Hypermobile Spectrum Disorder and Cannabis.
Warning: Pain is a very complex topic. All views held here are mine.
Pain is an incredibly complex topic that always needs to be handled delicately. The conversation today is about my personal struggles. What works for me may not work for you.
Its so important to know that Ehler’s Danlos is very much a spectrum disorder. You may have 100 people with the same subtype but our pain levels, symptoms, etc. are all very personal. We may have some overlap but how we all present can be considerably different for everyone involved.
What is Ehler’s Danlos?
Ehler’s Danlos (EDs) is one disorder on the Hypermobility Spectrum Disorder’s list. EDs is defined as a group of inherited connective tissue disorders that causes tissue and joint fragility due to a defect in collagen. Patient’s within this spectrum tend to have loose joints, fragile skin, fragile body tissues, difficulty healing, neurological issues, gastric issues, hematology issues… you get the pattern.
This disorder literally touches every aspect of your body since you are made from fragile tissues that were not composed correctly. You may heal slower or with complications. You may have issues completing simple basic tasks due to dislocation or you may have other more common issues or complex like I do.
Pain.
One if the most common thing I hear from most of us who have this terrible disorder is pain. Pain is incredibly wide spread with multiple systems or multiple locations at the same time. Muscle Pain. Joint Pain. Achy. Throbbing. Miserable. Most of the time, your doctor will send you to pain management who will medically treat you with medication, steroids, etc.
So what do you do when you’re allergic to most forms of opioid pain meds? What happens when steroids are not indicated in your care?
I have been here a very long time. I had an allergic reaction to a pain med when I was 15. Then at 29, a more serious reaction happened when I had my gall bladder removed. I was given epi and was woken up quickly. Testing showed that I have Mast Cell Activation Syndrome which means my allergies over react. Something that would typically cause a minor rash or a minor issue would make me go into fully blown anaphylaxis. I developed dermographia.
Enter Achy. Leave Happy.
I smoked from a young age because it gave me the ability to live. Cannabis was just helping my anxiety that I have had since I was a child. My pain levels would spike on and off through out my childhood and adult life. I gave myself a stomach ulcer from the Aleve and Ibuprofen I was using.
The worst part was the pain truly never went away and I was in a corporate job. Drug testing could happen at any moment in time. Walking across the floor at this point was a difficulty. I was growing concerned that a fall at work would prompt a drug screen at any moment.
I stayed completely sober between the hours of wake up and when I got home from work. Starting at 6:30 am, I took a handful (6 pills) of Aleve. I showered and dressed for work. I could barely move until about 10 am. Cold days or days that would provided little movement made that time extend out to noon at best.
Then September 4th happened. 10:10 in the morning. My White Rabbit moment. Life changed in a matter of second. I was given a 20% survival
A heart attack can and will happen at anytime. I can still feel how tight and painful my chest was. The jaw pain was unlike any other pain I have ever experienced. Suddenly, I dissected. That would be my last day of work.
Syddy, this is supposed to be about EDs and pain control!! I’m getting there!!
The Research
I started noticing that being home I was smoking more. The Aleve stopped by Sept 15th. I noticed that if I took a couple tokes before getting out of bed, I was able to shower, make myself food, and let dogs out with little to no pain.
If I smoked a little after brekkie, I could read, watch TV, I could almost do something without focusing on my pain. The dermographia also resolved.
Cannabis reduces pain levels in most chronic pain patients as well. Most patients are shown to have a reduction in prescription pain medications as well as a reduction in missed plans. This study also shows that cannabis is efficient at reducing multiple types of pain at one time. This is especially important as most patients with Ehler’s Danlos live with widespread, multiple system pain.
There is research coming out showing that cannabis acts as a mast cell stabilizer. This research is starting to show how mast cells act in the body and the best way to control outbreaks and flairs.
We are also seeing some research some out reguarding use in autonomic dysfunctions such as pots.
“On the other hand, cannabis can influence the endocannabinoid system that interacts with the ANS to help with nervous system disorders by maintaining balance, increasing appetite, reducing inflammation, anxiety, and possessing antiemetic properties that may help with nausea and vomiting.”
What does this mean?
Stop the pain, MCAS, or Autonomic Nervous System Dysfunction cycle, you may be able to stop other issues from flaring. Stopping just one could bring so much relief. One of the most helpful to me is that my heart rate seems to stabilize and I do not get as dizzy as quickly.
There are a million articles posted about EDs, ANS, and MCAS yet we still don’t know enough.