Infusions for widespread, intense nerve pain, probably due to MS

I will tell you what I know. I do not have MS. I have peripheral neuropathy with severe ball of foot and toe pain that burns, stings, stabs, throbs, quite a bit of the time. My toes feel gnarly and often yanked at. Gruesome illness. Anyway, I have used only lidocaine patches, which help all pain, but tend to cause a type of burning of there own, different than neuropathic burning. Not the best, but still helpful. Never even heard of lidocaine infusions or ketamine infusions. I have recently considered stem cell infusions and have been researching them. The safest are from healthy born babies, using their umbilical cord stem cells. the most serious risk......the stem cells may differentiate into cancer cells. This is rare, but can happen. And, even at Mayo clinic, there is not double blind studies on stem cells and neuropathy. As far as immunoglobulin infusion, it is not a picnic, from what I here, and does not always help. The latest thing I have found helpful are the CBD oils, without the marijuana. Legal in Illinois. No dispensaries needed. They help pain quite a bit, and loosen up my utterly painful toes. God in heaven, a night mere of an illness. Lori renee

Lori Renee, Thanks for sharing what you know. You might want to inquire about ketamine infusions. I'm told they last 1 - 2 weeks and take about 1 hour to do. Depending on the type of insurance you have and the level of pain care you can get through your local provider, infusions might be preferable to using lidocaine patches. I imagine patches aren't all that easy to keep solidly attached to your feet.

The patches totally stay on, but have a burning side effect. (Just what someone with neuropathy needs!) I will talk to my neuro doc about the ketamine. Thanks for the info!!!!

Oops. There's a typo in my previous reply. I meant to write that lidocaine, NOT ketamine, infusions last 1 - 2 weeks. I don't know anything about ketamine infusions. Sorry for the confusion.

I had infusions for RA. It recalled helped. I guess they only do them for short. My infusions usually look lasted maybe 5 hrs. They make sure you are comfortable. They must run slow according to my dr.

Thanks for the clarification!

I just started looking into Stem Cell therapy for PHN from shingles in 2004. On Medical Marijuana for five weeks. Still in constant chronic pain.

@elsa. I have neuropathic and bone pain from chemo and two stem cell transplants for lymphoma. I also get IVIG to help with a compromised immune system. I don’t feel IVIG does anything for my pain issues...if anything it can sometimes make it worse. Granted I don’t have MS, but I am very informed on my therapies and I have not seen anything about IVIG improving nerves.

I had bone pain from my autologous transplant (using my own stem cells), it only got worse with second allogenic transplant from sister’s cells...so I have my doubts about stem-cell therapy for nerve-related pain. There has been some success with stem cell therapy for joint pain and ligament/tendon injuries, but it’s not a medically accepted therapy yet for nerve pain. Most places offering stem cells for nerve pain are chiropractors with a lower threshold on treatments...insurance won’t pay for it either.

Have you tried Gabapentin, Lyrica or Cymbalta? Some people get relief from these. Also massage which increases blood flow and loosens muscles that tense from pain.

Ketamine is a strong medication used for anesthesia, much like a pain med. I have not heard of IV lidocaine, but it might help...though I would think it would work best administered to the location with the pain. Steroid injections might also help especially if it’s related to nerve impingement from inflammation (maybe from botched surgery?).

Hope my experience helps....Best of luck!!

Thanks very much for your response; it was enlightening.

I used to get steroid injections at L5-L6 but they stopped working. I do take 1800 mg/day of gabapentin. I also take CBD oil and low-dose naltrexone. I'm sure the gabapentin helps a little but I'm less sure about the efficacy of CBD oil and low-dose naltrexone. For 8+ years I also took morphine and hydrocodone but it's now been almost a year since I've taken any opiates.

I gather that lidocaine infusions are a pretty new pain therapy. Here's a 2017 article about them:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5323245/
I haven't tried massage but hope to do so. I've also tried dry needling which has been helpful for the neuromuscular part of my pain.

I wish you all the best with managing your pain.

My doctors are currently considering ketamine infusions for me. I have a doctor at a pain clinic but I also have a doctor who is an integrative pain specialist and they work together on my treatment. I've been in terrible pain for 15 years and so far this combo of doctors is the best. I saw and read the same article that you found but still had questions afterward just like you. I do currently take an oxyticin troche and a ketamine troche. They dissolve under your tongue and somehow they work together to help alleviate your pain. I was on a fentanyl patch for many years along with tramadol and the oxytocin/ketamine combo pretty much beats the pain relief. I was so afraid to get rid of the patch because it was my only significant and long lasting pain relief but am finding that these medications almost work better. They are also opioid alternatives.

Please let me know how your infusions go. Good luck to you and take care!