Peripheral Neuropathy and benign fasciculation syndrome.

Good evening @dipperlip1 ..........greetings. Are you 85 years old now? I just turned 82 on Monday. I have read about your chronic symptoms of Erythromelalgia. Are your Neuropathy symptoms recognizable? Were you given a cause for your Neuropathy? Where do the symptoms seem to generate? My SFN *small fiber neuropathy) has been with me for 11 years. I have been using medical cannabis for at least 10 of the 11 years. In the last couple of years, I tapered off pain meds like gabapentin because I felt that my MCI (Mild Cognitive Impairment) became worse e.g. fuzzy brain with that particular med.

You are considering CBD as a pain med for your Neuropathy. Have you ever tried some form of marijuana? My goal is to reduce chronic pain without dealing with any psychotherapy.

To accomplish that goal, I use only Tinctures and Topicals. My dosages have changed over the last 10 years so please remember that you begin with small doses and raise them as your body adjusts to the medical cannabis.
So here we go:
1. Use tinctures or a balm. Capsules go into your digestive system and it take a long time to distribute the medication. A tincture submitted under your tongue with a "dropper" will filter through the membrane and go directly to your brain. Here is my daily schedule that is now controlling my SFN (small fiber neuropathy). In the morning, I have my "get up and get going" dosage of 1:1 (CBD/THC). In the afternoon, I may have another small dosage depending upon what my day is like. By evening or bedtime, I find 2:1(CBD/THC) the perfect combination for sleeping. THC activates the CBD in a process called "entrepreneurship".

For the tingles and numbness, you may find that a topical is very helpful. You can read about options on this website: http://www.papaandbarkley.com. And the balm comes in a 1:3 CBD/THC for acute pain or a 3:1 CBD/THC for chronic pain.

I would like to introduce you to @jenatsky. If he is available to stop by and greet you, I am sure that you will benefit from his medical cannabis experience.

Please don't hesitate to ask questions. And if you tell me where you live, I can research the government regulations in your state and pass them on to you.

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

I have had Benign Fasciculations all over my body for almost 20 years (normal NCS-EMG). In Sept 2021 I developed foot pain and was diagnosed (by NCS-EMG) with Idiopathic PN in my feet. It seems the fasciculations and foot pain go hand in hand. When I get lots of fasciculations I get an increase in foot pain and when they subside my foot pain is always goes down. When I told my Neurologist about this she did not react at all. Told me that it could be related. Is there anyone out there with the same symptoms? It feels very weird.

July of this year, I noticed my calf muscles twitching on both legs (not all day) - by August they were twitching around the clock- localized to calves. I went to Dr- ordered a bunch of bloodwork and told me to come back in 3 months after taking B12. B12 was on low side but not out of range. 3 weeks later I went back b/c not only was their muscle twitching I was experiencing parathesis in my lower legs and arms and they sent me to a neurologist.

I failed the vibration/temperature screening- he told me I had PD and sent me for extensive bloodwork. Only thing that was a little high but not out of range was by B6- Came back for EMG and it was clear- he told me I most likely had Small Fiber neuropathy and told me to take soluable B12, stop alcohol all together ( I drink occasionally) and sent me on my way.

I went back to my primary and now have a 2nd neurology appt b/c she doesn't like the muscle twitching. I'm 53 year old woman- I work out 3-4 times a week and can not figure out what the root cause is. My legs are either a burning sensation, constantly twitching and now around my ankles feel numb. Sometimes I get the same sensation in my hands/arms but not everyday.

Anyone else have the same experience where it started with fasciculations and then the symptoms of neuropathy started?

@giaodonnell Welcome to Connect. It doesn’t sound like your doctors have thought about any spine issues yet. I had those same symptoms that were for me generated by some disc problems in my spine, mostly it was cervical with slight spinal cord compression, but I also had a bulging lumbar disc. I did have a cervical fusion which resolved the issues. My first symptom of spinal cord stenosis was a pain in my ankle when I turned my head. That was caused by bone spurs moving across my spinal cord. A spinal cord compression issue in the neck can cause leg symptoms. There could also be arthritis where a nerve exists the spinal cord that could cause symptoms specific to that nerve. Spine issues do tend to get worse with aging. Hopefully your doctors will find an answer and solution for you.

@dbchip I have right leg PN and fasiculations- feels like spiders dancing on my lower leg, then stops after awhile. At times I get a stinging sensation just in my (R) big toe. If things start to really hurt, I “march” in place and that seems to reset things. This has been going on since 2017, lots of tests and MD/neuro/ortho visits. I think the symptoms are all related to my nervous system going a bit haywire and I just need to deal with it day by day, there are no good answers.

@jenniferhunter
I find it interesting that your spinal cord problems have apparently caused symptoms in your ankle. I have had PN for over 20 years and also have degeneration of my lumbar vertebrae and stenosis. Both neurologists I’ve seen over the past 3 years insist that my spinal issues have nothing to do with the PN in my feet and lower legs. I have to question this, as my PN symptoms always get worse when I am certain positions too long. Specifically, sitting on a soft chair or sofa, and laying down in bed. It seems that changing pressure on my damaged lower spine affects PN symptoms, and that damage, or pressure, on nerves in the lower spine can play a role in PN of the lower limbs.

@cwloeffler I think you understand how hard it is to advocate for yourself when they won't listen. I knew that my ankle pain was related to my cervical spine because I could turn it on and off by turning my head and it was reproducible. Surgeons would not listen to that until I got to Mayo. They were familiar with the condition there. You have to consider that when you change body position or lay down, etc., your spine changes position and the spinal cord has to shift inside the spinal canal. If you have issues caused by compression of the spinal cord, that may affect if when the spinal cord moves against some structural issue. If you bring up a question like this as to what happens as your spinal cord moves, they have to think about it.

Here is medical literature that describes funicular pain which is what I had. If you have stenosis at nerve roots, that is predictable because it is a specific nerve affected. If compression is acting on the spinal cord, it's potluck which conduit of nerve cells will get compromised, and because it moves, it isn't always the same pattern or specifically the same place you feel some pain.

Eur Spine J. 2010 Oct 13;20(Suppl 2):217–221. doi: 10.1007/s00586-010-1585-5
"Cervical cord compression presenting with sciatica-like leg pain"
https://pmc.ncbi.nlm.nih.gov/articles/PMC3111492/
This describes funicular pain originating from the neck. It may happen at other areas of the spine. I don't know the answer, but that is a question to ask. I sent this medical paper when I applied for an appointment at Mayo and I asked if my case is like this one. I also found this because of looking up the term "funicular pain" that I found in a paper from a Mayo surgeon.

Hello everyone,
I just discovered this forum here and I am so glad to join this discussion forum and be able to share with co-sufferers!

I live in Europe and have been having extremely painful peripheral neuropathy in my legs and hands inculding seizure like cramp attack and fasciculations in legs and hands for years. I have seen countless doctors- neurologists, ortothpedics, angiologists - you name it, but no proper diagnosis so far. I have been prescribed high-dosed THC in combination with CBD, tried it for 3 months - no pain relief, only dizziness. I have been prescribed Pregabaline, same result: no pain relief, only side effects. Weaned off it, PN seemed to get worse after that.

Condition worsened further after a bad Influenza A
infection.

I have been trying alternative medicines like gingerol etc. but nothing seems to help.

I am sure I am only one out of countless sufferers of neurological disorders. The problem seems to be the incredibly diverse and complicated nervous system pathway chemistry. For years now I have been trying my best to find ways for pain relief and am now reaching my energy limit.
But maybe there is hope for others sometime in the future.

Just to let you know that you are not alone suffering. That maybe some comfort. It sure does help me.

Hello @pennycurious1, Welcome to Connect. You are definitely not alone. Myself and many others also joined Connect on our search to learn more about our condition and anything that could possibly offer some relief. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

There are many different discussions that you might find helpful in the Neuropathy Support Group. Here is a link to the list of discussions available on Connect - https://connect.mayoclinic.org/group/neuropathy/. The Foundation for Peripheral Neuropathy also has a list of treatments that might be helpful to scan through - https://www.foundationforpn.org/treatments/.

@johnbishop

Thank you, John.
Your suggestions are much appreciated.