Living with Neuropathy - Welcome to the group

@johnbishop

I am Ken Lasbury with peripheral neuropathy idiopathic and numbness only, in a walker although I was riding 10 miles a day on my bike months ago for years but I fell too often getting on and off the bike. I am no longer riding.

A year ago I underwent stem cell injections two times and spent $20,000 without benefit. I have now begun hyperbaric therapy and have paid for 20 sessions for the next month. I have completed four sessions and my condition is worse although I read that it can happen and temporarily. I am also at a point where I am installing ramps for a wheelchair. I am 78 years old and a former executive at Scripps Research and UCLA school of medicine. Hbot is a wild card but I’m willing to try anything at this point. I’m looking for advice.

@kenfromranchomirage
Personally, I would save my money and being disappointed rather than chasing cures that don't exist. Just my 2 cents. But at least I'm not regretting being out 10's of thousands of dollars like some members here with no relief.
I also rode a bike but gave it away. I too fell off and couldn't ride it straight, going into the path of cars. I've been thinking about a three or four wheel bike.
I take B-complex and get B-12 injections monthly since I take two first generation enzyme inducing anticonvulsants which deplete B-6, 12, and folate. But it doesn't change my neuropathy. The only time my neuropathy improved was when I was using the fentanyl patch, again for other reasons, but it did help.
Take care,
Jake

Hi Ken @kenfromranchomirage, I do think stem cells offer a lot of hope. But where there is hope, there is also hype and charlatans. Just saw this recently and completely agree with it.
-- FDA must regulate stem cell therapies to mitigate risks to patients and the public:
https://www.pnas.org/doi/10.1073/pnas.2508586123
I'm not sure that Hyperbaric oxygen therapy (HBOT) for neuropathy is ready for prime time yet either although there is some evidence it may help.
"HBOT has been shown to have antinociceptive and analgesic effects in animal models of inflammatory, neuropathic, and chronic pain. Human studies demonstrated beneficial effects of HBOT in improving clinical outcomes such as pain scores, pain-related symptoms, and quality of life. A systematic methodology of HBOT application is necessary to confirm its safety and efficacy."
-- 2021 - Mechanistic Rationale and Clinical Efficacy of Hyperbaric Oxygen Therapy in Chronic Neuropathic Pain: An Evidence-Based Narrative Review: https://pmc.ncbi.nlm.nih.gov/articles/PMC8084668/

I do understand the drive to find something that helps this ugly condition that can be devasting for a lot of us. What helps me is to try and keep learning as much as I can about the latest treatments that may provide some relief which is why I like the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/learn-about-the-latest-in-peripheral-nerve-research/

Hello, new here.

I'm looking for any advice on how to minimize pain and the triggers that cause it. I'd also be interested in finding anyone that suffers in a similar way to share ideas, as I've not managed to find anyone as yet.

I get random stabbing electric pain in my feet that typically lasts for 3 hours once triggered. If I can avoid a trigger, I can go days or even weeks without any pain. A few details...

-The pain can range from an annoying tickle to a severe stabbing pain that can put you on the floor.
-The worse the pain, the longer it takes to go away. This can range from a few minutes to over 3 hours.
-The pain is nearly always only in one foot at a time.
-The pain can be 'erased' by tickling/scratching the area affected, but returns within seconds if you stop.
-It slowly goes away, but can instantly return if aggravated (by standing etc.).
-There are also other types of pain, such as cramping and twitching (in the feet).
-Hot water can cause additional pain and internal (inaccessible) itching up the legs which can last for a few days. I've stopped this happening by having colder showers.

I've had this for around 10 years now. It started as an annoying tickle when at work or driving and has slowly got worse over time. The main trigger I have is sitting down. This started off a bit random but now I can't sit in a chair for more than a few seconds without triggering it. I therefore don't drive anymore and have no chance of flying.

I've found that I can sometimes get away with sitting on the edge of a seat, so the back of my thighs aren't touching it, but it's still not 100%. Sitting on a hard surface is also far better than a soft one. Anything soft, and it'll trigger. I can, thankfully, sit on a bed with my legs stretched out. It's not 100% but if I change position on first feeling pain, I can usually avoid a trigger. Sitting with my legs pulled in to one side is the safest way to avoid a trigger, but can be quite uncomfortable. This is now the only way I can ride in a car (as a passenger, of course).

I've also found that moving/exercising/changing position regularly is the best way to get through the day without a trigger. I'm lucky in that I can work from home on a computer, but I have to make sure I take short breaks regularly or I'll almost certainly trigger later in the day.

Standing for too long can also trigger it, as can sleeping on my back. I often wake up with pain after doing so unwittingly.

In the last couple of weeks, however, I've started getting triggers when standing up. This is obviously very worrying as not being able to sit or stand is a bit of a problem. I could handle not sitting, but now simple things like cooking or showering are proving to be difficult. I also don't want to leave the house as when a trigger happens, the only way of reducing the pain is to sit on the bed and tickle/scratch my feet for 3 hours. Not something you can do in public, unfortunately. The level of pain is too high to tolerate, so staying at home is the only option.

About me...

-Type 2 diabetic (20 years) that wasn't managed well for a long time (It is better now).
-Drink too much.
-Have tried Duloxetine and Amitriptyline, but got nasty side effects very quickly from both.
-Currently taking 2 x 75mg of Pregabalin a day. This really helps with the cramps/twitches (although they were never painful enough to bother me) as well as reducing the number of 'light' triggers. It doesn't stop the nasty ones unfortunately; maybe a bigger does will though.

Apologies for the book. Any comments/suggestions welcome!

Thanks!

Hello @bubbly4me, Welcome to Connect. I have neuropathy also but fortunately (if you can call it that) I only have numbness and some tingling in my feet and legs. You are not alone with your stabbing electrical type pain in your legs though along with your other symptoms and there are many members and other discussions you might find helpful. I did a search of Connect on "stabbing electrical pain in my feet" and found related discussions and comments that you might find helpful. Here's a search link that lists the discussions and comments - https://connect.mayoclinic.org/search/discussions/.

The pain sounds a lot like a friend of mine who had sciatica due to spine issues. Fortunately surgery fixed the problem for him. Here's some information that describes possible causes/triggers:
-- What can cause nerve pain in the foot?: https://www.medicalnewstoday.com/articles/nerve-pain-in-foot

Have you discussed the symptoms with your doctor or a neurologist?

Hello, and thanks for links - I will check those out shortly.

Yes, I've seen a neurologist and had an MRI of the lower back as well as conduction tests etc. He said it was Diabetic Neuropathy. It makes sense as I've been diabetic for many years and didn't manage it well at first. The only part I don't understand is why it's nearly always only in one foot at a time.

@bubbly4me another great resource is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/. They have a YouTube channel where they keep all of their webinars that are great for learning more about the condition and what helps. Here's a search of their YouTube channel showing webinar videos for diabetic neuropathy - https://www.youtube.com/@foundationforperipheralneu4122/search

Hi,
I am also new to this group. I had a hip replacement 1 year ago. Has been a very difficult time. Still need a cane to walk as my glute muscle doesn’t want to work even with much physio and exercise. Still have pain.
Now Inhave developed peripheral neuropathy in both legs from knees down.
Also at times I have numbness in lips. Lots of tests down for no clear results of cause.
Anyone else had the lip numbness. My family Dr. tells me it is from anxiety??
Q thanks

@johnbishop
Thanks again for that, I'll take a look.

@lidestan1

Dont let your doctor say its just anxiety. I developed motility/digestion and constipation issues sometime after diagnosed neuropathy. So I went to see a Gastro doctor and after seeing me for just 10 mins told me its just anxiety that Im not having bowel movements for days. Thing is I had severe anxiety for years before neuropathy and never had stomache issues until neuropathy.

I told him such and he replied that hes going to let my primary what he thinks - that its anxiety. Thats within 10 mins and never meeting me before. He even questioned me having neuropathy despite having it confirmed by EMG.

I always heard of doctors pulling the its just anxiety card but had never experienced it myself until recently.

So from what I gather saying its just anxiety is bullcrap lazy excuse from a doctor.