Fall poplar and pine trees, lining a dirt road covered by yellow poplar leaves.

Giving Thanks: One Year After Diagnosis

Image of fall poplar and pine trees  lining a dirt road covered in yellow poplar leaves with orange tint coming through transparency of the photo. The text is in white with a quote on gratitude by Melody Beattie

One year ago, I was really a mess.  I had just been diagnosed with Fibromyalgia after my general practitioner had exhausted all the tests to see if there was any other explanation for the ongoing, roving pain, extreme exhaustion, and mud-thick, brain fog that had taken my ability to function anywhere close to my normal.

I have been reading through my blogs, taking the time to really relish in where I am now.  I am now off of Cymbalta and many of the frantic supplements I started right away and have slowly worked on weaning to find out if indeed an improvement came from them.  I feel that I’m honing my personal daily protocols that work for me.

In the past few months, I am seeing more of my “normal” show up again for longer and longer periods.  Most days, I’m waking in the morning with the ability to get up right away, clear-headed, and excited about the day.  I’ve been able to make plans more and more with fewer and fewer times of having to through in the cancel-towel. I have returned to the classroom (planned ahead substitute teaching) that has energized me rather than depleted. I have been able to write, thinking through a complicated plot for a fantasy novel I’ve been wanting to write for years.  I’m able to play with my granddaughter and have fun with my family.  I am reclaiming my sense of humor, gratitude, and joy more and more.  These things were not in me last year at this time.

A group of women, dressed in winter gear, walking on a in a row through a leaf covered forest floor.
I’ve connected with a wonderful group of women
who get outdoors together a couple of times a month.


To get here, I have done constant work on figuring out what it was I needed to get back to me. First, thanks to my school district allowing me to use all my saved up sick-days from 26 years of teaching, I went onto long-term leave from 12/7/18 until I retired in June 2019. While this was actually really devastating for me personally and professionally, it was what I needed. With the gift of time, I was able to work on taking care of myself. While I will explain where I’m at right now with my daily protocols, I will let you go to my blog No Stone Left Unturned to see most of what I’ve tried during this past year.

Me taking a selfing in front of a math poster in a classroom that I'm substitute teaching in.
Loved getting back into the classroom
even though high school math isn’t my forte.


One thing, though, I have also learned, is that this is a journey I had to do. There is/was no one who could give me exactly what would work for me just as I can’t give you what will work for you. Thus, thorough research, reliable sources of information, and then the trial and error method seem to me to be the only way to find out what is needed for each individual. Unfortunately, there is no one cure, or it seems even one cause or type of Fibromyalgia.

A pile of fall oak leaves burning and smoking in a bricked fire pit.
Raked leaves for a few hours last week; however,
I may have been pushing it too far.
It felt great doing it, but I was pretty down and out the following two days.


What seems to be working for me and am currently implementing/using:

Supplements

Prescription Medicine

  • Estradiol 0.1MG vaginal cream (2x per week) I’m officially in menopause.
  • Vyvanse 30mg (1X per morning) I was diagnosed with moderate/high ADD 5/2017 and have been taking this ever since. I do go without some days but I do find my thinking to be more scattered.
  • Fluticasone 50MCG/ACT nasal spray 2 puffs per morning (I have a few of the mention MCAD issues listed in the article linked above; this is one of them. Constant nose gunk w/small nostrils=hard time breathing through my nose.

Over-the-Counter

  • Prelief (for bladder pain) I haven’t taken this much, but I do have it on hand.
  • Bayer Back and Body (2 pills every six hours as needed). I really have cut back on this. Several days none at all with the most at two times per day (like the two days after leaf raking).
  • ZzzQuill (1 pill at night as needed) I really don’t take this much. Now and then, if I really want to attempt a solid night’s sleep I will (1-2 times a month). However, it doesn’t always work. Two tends to make me groggy in the morning. I still am having the on and off again ability or lack thereof for sleeping.
  • Mary’s The Remedy 1:1 (300mg CBD/300mg THC) .25 ml via dropper at bedtime. (I’ve taken this when I’m not doing as well. So far, 5 times total. It does seem to help lift my sadness that I get when I’m foggy and tired and possibly helps lessen pain but not majorly. I do feel a bit “odd” but I can function decently. I am taking the lowest dose recommended thus far.) As explained in my blog, Down The Rabbit Hole: Could Medical Marijuana Help? I have obtained a medical marijuana card. However, after trying edibles and the oil, it’s not a favorite go-to remedy.

Self-Help Apps

  • Pathways-This is a neuroplasticity program that uses Cognitive Behavioral Therapy, meditation, and education to help lessen or even eliminate pain. I’ve been using it for about a month. It’s got some good stuff. You can try it free, enough to figure out what it is. After that, it costs. I did go for the year subscription of $69.00. I’ll write closer to the end of that time what I think of the results.
  • Daylio– This is an easy mood tracker diary. I’m finding it helps me to be more grateful and positive because I can literally see a graph of my ups and downs and really, I’m having way more ups than downs. This time last year, I was so down. However, I wonder if I had this then if I wouldn’t blanket that first few months as complete bed rest and depression because I would see I had some better moments.
  • GaiaYoga routines of all types, focus, levels, and durations. Also, guided meditations and other health and spiritual documentaries, films, series, articles.
  • Calm- I’ve tried this and see it’s benefits; however, I get the same from Pathways and Gaia.
  • The Tapping Solution: In the link provided is a video that can show you specifically what tapping is. The short version is that you literally tap gently on certain areas (mostly on your face), as you speak on what your area of concern is. The app is a guided meditation that helps you work through the issue your focusing on all the while using deep, slow breathing. I use this as a form of “active” meditation, working on a specific area of need. I don’t really know how to explain how/why it works, but it does help me (mostly with the anxiety and brain fog).

Daily Actions

  • Yoga: gentle, yin, restorative
  • Breathwork & Meditation
  • Myofascial release with ball and roller
  • 30 minutes of cardio
  • Resting as needed
  • Mostly vegan meals

Weekly Actions

  • Gentle chiropractic therapy with massage therapy
  • Journaling/writing for reflection
  • Connecting with others

As needed

After Guest Teaching for a full day last Thursday, a 3-mile hike with friends on Friday, and raking for a few hours on Saturday, I found that I was really worn out, brain fog, and higher pain on Sunday and Monday. So, as my body demanded, I rested. This does get me down, but I’m working on being grateful even during that time. Grateful for the days that preceded the low point. And grateful for the time and support from my family and friends when I need to lay low for a while. Come Tuesday, I was back at a full day. (I subbed in the HS math class and had a blast and then came home and worked several hours on writing my novel.)

Taking care of myself takes planning, money, effort, time, and willpower (all of which can slip now and then causing negative consequences). However, I’m beginning to have more energy, clarity, pain-free time that I can now participate in the things that bring me joy. I am so full of gratitude for this life of mine. I’m so grateful for this nervous-system that has worked on overdrive for so long trying to protect me. I’m so grateful for this body that lets me know what it needs (even to the point of causing me cravings for spinach, grapefruit, peanuts, etc.). I’m so grateful for my loved ones who give me the extra I need to let me this is all worth it.

I have found that gratitude, even in the hardest of times, allows me to FULLY live despite pain.

“Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow.”

Melody Beattie, author

I wish you a joyous, gratitude-filled THANKSGIVING. I love to hear about your journey, your protocols, your process. Also, what are you grateful for?


teal line drawn waterlily with teal lettering of the title and motto

 

No Stone Left Unturned

When I hit my lowest and went to my doctor, he wanted to prescribe me Cymbalta. I refused it. I had already researched the FDA-approved medication for Fibromyalgia (FM) and was terrified after reading the many horrible reviews. (Cymbaltareviews) I talked to my family. I cried and refused. I was actually scared.

I’ve since realized why. My mom was hospitalized for the first time in Kalamazoo Psychiatric Hospital in my sophomore year of of highschool in 1980. Her second time, that ended up being a permanent situation, was only a year later. She was being treated for bipolar and schizophreniawith very serious medication.All I could imagine was being in the zombie-state that I remembered from my visits. Scared me silly. However, on December 7, 2018, I knew that I couldn’t handle without some help I agreed to go on a low dose of 30mg of Cymbalta.

Before resorting to prescribed medication, I did try many suggested remedies: yoga, Reiki sessions, a chiropractic session, professional massage, supplements, hot tub, heating pad, myofascial release, over-the-counter pain relievers, Tapping (EFT), and diet changes. I didn’t try pain-relieving shots (like Lady Gaga has) nor acupuncture (due to insurance not covering it). Some definitely helped, others were positive experiences but didn’t seem to change anything, a few didn’t do anything, and one actually hurt me.

  • Yoga: I had practiced yoga for some time but hadn’t been doing any for the past couple of years due to my hour drive to work which led to a 10 workday. On the weekend of Thanksgiving break, I went to a local yoga studio on the recommendation of a friend. It was for a two-hour breathwork workshop. That one visit made a huge impression on me. I knew I found a healing place, a welcoming place. This practice with these people and this teacher has been the single most helpful thing in combatting my Fibromyalgia (FMA). I’m going 2-5 times a week. My insurance does not cover this.
  • Reiki: After the breathwork class, I decided to sign-up for three Reiki sessions with the owner of that yoga studio who is also a Reiki master. Much of her approach in her studio’s ambiance, class structure, and her overall life philosophy ties into this system. After some sharing of my situation, I laid down supported by pillows and covered by a blanket and weighted eye pillow letting my eyes fully relax. After the session, I felt good. Not pain-free, but not painful. I felt positive and light. I haven’t gone since mostly because of its cost. I do believe this led me to a deeper look into my emotional state which has definitely helped heal and grow. My insurance doesn’t cover this.
  • Chiropractic Session (no link due to not recommending): I only tried one, so that probably tells you something. The website listed FM as one of the conditions they could treat. After the neck crack (I realize there’s more than one type of chiropractic treatment), I ended up hurting way worse than when I had arrived. Won’t be going again. My insurance did cover this, but I still had a fairly large copay. *Since I first wrote this, I have gone to another chiropractor. She spent an hour going over my history. Then, she to spin Xrays and came up with a plan. A medical-massage was included from that point on after each 15-minute session with her. The two combined really loosened my neck and shoulders which had been plaguing me for months. I paid $30 out of pocket for 15-minute chiropractic correction and hour-long medical-massage. That was such a wonderful deal!
  • Professional Massage: I found a business card for A Bridge to You Massage Therapy hanging up on our yoga studio bulletin board. The professional masseuse came highly recommended by my fellow yogis. The atmosphere, music, and massage bed felt as if I was in a warm cocoon in a field of flowers-which is saying something since it was in the deep part of January. Claire uses some Reiki during the session besides the wonderful, calming massage. She talked about how a gentle massage (unlike the bruising deep massage I had been frenetically doing to my legs and arms) brings the neuro-system from sympathetic to parasympathetic in about 20 minutes. This helped me tremendously for about a week during some of my hardest times. I would go once a week if I could afford it. My insurance doesn’t cover this.
  • Tapping/EFT: In mid-February, as I was researching ways to calm down the pain through meditation, I stumbled on The Tapping World Summit 2019 the first speaker I listened to wasIyanla Vanzant, and after, I did the tapping session. It did work to calm down the pain. I’m not fully sure I believe that tapping on the meridian points is what makes the difference, but I do know it helps. I think it was because of the mindfulness/meditation one does through the tapping.
  • Supplements/Diet Changes: So, I did an elimination diet, not as scientifically as I should have by adding in two foods instead of one a couple of times. After a week of being off of all: egg, dairy, gluten, caffeine, sugar, nuts, corn, tomatoes, citrus, alcohol, processed foods… It was tough, but sure learned unique ways of making pretty good foods. The problem was, I really had no findings with the exception that I already knew I am very lactose intolerant. I’ve kept off of dairy, caffeine (mostly), lower in sugar intake, and lower in any processed foods by a good bit. Adding in supplements was really pushed by many: turmeric, ginger, vitamins D, B12, and E, SAM-E, and magnesium-malate. The only ones I’ve kept are D3 and magnesium-malate (the # of pills and the cost was just too much to maintain and I really didn’t find a difference with or without.) A doctor (who I have come to respect and trust) has said in his written article that the only supplements he’d recommend are magnesium and SAM-E.I stopped taking the SAM-E because it made me too jittery; however, it did help with fatigue and brain-fog.
  • Heat Therapy (Hot Pad and Hot tub): These have worked pretty well for intense short-term relief. My husband and I had always dreamed of a hot tub at our new home. When I got some refunded money from the state, we bought a six-person tub. That was fall 2018. I was diagnosed at the end of November. What kismet!
  • Over-the-counter Pain Reliever: The only pain reliever that seems to help me is Bayer: Body and Back pain reliever (aspirin w/caffeine). I’ve tried ALL the other types. Just didn’t do anything. I have also tried CBD via capsules and gummies. I really didn’t find any difference. I did feel more groggy, so I stopped. I haven’t tried marijuana (it has just been legalized), but I’m not opposed to it if I should need it and it helps.
  • Myofascial Release: This helps. I do this fairly regularly after heating pad to simulate massage. However, it can be easy to make it too intense. If I do it too forcefully, it can cause a flair in me.


I tried most of these things before agreeing to take 30 mg of Cymbalta daily. I went up to 60 mg after four months. I have now weaned down to 30 mg again after 3 months and am going to try to be off of it entirely in one month. I will then see if I can manage my pain and other symptoms with the new techniques I’ve learned through my 10 week FM Bootcamp training I had at Mary Free Bed (more on that later).


There are a lot of suggested treatments for Fibromyalgia. One can go broke trying all of the things people say work. It’s confusing because what works for one person doesn’t necessarily work for another. Finding what our best path is a game of trial and error.

What are your guiding factors for whether or not to try something? Have there been things that definitely work for you? Have you wasted money on anything?


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