As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.
As humans, we know pain from very early on in our lives. It’s a part of a normal life. We don’t think about how it’s there to protect us, nor how it teaches us. My granddaughter has experienced pain several times in her five years on earth. Today, as we drove to visit the zoo, she told her baby dolls about the first time she bled after falling down the stairs and about how she burned her hand when she had grabbed the still hot roasting stick while we were making s’mores around the fire. She went on to explain how the pain went away after a short while with ice or hugs and how her body knew what to do to heal after both events. (This is a theme I have made sure to emphasize with her.)
Our Body Knows
When we really think about it, our bodies are amazing, and its pain system is a highly effective tool to keep us safe. Without us doing much to help, our body immediately jumps into action, lessening pain and healing any injury. However, for some reason, doctors and pain researchers have yet to figure out when someone develops chronic pain; that system has gone out of whack from a gentle candle flame easily quenched to a raging forest fire that is being spread by high winds. Bodies with chronic pain continue doing what it knows is right, but for the wrong reasons.
Those of us living with chronic pain know its full effects on a system that has gone out of control: constant roving, random pain, utter fatigue, brain fog so thick it’s hard to put words together coherently, deep sadness, and withdrawal from others.”Fibromyalgia(FM), which is defined by widespread pain lasting 6-months or more affects3-6% of people worldwide.The pain that people with FM experience can vary from extreme pain from being just from someone’s touch to deep, aching pain with in the muscles. Learning what works for you to manage the pain (for most it will never be at a 0-level) will also help lessen the other FM symptoms and allow you to not just function but FULLY live.
Real Pain and ‘Explosive’ Brains
Five Management Protocols
One frustrating thing about a diagnosis of Fibromyalgia is there is no one set treatment protocol. While those living with FM have common symptoms, they also have a wide variety of levels of each of those symptoms at any given moment. In that same vein, each FM patient reacts differently to treatments, so learning how to manage FM pain and its corresponding issues will take some time to figure it out for each individual. However, there are a few starting protocols that are a must.
The Fibro body needs gentle movement and cardio to stave off severe pain. This can seem counterintuitive to those living with FM and before understanding what FM is, many will find themselves spending a lot of time in bed which ends up making things worse. Gentle movements such as chair and Yin yoga, Tai Chi, walking, swimming, and water therapy are just a few. In the article Workout Tips That Can Ease Fibromyalgia Pain it states, “Exercise consistently (aim for daily) for 15 minutes.” and “As little as 5 minutes a day can reduce your pain.”
When I first started physical therapy, I would have a hard time getting out of bed to go. On arriving, my PT would see that I was in pain, down, and tired. She’d get me on the treadmill for 20 minutes. It amazed me the first several times that how after that short stint of cardio, my pain would be much less, my mood lifted, and the fatigue gone. As always, listen to your body. Take breaks and be gentle with yourself.
- Lessons Learned in Nature: Managing My Fibro Symptoms
- Fibro Warrior Develops Exercise Program Just for Us by Donna Gregory at Fedupwithfatigue.com
- Low Impact Fibromyalgia Exercise and Weight Lifting Routines by Lisa Ehler aka Fibro-Gir
Medication and supplements can help. But not all work for everyone. There are three prescription drugs approved by the FDA to treat FM (2014): the antidepressants Cymbalta and Savella and the anti-seizure drug Lyrica. However, many in the Fibro community will say that these are not the best. Because they are approved by the FDA, insurances tend to cover them, and some find good results. (I struggled with Cymbalta and the side-effects and the addictive nature of it made me decide to stop taking it.) I am having very good results with an off-label prescription drug called Low Dose Naltrexone (LDN)-see below for related posts that give specific information.
There are also some highly recommended supplements that you will see talked about in online Fibromyalgia groups: magnesium, SAM-E, vitamin D, and CBD. These supplements have helped me with my FM symptoms. I stopped using SAM-E (which helped with fatigue) due to LDN and the Vyvanse I take for ADHD helping with that. However, I would still take it if I didn’t have that combo. Currently, I use a full-spectrum CBD oil to help me with sleep and anxiety. I found that for me both LDN and SAM-e caused me to feel physically anxious. If you chose to use CBD oil, don’t go cheap. Make sure you have a lab-monitored for quality reviewed source.
- Tentatively Ecstatic! My Experience with LDN Part 1
- Becoming Myself Again! My Experience with LDN Part 2
Massage & Myofascial Release:
In an article by Dr. Ginevra Liptan, FM doctor who also lives with Fibromyalgia, she enthusiastically recommends myofascial release techniques. This can be done through physical therapy, by a professionally trained massage therapist, or on your own. She states, “Manual therapies that gently unstick these tight areas of fascia, such as the John F. Barnes Myofascial Release Approach (MFR) can be hugely helpful in reducing fibromyalgia pain. In fact, it is MFR that gave me enough improvement in pain that I could get back to medical school after developing fibromyalgia.”
I have learned a lot about myofascial release from my massage therapists, physical therapist, and at my yoga studio. Researching myofascial release, I have learned techniques from several online videos that work well for me. In my detailed eBook manual on massage and myofascial release that I am giving away free (see the link below), you will learn of suggested tools and that you can use at home along with a good collection of videos that explain how, where, and why.
- From Retreating to Treating: A Free Digital Manual on Massage and Myofacial Release
- Myofascial Release Therapy for Fibromyalgia by Dr. Ginevra Liptan
Meditation & Mindfulness
Stress has a big impact on those living with chronic pain. When we are stressed, our body tenses all over, creating more pain. It is widely understood in the FM and medical communities that stress increases pain, albeit it’s not fully understood why. In the article, Eliminating Stress Brings Pain Relief, Dr. Stanos states, “Because pain [is regulated by] the nervous system, the brain is a key player in how we perceive pain. The brain is always trying to inhibit pain signals. But if you’re stressed, simply put, the brain’s ability to filter these pain signals is affected in a bad way and pain can be increased.”
Meditation and Mindfulness have been shown to be great stress release modalities. A well-respected study done on a program called Mindfully Based Stress Reduction by Dr. Jon Kabat-Zinn showed that those who practiced meditation had significantly lower levels of pain, anxiety, and had better sleep.
I have taken a free 8-week online MBSR course through palousemindfulness.com. This jump-started my understanding and use of mindfulness and meditation as part of my daily wellness protocol. See my related posts for details of my experience.
- Mind Over Matter: 21 Days of Meditation
- Dangers of Distraction
- There is No Small Stuff! How Fibromyalgia Has Affected My Tolerance for Stress
Jon Kabat-Zinn Discusses MBSR
Those of us living with Fibromyalgia often develop anxiety or depression. Researchers are not fully sure why, but studies have shown that FM patients produce lower levels of endorphins, even when exercising compared to their healthy counterparts. Just dealing with the effects of chronic pain, fatigue, and brain fog on our daily lives and relationships can take a huge toll on our mental health. Therapy has helped me to see things from different angles and has given me the tools to handle those times of anxiety and depression. As we know, our mental pain then leads to more physical pain. It’s a vicious loop. Talk therapy helped me to break that pain cycle. There are three types of counseling that work very well with those living with FM:
- Cognitive Behavioral Therapy (CBT) “is a form of short-term psychological treatment that’s based on the premise that yes, how we feel and behave can influence our thoughts, but also our thoughts can affect how we feel and behave. By learning ways to change our thinking, therefore, we can learn to change how we feel and act.” The article in Everyday Health goes on to say, ” CBT is a goal-oriented, problem-solving therapeutic approach that’s been shown to be useful for people whose quality of life suffers because they have a chronic illness, and it specifically has been found to be helpful for people with Fibromyalgia.”
- Acceptance and Commitment Therapy (ACT) is a type of counseling that helps you accept what is in your life. This is the type of therapy I had when I went through a 10-week pain management program. It helped me to reframe my situation so that there was less struggle, thus less stress, and less pain.
- Eye Movement Desensitization and Reprocessing (EMDR) therapy is new on the scene that is finding some good success in helping those who have gone through trauma. Research has shown that most FM patients have had trauma that could have contributed to developing the syndrome. For some, it was a major car accident. For others, like myself, it is trauma stemming from childhood. EMDR is not talk-therapy. This therapy relies on working through traumatic memories, in a safe space, by using the patient’s own rapid, rhythmic eye movement. I know, it sounds strange, but after learning more about it and its efficacy with those living with PTSD, I’m willing to give it a try. *I had started just before the COVID-19 lock-down and have decided to wait on it as it really needs to be something you do in person.
- Acceptance is My Super Power: Living FULLY with Fibro
- But How Do I Practice Acceptance? My Super Power in Development
- How CBT and ACT Can Help Those With Fibromyalgia from Everyday Health online magaz
As I’ve mentioned, all of us who live with Fibromyalgia have to figure out what are best protocols for managing the symptoms; however, learning from one another as to what works has been an essential element to making my search go along more quickly and efficiently than if I had not.
A couple of week’s ago, I went for my yearly physical with my General Practitioner. He had not seen me in person since he’d prescribed the LDN that I had asked him for three months prior. While he had hesitated, he gave me a one month’s prescription. After my first month, noticing wonderful improvement, I wrote to him explaining what was going on. Then, in this appointment, he was amazed by the progress he saw and heard from me. He said, “I’ll make sure to remember this if I get another patient presenting with Fibromyalgia.” The fact that I had brought a new treatment tool for him to use really made me happy. The only way I knew to even ask for this prescription was due to fellow FM bloggers sharing their own experiences.
Here is my post explaining all the resources that have helped me live my life FULLY despite the pain and other symptoms of FM: Come So Far! Last Summer to This.
Please, share with us what has worked for you. Are there any things that others found helpful but you have not?
Thank you for visiting my blog today. I am committing to posting once a week by Friday. However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.
My granddaughter says, “Sharing is Caring”;)