Every patient who has ever been diagnosed with an incurable disease can attest we leave no stones unturned in our quest for better health.
During the first few year of dealing with autoimmune illnesses like Ankylosing Spondylitis, Fibromyalgia, Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) and CRPS, I turned to Western medicine and alternative methods to see if I could make my symptoms more manageable or possibly even cure myself.
I can’t think of one person I know with a serious autoimmune illness that doesn’t do that. We have nothing but time to seek out different treatments and ideas in order to alleviate our pain, fatigue, and other troublesome symptoms.
The problem I’ve run into over the last decade of being chronically ill is that I’m now at the point where I’m tired of moving from specialist to specialist and I’m exhausted with trying new treatments and dealing with new doctors.
If you had asked me in May 2015, I was still keen to try new things. Now it’s February 2018 and I’m still as sick as I was back then. I don’t want to waste more of my precious time and energy or my money on trying more alternative treatments to chronic illness.
Doesn’t the list below show you I’ve done enough?
Floatation therapy? Why would I spend an hour getting to an appointment, an hour getting back, and an hour in an isolation tank floating with my ears in the water and risking an ear infection when I can just set up a tub at home and fill it with the same Epsom salt and magnesium chloride baths that are in these sensory deprivation tanks?
If I time my bath right, I can do it at home in peace and quiet and not risk putting my ears in the water and getting an ear infection. Believe me, I haven’t been able to get water in my ears since age 24. All my doctors have cautioned against this. I plug my ears with cotton when I shower. Swimming has been out of the question for years because of my ears. You can read about my troubles with ear infections related to Ankylosing Spondylitis back in 2008. I’m partially deaf in my left ear because of all the infections.
Why would I drink Chinese medicinal tea to help bring my body ‘back into alignment’ after trying it for eight months? It made me vomit twice a day throughout the entire time I was taking it with no improvement.
My TCM doctor said it takes time. After eight months and no improvement plus a severely weakened stomach, my mom and my husband thought I should stop. And I did, and I’m not interested in going back.
You reach a point where you just can’t be bothered with all the quack theories that are out there. It’s like chasing a dream that will never come to anything.
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To those who wonder what we chronically ill patients do in the name of making our lives easier and more manageable:Western medicine has been more helpful than any of the alternative treatments I've tried. Click To Tweet Alternative treatments combined with Western medications have assisted in managing and coping with my illnesses in some respects. Click To Tweet
Here are the alternative treatments to chronic illness I’ve tried through my own research that DID NOT WORK for me.Remember that not everyone is the same when it comes to chronic illness. What works for one person may not work for someone else. Click To Tweet
These are just half the books I own. I’ve lent the rest out to people who are trying to find a way to live a healthier life, but anyways, here it goes:
- The Autoimmune Diet (Paleo Diet) (I use bits of pieces of advice from these books. No nightshade vegetables was the main takeaway for me.)
- The Wild Rose Herbal Detox Diet (This one was great until I got too sick to do it.)
- The Wahl’s Protocol
- Gersen Therapy
- The Juicing Bible (I still juice. Juicing isn’t a cure.)
- The Fat, Sick and Nearly Dead Reboot Diet
- The Cherry Diet: Because cherries are great for arthritis, right?
- Wild Lettuce Diet – THIS ONE IS WORKING!!! It has eliminated all my stomach inflammation and bloating. I have been doing this diet under the guidance of Pierre Loisel Sr. His homegrown microbe rich veggies are resetting my gut flora, which in turn is reducing my pain in my GI tract.
- A bunch of other books I’m forgetting because all I have time to do is sit and read about what could be making me worse. Believe me, many many many books on many diets and many magical cures. The rest are on my Kindle because I got too tired to hold these books up and read.
All of these diets can reboot your system and cure you of disease! I’ve yet to meet someone who has had success with just a diet reset.
I also bought books by specialists in the fields of Ankylosing Spondylitis and Fibromyalgia, and while I had some success with some of the things mentioned in these books, not all of it worked.
It was a huge hit to my wallet after paying for the books and then buying all the supplements and products that are recommended. Some of the suggestions were worth it: SAMe, Ribose-D, Vitamins B and D, and magnesium were all suggested. These supplements are part of my daily routine now.
I would work with these doctors if I could:
- Dr. Rodger Murphree’s Approach to Fibromyalgia and Chronic Fatigue Syndrome
- Dr. Jacob Tietlebaum’s Approach to Fibromyalgia – From Fatigued to Fantastic
- Dr. Genevra Liptan, The Frida Center for Fibromyalgia (Your assumption is correct. Frida Kahlo had Fibromyalgia.)
I bought all these books and spent a ton of money and time reading up on nothing that helped me immensely in the long run except for a few things here and there.
I’ve also tried and written about my forays into these alternative therapies for my health:
- Scraping (Gua Sha) (No way. Never again.)
- Bloodletting (No.)
- Acupuncture (No. Four times with four different doctors in Asia. The last acupuncturist I saw said flat out that it doesn’t work for everyone and I’m not a good candidate for this type of alternative therapy.)
- Dry needling (No.)
- Cupping (No. It made me worse.)
- Massage therapy (No. Severe Allodynia. Please ask before you touch me.)
- Traditional Chinese Medicine specifically brewed for me by a famous TCM doctor in Taipei for… $800USD per month. (Yes, I found that money because I was so desperate and No00000, it didn’t work. *EYEROLL* I won’t get suckered into that again.)
- Sensory Deprivation Tanks. (No. What a waste of time and money.)
- ROLFing (No. My body is not strong enough to handle this type of fascia manipulation.)
- Steroid and corticosteroid therapy, including direct injections into my spine, ribs, and shoulders. (No, it didn’t work.)
- TENS units (No.)
- Oil pulling (No, I tried this for months. It didn’t work.)
- Traditional Chinese Medicine – (Nope, again. After eight months of drinking roots and bark and berries that made me throw up twice every day from the famous TCM doctor I saw, a friend suggested that since I couldn’t drink his tea, I should go to Taipei Hospital in Ximen to see a TCM doctor there. It’s covered under Taiwan’s health care system and it was given to me in a dried mixture of ingredients in small paper packets. This extended my foray into the world of Traditional Chinese Medicine for ANOTHER six months. (Can you imagine how long 13 months is when you’re vomiting everyday and choking things down to see if it works ON TOP OF YOUR REGULAR NAUSEA FROM PAIN?) – NO. This made me sicker and it weakened me considerably.)
- Essence of Chicken (No. Snake-oil remedy.)
- Physical therapy (No, because my PT didn’t know what Ankylosing Spondylitis was and she caused more damage to my spine. Now I’m scared. I walked into that appointment to find her looking up Ankylosing Spondylitis on Wikipedia. It took the trust out of PT sessions after that. I left that hospital.)
- Turmeric (No, but I keep eating it because I hope it’s working somewhere. It’s not hurting me, so I see no reason to stop.)
These are the therapies and alternative treatments I found that provided some relief:
- Jin Shin Jyutsu (Japanese Accupressure) – Yes, I had success with this treatment. My friend suggested it and she was right. It helped a little, but it’s not covered under health insurance and I can’t afford over $150 per treatment every 3-4 weeks.
- Reiki – Yes, I had success with this treatment with one practitioner here in Taiwan whose prices were very reasonable. Unfortunately, she moved to Belgium. I wish she would come back. Of all the heath practitioners I’ve met, Rasha was certainly the best. I felt safe with her. This was in 2008 and 2009. She left in 2010.)
- Yoga (Yes and no. It worked in the early years of my illness. Now I don’t have enough strength to continue with my decades long love affair with yoga.)
- Knee aspiration: (Yes, it worked, but I’ll do anything to avoid having this done again.)
- 20 different kinds of medications to bring my issues under control (Yes and no, but NO CURE.)
- Essential oils – Yes, for all sorts of things like nausea, migraines and sleep: especially peppermint oil, geranium oil, and lavender oil.
- Air purifying techniques – Yes, indoor plants help from a therapeutic perspective.
- Eating vegan – Yes and no. A full vegan diet does not cure my illnesses, but some things do help, as long as I stay away from nightshade vegetables.)
- Moving to a dry desert environment for a few weeks to see if my health improved. It did.
- Magnesium baths – Yes, one of the best natural remedies I’ve found. I take hot magnesium baths 2-3 times per week. I would rather take a bath than ingest magnesium because it is hard on my stomach. We absorb magnesium just as easily through our skin with no side effects on our stomachs.
- CBD Oils and Creams – Yes, but I don’t have access to it in Taiwan.
- Medical Marijuana – Yes, but I don’t have access to it in Taiwan.
- Kratom – Yes, and it’s here in Taiwan. I use it for pain and sleep.
- Wild Lettuce – The sap of wild lettuce reduces pain and inflammation in your gut. YES YES YES.
- Apple Cider Vinegar – This is great for mouth ulcers and sores when your immune system is acting up. It does not cure arthritis, but is sure helps with my mouth, as long as I make sure it’s fully diluted. Straight apple cider vinegar will rip the enamel from your teeth.
- Art – Because it’s good for your soul and it’s a great distraction technique.
I also quit the following items between 2011 and 2015:
- milk and dairy products
- no gluten
- no bread products
- no refined sugars
- no artificial sweeteners
- no aspartame
- no nightshade vegetables
- no air fresheners
- no laundry sheets in our home
- no caffeine
- no deodorant (unless its natural)
- no aerosol sprays for cleaning
- no hard liquors
- no products containing sodium laurel sulfate (An anionic detergent and surfactant found in many personal care products that foam, including soaps, shampoos, and toothpaste)
- no exposure to nickel because I am highly allergic to it
- zero exposure to gasoline and petroleum products because the fumes make me pass out
- I also limit my exposure to heavy metals because I have over 200 chemical sensitivities
- Yes, I avoid all 200+ chemical sensitivities as much as possible. We have cleared our home of cleaning agents that make me ill.
- I can tolerate three types of beer, so I don’t drink much. It’s too hard on my stomach and liver.
In any case, I hope this article has done what I wanted it to do.
It shows you, my readers, what I’ve been trying for decades. It also demonstrates that despite trying all these things that are so easily recommended by people who do not understand my illness, that not everything works. It isn’t as simple as switching diets or taking more supplements.
What it comes down to is pacing and management for your chronic illness. Chronic is chronic. That means it doesn’t stop.
And incurable means incurable. That means there is no cure.What it comes down to is pacing and management for your chronic illness. Chronic is chronic. That means it doesn't stop. And incurable means incurable. That means there is no cure. Click To Tweet