After more than a decade fighting Fibromyalgia, I couldn’t imagine that the last two years could bring as much learning as it has.
I have stepped up the fight. I am trying Low-Dose Naltrexone and an MSM supplement at the moment. I am using yoga as therapy (targeted poses to keep my body moving). I am devouring research and books and articles about fighting the symptoms and the illness.
A large school of thought in the cause of Fibromyalgia, is that it is caused by underlying issues that need to be resolved. For example thyroid issues, Candida, viral infections, allergies etc.
Lesson one: Don’t be surprised, or discouraged if one avenue of potential healing doesn’t produce results.
Many Fibromyalgia bloggers/writers/doctors blame Candida overload for Fibromyalgia problems. They recommend cutting dairy and sugar and gluten and taking varying supplements. There are entire articles devoted to clearing Candida. Well, I have zero Candida in my system at the moment and my neck has been worse and the fatigue has been higher.
I also have “optimal” results in the usual blood tests (thyroid, iron, antibodies etc). All worth checking and noting that “normal” does not always mean “optimal”.
I don’t give up, I store this in my “don’t worry about it” column and move on.
Lesson two: Fibromyalgia is a massive undertaking of trial and error, which feeds into lesson three: you have to do the work yourself.
I have had precisely one doctor who is willing to listen to me, work with me and trial things with me in the 15 plus years I’ve been dealing with chronic pain. That Dr still doesn’t have a lot of avenues to offer me, but he is willing to let me trial things I research.
I turned up with research papers prepared to be persuasive about a trial of Low -Dose Naltrexone, he agreed immediately.
I have tried a multitude of things to fight Fibromyalgia. Physical therapies like osteopathy, chiropractic, massage and physiotherapy (neck traction and acupuncture needles in trigger points help me). Supplements like MSM, magnesium, multivitamins, iron, olive leaf extract, probiotics and a truckload more I can’t remember! (A helpful note here, using powders dissolved in water seems to absorb better than tablets for me).
Yoga, walking, stretching and swimming are helpful exercises that I enjoy. I have to modify for my neck and knees though. There’s also a clearly defined line that I must keep to, 25 mins of walking is enough, less causes pain in the lower body and more causes pain also!
Avoiding allergenic foods specific to me (bananas and dairy are occasional foods, corn and wheat are once per day foods according to my test). This was the one good thing that came out of hundreds of dollars spent on a naturopath. I trialed gluten-free eating a couple of years ago and found no effects while off or adding them back in. However, I do prefer non-glutenous grains like quinoa and millet as they have extra nutrients too.
There is a mind-body component. Meditation simultaneously helps me rest (I cannot nap) and teaches my central nervous system to calm down. Gratitude practice keeps me looking for the silver lining. Prayer helps sustain my hope (and hope is crucial, without that I’m done for). Colouring is calming and enjoyable. Reading is my favourite hobby and doesn’t require physical activity. You need hobbies and you have a right to enjoy these even with a limited energy envelope.
Almost every time I read a book written by a Fibromyalgia doctor, I have found that I have made my way to an approximation of their protocols myself.
This is all by time consuming, expensive, roller coaster of emotions, trial and error.
Lesson four is that you can do All The Things and still have Fibromyalgia.
Clearly I do a lot to manage my health as best as I can. I have learnt a lot and do a lot, daily. But I still struggle everyday with these symptoms. Mostly my neck and sleep. However, until a doctor helps me with my neck, my quality of life and my sleep will not improve.
I have come a long way since I was struggling through the day, so sore I wondered how my body was functioning, so exhausted I was nauseas most of the day and only managed by holding on to the glimmer of hope that getting enough work experience would mean I could earn enough per hour to reduce my work hours. But there is more to go until I am healed and I fight on.