Out of the Rabbit Hole: CBD/THC Oil for Fibromyalgia

"Rabbit hole is a term used to refer to a bizarre, confusing,
or nonsensical situation or environment,
typically one from which it is difficult to extricate oneself." lexico.com

Those of us with Fibromyalgia (and those treating us or living with us) quickly come to understand that it is a bizarre, confusing, nonsensical journey.  I have pain where I am not hurt.  One day it'll hurt all on the left side of my body for no reason that I can identify and the next day it's completely on my right side.  I have energy one minute and feel like I'm wearing lead boots the next. I am so tired all day yet keep myself up and about until bedtime, and then at bedtime, I'm awake and clear-headed having no ability to fall asleep. 

We also learn that this bizarre journey is really one we must go on our own.  There is not a one size fits all treatment for Fibromyalgia Syndrom (FMS). Slowly and not at all straight forward, I am finding my way out of the confusing, dark tunnels and into the light of being able to manage my symptoms.

At the end of July 2019, I explained how I had gotten to the point of wanting to try medical marijuana to help me manage my FMS symptoms. I was just coming off of withdrawal from Cymbalta (one of the three FDA approved prescription drugs for treating FMS).  If you haven't read it, it would be good to read: Down the Rabbit Hole: Could Medical Marijuana Help? 

First Time

Each container of 10-10mg gummies
cost $16.

I have no affiliation or kickbacks for mentioning these products.  
I am writing about my experiences only.

Just after getting a Michigan Medical Marijuana Permit (under the category of chronic pain), I decided to go to a local dispensary. My research on Leafly.com was helpful; however, the dispensary didn't carry what I had thought would be the best to try as reviewed on their site. I knew I didn't want to smoke or vape.  So, I decided to go with Wana edibles (sour watermelon and sour blueberry).

I was nervous about going to this new world of a cannabis dispensary and didn't quite know what to expect.  However, my nerves were calmed by the professional environment and the friendly people who worked there.  I stressed that I didn't want to feel "high" nor did I want to sit stoned on the couch craving munchies (all stereotypical ideas I've gotten from movies, etc). They steered me towards the two above edibles, one for day time use and one to help me fall and stay asleep.  

That first day, I decided to heed all the warnings to try just a bit, so I cut the "gummy" into halves. The directions say: Start with a low dose of 5-10mg (cut in half for 5mg). Wait at least an hour to feel the effect before consuming more product. Around 2pm in the afternoon, I ate the sour watermelon hybrid of sativa and indica half piece. The hybrid is supposed to give a more balanced effect. I was hoping for less pain and clear-headed energy. One hour later and beyond, I felt little difference besides a bit of light-headedness.  

That night, I decided to take the sour blueberry which has indica strain (which helps with falling asleep).  Because of the lack of noticeable effects, I took 10mg (so a whole piece) around 9:30 pm (so 7 hours after the first 5mg).  From what I've researched, the effects of edibles stay in the system for 6-8 hours.  So, possibly, I didn't quite wait long enough for the other to be fully out of my system. Or, the indica THC just had more of an effect on me.

I did fall asleep in short order.  However, I woke up, around midnight (just about the time the THC would have been highest in my blood system), to a scary sensation.  I felt like I was going to forget to breathe.  It felt like I was just going to stop.  Also, time felt out of whack.  This disorienting feeling lasted for an hour or so and then I fell back to sleep. 

I hate feeling out of control.  So, I put the gummies away and haven't tried them again....yet.

Two Week Trial

At the beginning of February, I found the tincture I had also bought at that July hid in my nightstand drawer.  It was recommended by the person working at the dispensary as well as leafly.com: Mary's Remedy by Coltyn (CBD/THC 1:1 tincture) for pain relief and help with sleeping.

Mary’s 100mg CBD:100mg THC tincture creates the “entourage effect” and utilizes a unique terpene blend that has the potential to reduce inflammation and improve digestion. The Remedy 1:1 by Coltyn utilizes a graduated dropper for accurate dosing. Just 0.25mL constitutes a dose, and there are about 45 doses per bottle.

I took the .25mL sublingually (under the tongue) before bed for two weeks. I'll be honest, the taste seemed like castor oil meets olive oil, so I quickly learned to wash it down with water.

This resulted in a solid night of sleep each night (fell asleep fairly quickly and stayed asleep). Those of us with FMS and other chronic pain issues know that sleep can be one of the major things affected. As my physical therapist says, "Sleep is when the body heals." So, loss of sleep compounds issues.

I also noticed less pain during the morning times (amped up again in the afternoons) as well as generally clearer thinking.  I did notice that if I took an additional dose in the afternoon (say by 1pm), I ended up getting a bit groggy.  I didn't try that out on a consistent basis, which I plan to yet do.

Results from my Informal Experiment

After the two weeks, I decided to not take it and note what changes I had.  I ended up doing this for only three nights.  That's because I had three nights of little sleep.  I took it the fourth night and slept soundly again.

Positive:

• Sleeping soundly. (By taking .25ml of Mary's Remedy by Coltyn 1:1 at 9:30, I've been falling asleep about 10:30 and sleeping until 7:30. If I do wake up to pee, I have been able to roll back into bed and go to sleep.)
• My head seems to be clearer during the day.
• Less pain in the morning.
• My overall mood is lighter.

Negative:

• If I take it during the morning or afternoon, I tend to get groggy.  However, I didn't try this consistently yet to notice if it was those harder days I took the extra, so the fatigue, weakness, foggy brain were already there, or was it from the chemicals of the CBD/TCH reacting with my body's makeup?
• It costs $45 a bottle ($1.00 a dose).
• It's not readily available in my area.

I did run out of the Mary's Remedy by Coltyn, so I ended up getting a bottle of Mary's full spectrum CBD tincture (tastes a bit of cinnamon) and Mary's THC tincture (tastes lightly of lemon). Using the measuring droppers (the CBD tincture didn't have a measuring dropper so I traded it with the original bottle's dropper).  I ended up taking .25mL of each before bed and am finding the effects to be the same. I have not yet tried it during the day, nor in the past few days felt I needed to.

Mary’s concentrated tincture is an easy way to add CBD to your daily wellness routine. With organic full-spectrum hemp extract with naturally occurring cannabidiol and THC, nutrient-dense sweet almond oil, hormone-balancing myrrh and the warmth of cinnamon oil, this soothing blend helps provide physical and mental relief. The Remedy packs 250 servings into just a half-ounce bottle, and each drop contains a 2mg dose of CBD. (Nut allergy)

Free of synthetic additives, Mary’s highly concentrated 1000mg THC tincture is made with high-quality, full-spectrum THC extract and comes in a lemon-lime flavor. Sublingual delivery of THC is easy to use, discreet and convenient.
Only available in Michigan and California.

As I am not a doctor and at this point don't have a doctor's guidance on this (I've let all my doctors know I'm doing this but they haven't weighed in at all with any advice), this is a report for how using cannabis has effected my Fibromyalgia symptoms.

Here are a few of the resources that I've used to help in my choices:

• Safety and Efficacy of Medical Cannabis in Fibromyalgia

"Our data indicates that medical cannabis could be a promising therapeutic option for the treatment of fibromyalgia, especially for those who failed on standard pharmacological therapies." 

• Study Finds Cannabis May Be Suitable Treatment Option for Fibromyalgia

 "Medical cannabis appears to be a safe and effective alternative for the treatment of fibromyalgia symptoms. Standardization of treatment compounds and regimens are required." 

• How Much CBD Oil Should I Take?

"If you’re trying to treat a situation involving pain, like chronic back pain, chronic joint pain, or recovering from a chronic illness, you may need a good bit more CBD, and the thing to do is titrate your dose up. Start with a lower dose of 10 to 15 milligrams, and increase it from there."

• How Long Do Edibles Take to Kick In?

"When taking edibles for the first time, start with a small dose and work your way up to a dose that produces the desired effect."


What are your thoughts or experiences with using cannabis for managing Fibromyalgia symptoms?  I'm hoping now that cannabis has been legalized, that there will be more research about its uses as well as educated doctors for guidance. 

Thank you for visiting my blog today. 

I am committed to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes I have to listen to my body and am not able to follow through as planned.

Thank you for your understanding.

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Sleep, Fog, and Vampires

N.B- I do not own the rights to this image. It’s been circulating in online support groups.

I'm struggling to wake up this morning.  Last night at 2:30 am, I wasn't though.  I almost got up to write at that time because, well; I might as well use the time as I have it. However, I did stay in bed and fell back to sleep after a couple of hours.  Yes, I scrolled through Facebook, which is on my list of things I should not do at night if I want to sleep.

I have had a pattern of two-three nights where I just can't sleep.  Catch a few hours.  Not sure how sound, either. Then I'll have two or three good nights of sleep.  For the past few months, though, I'm still waking up at 7:00ish, coherent and energetic. Today, not so much.

I hate mornings like this.  My body is definitely winning over my mind.  I've been "awake" for 3 hours now.  Still barely moving, barely able to think.  I explain to others that I feel a thick fog taking over my brain, rusting the works.  Then, in this foggy state, an invisible vampire comes and drains the energy out of my limbs, leaving them limp and heavy.  I lie there.  That's when I call for Kelley to get me my meds.

Kelley went to our local pharmacy to pick up my prescription for Vyvanse that I should have done yesterday. It does help me- a lot.  Last spring break 2018 (before the Fibromyalgia diagnosis), I was whimpering at home because I was so listless and filled with anxiety and not being able to think clearly at work. It was the most challenging group of students my partner teacher and I had ever had.  But it was definitely more than that.  Teaching, which had rolled out of me naturally, allowing me to improvise easily and be fun in class, was not there anymore.

My own children, who were both diagnosed with ADD in college, after hitting the wall with demands that pushed them to their limits said to me, "Mom, you're the same as us.  You need to go get  tested."  So, bringing Kelley for moral support with me to my appointment with our new general practitioner, I expressed my frustration to him. "This is not me!" I remember saying. A caring doctor, I could tell he thought that I was just a ball of nerves needing a higher dose of Lexipro, replied, "Since you have this in your mind, let's have you go for testing to my friend who's a psychologist."

I met the next week with the Ph.D. psychologist, filling out several questionnaires, and having a talk before the computer test for ADHD.  Some of the questions, about my childhood and schooling really didn't fit.  I don't remember much about how I did things back then, but I have never felt disorganized and dreamy. However, after taking the test which consisted of correctly clicking and not clicking when a certain shape came up, I found out that I was moderate to moderately-high ADD.  The doctor congratulated me on my coping skills for the past 53 years.  The next week, I started 30mg of Vyvanse every morning.  I went for a retest a month later and took the same test but on the medicine and past with flying colors.

Then, the pain hit just a few months later.  I have wondered about the connection.  I've found different theories.  This one presented at the annual meeting of the American Academy of Pain Management, April 2018 seems to sit right: Study Finds: People with Fibromyalgia May Also Have ADHD  As it states, "The concentration and attention issues....can be a big deal for some patients....sometimes more disabling than the chronic pain..."

The combination of magnesium-malate, SAM-e, and Vyvanse has helped me write this on our deck this morning.  My brain is starting to win over my body.  My limbs have traces of energy moving back in.  Good thing- because it's a beautiful day and we get to meet up with dear friends we haven't seen in quite a while.

I find that learning from others really helps.  What does it feel, your times of insomnia, Fibro Fog,  and loss of energy?  Is it your main issue or is pain your main obstacle?  What do you do that helps if there is anything? Is there anything that you do that causes you to have worse symptoms? I'd love to hear from you; we can learn from each other or at least find a friend that understands.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes I have

to listen to my body and am not able to follow through as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email