be able to have again but that I used to be able to. It’s like mourning a death that never stops. Going down a downward spiral and I happened upon your response. I am shedding tears and some pain along with it. Thank you for reading and responding. Your family and friends are lucky indeed.

I have epilepsy and I’ve had seizure activity since I was 14 although my neurologist then never told my parents. I discovered it when I started professional pharmacy school (the first year when I was a junior at university at Laramie). I had my first grand mal seizure in our kitchen and my 4 year old son found me after hearing my head hit the counter and my land on the floor and begin seizing. He then ran to my husband and he called 911.
I barely passed pharmacy school after that because of all the experimentation and reactions to seizure medications over the course of the next two years. But I did it!

@bustrbrwn22
Jen, I hear you. You are suffering like pretty much everyone here is, it's crazy. This neuropathy discussion is like visiting a different planet in some far away star system where people live a completely different existence than what most earthlings can relate to. Most people have NO IDEA of this way of living. Linda just felt a little bit of energy this morning and decided she was going to go out with me to Best Buy and maybe Target. And we did! We went to Best Buy and Linda was almost like her old self. Then we stopped at Target, a mistake in retrospect. By then she had done too much but didn't really realize it or at least did not want to stop being normal. Then we came home. Her legs almost didn't work from the car into the condo. I'd never seen her be so immobile before when we were out, I practically had to carry her. Such is life for the outer space people. This is living in a very different sense, and where very small achievements become astounding accomplishments. I'm still amazed we went out, she and I. It's VERY unusual for us this past almost 2 years.

Jen, just know it's a weird and sometimes awful life you and Linda are now faced with. But don't give up. Do not ever give up. Look at each day as an accomplishment that you got through and give yourself a major gold star. You are incredible and you and Linda and Renee and Lori and Chris and all of you other great people here, are my heroes! Best, Hank

Hello @fumi, Welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy and walking is a little difficult for me. I have an exercise bike that I use several times a day and I also try to do a little walking (emphasis on little for me due to back pain). I'm not sure exercise will slow down the progression but I think it helps you keep up your strength and flexibility so that you are able to keep moving. Balance is also another issue I have so I make sure I get up slowly and wait a few seconds before starting to walk. There are a couple of other discussions you might find helpful.

- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Do you enjoy walking?

Hi @fumi I would also like to welcome you. I agree with John. I have neuropathy and balance issues. Exercise is a benefit for me. It improves circulation and can help with nerve regeneration. It is a slow process but I think exercise can be helpful for neuropathy. Ask your provider if exercise is OK for you.

@bustrbrwn22
Jen, I hear you. You are suffering like pretty much everyone here is, it's crazy. This neuropathy discussion is like visiting a different planet in some far away star system where people live a completely different existence than what most earthlings can relate to. Most people have NO IDEA of this way of living. Linda just felt a little bit of energy this morning and decided she was going to go out with me to Best Buy and maybe Target. And we did! We went to Best Buy and Linda was almost like her old self. Then we stopped at Target, a mistake in retrospect. By then she had done too much but didn't really realize it or at least did not want to stop being normal. Then we came home. Her legs almost didn't work from the car into the condo. I'd never seen her be so immobile before when we were out, I practically had to carry her. Such is life for the outer space people. This is living in a very different sense, and where very small achievements become astounding accomplishments. I'm still amazed we went out, she and I. It's VERY unusual for us this past almost 2 years.

Jen, just know it's a weird and sometimes awful life you and Linda are now faced with. But don't give up. Do not ever give up. Look at each day as an accomplishment that you got through and give yourself a major gold star. You are incredible and you and Linda and Renee and Lori and Chris and all of you other great people here, are my heroes! Best, Hank

@faithwalker007 I overdid some menial tasks this am so now am ramping up to a 9 in pain. Stupid my own fault. So sifting through emails and was looking at job postings and denigrating myself for jobs I’ll never be able to have again but that I used to be able to. It’s like mourning a death that never stops. Going down a downward spiral and I happened upon your response. I am shedding tears and some pain along with it. Thank you for reading and responding. Your family and friends are lucky indeed.

@bustrbrwn22
Jen, I hear you. You are suffering like pretty much everyone here is, it's crazy. This neuropathy discussion is like visiting a different planet in some far away star system where people live a completely different existence than what most earthlings can relate to. Most people have NO IDEA of this way of living. Linda just felt a little bit of energy this morning and decided she was going to go out with me to Best Buy and maybe Target. And we did! We went to Best Buy and Linda was almost like her old self. Then we stopped at Target, a mistake in retrospect. By then she had done too much but didn't really realize it or at least did not want to stop being normal. Then we came home. Her legs almost didn't work from the car into the condo. I'd never seen her be so immobile before when we were out, I practically had to carry her. Such is life for the outer space people. This is living in a very different sense, and where very small achievements become astounding accomplishments. I'm still amazed we went out, she and I. It's VERY unusual for us this past almost 2 years.

Jen, just know it's a weird and sometimes awful life you and Linda are now faced with. But don't give up. Do not ever give up. Look at each day as an accomplishment that you got through and give yourself a major gold star. You are incredible and you and Linda and Renee and Lori and Chris and all of you other great people here, are my heroes! Best, Hank

Every once in a while I revisit my old life. I think of what and where I’d be if I’d never met this thing called CRPS. Would I still be a pharmacy manager? Would we still be in Wyoming? Would I be the caregiver of my husband as I’d always been or would we finally have made it to the Mayo or Johns Hopkins to figure out what was happening to him? Or would we still be exactly where we are today?
I don’t spend much time in the past or the future because I usually begin to slip into a deep melancholy. And in that moment, I’m pulled right back into the present by what I call my Life Verse, Luke 12:34.
This verse has been my Life Verse since my 18th Christmas, the Christmas after I became a Christian.
The passage of Luke 12:22-34 has been our marriage’s mantra, so to speak, for the last 31 years (I married two days before my 20th birthday.)
No matter what happens at any time in this life, or pain we must suffer, God is with us and will provide for us— no matter the need.
The future is the future and He tells me rather specifically not to dwell on it. It’s taken me awhile and I still slip up, but I’ve learned, and now I know why. I do what I’m told! Lol
I’ve also discovered that evidently He doesn’t believe curing my pain is a “need right now. That’s not saying that “I” don’t but it’s still here and I’ve asked for that a lot!
As many of y’all know, I’m one of the few in the world with a rare disease, rare allergies, multiple interactions with disease states and drugs which limit treatment, and live in a very rural area with little access to specialty healthcare. Leave it to me!
But I do know God is providing for every need I have otherwise. What, you may ask?
1. An XL fur-lined, double-belted, leather mobility support harness w/ 6 ft handle for my service dog Bo. Cost w/shipping: $113 (usual pricing avgs $155-$550)
2. A van to travel around town and out-of-town comfortably and eliminate the need of having to “climb” in and out of our other vehicles (Jeep Wrangler and Work Pickup). $4400 cash (Minivans average: used $3500-$20,000)

Other needs have been provided surprisingly and by planning with our budget. Both ways, He fulfills those needs. Many needs that we know about and can plan for (like that $7000 neurology bill) and others we have no idea about until they slap us in the face (like that $2000 radiology bill) and are scrambling to figure out how we can tackle!

Do I want the pain to go away? Of course, but I trust God to take it away when we can no longer bear it together.

I hope this makes sense because I didn’t mean write so much! Lol

Either way, know this, you’re not in this fight alone and whatever you need, He will provide. All you have to do is ask.

And that’s ditto for me too. 🐹👩🏻