Ehlers Danlos Syndrome (EDS), by Jean

I first experienced excruciating pain at the age of 7.  As a teenager, my knees were dislocating, I had muscle spasms and sleepless nights.  I remained active until I was diagnosed with Ehlers Danlos Syndrome (EDS).  After finally finding my way to medical cannabis, I feel better than I have in decades.

After using MinnMed medications for only a few weeks, my walker and cane are gone.  My muscle spasms and pain are manageable.  Since starting medical cannabis I’ve been able to greatly decrease my medications including the use of a Dilaudid intrathecal pump.  It gives me peace of mind knowing that I do not need all of the medications that have been prescribed to me.  Many people who suffer from chronic progressive pain syndrome have “exit plans”.  Even my exit plan for medically assisted euthanasia has thankfully been substituted with a new lease on life and hope for an improved quality of life.

It hasn’t always been like this for me. 

Even though it wasn’t diagnosed until my 40s, since early childhood I have suffered a long list of debilitating symptoms stemming from the rare condition of Ehlers Danlos Sydrome (EDS).  EDS is essentially a collagen disorder and can potentially affect every system in my body.  As a younger person I was very athletic so the effects of EDS caused me to suffer tears in my cartilage, injuries to joints and recurrent dislocations of my shoulders, knees and ankles.  The diagnosis wasn’t discovered until my son suffered a serious ankle injury from a simple sprain that required cadaver ligament graphs.  This injury caused the doctor to ask “who has the joint instability?” The list of related ailments I suffered over the years is extensive, the worst of which have been debilitating levels of pain, muscle spasms and sleeplessness.

The opioid pain medications that doctors have prescribed to me over the past 10 years provided limited pain relief, with many high-risks attached.  My use of opioids ultimately led to chemical dependency treatment, and later, a suspension of my license to practice.  I only wanted to treat my symptoms, but despite never overusing my prescription, the opioids only added to my depression.

My condition doesn’t allow my brain receptors to feel the euphoria that opioid addicts seek, so I didn’t meet the traditional medical criteria for addiction. Nevertheless, the pain left me so depressed and incoherent that I allowed myself to lay on the sofa and give up on life. This caused just as much destruction as if I had been overusing.

Right now society looks at people with chronic pain as a potential for lawsuits due to the risk of abuse, addiction and death.  Ultimately, people like me who have progressive pain over a lifetime are left desperate and without help.  An addiction specialist told me that I had not only been inadequately treating my pain, but that many of my symptoms might also be alleviated by using medical cannabis.  In addition to consulting with this physician, I conducted my own extensive research.

Previously working as a healthcare provider and being an evidence-based medical professional guided by science, I was thankful that a relatively new Minnesota law allowed me to access customized formulations of precisely dosed, pure and safe cannabis-based medications.  Tinctures & vaporizers is the best combination of absorption that matches my body. 

I take comfort in knowing that these medications are made right here in Minnesota by experienced PhD-level scientists.  Within three weeks of adjusting my customized medication formulations with the full support of the Minnesota Medical Solutions pharmaceutical staff, I felt better than I had in years. 

As a trained medical provider, I am confident that this cannabis-derived medication is one of the best caregiving options available. The medicine is safe and I do not have to worry about overdosing like I had with my opiates.

Minnesota Medical Solutions provides their patients with customized care.  They take the time to work with each patient, and factor in each individual’s history and experience. They treat me as a unique person and help me find the treatment that best suites me.

Medical cannabis has helped me treat my pain, muscle spasms, muscle strength and sleeplessness.  My symptoms have the potential to progress in pain over time. I’m not as afraid of that as I used to be because I know I have many alternative options and doses.  It’s life changing!

Based on my own experience, I feel passionately that patients who can benefit from cannabis-based medicines should be allowed to do so unimpeded by regulatory bodies.  They should also be provided with the support they need to afford the treatments they depend on, just like any other medication. My sincere hope is that we continue to take proper steps forward in order to expand options for those in need of good care.

I will continue to require traditional medical treatments for my condition, but I believe that medical cannabis has been nothing short of a miracle for me.  My muscles feel like they are reset and I have gained strength.  I have increased mobility and can enjoy simple things like walking the dog or riding on a recumbent bicycle. This is a naturally grown, earth-given medicinal gift.

I started medical cannabis treatment at the end of July 2016 and I feel like I’ve been given a new life and have new motivation.  Best of all, I don’t need that ‘exit plan’ any more.

Even my exit plan for medically assisted euthanasia has thankfully been substituted with a new lease on life and hope for an improved quality of life.