Over the years, I’ve reviewed quite a few Lyme- and fibromyalgia-related products here on Fed Up with Fatigue. Generally, my reviews are either positive or neutral. Because of that, I’m sure some of you have wondered if I’m the placebo queen and maybe even thought, “Does anything NOT help her?”
Well, the reality is LOTS of treatments don’t work for me! I just don’t usually share those because of limited time and energy. I’d rather focus on what works than what doesn’t.
But today I’m doing something a little different. I’ve decided to add some balance by sharing a lllllloooooonnnnngggggg list of failed treatments I’ve tried over the years.
Before I begin, I want to make a couple of disclaimers:
- I name products in this post, but my intent isn’t to criticize or warn you away from any specific product. Every single product on my list has received good online reviews from other people, which brings me to my second point…
- Just because a product didn’t work for me doesn’t mean that it won’t work for you. We’re all different!
- Standard disclaimer: I am not a medical doctor. The content below is for informational purposes only and should not be used as a substitute for medical treatment. Please do your own research on any potential treatments and discuss your findings with your medical team.
(This post contains affiliate links.)
Magtein Magnesium L-Threonate – I’m a huge, huge, huge fan of magnesium as a natural pain reliever, but for some reason, I couldn’t tolerate magnesium threonate. Every time I tried to add it to my supplement regime, it inflamed my bladder and sent me running to the restroom to urinate every 10 minutes.
It’s a shame I couldn’t tolerate it because threonate may help with fibro fog and other cognitive issues.
CoQ10 – I continually read good things about CoQ10 and how it can reduce fibromyalgia pain, fatigue, anxiety and other symptoms. Over the years, I’ve tried various CoQ10 products, including the more expensive ubiquinol form that’s supposed to be more bioavailable. I’ve never experienced any improvement from taking these products.
Fatigued to Fantastic! End Pain – I was excited to try this product because it was recommended by Dr. Jacob Teitelbaum, a fibromyalgia specialist who was diagnosed with fibromyalgia while in medical school, but it did nothing to relieve my chronic pain.
New Chapter Zyflamend Whole Body – This natural pain-fighting product has more than 1,000 five-star reviews on Amazon and contains some amazing ingredients for reducing pain and inflammation. I wish it had worked for me!
VitaBreeze Turmeric Curcumin with Black Pepper Extract – There are studies that show curcumin is an effective alternative to NSAIDS for inflammatory pain. Early in my fibromyalgia diagnosis, I experienced some moderate pain relief from using Terry Naturally’s Curamin. Curamin is a little pricey, so I tried VitaBreeze in an attempt to save money, but it didn’t work near as well. (At some point, Curamin stopped working for me, too.)
Solaray Ginger Root – My first Lyme doctor recommended taking a ginger supplement as a natural nausea remedy. Ginger tea and ginger candy both normally settle my tummy, but this didn’t.
Doctor’s Best High Potency Serrapeptase – One of the ways Lyme evades the immune system is by hiding within a sticky bodily substance called biofilm. My first Lyme doctor recommended serrapeptase to help break up these biofilms so antibiotics could more effectively kill the Lyme bacteria. I’ve taken serrapeptase and other popular biofilm busters over the years and have never noticed a change, good or bad, while using them.
For my fibromyalgia readers, serrapeptase is supposedly helpful for reducing soreness and inflammation.
NOW Ashwagandha – Dr. Marty Ross, a Seattle-based Lyme specialist that I follow online, recommends ashwagandha to help support the adrenal glands and manage day-to-day stress. I took it for a couple of months and didn’t see any difference in my symptoms.
Core Med Science Liposomal Glutathione – Glutathione is recommended in the Lyme world to help support the liver and improve detox. This bottle sat in my refrigerator for at least a year before I finally tossed it in the garbage. To be honest, I have no idea if this would have helped me or not because it smelled and tasted so bad that I couldn’t stomach it. $40+ wasted!
What I use instead: Coffee enemas (these stimulate the body’s natural production of glutathione)
NOW mannose cranberry – Urinary urgency was one of my earliest Lyme/fibromyalgia symptoms. I’ve struggled for years to control that symptom, trying both pharmaceuticals and over-the-counter supplements.
Mannose cranberry is highly recommended in the Lyme world to help prevent Lyme and other bacteria from adhering to and irritating the bladder wall. I saw no improvement, but I know lots of people have good results from using cranberry supplements to prevent urinary tract infections.
What I use instead: Hyophen (pharmaceutical)
Hyland’s Nerve Tonic – I tried this for anxiety, but I never noticed any effect from it.
What I use instead: L-theanine
CBD oil – In 2015-16, I had some success with using hemp CBD oil as a pain reliever. However, after several months of daily use, it stopped working for some reason. I played around with my dosing and switched brands a few times, but never found another one that consistently decreased my pain.
(Liberty Lixir’s 1,000 mg CBD tincture did help my sleep though!)
When I received my medical marijuana license, I tried cannabis-based CBD oil, which is supposed to be more potent than the hemp formulations sold online, but that didn’t work either.
What I use instead: Medical marijuana
Devices & gadgets
TENS unit – Over the years, I’ve tried different TENS units, but I have yet to find one that really, really works well to relieve pain. Even the fancier units used by chiropractic and physical therapy offices aren’t generally effective for me.
I think part of the problem is my pain tends to be diffuse and all over my body whereas TENS units seem to work better for localized pain.
In general, I also find most TENS units annoying to use because of the jumble of wires and having to sit in one place during treatment.
All that being said though, I’ve heard from plenty of people with chronic pain who absolutely LOVE their TENS devices and wouldn’t be without them.
Oska – I trialed the Oska PEMF device for several months as part of the Chronic Illness Bloggers network, but I never wrote a review because I could never conclusively say it was actually helping me. I was pretty bummed about it since Julie Ryan from Counting My Spoons and several other chronic pain friends had great results with the Oska.
Hummingbird – A fibro friend passed her Hummingbird device onto me after it didn’t work for her, and I ended up passing it onto yet another fibro friend because it didn’t work for me either. My friend reported mild success with the Hummingbird as a treatment for neuropathy (burning/tingling) in her feet.
Benepod – I only used the Benepod a couple of times because I couldn’t tolerate the alternating hot/cold sensation it created on my skin. The company was supposed to send me an updated version of the device to try out, but that never happened for some reason.
Thync – I wrote a review on the Thync Relax Pro but you’ll notice it’s pretty neutral. I did feel more relaxed while using the device, but it was hard to parse out if I was calmer due to using the Thync device or would I have felt like that any way because I was meditating? At some point, I’m planning to pull the Thync back out and give it another go since I love the idea of it.
Unfortunately, I developed a headache every single time I tried to use it. I even contacted the company, thinking maybe I was positioning it incorrectly. When troubleshooting failed, I ended up returning the CranioCradle to Amazon.
This was another instance where I was bummed since the CranioCradle gets mostly four- and five-star reviews on Amazon.
Sea-Band – I’ve been prone to motion sickness since childhood. It became more of a problem after I contracted Lyme disease. I have to take dramamine if I’m going to be in a vehicle longer than 45 minutes.
I love the idea of Sea-Bands because they’re drug free, but my set did not prevent motion sickness.
What I use instead: Dramamine
Creams & potions
Topricin Fibro Cream – I published a full review of Fibro Cream back in 2015 when I first started FedUpwithFatigue.com. Sadly, it had no effect on my pain whatsoever. However, there are lots of fibro warriors who swear by it as a topical pain reliever, and it consistently receives good reviews on Amazon.
What I use instead: Resonant Botanicals pain-relieving lotions
Two Old Goats Essential Oil Lotion – I have neuropathy in my feet, and I absolutely love Two Old Goats Foot Balm as a remedy to cool down my burning soles. But I’m not a fan of the company’s body lotion. I find it too runny and not very moisturizing.
Mo’ Maggie Magnesium Lotion – When the Morton company stopped making my beloved Epsom lotion a couple of years ago, I spent a few months trying to find an alternative. Mo’ Maggie was highly recommended among Amazon reviewers, but it felt sticky on my skin, so I requested a refund.
What I use instead: Elepure Magnesium Lotion
Fatigued to Fantastic! Revitalizing Sleep Formula – I had high hopes for this product since it’s recommended by Dr. Jacob Teitelbaum, a fibromyalgia specialist who was diagnosed with fibromyalgia during medical school. However, it didn’t help.
Natrogix Sleep Formula – It looks like this product may no longer be available. I purchased this because the combination of ingredients – melatonin, 5-HTP, l-theanine, etc. – made sense to me, but it didn’t work.
Source Naturals Night Rest – This is another sleep formula that looked promising because of the ingredients, but it did nothing for me.
Boiron Quietude – Yet another sleep product that I tried with no results.
NOW GABA and NOW Glycine – I am begrudgingly including my once beloved GABA/glycine sleep combination on my failed treatments list. The thing is it DID work, and it worked well for a good long while. In fact, I loved this combination so much for increasing my deep sleep that I wrote a whole blog post about it! I stopped using it in 2017 to save money after I found that I also slept pretty well with medical marijuana.
Fast forward to today, and I’ve been having sleep issues again the past few months. I recently added GABA/glycine back to my protocol, and … nothing. It just doesn’t work for me now, and I don’t know why. 🙁
Lyrica – I took Lyrica shortly after my fibromyalgia diagnosis in 2014. I wasn’t able to stay on it because it actually increased my nerve pain. Needless to say, my doctor was stumped on why a drug that’s FDA-approved to relieve nerve pain would actually have the opposite effect.
Amitriptyline – My diagnosing rheumatologist feels fibromyalgia, at its core, is a sleep disorder, so he prescribed amitriptyline in hopes of improving my slumber, which in turn should have reduced my pain. It sounds good in theory, but that’s not how it manifested in real life. Amitriptyline didn’t improve my sleep or my pain, but it did help me gain 40+ pounds that I didn’t need. (In case you’re curious, this is how I lost the weight.)
Cymbalta – By the time I tried Cymbalta, I had already failed three or four other fibromyalgia drugs. My rheumatologist actually warned me against Cymbalta, saying it’s poorly tolerated due to side effects, but I was desperate and wanted to try it anyway.
I lasted three days on Cymbalta. My brain felt so scrambled and out of it that it scared me so I gave up on using it.
Trazodone – My second Lyme doctor prescribed this to help with sleep. All it did was scramble my brain like Cymbalta. I think I only ended up taking it for about a week before I threw it into my “medications to be recycled” bag.
Plaquenil – I’m one of those people who feel pretty damn good when I’m prescribed a short course of steroids for acute inflammation. When I took my first steroid pack in 2017 for severe lower back pain, my Lyme/fibromyalgia pain was almost nonexistent for about two weeks.
Unfortunately, long-term use of steroids is not recommended by most doctors because these substances can be damaging to the body. As an alternative, my second Lyme doctor suggested trying plaquenil to reduce inflammation. As a bonus, it also supposedly helps kill Lyme.
I took Plaquenil for several months, but never saw any improvement from it.
Trokendi XR (generic: topiramate) – My neurologist prescribed this for daily headaches caused by intracranial hypertension (yet another complication of Lyme). Out of all the drugs I’ve tried over the years, this one scared me the most. Within two weeks of being on it, I literally felt like I was going crazy. There were times when I was scared I might hurt myself or someone else. I will never take this medication again. Ever.
Flexeril (generic: cyclobenzaprine) – This was another failure prescribed by my diagnosing rheumatologist. As with amitriptyline, he was trying to improve my sleep. Flexeril does knock me out, but even on a low dose, I was so groggy during the day that I couldn’t function.
Tonix Pharmaceuticals Holding Co. has actually developed a low-dose sublingual version of cyclobenzaprine that’s currently being trialed in fibromyalgia patients. If and when it hits the market, I might try it since using it sublingually should fix the issue with daytime sleepiness.
Dextromethorphan – A few years ago, I got inspired by Dr. Jarred Younger’s research and decided to try dextromethorphan, an over-the-counter cough remedy. All it did was make my head feel full and swimmy. (“Swimmy” isn’t technically a word, but it’s the best descriptor of how I felt.)
In theory, dextromethorphan could be an effective treatment for fibromyalgia. Maybe I just didn’t get the dosage right.
As I said in the beginning, I tend to write more about products that work for me, so here are a few links that focus on my successes!
Now it’s your turn: What helps you the most with your Lyme and/or fibromyalgia symptoms? Share in the comments!