Living with Neuropathy - Welcome to the group

@artscaping Hello Chris. I'm recouping from 3 injection's 2days ago. Rcvd a shot in my sacrum, & Lwr lumbar left side epidurals to ease my sciatica it runs thru my back of butt cheek's & they help me ease my tailbone cracked from my knee buckling & falling down.
It's been a rough year for most of us. But we must try to live somehow. I use Palmer's whipped cocoa butter & about 3mg of 1:20 THC/CBD Cannabis oil & Frankincense oil for topical use about 3-5 drops I mix it all in with a tiny little baby spoon & I keep it in a glass jar in my refrigerator. A little dab helps releive my chronic knee pain & my neuropathy in my hands before bedtime. I have a Friend who told me to try tea tree oil for topical use of skin issue's. It helped. I sometimes use Spearmint or Lavander essential oil in my CBD & cocoa butter mixture they are great for relaxation & help soothe the mind so we can sleep a few hours more. I know 2well what it feels like to be awake & stressed out from 1type of pain or another. I hope you have a beautiful day & I hope someone else gets rid of their pains from my knowledge & experience.
Hemp oil did absolutely nothing for me except for losing $$.
If we all were able to take the same products it would be easy, but at the same time impossible. I take a different dosage of Blood pressure medication than my Husband but we both end up achieving the same outcome to lower our blood pressure. So we are all different & in many ways so is how medication is going to get the result we want. All I know is it's been a Great experience to learn from everyone about different things that work for our mind, soul & body. I'm thankful for being alive.
Happy Holidays.
Mimi

@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've been researching thiamine for my wife's health condition and when I read about your epilepsy it brought to mind thiamine and vitamin D needing sufficient magnesium to make them bioactive. The nootopics link includes information on forms of thiamine able to cross the blood/brain barrier.
https://somepomed.org/articulos/contents/mobipreview.htm?0/63/1022
https://nootropicsexpert.com/vitamin-b1-thiamine/
https://www.epilepsy.com/article/2017/10/vitamin-d-and-seizure-control
https://www.krispin.com/magnes.html

@bustrbrwn22 @jesfactsmon You guys are just the best. Jen, please, please, don't look down at yourself. Life is about change, and please, just do what you can each day, and praise yourself. Hank, I am so glad that Linda and you got out a bit, but man, do I know the consequences. I have learned to not do anything out for more than an hour or so, or I will pay for it later. I still think it is wonderful that you managed to get out. This really is like being on another planet. No one can imagine how difficult it is, unless they experience first hand. My love to both of you, Lori

Yes, I enjoy staggering but the potential for a fall haunts me. Thank for your links, especially the first one. Most of the balance links focus on other maladies that--fortunately--i don't have . . . or don't have yet.

Thanks, although having moved a couple of thousand miles just before the COVID door slammed, I do not have "providers."

@jesfactsmon Hank, I am so happy for you and Linda! How wonderful it must have been for her, and you too!

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. 🐹👩🏻

Wow Hank, I can so relate! First of all I want to say yay that Linda was able to go with you! You both must have felt so good just to get out of the house on an errand or two!

Yesterday my grandson took me to Hobby Lobby. I was elated to be out of the house! But my legs wouldn't cooperate with me and I could barely walk.

I had been so excited to look around the store but we had to leave early. The pain and weakness was unbearable!

I was bummed out (gross understatement!) but giving thanks for the beautiful day and time although short, spent with my sweet grandson.

I just wanted to say that I get it. Please let Linda know.

Thinking of you two and wishing you warm wishes. I wish I could make it better for you two!

Blessings, Sunnyflower. 🙏😊

I now use a transport chair when I need to go to a store, get groceries, go for an appointment -- a transport chair is smaller then a wheel chair, not so heavy -- you can either push along with your feet, or have someone push you -- it folds for putting into a vehicle -- check on amazon or any place that sells medical supplies -- be sure to get one with the larger (12") wheels in the back-- this has been a life saver for me, both physically, mentally (and emotionally being able to get out) -- please swallow your pride and look into this option