Fibro Bloggers and their Stories - Katie from Pain FULLY Living

Living FULLY Despite Pain - Katie Clark's Story

Me portaging a canoe (only a few feet), during a week-long canoe trip at 

Algonquin Provincial Park, 2011. I celebrated my strength and 

the inevitable (or so I thought) pain that came with that.

I took the “no pain no gain” mantra as truth, so being pretty active, I was used to having pain somewhere in my body generally all the time. It wasn’t a worry. Pain just meant I was working my muscles, so I actually felt good to have pain. Silly me.

However, in my forties, more pronounced pain in unusual places began to crop up: the deep aching pain in my bladder radiating throughout my pelvic area, the sharp, hot pain under each armpit and at my inner knees, the mild, tight pain at my jawline. 

Now, in my fifties these spots of pain have multiplied so that I’m not exaggerating when I say that I have some level and type of pain everywhere in my body. These spots aren’t all lit up at the same time, thank goodness. They politely take turns as to which is intense and calls out for attention which has seemed to be fairly random as to why. Recently, I imagined a toddler having hold of my pain remote control just randomly pushing buttons. This is how it seems to be.

Noticing a Change in Pain
I began to take note of the changes in pain I was feeling. My friends and colleges started noticing, too. I began to massage myself-like constantly. I would catch them looking at me with concern. They didn’t mention it though, so it took a while to notice it myself.

I remember one trip my husband and I took to visit our good friends at their lake house in New Hampshire.  I had long been a yoga enthusiast, starting in my 30s, so car rides tended to find my legs crossed in lotus or stretching on the front dashboard.  My legs have always felt tight.  But this trip, my right calf was deeply aching.  I massaged and stretched and massaged some more.  By the time we drove the 15 hours to their place, I had actually made my calf swollen and bruised from the massaging.

After my diagnosis about 2 ½ years later (where more and more of this type of pain and my non-stop, nearly manic massaging of my arms and legs), I wrote the poem Kneading Need.

The next summer, following a very stressful school year, the pain came and stayed.  Along with that, the difficulty thinking clearly, stumbling over my words, utter exhaustion, and the feeling that everything was just too much for me to handle. I finally went to my new general practitioner, switching to him the year before because of our move to a rural town in Michigan. He was kind hearted and caring, but he didn’t know me.  I brought my husband with me so that he could verify that this wasn’t me. After some time and trying some things, more visits with the same complaints, and him doing thorough blood work, he concluded that I had Fibromyalgia. 

This wasn’t something I had ever heard about. However, once I told people around me, many mentioned those they knew with it: mothers, sisters, friends whose stories were scary sounding. As I began to research, I got really even more worried that this would be the end of my adventures, the end of my teaching, the end of my FULL life. Luckily, I kept researching, and with the help of my doctors, good Fibro Bloggers who shared facts and hope, and the support from my family and friends, I am seeing that I can live my life FULLY, albeit with pain.

It does look different. I did have to leave teaching. While I loved it, it demanded just too much of each day-literally 10 hours at a minimum between my hour commute, 7 hours with students, and the work put in beyond to grade, plan, prepare, and train. I couldn’t be the teacher I once was and take the time needed to take care of myself. I had also come to realize I had ignored my needs for most of my life. That had to change.

Since 12/7/2018, I have been doing just that. I’ve tried a lot of things, some have worked but much has not. I research, learning and sharing with my FMS people, and work on implementing those things that are helping. I still have pain- all over, all of the time. However, it’s brought me some new insights into myself and into the meaning of living a good life. I think I’m on the right path now.

I’m currently reading a book The Book of Joy written by Douglas Abrams from a week long visit with His Holiness the Dalai Lama and Archbishop Desmond Tutu. Much of it is speaking to me. Here is one quote that I believe with my whole heart as I am a living example:

I have become a more full and complex person living life with much more gratitude and authenticity due to the stress and opposition that Fibromyalgia has brought me. I believe that I would have been content continuing on as I was, ignoring much of myself and those around me had I not been forced to stop and in desperation, looked for how to make things better.

My Current Diagnoses:

Interstitial Cystitis (2000)-InterStim implant (after doing everything prior) & taking Prelief w/acidic foods when I have it

GERD (2010)-Nissen procedure (after years on medication)

Fibromyalgia (2018)-symptoms: ongoing roving pain-muscle & joint, foggy brain, difficulty finding words when speaking, glitches in memory, fatigue, weakness, pulsatile tinnitus

IBS (2020)-found this out after stopping all medications that could have been influencing this; I fluctuate from diarrhea to constipation and have for at least 20 years.

Things that are working for me:

• Low Dose Naltrexone (Newest addition-55 days in. Started at 0.25mg and am now up to 2.5mg and still titrating up to find my best dosage amount). Sleeping pretty well without any other help; clear headed most days all day; less pain overall, more energy. My first post: Tentatively Ecstatic: My Experience with LDN Part 1 I plan to write Part two soon. 

• CBD/THC 1:1 Oil- This didn’t seem to help with pain, but sure did help me sleep soundly. I was taking .25mg sublingually before bed. I stopped because the LDN seems to be helping with it and my GP expressed issues with it (even though I have a medical marijuana card and it’s now legalized even for recreation in MI). My post: Out of the Rabbit Hole: CBD/THC Oil for Fibromyalgia

• Meditation: I have continued with meditation after finishing the Palouse Mindfulness 8 week free course online. This is making a big difference for me. My post:The Danger of Distraction: Turning Toward Pain to Eliminate Suffering

• Yoga and Breathwork: This is an ongoing, continuation practice of 20 years. However, I’m having to learn that my practice looks different now. I had always strived too much to get to that perfect form of a pose often injuring myself in the process. I’m doing much more Restorative, Yin, and slow yoga practices these days. 

• Supplement: Magnesium Malate/B-12/E/D3

• Prescription: Vyvanse (I was diagnosed with ADD one year before my FMS diagnosis; I do think that the ADD symptoms, though, are more connected to the FMS issues.) 

• Hot pad, ice pad, epsom salt baths, and hot tub.

• Massage: Professional myofascial release, myofacial release @home using foam roller and Yogu Massage Balls, and Rhenpho Massage Gun 

• Gentle cardio: walks and swimming 

• Diet: I haven’t made a ton of changes. This is an area where I really hate being deprived. I have given up on dairy. I eat way less gluten (doing a lot of substitutions). I intake food with high acid much, mostly because I hurt immediately after. I rarely drink carbonation and don’t drink much caffeine. I tend to lean vegan due to the no-dairy. However, I do eat some poultry, eggs, and fish. However, I just can’t cut out tomatoes.

• 10-week Interdisciplinary Pain Management Program through Mary Free Bed - My Post about this: Just Breath and Other Ways to Rewire the Pain-filled Brain