Striving each day to live FULLY despite the pain of Fibromyalgia.

Sunday, June 30, 2019

No Stone Left Unturned


The blue bolded words/phrases are links for further information. 
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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.  (Cymbalta reviews)  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 1980. Her second time that ended up being a permanent situation was only a year later. She was being treated for bipolar and schizophrenia with 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.  The weekend of Thanksgiving break, I went to a yoga studio, Branch Out Yoga in Fremont.  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 at Branch Out Yoga.  The owner and yogi 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 it's not covered by insurance.  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.
  • 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 was Iyanla 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 D, SAM-E, 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. 
  • 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).

Thursday, June 27, 2019

Gratitude for these Days of FULLNESS


Boy, I've had a great start to the summer.  Well, that is after the first few weeks of June.  Stress  (mental, emotional, or physical strain or tension ) is known for flaring up the symptoms of fibromyalgia (pain, brain fog, insomnia, exhaustion, etc.) significantly.  For me saying goodbye to my 6th grade classes (seeing them for the first time since I'd been off and packing up my books and personal things the last weeks for May) and then on June 3rd, attending the annual SCHOOLS OUT FOR SUMMER celebration at a wonderful watering hole downtown in the big city hit me hard.  I mean shockingly hard.  Yesterday, when telling it to a friend over coffee was the first time I had spoken of it without crying-just a little tearing up.  

Through a Fibromyalgia Chronic Pain program at Mary Free Bed Rehabilitation Hospital, a pain clinical psychologist I've been seeing during the 10-week program has been reminding me that this is a time of change.  You can be said at the end of something and happy/excited about the start to something at the very same time.  Change = stress.  It's normal and okay that I've been struggling.

However, I'm bouncing back this week and have had FULL wonderful days since last Thursday.  This weekend, my husband and I  met with friends we hadn't seen in a couple of years.  We shared memories, shared some joys from our current lives and a few raw sorrows. We sat on the open patio at a brewery downtown Grand Rapids for three hours before the talk and energy ran out.  I've been working out with my daughter at a local spa/gym/rehabilitation on Tuesday and Thursday nights after she's done with work.  I'm going to a yoga studio most mornings; such a great way to shake the rust and stiffness that has crept back in overnight. Yesterday, after yoga class, a new friend and I walked to a local coffee shop to share breakfast and life. Last night, I  sat on a deck overlooking Jordan lake with fellow teachers I worked with 13 years ago, sipping drinks, and sharing stories. The sunshine, breeze, and sparkling water, and great conversation filling me up. I drove home not even tired from the full day. Today, I met with some of my besties from school-first time since the last day. We laughed so much!  The sheer ease of our friendship reminding us that we will forever be bonded.

This is in no way meant to show off.  In fact, it's a celebration that I'm able to do this.  What a FULL week that's filling instead of depleting me.  My creative juices are flowing, and I'm so excited for each day.  Just so many possibilities.  I am amazingly fortunate, grateful for all this chronic condition has helped me to notice the moment I'm in and relish it.  I won't lie, I have to be diligent to use all that I've learned so that my body and mind can function in a healthy way. Listening to my intuition and body is slowly becoming more a part of my instincts.  

My pain doctor from Mary Free Bed has told me that if I continue down the path of taking care of myself, that in a couple of years, I may really have changed from the brain paths that were deep, painful Fibro ruts to fresh, new roads paved in gratitude and a whole lot less pain. 

Monday, June 24, 2019

What's Wrong with Me? Part 2




Bless my doctor.  First off, we had fairly recently moved to a small tall an hour north of Grand Rapids, MI.  I had just changed to him as my general practitioner the year before. After the recent diagnosis of ADD, here I am again, sitting in his office in tears.  I could tell he thought I was just a stressed out mess, but I tried my best to explain that this is all something new.  He brought up the term Fibromyalgia, but he admitted he didn't know much about it.  He ordered thorough blood work and an appointment with an immunologist.  All tests came up with normal results-no issues. My fears of the big C were alleviated.

In the meantime, I began to research all things Fibromyalgia.  I found some good information and some that were pretty detrimental.  One really helpful website has been fedupwithfatigue.com by Donna who explains her own journey-first with Fibromyalgia and then with the additional diagnosis of Lyme Disease.  She has spent a lot of time researching and then sharing with fairly impartial information.  It was her Fibro 101 page that connected me to all sorts of helpful information. (More later.)

Meanwhile, things at work had gotten impossible.  On December 7, 2018, I called in sick.  This was not a usual thing for me.  And in fact, after officially announcing my retirement for May 31, 2019, I planned on getting a nice lump sum of money for all my sick days.  That wasn't meant to be.  After a weekend in bed, I couldn't go in on Monday, then Tuesday, then Wednesday... I contacted my personnel director who let me know that I could go on long-term leave and that I had enough days saved up that I had the rest of the year covered.



This was the hardest thing I had to do-give up control of my classroom after 32 years of teaching.  As desperate as I had become, I knew it was what I had to do. Luckily, a wonderful, young teacher who had just spent the first half of the year teaching 6th grade in our district was available for the long term job.  So, I left my classroom and school community, never to return again.





Sunday, June 23, 2019

What's Wrong With Me? Part 1




Looking back, I see the signs that things in my body had been changing.  But at my age (now 55 this past May), I knew I was in perimenopause (now postmenopause).  I knew to expect changes.  Thanks to my partner teacher and good friend, I read some of the books that she recommended to find out what to expect.

Now, prior to all of this, I had had a diagnosis (and was being treated for) acid reflux (even had the Nissen Procedure) and Interstitial Cystitis (treated with meds, pelvic floor PT, instillations, and even a Botox injection procedure).  I often felt that If I could delete my midsection, I'd be golden.

But then, as mentioned before, the extreme fatigue, foggy brain, and high anxiety started, spring of  2015.  Figuring it was hormonal, I went to visit my gynecologist who prescribed me a  patch of Estradiol  (.0375mg BIW) along with Progestin (QD).  This did seem to work until the fall the next year.  I was bumped up to a .05 patch and a vaginal Estrace cream (BIW). When I still was having the anxiety, she put me on Lexapro (20mg QD). Again, this helped for a time.

The school year of 2017-18 was a rough one on several levels.  Our team of three teachers was cut to two. The class sizes for the group coming up had been at 19 or so.  Being it was a really challenging group since arriving at our school in kindergarten, the size had helped.  However, with two, we were pushed to 30 per homeroom teacher and each of us had to take on subjects we hadn't taught previously.  If that had been all, I don't think things would have gotten so bad.  However, serious life problems for me and my partner teacher kept hitting us one after another.  The final blow for me was when my partner teacher of 16 years got reassigned to a middle school position the last day of school, June 2018.  While I was happy for her because this would fit much better with her life, it ended up leaving me deeply sad (a fact I didn't really register for quite a while).  

My husband retired that June.  For a celebration, we decided to do a trip we had wanted to do for a long time.  We drove out to California the week after school ended.  That's when the pain in my legs began.  By the time we were home, it was taking up much of my attention.  Nothing I did would relieve them.  The pain would move from my hips to my calves sometimes the right side more intensely and then the left.  

By the time school started up again in August 2018, the leg and hip pain was just a way of life. The district had put us back to three sections, meaning I had two new teachers to "train". It was a really bumpy transition (to say the least) which put a lot of strain on me.  The pain started to show up intensely in my shoulders, neck, and chest as well as in the legs as before.  Again it would roam from side to side and up and down.  The pain kept me awake at night and during the day I began a desperate need to massage areas of pain.  People around me definitely started to notice.  I was extremely emotional and anxious 24/7.  When I got home from school at night, I'd crawl into bed too drained to do anything else.  By the time Thanksgiving (2018) came around, I was a completely depleted mess.  And so I went to the doctor.

Tomorrow:  What's Wrong With Me? Part 2

Saturday, June 22, 2019

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 waking up this morning.  Last night at 2:30 am, I wasn't though.  I almost got up to write at that time because, well, might as use the time as I have it. However, I did stay in bed and fell back to sleep after a couple of ours.  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 of 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 awhile.



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.


Thursday, June 20, 2019

One Step at a Time

6:15 this morning, Scout, my grumpy-old-man orange tabby, is stepping on my head as I begin to come out of another dream that involves my alter-ego desperately racing through a maze of sorts (need an analysis of this 😄 ). As soon as he sees some consciousness from me, he begins to pleadingly meow for one of us to get up and feed him-thanks to his hyperthyroidism-getting old is tough even for him. 

As the dream seeps out of me, the reality of my body pours in. This is every morning. Every morning when I feel swollen-filled up with wet sand in my arms, hands, legs, and feet. My body talks to my mind and says, “I don’t want to move. I don’t want to get out of this bed.” It’s a pleading that I spend one half to an hour every morning arguing with. Over and over I say to myself, “Get up. You have to get up.” I’m shooting for 7:00 to 7:15 each day, so that I stay on a routine for sleep. Sometimes, I get up and after a pee and brushing my teeth, I head to the kitchen to take the medicine and supplements that have helped me forge on. (I will post a list and reasons why soon.) On really bad mornings, I beg Kelley (who generally is already up having his morning coffee and getting caught up on what’s going on in the world) to bring me my meds. Generally, it takes about 30 more minutes for things to kick in, and I’m ready to move.

Today is a special day. I signed Kelley and me up for a group trip of hiking and kayaking. It’s the first such commitment I’ve made like this since being hit with Fibro and have actually followed through on. Friends, colleagues, and family know that since September 2018, I haven’t been a woman of her word. This has been really devastating for me. That has always been my motto- What I promise is what I do. However, I have canceled on commitments so many times this past year, I am now hesitant to prearrange anything at all. 

But my heart, my longing, is to do the things I love: hang out over drinks with friends to talk, laugh, and cry, go for a walk in the woods, go to yoga class at 8am (would love to do the 5:30am, but not sure that will happen), commit to a new job, volunteer regularly, learn to play ukulele at Thursdays Flybear Bookshop class, get down and play like a kid with my grand-daughter, Copeland, and so much more. The months of September through February found me mostly in my bed. December 7th was my first day of long term leave from my teaching career of 32 years. Those first few months, I barely did anything but try to be comfortable with heating pad, fuzzy blanket, pillow props, pain reliever, and sleep. I’d hear Copeland laughing and talking with her parents and Kelley in the living room. I’d drag myself out of bed determined to play, too, but soon realized that even just sitting in the chair was just too much for me. I’d slump back to my bed, many times crying uncontrollably for the loss I felt. I felt imprisoned in my own body and couldn’t see any way out of it.

The most debilitating part of Fibromyalgia for me has been the “Fibro brain fog” and the draining of ALL energy. (In a later blog entry, I will talk about what I’ve come to understand about why this happened to me.) In bed, I’d often find myself in a hurtful position and would stay there trying to convince myself to move for several minutes. It just seemed too hard to adjust how I was laying. The brain fog made it impossible for me to really attend to reading, writing, talking. I did start listening to audiobooks which helped me weather the worst of things. This time led to a deep sadness; I never wanted to use the word depression, but that’s what it was (and still is at times). 

This morning, as the rain poured down outside our bedroom window, I reviewed every possible way of canceling (once again) and just staying home. Knowing we had to be ready to leave the house by 8:15 (with all the packing for the day still to go), I was really close. However, my search of the Weather Channel App showed that Mesick wasn’t going to have rain all day. I also thought about the work Kelley had already put into getting the trailer and kayaks ready to go last night, and the fact that this new like-minded group in our area of Newaygo County would be really good to get to know. If I canceled this time, how would I be able to show my face at another time after all the planning and communication that went into this trip? And so, as Kelley woke up and went to feed Scout and Willow, I did my morning routine (well enough to go get my own meds this time). 

As I sit in the car writing this entry on our way to meet up at Manistee River Launch-Hodenpl Dam, my body is again pleading with my mind and heart. “I can’t do this! I’m not up for a four-mile hike and then kayaking down the Manistee. Can’t you feel the sand-filled, noodly arms and legs?” Yes, they both reply. But, I’ll open the door when we get there and step out into the dirt road, smiling at Mike who will be driving us up to the trailhead. One step at a time and soon I know I’ll be feeling strong again. Just hard to convince my body of that. 

I will write in an upcoming blog how I’ve gotten to this point; many, many nurturing supports. Certainly, not my willpower. I have come to celebrate my strength and courage, knowing that it’s fed and cultivated one supported step at a time.

***



After the trip update: We’re home at 8:58! Wow, that’s a long day for me. However, I’m feeling happy and energized. The day was perfect and the group of people- wonderful. I felt connected with “my people” right away. Soon after stepping out of the car, I was able to “turn on” and the pain and weakness soon went away during the walk. I had little noticeable pain through the 4-mile hike and most of the 10-mile kayak. Towards the end, I had to do my stretches (I’ll get into that in another post) because my neck and shoulders were seizing up. However, at the end of the trip (at Red Bridge which is really white in color), we were met by a stiff gin and tonic with lime. That made all my stiffness go away😊 Now for some sleep (hopefully). 

Wednesday, June 19, 2019

Going from PAINfully Living to PainFULLY Living



The journey I've taken since my diagnosis of Fibromyalgia


This past June (2018), as my husband and I drove across the country from Michigan to California in our Ford Escape, I began to notice a change in me.  It wasn't quite a new thing, but a new intensity and duration.  My muscles ached deep, deep within me, gnawing from the inside out.

This is the beginning of a major life change, a journey of sorts that has birthed a new self.  It's been hard (almost impossible at times) and is ongoing; however, I have come to be thankful for what it's brought me to.

Being a teacher and a lover of learning, I have done a lot of research.  Seeking insight, knowledge, and help from every place I could find it.  This blog is to share my path on this journey.  One:  Just so I can have it recorded somewhere.  Two: Hopefully help others through this sharing.

I have come to witness and understand that Fibromyalgia comes in many forms with a variety of symptoms and a variety of ways that people choose to handle it.  I have learned from others' stories; however, no one that I've encountered has taken the path I've been on.  I feel that by sharing what I've gone through and am going through might give insight to someone else.  I don't think anyone will have the same path as you, so gleaning from many, may lead you in the direction you will want to go.

I have chosen to accept the pain by managing it as much as possible. Sounds easy, right?  Just manage it. This blog will go into the details of how my life has been impacted, some of the possible reasons Fibromyalgia developed in me, and how I am managing it.  I have gone from PAINfully Living to painFULLY Living since my diagnosis this past November (2018).

I will share as best as I can through my words the raw truths that I've been living with.  I don't want to sugar coat anything.  Fibromyalgia is an all-encompassing, chronic disorder: physical, emotional, and mental.  To share my path will mean sharing it all.   It will be cathartic for me and hopefully helpful to some. Join me in this, and we'll see where it goes!