UPDATED 9/2023 - Updates are interspersed throughout
Ouch. I suffer from chronic neuropathic pain (NP) as a result of my MS.
In the case of NP caused by MS, the nerve fibers themselves have been injured and become damaged. These damaged nerve fibers send incorrect signals to the pain centers in the brain, the part of the brain that interprets nerve signals and determines if those signals should signal a sensation of pain. The impact of nerve fiber injury includes a change in nerve function at the injury site and areas around the injury.
In my case, I have a lesion in my cervical spine (neck) around C1/C2. An MS lesion is the result of the immune system attacking the nerves, then the body unsuccessfully attempting to heal the damage, leaving behind a mess of scar tissue. The lesion is laterally located on my left side. The result is: 1) lots of pain downstream of the C1/C2 nerve, into my left shoulder, arm, and sometimes hand; 2) weakness in my left shoulder, arm, and hand; 3) weakness and loss of control in my left hip and down my left leg, into my foot; 4) burning pain in my right leg and foot.
There are three approaches I use to minimize pain:
Consumption of a proper diet also includes eating on a regular schedule. I have found that if I skip or even delay a meal, this can significantly increase my pain levels.
Anticonvulsants are anti-epileptic or anti-seizure medications. They suppress the rapid and excessive firing of neuron activity, lowering over-active nerve signals, which is what damaged nerves can look like to the brain. Anticonvulsants used to address NP is an off-label (not precisely what the manufacturer intended) use. Many medications like these are prescribed frequently for off-label uses.
One of the great things about anticonvulsants is that, unlike most medications in a particular category, if one particular agent does not work well for the patient (because of efficacy or side effects), another may offer different results. These medications represent a diverse group of pharmacological agents, classified into sixteen subcategories, each consisting of 1-10 medications.
Lyrica, gabapentin (aka Neurontin), and carbamazepine (aka Tegretol) are commonly known anticonvulsants used for pain. I used to take gabapentin (under the brand Gralise) for general body pain, and burning pain, and carbamazepine for more direct, sharp pain.
One of the ways I deal with breaking out of a pain crisis is to use medical marijuana with a high concentration of CBD. I use a tincture and tend to like between a 1:1 and 3:1 mixture (CBD:THC). I also have pure CBD oil, which seems more generally therapeutic; it doesn't seem to address a pain crisis without at least a bit of THC in the mix.
For more about my thought processes on this topic, see these blog posts:
Watch this video to see a similar reaction to what I experienced. I use it to combat extreme pain; Larry Smith uses it to combat Parkinson's tremor dyskinesia. It doesn't always work so dramatically, but often, it does, especially for specific types of full-body pain caused by general nervous system overload. If you have MS pain, you know what I'm talking about.
Here's a very comprehensive article analyzing marijuana from a medical use point of view:
Marijuana Update 9/2023:
It's now been about two years since I discontinued cannabis. I had read about a new study showing that cannabis interferes with carbamazepine. This new research explained the sometimes unpredictable nature of cannabis for me in its relation to pain relief. Since the carbamazepine was giving me the best results more often, I dumped cannabis and increased my carbamazepine dose. After only a few months, it became clear that this was indeed providing better results.
tDCS & pEMF - Update 4/2017
I recently became horribly frustrated with the side effects of all the medication I was taking. Furthermore, the pain control had slowly been waning for a couple of months, so I decided to look elsewhere for pain relief. My pain neurologist mentioned TMS (transcranial magnetic stimulation). While researching TMS, I discovered pEMF (pulsed Electromagnetic Field) and tDCS (transcranial Direct Current Stimulation). All these therapies are known as neurostimulation.
I was able to find several studies online, including on the National Institute of Health's website. There is clear evidence that these new therapies can significantly reduce pain without medication. I began treatment three weeks ago, and after a few days, I began feeling better. I have already been able to reduce my anticonvulsants significantly while reducing my average pain by a good two-thirds!
My insurance does not cover this therapy, which I think is criminal. And it's expensive. Yet I'm so convinced it's helping me that I purchased my own professional-quality unit so I can do my own treatments at home. I'm still under the supervision of my neurostimulation doctor, Dr. Tiff Thompson of Theramind. (They have several locations in the USA).
I intend to continue treatment until I completely eliminate my need for anticonvulsants. Furthermore, there's evidence to suggest that neurostimulation can encourage both neuroplasticity and neuroregeneration, so I planned on experimenting and continuing treatments for some time.
After about seven months of daily treatments, it seemed that the efficacy of the tDCS had reached a "plateau," as my doctor described it. I discontinued it shortly afterward.
Update 9/2023: TENS/EMS
At the recommendation of my pain neurologist, I purchased a little TENS/EMS device. I paid less than $40 on Amazon. She told me they all worked about the same. There's no doubt in my mind that this device lowers pain. It seems to confuse the pain receptors, and after only 10 minutes, the pain is decreased. Furthermore, if I use it before bedtime, I sleep better.
The TENS can be attached before bedtime and programmed with a sleep timer. You can easily sleep with the electrodes attached. This device can also be used as a muscle massager. Interestingly, the muscle vibrates, but the surface of the skin does not. I put one electrode at the lower-right base of my neck and the other a couple of inches below the first. You might need to experiment and adjust the positions to target the desired area appropriately.
- My Stem Cell Transplant Date: June 5th, 2016
- Treatment duration: 4 weeks
- Typical onset of disability reversal: +9 months
- Typical complete recovery from procedure: +1 to +2 years
- Typical maximum reversal of disability: +2 years
I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.
- AHSCT and Progressive MS. Conflicting Studies (Year 6.4) - UPDATED
- Check-In (Year 5.2)
- No New Activity on MRIs (Year 3.6)
- Bloodwork Back To Normal (Year 3.3)
- Why Neurologists in the US Don't Recommend HSCT (Month +35.8)
- Better Pain Management (Month +33.6)
- Final Re-Vaccinations & The Medical Cannabis Primer (Month +32.9)
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- Cruising Along (Month +29)
- Nerve Decompression Surgery (Month +21.8)
- Looks Like It Worked (Month +17.2)
- Further Pain Improvements (Month +15)
- Significantly Lower Pain (Month +14.4)
- More Thoughts About MMJ, Meds & Pain (Month +13)
- +1 Years and Counting! (Month +12.6)
- Better & Better (Month +11.5)
- Major Pain Improvements. Finally. (Month +10.6)
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- Sliding Sideways ( Month +9.2)
- Pain, Pain, Go Away! (Month +8)
- Doctor: MS in Remission! (Month +6.75)
- Neuroplasticity (Month +6.1)
- Hopefully, My Last MRIs, Forever (Month +6)
- Chemobrain (Month +5.2)
- Kickin' and Screaming (Month +5)
- Month +3.7 Progress Report
- Fresh Foods Welcome! (Month +3.2)
- Thoughts About Pain (Month +3)
- Making Good Progress (Week +12)
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- Walking Towards Improvement (Day +54)
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- Less Pain Lately. Horray! (Day +25)
- The Highs & Lows of Recovery (Day +22)
- Homeward Bound (Day +12)
- Treatment Complete (Day +11)
- Final leg of the procedure (Day +10)
- Healing fast! (Day +8)
- Neutropenia (Day +6)