This week I had an appointment with a new pain doctor. As my post below explains, I was looking for some guidance from a doctor who prescribes Low Dose Naltrexone (LDN) for treating chronic pain. I’ve been taking LDN for nine-months now. Up until 2 months ago, I was slowly titrating up by 0.25mg every week or two. However, I’d been guiding my dosage and wanted to talk to someone to figure out if I was heading in the right direction.
His reaction surprised me. He told me what a great job I was doing in my understanding of Fibromyalgia and follow through of self-care protocols. He went on to say that he would love to see me lead a class to help those patients who come in for treatment of Fibromyalgia. “As you can see, we treat specific areas with injections and the like, not the allover, roving pain that is found in Fibro. You can imagine that in a 15-minute meeting with me, most of my Fibromyalgia patients leave feeling like I’ve said it’s all in their heads. If you were to meet with them before they come in, I think that would help them on their journey to managing their symptoms much better.”
By the time the appointment was over, I had agreed with him putting my website up as a resource on their Fibromyalgia page. I left feeling really excited at the prospect of helping others with the learning I’ve made over the past three years. In fact, on the hour drive home, the teacher in me came out and I began to think of curriculum to use in a first class!
That Was Yesterday…
The day after, I was hit with brain fog. I didn’t start my day out any differently. I meditated before doing anything else. Along with taking my morning medicine, I ate a gluten/dairy-free breakfast. Then, I spent 30-minutes on my elliptical while talking to my Wednesday walking buddy on speaker phone, and I drank my first 24 ounces of water. This is the routine that I’ve been doing every morning for over a month now. While I am having more days of clear-thinking and energy, it’s not a for sure bet when you live with Fibromyalgia. My fogginess made me mix up the time of my EMDR session, which meant I was at home getting ready to leave when my counselor called me that she was ready for me to come in (due to COVID-19, the protocol has been to stay in the car until she calls). Thankfully, she understood, but ARGG!
Today has been a bad pain day, albeit with a functioning brain and decent energy. Fortunately, I am able to do the extra self-care needed when a day like today hits due to being retired. But, as I rolled around on therapy balls and then soaked in an Epsom salts bath, it got me to think about how much of my day is spent in self-care and pain management. Really, I should say 24/7, because everything I do is colored by trying to make the best choices (although that doesn’t always happen). Seriously, I spent all day, today, working to get the pain to calm down. Before bed, thankfully, the intense pain had subsided.
The Work of Healing
1. Research and Study
I can’t count the number of hours I’ve spent in researching Fibromyalgia: ways to calm the nervous system, treatments to manage pain, etc. As a teacher and lifelong learner, I actually love studying about how the nervous system works. As I have explained in my earlier posts, I follow Dr. Daniel Clauw’s research on the over amplified nervous system who is working hard to protect me; it just doesn’t know that I’m really not injured and perfectly safe.
I continue to research, read, and listen to podcasts about neuroplasticity and others. One of the new neuroscientists that I am following is Dr. Andrew Huberman (See his very informative podcast: How Your Nervous System Works & Changes). The time I’ve spent learning has greatly helped me take more control over my wellness journey.
Related Posts:
- Navigating Life With Fibromyalgia with Healing Support: Interview with Elaine Merryfield: Author, Educator, Healing guide
- Boom and Bust! Pacing is Hard
2. Retraining the Brain
But, reversing 56-years of living in fight/flight takes so much TIME. Changing brain pathways through meditation, breathing, visualization, and EMDR therapy, all takes consistent practice and focus. I have taken Breathwork training online and in the studio. Online, I was able to participate in a free 10-week Mindfully Based Stress Release course through Palousemindfullness.com, and I continue to meditate using Insight Timer for guided sessions. I’ve spent several hours in ACT therapy and am currently doing EMDR therapy.
While I know I am making progress, it’s like watching an oak tree grow. So slow and gradual that it’s often hard to perceive.
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3. Self-Care Protocols
Daily, my body needs attention. I use heating pads, ice, myofascial release, Epsom salt baths, yoga, massage, and gentle movement of walks in the woods or time on the eliptical. This takes time. On a low-pain day, I spend an hour or two a day. On a high pain day, it can take up most of the day. If I neglect to do these things, I pay for it with worsening Fibromyalgia symptoms.
Another big part of the work of healing has been watching what I eat. Before I was diagnosed with Fibro, I figured out that mild products cause me severe gut issues. Cutting out dairy meant big diet changes. At restaurants, it usually means that I eat vegan. Due to problems with GERD and the NISSEN surgery to “fix” it, I have to stay away from carbonated drinks and acidic foods. I didn’t want to go gluten free even though many FM resources say that it can help. However, in the last 15 -days, I’ve given it a try. To my surprise, the chronic pain in my stomach after eating is no longer. As you can imagine, it’s taking a lot of time researching, planning, purchasing, and making food for this new way of eating.
Related Reading:
- FULLY Living Strategies When in Constant Pain
- Just Breathe and Other Ways to Rewire the Painfilled Brain
4. Medication
After a few mix ups with dosage amounts, my husband suggested that I find a way to have my doses of Low Dose Naltrexone measured out for both the morning and evening doses. I’m pretty proud of my little set-up. Each week, I have to dole out my medication both pills and the liquid LDN suspension so that I’m ready for the week. Along with this, I need to stay on top of ordering, purchasing, and picking up the medications and supplements so that I have them on hand for this weekly rit
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5. Doctor Visits, Insurance, and Record Keeping
This past couple of months have been one of several tests and doctors appointments. I don’t plan that I’ll have to keep up this pace (most of these have been to the new diagnosis of Fibromuscular Dysplasia), but it sure has taken a lot of time. First, I live about an hour’s drive from any specialist doctor’s office, except the FMD doctor, which is 3-hours drive. I spend 1 1/2 hours a week for counseling. Along with the doctor’s visit comes the work of contacting my insurance and keeping records of how much we’ve spent on my health care. After attending four sessions of physical therapy for my pelvic floor at the order of my Interstitial Cystitis specialist, I learned the hard way that I can’t assume the cost will be covered. I ended up having to pay $686.14 because (even after my request for reconsideration), they wouldn’t cover the biofeedback that helped me deal with incontinence issues.
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6. Journaling and Recording
Recording daily symptoms is important to find out if there’s a pattern to my experience. It helps to share specifics with my health provider and leads to better understanding. My blog is a form of journaling. I started it after my pain psychologist recommended I write about my experience as one way for me to heal. It has given me an outlet and a way to feel like I can help others who may need to hear about my experience. But also, it provides a decent timeline of my wellness journey, giving some pretty specific information. There’s been times when sharing a post with a health provider gives them a deeper understanding; I certainly express myself more thoroughly through my writing than in person. This part of my wellness work takes a decent amount of time every week.
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Making up for Lost Time
It sure does seem like I’m having to make up for lost time. Before developing chronic pain, I was the champion of ignoring my body’s needs and signals. I even prided myself on it. At work, I’d not drink liquid so that I didn’t need to use the restroom as often; going the whole school day sometimes without drinking. I would often skip lunch to work with students, making me so hungry by the time I got home that I’d eat junk while making dinner. I’d spend hours scrunched up on the couch or chair grading papers, coaxing myself to hang in there until the last one was done before stretching my aching arms and shoulders, often pushing through a headache as well.
Now, my body will not be ignored; she’s made sure of that. She demands that I give her the time and care I didn’t all those years. I’m fortunate, though, that I now have the time to devote. I think of all those who live with Fibromyalgia and chronic pain who are still working, going to school, and/or have young children to take care of. I am thankful to have this time that has forced me to look inward and develop myself.
Yet, I’m scared. The prospect of teaching a group of patients living with Fibromyalgia really feels right. But, can I commit? Can I be depended on? I’ve tried some part time work, and it’s proven to be too much in the end. When I went to see the pain doctor, I filled in the goal section with “to be able to be consistent and able committ to a part-time job”. The doctor’s pat on the back, while really encouraging, also makes me question if I’ll ever be able to follow through.
I do feel that I have something to offer others, especially in the area of the world where I live. There’s so few resources for those living with Fibromyalgia. One thing I do know is that those of us living with this complicated, time consuming chronic illness, is we are understanding and non-judgemental of one another. So, I think, I could commit, but I may need to figure out a way to be flexible in that commitment.
How much time do you put into managing your Fibromyalgia symptoms? What’s your biggest challenge? I’d love to hear about your experiences.
Katie- thank you so much for sharing this! Managing it all is a lot of work and I love how you were really able to articulate so many aspects of the struggle. I’m so excited for you being offered the opportunity to teach others with fibro about symptom management. I totally think you can and should do it – and I also suspect that if you discussed it with the doctor, he’d likely be good with you doing it online or otherwise being flexible with you. You won’t know unless you ask and I very much encourage you to do just that.
We both need and deserve accomodations and I honestly think that one of the big challenges when becoming disabled is this image of personal unreliability. With appropriate adjustments we definitely can be reliable ENOUGH which is what matters, and we can be the best source of quality information, especially as the only people who have this sort of experience.
Please be easy on yourself on this front – you could create an amazing class and really help people with it. You deserve that opportunity. I’m not saying you HAVE to do it – that’s unfair too – but don’t let your fears keep you from doing something you want to do – I absolutely believe that with proper planning, you absolutely can do this!
I am so proud of you Katie! 🙂 Also loved how though this post was, providing both the simple but vital reminders, and also big picture items!
I love this Katie! Go you for being such a brilliant advocate and for helping so many people with fibro who will come to your site ?
Great job, Katie. I’m so happy that you took a break and got all your ducks in a row so you can tackle 2021 with more ease. How wonderful that they are recognizing your hard work as well!
Yes, the doctor’s greeting me with such enthusiasm for my work (wellness journey) certainly made me feel good. I think I’m going to work on developing curriculum for helping others find their own path to living FULLY despite pain. I will definitely lean on the learning I have gotten from you and others. Once I get into it, I’ll contact you to get your opinion, okay?