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

Posted by elsa @elsa, Feb 6, 2019

Yesterday I had an appointment at my local pain clinic (UW Health in Madison, WI). Each time I visit, they have me color code a diagram of where my pain is and what kind of pain it is (e.g, yellow = aching, blue = burning, red = stabbing, green = tingling, etc.) I colored in the entire back of my buttocks and hamstrings on both sides as both aching and burning. That kind of diagram is new for me because in the past my pain was much more localized. The pain PA who I saw said that that type of diagram, i.e., broad, expansive areas of burning pain, along with a description of the pain being in the skin, was what she typically sees from her pain patients who have MS. I have MS and I also have had chronic neuro-skeletal-muscular pain due to a disc injury and subsequent microdiscectomy in which the surgeon tore the dura.

The PA at my Pain Clinic ordered a lidocaine infusion which I will be scheduling. That said, I came home and did a bit of research online and found a brief article titled “4 Infusions that can help relieve chronic pain” https://www.painnewsnetwork.org/stories/2017/10/22/4-infusions-that-can-help-relieve-chronic-pain.

The 4 possible infusions are: 1) ketamine 2) Immunoglobulin 3) lidocaine and 4) stem cells

I subsequently sent a message to my pain doctor as well as my MS doctor and PCP. The MS doctor and PCP said that was a question for the Pain Clinic. The Pain Clinic wrote back and said: “the UW Pain clinic doesn’t offer ketamine, immunoglobulin or stem cell treatments. You are welcome to explore those options.”. This is so TYPICAL of healthcare at places other than Mayo. No real coordination between departments. Neurology refers me back to the Pain Clinic. The Pain Clinic only does lidocaine infusions so they don’t try to answer the question or try to call Neurology and find out exactly what types of infusions are actually possible between the Pain Clinic and UW Hospital which serves neurology patients. Ugh! I requested an appointment with Mayo Neurology but was turned down (even though I’ve been a patient in the past and have graduated from Mayo’s Pain Rehab program). I plan to persist and see if my PCP can call Dr. Keegan (the MS doctor who’d seen me in Mayo Neurology) and explain to him the kind of wall I’m running into locally.

Anyway, I’m writing to ask if any of you have been any experience being treated for severe neuropathic pain in the skin with ketamine, lidocaine, IVIg or stem cells? I have MS which, of course, is an autoimmune disease so I suspect IgIV might be appropriate but I really don’t know.

Liked by Utah0114

@elsa

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.

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Hello Elsa

I hope this post finds you receiving pain relief. I scrolled back through posts searching for anyone who has recd lidocaine infusions. You spoke of Low Dose Neltrexone as well.

I'm sreally suffering from wide spread Small Fiber Neuropathy and have received infusions for 3 and a half months to which I broke from this week. I needed a mental break. Dose up to 1000, getting metallic taste in mouth that lasts a couple days, partial face numbness. It scares me honestly. Needed to prove to myself if it's worth sitting there every week for over 5 hours and enduring side effects. Stopping is the only way to do so.

It certainly does not bring sufficient relief to my most problematic areas but overall does provide relief in various places. With or without, I still need 4 hydro each day plus Duloxetine, Lyrica and newly added plethora of supplements.

My PM Dr. recommended low dose naltrexone last Dec. I filled the script then never took it because I wasn't prepared to stop hydro due to my pain levels.

Heard great things about ketamine infusions but insurance won't cover and I can't afford out of pocket.

Meeting with my Neurologist Wed and I believe his next suggestions are IVIG (which confuses me bc I don't have an autoimmune disease) and plasmapherisis. Both difficult to receive insurance approval for.

If you are willing to share info or experiences on any of these mentioned topics I would be very grateful.

Also, anyone else out there is welcome to add to the conversation.

Thank you. Much appreciated!
Rachel

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