​Hope For Neuropathic Pain and Spasticity?

Posted by Tim Gilmer in Life After Paralysis on April 26, 2022 # Lifestyle

I have experienced mild to severe neuropathic pain (NP) from my SCI for 40-50 years. Most studies claim that from 30 to 50 percent of the spinal cord-injured population has to cope with varying degrees of this little-understood pain that has no reliable treatment.

The nature of NP is difficult to describe because it varies with individuals and can change over time. Also, the exact origin of the pain may be impossible to pin down due to the complexity of the central nervous system, the different types of SCI injuries, and the unreliable sensory awareness of those who experience it. Most first-person descriptions characterize it as a sharp, burning, stabbing, pinching pain that resembles an electric shock. It is unpredictable, varied, and often unexpected. It can also be felt as an aching, tingling burn, or uncomfortable pressure-like sensation.

However, it is described that when it is felt every day, it becomes more than a pain problem. It can interfere with energy level, work, recreation, sleep, or even thinking, and the lack of reliable relief can bring on depression, extreme grumpiness, and a sense of hopelessness.

Thankfully, it does usually stop at some point during the day, although it may also resume. Many people with SCI find that it can be useful as a warning of other problems that need attention. You may have an emerging pressure sore, bladder infection or bone fracture, even though it is felt in a location that is distant from the perceived stimulus.

All this uncertainty is frustrating and maddening. Few, if any, doctors or nurses have experienced SCI-specific NP themselves. Diabetic neuropathy is related but does not behave the same as NP that results from cord damage. Spasticity from SCI or MS is also debilitating and difficult to treat.

So What Are We To Do?

A great deal of practical, helpful info exists in our own community. I have written articles based on my own and others’ experiences that can be a source of possible NP relief. One thing seems certain — there is usually no single drug or treatment that eliminates the pain, but a safe “cocktail” can sometimes bring relief. Some claim that massage alone or massage with acupuncture can help. Others may damp down the pain with exercise or distraction, such as listening to music with earphones in a relaxed setting. Most, however, turn to pharmaceuticals or pain-relievers at some point. The go-to Rx from doctors, either gabapentin or pregabalin (anti-epileptics), can be somewhat effective, yet many individuals I have interviewed abandoned them due to unpleasant side effects.

Recently, though, more and more NP and spasticity sufferers are turning to popular natural substances for relief. I’m referring to medical cannabis (MC), whose main ingredient is THC, and/or CBD, usually from hemp.

I have experimented with various percentages, dosages and combinations of the two for the last 4-5 years for NP. Prior to that, my go-to treatment was an opioid — hydrocodone tablets — but addiction or dependence is fairly common. I have managed to stick with the lowest dose of 5 grams of hydrocodone/325 mg of acetaminophen, usually in combination with a glass of wine, CBD, or both in the late afternoon. If I have pain prior to then, I’ve found that acetaminophen alone or ibuprofen can help take the edge off. However, the pain gets worse later in the day.

Recently, to deal with a severe NP attack, I tried 1.5 tablets of hydrocodone with a glass of wine and 3 or 4 vapes of a CBD-dominant oil cartridge (either 2:1 CBD to THC or 1.5:1 CBD to THC). The addition of CBD-THC helped. I don’t consider it a “pain killer,” but it can diminish pain, and it works almost instantaneously.

Most people find their own combination of ingredients that work for them. Opioids should always be prescribed by your physician, never purchased on the street (fentanyl-laced street drugs can kill you). It is best to be perfectly open with your doctor about any combination you try, preferably before you try it. Read labels and inserts and be aware of any contraindications or dangerous combinations of other prescription drugs you may be taking. Long-term opioid use can lead to stronger and stronger doses. Instead, I usually add one or more safe substances at low doses rather than become addicted to higher-strength opioids. As long as the pain is not severe, I only self-medicate late in the day, after work.

A recent double-blind multi-location trial in Denmark tested SCI and MS users who experienced either NP or spasms. Both NP and spasticity cohorts consisted of four groups. Each group received either one capsule of CBD alone, or (2) one capsule of THC alone; or (3) one mixed capsule with a 2:1 CBD to THC ratio. A fourth group received a placebo capsule.

When I read about this, I was excited. The dosage ratio in the third group is exactly what I have been trying independently, giving me some relief from NP. All of the substances and dosages were standardized in this trial, and no person exceeded a total of 45mg of CBD or 22.5mg of THC daily. According to my internet search, the results have not been released yet, but I am eager to see the final conclusions.

If you are struggling with NP or spasticity, please confer with your doctor before trying something on your own. Do some research online first. Challenge your doc to read or at least consider a published trial or two. No amount of reduction in pain is worth risking your overall health, and certainly not your life.

The Christopher & Dana Reeve Foundation offers various resources on Neuropathic Pain from our in-house expert, Nurse Linda, and our Pain Resource Page. Be sure to check them out.

The information contained on this website is presented for the purpose of educating people about paralysis. Nothing contained on this website should be construed nor intended to be used for medical diagnosis or treatment. It should not be used in place of the advice of your physician or other qualified health care provider.

Tim Gilmer graduated from UCLA in the late-1960’s, added an M.A. from the Southern Oregon University in 1977, taught writing classes in Portland for 12 years, then embarked on a writing career. After becoming an Oregon Literary Fellow, he went on to join New Mobility magazine in 2000 and edited the magazine for 18 years. He has published upwards of 100 articles, 200 columns, occasional movie reviews and essays. He and Sam, his wife and companion of 47 years, also own and operate an organic farm south of Portland, where they live with their daughter and son-in-law, four grandsons, and a resident barn owl. An excerpt from a memoir about his early post-SCI years, as part of a compendium of his writing over the past 30 years, can be read at his website — All You Need

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.