Living with Neuropathy - Welcome to the group

My name is Charlotte, and I have been with a disease that is causing my neoraphy issue from my waist, to my feet. the flare up sometimes are unbearable.

Good evening @faust73 and thanks for the introduction, John. I am happy to share my experiences with you. At this point my quality of life is quite dependent on two components..........MFR and Medical Cannabis. I have two MFR therapists attending both of my weekly sessions. As the condition progresses with increased pain and discomfort, it is not possible for me to go more than 3 days without treatment. Do you have numbness and tingling? I especially have tingles in my feet and would not be able to drive without MFR twice a week. My diagnosis of Small Fiber Neuropathy was impacted by trauma injuries and surgical repair including fusions in the lumbar and surgical spine.

Have you recovred from your vaccine? I had two vaccines and a booster from Pfizer without any after effects. When you say nothing helps....that covers a lot of territory. Most of us find some level of something that makes life a little easier. Often, folks tend to not take enough of a medication or spend enough time in treatment.

How can I help you at this point? What do you need to know about medical cannabis and /or MFR?

May you be free of suffering and the causes of suffering.
Chris

My name is Charlotte, and I have been with a disease that is causing my neoraphy issue from my waist, to my feet. the flare up sometimes are unbearable.

If it’s legal i your state give it a try, some people get decent relief,

Hi my name is Diane and I have autonomic small fiber neuropathy. I started having motility issues since 2014. I was recently diagnosed with mild esophageal dysmotility. Has anyone else ever been diagnosed with this and if so what was the treatment.

Morning Chris I never had neuropathy before until I got my Pfizer COVID shots but getting the booster really got the neuropathy to be much more intense. My symptoms are bottom of my feet go numb my legs burn - tingling and pins and needles. I take diazepam for the nerves and it helps some but wears off quickly as seeing I can only take 2 pills a day. I haven't been diagnosed by a doctor per say going to see a new neurologist end of January. I go for pain management and between having issues with my back and the neuropathy (which the Pain Management told me I have) it's been a nightmare for me. Having all these issues have caused me to not be able to do anything can't go for long walks with my pups and an effort sometimes just to function. I've been working out over 30 years I have a full gym in my house but some of the machines I can't use because it causes the neuropathy to increase. I'm going for physical therapy this month and hope that will help. As far as cannabis I know people who have highly recommended using it for pain relief but I take so much medication I have no idea what I should do. I wouldn't know where to begin or how to use cannabis everything just confuses. I'm getting more and more depressed and very frustrated. Any information you can give me would be much appreciated. Jo

I can’t recommend enough to call around until you find a PT practice that does computerized Gait Analysis. The PT puts what looks like a gel orthotic with an ankle attachment in each shoe and has you walk while they view what’s happening on the laptop screen. The graphs that come up in “real time” show where you are putting pressure on each part of the soles of your feet as you walk (now able to compare the affected and unaffected leg).
With me- I have (R) lower leg neuropathy with weakness, numbness and tingling. The graphs showed that I was getting very little “push-off”” from my toes and the ball of my foot as I stepped through each step. The PT made a metal rocker and embedded it in the shoe, so now I get a mechanical push off, rather than landing flat. The graphs also showed that I was tending to walk on the outer edge of my foot (my sole has very little feeling), so he added built-up to the inside of my shoe so my ankle is positioned in much better alignment, which has caused my knee to be in better alignment, which has led to markedly diminished knee pain from just being up and about. He did recommend I shorten my walk (used to do 3-4 miles/day) and keep it to around the block twice, paying attention to good form (with the affected leg- concentrating on exaggerated heel strike and active push-off, shortened step length). It’s made such a difference!!
The left shoe sole was built up so the shoes are the same height. You can’t tell they are adaptive shoes- the PT recommended lace-ups, I bought Brooks sneakers as they have a mesh top to accommodate comfortably the hammertoes I’m now getting on the affected foot due to the imbalance of muscle tone, due to the neuropathy (the gift that keeps on giving!). I bought two pairs at Dick’s Sporting Goods, so I could be sure to always have a pair to wear.
I understand John recommending a podiatrist but I would strongly vote for a PT practise for the computerized gait analysis- not just someone watching from behind as you walk, but actual data to address the specific problems that can be addressed with specific adaptions. If none of the PTs do the shoes themselves, they will know someone who does and will give them specific instructions, then have you return for PT follow-up to see if the adaptions need to be adjusted.
Good luck and don’t be discouraged if takes a lot of calls. I drove two hours each way four times to get these shoes and they have made an incredible difference in my life- I can enjoy walking again, my knee doesn’t hurt, I’m not being nudged off-balance, I could go on and on!!!

Good information. In what state did you find your specialized PT?

Morning I have Neuropathy in both my legs and feet. Tried multiple medications and even massage therapy. Nothing seems to work some days are better than others but when it's bad it's bad. I never had this problem before and not sure what started this Neuropathy. I'm inclined to think that I got my Pfizer booster shot and ever since then I've had these symptoms. I also had back surgery 2 years ago with a fusion on L4/L5 and have never been the same. It's been up and down with P/T and medications but nothing helps. Thinking about marijuana. Any thoughts would be appreciated. Thank you JoJo