Unbearable Neuropathy

I've changed the way I get around I have to use this Cane. I have to learn how to effectively use it. I try hard to walk in the early morning hours. I make it. After I get done with this I am exhausted. This is some of what's going on. Pain and swelling, very nasty.✨Take care and God bless 💗

Hello, balance is my major issue and I don't look forward to moving around,however I manage somehow with the kindness of some friends. I really don't understand why. Yeah, I think I will rejoice in my struggles, and keep moving forward. Thank you 💕 God bless.

Be kind and have courage.

I understand! I've always had back problems, but remained active. But I fell down the stairs from the second floor, had back surgery, then fell flat on my back 5 months after the surgery. Never out of pain. Can't stand up straight. Even the cane doesn't get me very far. I can do some grocery shopping because I use the cart for support. It's the right height to enable me to straighten up and hold onto it. I have found that the more I make myself endure the pain I'm building some strength. Not easy and very discouraging. Of course it has completely changed my life and not for the better. I need to have another surgery but the recovery takes at least 18 months. What if I fall again before it heals? It's scary. Having to use a cane makes a person feel useless and old. Like you, I have a pain mgmt doctor.
I think the best thing for me is to get involved in a senior citizen group. They play cards, games and more activities. Right now , don't have the energy or interest. My youngest daughter and I lived together about 3 hours away from my other children.
But she was diagnosed with a Glioblastoma brain tumor in December and passed away on April 6th 2023. I'm still reeling from the shock and grief. Now the neuropathy is starting . My husband was diabetic and he suffered unbearably with it.
So it does frighten me. I do have an appointment scheduled with a neurologist for November. Hopefully he can help slow it down.
I know that I'm rambling, but know that I emphasize with you and that you are not alone.

I was poisoned by Gadolinium from an injection and immediately develope PN. No coincidence I had all the heavy metal symptoms and am now stuck with this diagnosis. It should be taken off the market. Heavy metals do not belong in biological systems like ours or our environment. Dirty little secret indeed.

My neurologist has recommended Rituximib infusions for my neuropathy.
I went thru several rounds of IVIG in past few years with no improvement.
I was supposed to start new med but my insurance won’t approve it because I hadn’t done plasma exchange.
Any one done plasmaphoresis and what’s involved?
Apparantly the criteria for Rituximib is steroids, IVIG which I did, and plasma exchange which is the only one I hadn’t done yet.

Hi, Gina5009 ~ I can't even count the number of times this has happened to me, either in the kitchen or in the bathroom, the only two rooms not carpeted. I really have to concentrate on picking my feet up on the "bare" floors where I used to be able to slide as you had expected to do, and especially when turning as @ ray@666 mentioned. It's frustrating to have to remember this changed way of moving about. I thank God that my downsized home is small enough that if I lose my bearings there is a wall or furniture to land against. I am counting my blessings every day that I am still living independently and able to take care of myself! 😊

Good morning!

"It's frustrating to have to remember this changed way of moving about."

I'm reminded of this every day. You may know from some of my other posts that my partner and I have kept the two houses we each had before we met. I use my house as a daytime "man cave" (yuck! I don't like that expression, but … ), but she and I are together at her house weekday evenings and all day weekends. (We tell our friends lots of time apart is what keeps us sane. LOL) But the point of my telling you this is my partner's house is all polished hardwood floors. (Mine is carpeted.) Her floors are beautiful – but, as a guy with PN, I have had to learn a new way of walking! My "new" way can be downright comical – if it weren't so %$&*# frustrating: second-by-second vigilance going from chair to chair, room to room, sofa to frig so that I don't go crashing to Earth (or rather crashing to the hardwood floors). I wear non-slip socks when I'm at my partner's house. Thank God for non-slip socks!

Cheers!
Ray (@ray666)

I get nothing from neurologist but gabapentin and more of it.
I’m trying to get second opinion to be sure of disease but no luck yet.
Your feet will only get worse I fear
Horace

I've been very disorganized and confusion when I have to pick up My feet pace. I've adopted a new mindset, Slow and deliberate. Everyone seems to not understand this. I have to safeguard my wellbeing. I'm trying to move into a smaller place on one floor so I don't have to struggle and hurt less when I move. God bless you all and don't give up. I'm saying this to me as well as all of us.