THIS IS A FOLLOW UP TO MY PREVIOUS POSTS ON THIS TOPIC.
THANK YOU FOR YOUR PATIENCE IF I REPEAT MYSELF.
THESE PERSONAL COPING TOOLS ARE NOT MEDICAL ADVICE AND ARE NOT INTENDED AS TREATMENT INSTRUCTIONS FOR ARACHNOIDITIS OR ANY OTHER CONDITION.
Every case of arachnoiditis is different. What works for me may not work for you. On a very basic level, inflammation is at the root of arachnoiditis symptoms. Life with arachnoiditis is an ongoing evaluation of risks vs. benefits. Because there are so few resources it requires attention to our own bodies and how they respond to certain circumstances. It has been fifteen years since the initial injury that brought arachnoiditis into my life. Over this time, I have paid very close attention to what triggers inflammation for me. As I am not a candidate for invasive procedures and chemical interventions and pharmaceuticals create more problems than benefits, this attentiveness has been the best method for me to have an independently manageable life.
Arachnoiditis pain and neurological dysfunction made me feel like I was being attacked by gravity and the rest of the external world. Every. Day. This spinal cord injury and its systemic consequences depleted my body and made me vulnerable to environmental things and socio-cultural habits that most people I knew never had to worry about.
I cannot refer you to ONE specific resource as research for my personal needs has been quite extensive via many assorted nutrition and wellness practices, holistic methods, medical guidance, and random keyword-based online searches when I fall down that rabbit hole. The life changes I have made have included a lot of trial and error with cumulative beneficial outcomes that evolved over time. So, I have to warn that attempts to change everything all at once is setting yourself up for disappointment, failure, or added medical complications. Slow changes and adjustments have always worked best for me.
Read it again: Slow changes and adjustments have always worked best for me.
Keeping a list and a journal of changes and outcomes was also an informative daily practice.
[ALWAYS CONSULT YOUR TRUSTED PRACTITIONER PRIOR TO STOPPING OR CHANGING ANY TREATMENT PLAN THAT YOU MAY BE FOLLOWING AT THIS TIME.]
After the Cleveland Clinic diagnosed me with consequential CRPS in my left leg, I happened to find a video that talked about controlling the inflammation of CRPS via an anti-inflammatory menu. After approximately six months following that plan with successful outcomes for my leg, I also began to notice that I was able to be vertical for a longer amount of time before the usual onset of low CSF symptoms. To me, this indicated that the inflammation in the subarachnoid space must be subsiding a bit, too. I don’t know if that conclusion is factually, medically, or scientifically true. I just know that in my own body the outcome was a good one.
There are a plethora of online suggestions for anti-inflammatory menus and diets. In my experience, these are personal choices specific to my own body, I had to make the effort to pay attention to how my body reacted to certain foods. It’s a useful starting point but any general menu/diet “plan” can only serve as guidance for a place to begin. In the end, my body was the one with all the answers. As with delayed repercussions of physical exertion, the impact of any given food was not always immediate. Sometimes, I wouldn’t notice any issues until the day after…or it would be a cumulative result of a combination of foods. Keeping in mind that external factors beyond my control could have an impact on pain and inflammation, the journal I kept still helped me to identify certain patterns related to what I consumed. (As the skin is the largest organ and absorbs many things, “consumption” includes products that I put ON my body, too.)
What I feed my mind and spirit also matters. It is important to go gently with these discoveries.
There is no cure for arachnoiditis. Symptom management is key. Though I am not qualified to explain the science behind it or prescribe a management plan for anyone, I can share what I have discovered through my own observations.
Things that trigger inflammation/pain for me:
- Too much vertical time (Scar tissue blocks the natural rotation/exchange of CSF in the subarachnoid space)
- Home Cleaning and Hygiene products that contain neurotoxins and other toxic chemicals.
- Candles and air fresheners that contain neurotoxins and other toxic chemicals.
- Chemicals released from products and packaging in department stores
- Toxic and “Non-toxic” Art Supplies (“Non-toxic” is a relative term)
- Chemicals and “additives” in medical treatments, pharmaceuticals, and supplements
- Gluten
- Sugar
- Artificial Sweeteners (i.e. aspartame)
- Polyethelene glycol (in Miralax and other FDA approved products and medications)
- Polysorbates (FDA approved for use in food and hygiene products)
- Nightshade vegetables (tomatoes, potatoes, egg plant, etc.) Eventually, I was able to resume having these in small quantities if I was careful NOT to do it in a week when I had been exposed to other triggers.
- Foods that feed candida overgrowth
Candida overgrowth causes inflammation. Gastroparesis and/or low digestive motility increase the risk of candida overgrowth. Candida overgrowth became a consequential issue with a variety of symptoms that took me a while to figure out. Eventually, I did a full cycle of candida control menu adjustments to the anti-inflammatory menu I had already been following for over a year. Over time, I have found my own way to keep things in balance to minimize the extreme symptoms that were happening when candida first became part of my vocabulary. Subsequently, I noticed that there was also a reduction in the frequency and intensity of the neurological symptoms of arachnoiditis.
There are many online resources and books to explain a Candida Control Menu/diet….and what it actually does. Of the ones I read, it seemed the basic information was quite similar and the general guidelines were direct and easy to follow…usually.
I still have arachnoiditis symptoms every day. I still have to weigh the risks and benefits of daily choices for things that most people never even think about. BUT, for me, these choices are the least-invasive, least-toxic, most-successful management option.
The Risks
Normal life is inundated with chemicals to the point that it is rare to even notice the impact they are having on our bodies… until we start getting away from them. I didn’t realize the extremes of this until after about a year or so of making my own hair care products, I walked into a bathroom that was full of freshly showered Pantene hair products. The need to vomit was almost immediate. This, and similar items, were products I had once used daily.
In our society stepping away from “normal” environmental hazards, social behaviors, and eating habits can be an extremely isolating choice.
The impulse and effort to explain myself to others became exhausting until I learned how empowering a simple, “No, Thank You.” can be.
In Western culture, sugar and gluten are a huge part of our consumption. Time management and attention to details are factors in finding items without these ingredients.
Many “gluten-free” products contain added sugar. Going without gluten means their is a need to make sure that calorie and nutrient intake normally provided by healthy gluten is replaced with other nutritious foods.
Quitting sugar caused withdrawals. For me, sugar was a physical and emotional addiction that clearly exacerbated my other symptoms. Removing it from my daily life was, and still is, a big challenge. It isn’t just about the treats and sweets. Excluding raw foods, sugar is added into almost every food product we “normally” buy. The best bet was to avoid all processed foods as much as possible.
The Candida Control Menu was a long and difficult adjustment. In the beginning there were withdrawal symptoms, depression, and precautions against the herxheimer reaction that can occur with the candida die off. Self-compassion is important. Knowing that I was giving my body safe and valuable nutrients didn’t change the fact that it can be difficult to follow all of the “rules” all of the time. Though I have returned to many of the unsweetened foods I would normally consume, I do find that a need to revisit this menu happens a few times a year so that I can maintain a healthy balance and keep inflammation at a more manageable level.
For me, inflammation anywhere in my body has an impact on the other parts. It’s all connected. Some Old and New Bits from My Research
- Personal Care Product Toxins 101
- CRPS/RSD: Update on Treatments – RSDSA (Youtube Video)
- Regulation of cerebrospinal fluid (CSF) flow in neurodegenerative, neurovascular and neuroinflammatory disease
- CSF Disorders
- Foods that Feed Candida Overgrowth
- Pathogen & Parasite Die-Off Symptoms: How to manage detox side-effects
- Wild Wisdom of Weeds (Book by Katrina Blair)
- Foraging and Feasting; a field guide and wild food cook book (Book by Dina Falconi)
- Anti-inflammatory Diet: Foods to make the most of an anti-inflammatory diet
- Earthly Bodies and Heavenly Hair (Book by Dina Falconi)
- 8 Best Natural Cleaning Products
THESE PERSONAL COPING TOOLS ARE NOT MEDICAL ADVICE AND ARE NOT INTENDED AS TREATMENT INSTRUCTIONS FOR ARACHNOIDITIS OR ANY OTHER CONDITION.
The Art for Arachnoiditis Project and SheilaLynnK Art Studio are in no way affiliated with any of the links/resources shared on this page.
Art For Arachnoiditis 