Member Neuropathy Journey Stories: What's Yours?

No diabetes. Here is a quick list of all major stuff:
Stroke @ 6 months old causing cerebral palsy - mild right side spastic hemiplegic.
Diagnosis @ 17 of Fibromyalgia - later confirmed by a specialist in my 20's.
Diagnosis @ 20 of intestinal pseudo-obstruction
Diagnosis of CRPS on my right foot after 9 surgeries around 2010
Diagnosis of MCAS in 2016 after sudden onset food allergies, chemical sensitivities, drug reactions, and dry flushing
Notation that my brain tonsils are peeking out of my skull and my brain has settled crooked due to the difference in mass between left and right sides - this is causing my brainstem to be impacted - no fix available. Definitely causing my extended bouts of nausea (lasting days at time) and originally thought to be causing the left sided nerve pain until steroids calmed everything down. For reference I am 51 currently.

Hello My name is Logan. I have been diagnosed with diabetic neuropathy, categorized as severe.
Hospitalized 4 times cause I could not stand, let alone walk.
I collapse at times, bang myself up. Get up to use washroom in middle of night fall flat on my face and then I cannot even stand.
Today I woke up and I new something wrong. right foot was weird. I cannot move my big toe anymore. It is like it is not there. Diabetic neuropathy has no known cure. The goals of treatment are to: Slow progression Relieve pain. That basically what they told me. AKA it will only get worse, best we can do is slow it some.
Be prepared a wheelchair is a reality for me soon they said.
I am venting here sorry. it just hard knowing what is coming and nothing can stop it.
I am fighting to stay positive. That my feet and lower legs. No injury occurred. That is just how it progressed. click on pic to enlarge if you want. I know it looks brutal. I see them everyday

Hi Logan, Thanks for sharing your diabetic neuropathy story. I also have trouble when I have to get up at night to make a trip to the bathroom. I am pretty unsteady when I have to get up in the middle of the night so I've resorted to keeping a walker next to my bed to give me support in the short distance to the bathroom. I don't have to use the walker during the day but it definitely helps me at night.

It looks like you also have swelling in your feet and legs. How are you doing with your diabetes? Are you able to manage it OK?

yes I am almost always in my target range. But that was not always the case

I had several surgeries in 2020 to repair badly broken arm bones. After the last surgery, which required a bone implant, I was left with chronic nerve pain. This pain NEVER STOPS. It can range from low (good days) to very, very bad.

I have tried everything. Gabapentin, fibromyalgia meds, opioids, massage, acupuncture, capsaicin, Voltaren, lidocaine patches, therapy, hypnosis. What works best is cannabis, but the side effects are not practical (dizziness, confusion.) Lidocaine gel gives temporary relief — 30 minutes. in 2021 my surgeon sent me to a Pain Clinic at a regional university hospital. They told me nerve pain is "all in the brain" as the nerves are firing with no real reason. They also recommended lidocaine patches and positive thinking. Yeah, right. Before all this I was THE most positive person. And now I TRY to smile ... because self-pity is not my thing.

I have considered suicide and will probably follow through in the next 5 to 10 years, as my doctor and surgeon have explained that my pain is incurable. And yes, I went to therapy! In the end, my therapist understood completely. Nobody should live in unrelenting and incurable pain, she told me.

Although not depressed — I love life — I am very discouraged. I currently take 2400 to 2700 mg of Gabapentin a day, plus 2 ibuprofen. And cannabis at night so I can sleep. None of this is a cure of course.
And the pain is always here, every minute of every day. What saves me from jumping off a cliff are the "good days." And yes, I have them! About 1/3 of the time the pain is below 3 on the famous smiley-face scale. Those days are baffling. Why does the pain suddenly dip? On a good day my arm still hurts, but it's more like rubber bands snapping and less like flaming razor blades ripping my flesh.

Recently the pain has started to travel up my arm and into my shoulder. Now all the nerves in my arm are involved, not just the wrist and forearm. It's a whole new pain. It's also spiking up to 7 and 8 for days on end.

A friend with diabetic neuropathy says her rheumatologist is taking her OFF Gabapentin, saying it can actually exacerbate nerve pain. It makes me wonder. I've decided to try lowering the dose. Gradually.

I have a wonderful family and good friends. But this is a lonely journey.

Hello @nervylady70, Welcome to Connect. I know it's difficult living with the pain and I know it's no comfort to tell you that you aren't alone. Thank you for sharing your journey with
us. It sounds like you have tried a lot of treatments with limited success. There is another discussion that sounds similar to the nerve pain you describe.
— Neuropathy, Ulnar Nerve Entrapment, or…?
https://connect.mayoclinic.org/discussion/treatment-of-neuropathy/
The Foundation for Neuropathy has a list of complementary and alternative treatments, along with a list of supplements that are known to help nerve pain here – https://www.foundationforpn.org/treatments/.

Have you tried any supplements to see if they might help?

So sorry you are suffering so much. You mention that cannabis has been helpful but side effects a problem. Just a suggestion, there might be a THC/CBD mixture that would have diminished negative side effects and still be helpful for pain relief. If you live in a place where there are dispensaries someone there could probably be helpful. Wishing you major relief!

Good afternoon @sfn. I don't think I replied to this post and I will leave the post you requested at the end of this message. I see that @johnbishop moved your post to another discussion.

So.....first....I agree with you. I do not enjoy psychoactivity and will not inhale. Please check out Papa and Barkley balm. I have been using it on my hands and feet for several years. There are two levels....a 1:3 CBD/THC for acute pain and a 3:1 for chronic pain. There are actually two websites -- papaandbarkley.com and papaandbarkleycbd.com.

And here is a copy of the response I made earlier. It probably doesn't fit your request but I wanted to make sure I could figure out how to move it here for you.

Good evening @sfn jordan. Ya know…….I never have tried support hose for SFN. However, I decided to try a pair of the popular "leggings" which are pretty snug fitting. for my Yoga class. And guess what? They help the numbness and pain in my legs. I was pleasantly surprised. I only wanted to look younger in them.

So now I have several pairs that I wear, especially on laundry day when I go up and down stairs. They also help when the barometric pressure is low, a situation which increases what I call "the pressure pain".

Thanks for your post, you can share it with your neurologist. (Just teasing!)

What are your priorities today? Are your feet still at the top of the list?

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

I am interesting to hearing your stories for SFN..I will tell you mine..
I was put on a medication for peri menopause in 2010 ..very short term , came off cold turkey..Ended up with severe symptoms..

I have severe nerve pain ...sharp pins and needles, burning, acidic flowing entire body , sensation of inflammation, chemical feeling flowing ...

Pattern ...whatever sensation I have if it's pins and needles..it goes throughput entire body head to toe , literally..inside my head , eyes, nose, ears, face, mouth , teeth ,throat , arms ,hands, legs,feet , if I scratch , rub, massage whatever symptom I have at that time it will exacerbate in my mouth , the intensity on my body don't change or exacerbate ..that only happens inside my mouth ...My dog , kids can jump all over me it doesn't effect me ...the nerve pain sensation rotates from one sensation to another...there's times it gone almost completely ...it effects my muscles from the firing, at times feel.like I sprained my ankle or wrists , that comes and goes...

I had every test availed other then a biopsy..but had a different kind of test for SFN that was negative in 2014...I had no Large fiber neuropathy either..I had autoimmune tests done..all negative ...I know no one actually d/x me but I would like to hear if these symptoms sounds like SFN ...I also have tight muscles in my neck and shoulders ...I am functional but have severe pain..

I don't have the hot or cold symptoms

I don't have sock like symptom

I can feel light touches including a feather

The only symptoms I have mostly is nerve pain and muscle tightness and aching muscles in arms ..shoulders...

Any thoughts be greatly appreciated ..thank you for taking the time to read..

Good evening @laura163, and welcome to Connect. It doesn't look like I have to remind you that we need more information about the symptoms your body seems to be dealing with right now. You indicate that you haven't had a skin punch biopsy anywhere on your body.....ankles, hips, or other areas. This is a special test that measures the number of nerve cells you have in the nerve fibers. For example, my was .09%. That indicates that I don't have enough of those tiny fibers to be able to receive appropriate messages from my brain. So....my brain sends pain signals.

As I perused your symptoms I found many to be exactly like mine. My SFN actually showed its character early in my arms, hands, and skull. The skull area can really get riled up at times with pain as well as tingle-tangles. (my terms for the numbness and nerve pain). My feet started with a few twinkle toes and quite quickly, or so it seemed, moved on across the bottom of my feet and now seem to be knocking on the door at and above my ankles.

So....you don't have the hot and cold symptoms. That is rewarding. I generally have ice-cold feet and hands as opposed to hot ones. It does seem like my sense of the cold is much more severe than my MFR therapists feel from the outside.

What was the "other kind of SFN test you had in 2014? I have only heard of the skin punch biopsy test. I also have not read any post from a member with feelings that appear to end up in your mouth. A question. I do not know how old you are but I would like to know if you have been diagnosed with Osteoporosis or Osteopenia. That is when my mouth issues came into play.

You mention your medication in 2010. Are you thinking that it started your SFN?

Would you be so kind as to share with me what you actually do to alleviate your pain and discomfort? Just to get us started I will tell you that I have two sessions a week of MFR, Myofascial Release Therapy. There are two therapists with me in order to be able to work on feet, hands, etc. etc. Without MFR, I wouldn't be driving or having any kind of a happy, joyful life.

Are you looking for relief, answers, and current research information? OR??????

May you be safe, protected, and free of inner and outer harm.
Chris