Imagine your neck muscles doing the twist and a near constant head tremor. Or having a permanently flexed trapezius muscle.
That’s what cervical dystonia feels like. Every. Single. Day.
Imagine you were in this kind of pain every day while trying to function as a spouse and special needs parent.
That’s my reality. Although it’s the third most common movement disorder after Parkinson’s and Essential Tremor, most people haven’t heard of it. It’s incredibly frustrating and while my family and friends are supportive, I do get my share of stares and insensitive comments when I’m out in public.
Dystonia treatment options are limited to Botox in the muscles and oral meds of varying effectiveness and potentially dangerous side effects or DBS neurosurgery. (At this point I have not pursued DBS surgery because it’s not a cure, I don’t have anyone on my plan locally to see and I do not wish to put my family through any more stress than they already experience. But I’m not ruling it out if the opportunity became available in the future.)
This is what smiling through pain looks like. That head tilt…that’s the position it was in all the time. The pain was indescribable. I was incapacitated and mostly in bed and on my couch for nearly a year.
I’ve tried quite a few oral meds but never stayed with the majority of them for long because I was leery of potential addiction or mind altering side effects(for instance, some Parkinson’s meds can cause compulsive behavior issues like shopping or gambling.) I’ve tried holistic measures of every kind. Limited relief is the best I can get. Most evenings, the spasms begin and I really have no choice other than to lay down to get the muscles to relax.
I’m a person with 30 years of sobriety and I support Yes On 2 for the legalization of medical marijuana in Florida. This has been hard for me to talk about. It isn’t about a high. Medical marijuana is a safe and effective form of pain relief that is less toxic than benzos (like klonopin) which do work for me but I have to take them sparingly because of addiction potential.
A few months ago I learned that the first medical marijuana patient in Florida shared my diagnosis and that I would probably qualify for it. After spending some time speaking with other people in recovery and the inevitable Google research on “sobriety and medical marijuana” I’ve come to the following conclusions:
*Twelve Step fellowship state that it does not have an opinion on outside issues, and that they are not doctors.
*The only form of legal medical marijuana I can get in Florida will be the low THC variety but that being said many patients need access to the whole plant. The law needs to be expanded to include everyone who needs it.
*I’ve read a number of accounts of twelve step fellowship members with MS and Parkinson’s who got a medical marijuana card and it has not impacted their sobriety. That being said, every person in recovery must evaluate their own motives for seeking a prescription.
*I’ll continue to do my yoga, pool work and other holistic modalities that have been proven to help. I’ll also continue to practice my daily spiritual disciplines and recovery program as well as daily self examination.
I didn’t get sober to sentence myself to a lifetime of pain and suffering. Untreated, relentless chronic pain can lead to other health issues, not to mention depression and anxiety which is risky for me. If medical marijuana can help me better function as a person, a wife and mom as other dystonia patients are telling me, why would I choose ongoing chronic pain?
In the dystonia community, there are occasional suicides that I’ve become aware of. It’s not hard to understand why this happens. The ongoing pain is vicious. Dystonia patients usually become disabled but struggle with getting diagnosis, treatment, support and disability. With my own history of depression and anxiety, I’ve made it a priority to let other people know what’s going and to practice spiritual disciplines that are helpful to me such as prayer, devotions, yoga and mindful living.
This is my story and my journey. To be true to my recovery program, I’ve decided to be honest about my decision for the benefit of other chronic pain patients in recovery. If you are a chronic pain patient, please talk your feelings and options over with your doctor and trusted friends in your fellowship or spiritual community.
Postscript: Amendment 2 passed in Florida in 2016 allowing medical marijuana to be used for certain conditions. My condition (cervical dystonia) had already been approved so I was able to obtain my first order shortly thereafter. I’m presently using CBD oil in capsule form with very minimal THC and am experiencing noticeable relief from my daily muscle spasms and head shaking.