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By Dawn DeBois
LEMme Tell Ya Lambert Eaton News 

SERIES: Cannabis And Dawn DeBois LEMS Pain Managment

When Dawn was diagnosed with Lambert-Eaton Myasthenic Syndrome in 2016, she realized how lonely it was not having anyone to talk to that understood her illness

 
Series: Cannabis Relief For LEMS | Story 2

Last updated 6/4/2020 at 7:09pm

Image by Tumisu from Pixabay

This is part two of a two part series from Dawn DeBois and KayaHub Examiner. When Dawn was diagnosed with Lambert-Eaton Myasthenic Syndrome in 2016, she realized how lonely it was not having anyone to talk to that understood her illness. Her goal with 'LEMme Tell Ya' is to let that be a conversation about LEMS that other patients can look forward to each week. Dawn will share her own stories of being a LEMS patient and one who also deals with having an invisible illness along with multiple autoimmune diseases. Dawn's prior work experience in pharmaceuticals and public health education is what led to her desire to educate others about her ultra rare diagnosis of LEMS. This desire, combined with her love of writing, led to her blog, The Battle Within. Dawn is also a contributor for TheMighty.com. When able to, Dawn volunteers for various pet rescue organizations. She has three adult sons and resides in Maine with her own rescues: a pug, Rocky, a beagle mix, Anna, and two cats, George and Wylie.

Pain management with cannabis takes conscientious planning when using the inhaled product. I learned quickly how little it took to relieve my breath-stopping pain. But while a few puffs relieved the pain, a few too many relieved me of all responsibilities for quite a few hours, at least in my mind.

I don't like the feeling of losing control of my faculties, and I have never used weed or any other mind-bending substance as an escape. I can count on one hand the number of times I've been drunk in my lifetime, and I can count on the same hand the number of times I've been stoned. Using cannabis for pain relief doesn't mean I walk around in a haze. I use it strategically and responsibly.

Soon after intravenous immunoglobulin treatments proved successful in managing my Lambert-Eaton myasthenic syndrome (LEMS), I became concerned that my pain levels might increase because my nerves and muscles were communicating better. I shared that concern with my rheumatologist at a biannual appointment. Because intravenous immunoglobulin treatments are tough on the kidneys, I asked what she thought would be best for pain relief for the severe arthritis in my back and hands.

"Medicinal marijuana," she responded before offering to set up an appointment with a pain management team that could provide a medical marijuana card. She noted that other options besides smoking it were available, such as tinctures and edibles.

Maine, the state where I live, has been progressive about medical marijuana. However, my rheumatologist recommending it and a provider prescribing the card within the practice surprised me. Previously, appointments needed to be made with medical marijuana providers in clinics that only accepted cash.

After arriving at a local dispensary with my medical card in hand, I discussed with the owner the type of pain relief I needed, as well as how I timed cannabis use to avoid having the "high" feeling disrupt my day. He suggested edibles that were part tetrahydrocannabinol (THC) and part cannabidiol (CBD). This way, I would get the maximum pain relief with minimal psychoactive effects. The edibles he suggested were mostly CBD, with just a small percentage of THC. I left with gummies in hand and no idea how much they would change my life with LEMS.

For months, I had been dealing with horrible overactive bladder symptoms. At times I would feel an intense need to urinate as soon as I left a bathroom. The curious part of this symptom was that at a previous job, I sold pharmaceuticals including overactive bladder medication. I felt like I was the patient I used to tell physicians about.

In talking with my neurologist about the overactive bladder symptoms I had been suffering from, she agreed that they were a known neuromuscular symptom of diseases such as multiple sclerosis, myasthenia gravis, and LEMS. However, one side effect of overactive bladder meds is severe dry mouth. The last thing I wanted to do was bring back a LEMS symptom that I finally had under control.

That was before I started taking the mixed THC-CBD edibles. I bought them for pain management, but realized that my overactive bladder symptoms had disappeared, too. The only thing I had done differently in my life was taking the gummies, so I turned to Google to find out what was happening.

I found a study suggesting that CBD and THC could help with bladder issues brought on by multiple sclerosis. It turns out that the bladder has many acetylcholine receptors. The meds for LEMS increase the release of acetylcholine in neuromuscular junctions and slows down the body's processing of it. My bladder was going crazy until I started taking the cannabis edibles that were a carefully calculated percentage of THC and CBD. When I run out of gummies, my bladder lets me know I need to replenish my supply before my pain levels do.

As any LEMS patient would acknowledge, our days are filled with multiple doses of pharmaceuticals to keep our many neuromuscular symptoms managed. I hope that sharing my story of medical cannabis use will not only open some minds to the benefits, but also spread hope for the relief of pain and other symptoms of neuromuscular disease to patients who have had none.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.

 
 

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