11.05.2019

35 Lyme & fibromyalgia treatments that didn’t work for me (but might work for you)

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:

  1. 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…
  2. Just because a product didn’t work for me doesn’t mean that it won’t work for you. We’re all different!
  3. 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.)

35 Lyme & fibromyalgia treatments that didn't work for me (but might work for you) | Fed Up with Fatigue

Supplements

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.

What I use instead: Pure Encapsulations Magnesium Glycinate and ConcenTrace Trace Mineral Drops

*****

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.

What I use instead: Tramadol (prescription), medical marijuana, infrared sauna and other treatments

*****

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.

What I use instead: Ondansetron (prescription), ginger candy and nux vomica

*****

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

35 Lyme & fibromyalgia treatments that didn't work for me (but might work for you) | Fed Up with Fatigue

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.

What I use instead: Quell (for bodywide pain relief) & ActiPatch (for localized pain)

*****

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.

*****

CranioCradle – In her book, “The Fibro Manual,” Dr. Ginevra Liptan recommends the CranioCradle to help simulate craniosacral therapy and foster a deeper relaxation response.

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

Sleep aids

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.

What I use instead: Medical marijuana and melatonin

*****

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. 🙁

Prescription drugs

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.

Over-the-counter medication

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.

My successes…

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!

My current treatment protocol for Lyme & fibromyalgia!

My current treatment protocol for #Lyme & #fibromyalgia (2019) | Fed Up with Fatigue

My favorite Amazon products for Lyme and fibromyalgia!

My favorite Amazon products for Lyme & fibromyalgia | Fed Up with Fatigue

My 6 favorite things for fibromyalgia relief

A few of my favorite things for relieving the pain and fatigue of fibromyalgia. | Fed Up with Fatigue

5 more of my favorite things for fibromyalgia & Lyme relief

5 more of my favorite things for fibromyalgia & chronic Lyme relief | Fed Up with Fatigue

Now it’s your turn: What helps you the most with your Lyme and/or fibromyalgia symptoms? Share in the comments!

Comments

  1. Sue Maurer says

    I use Nutritional Frontiers Sleep Time for a great nights rest. It works great and no hangover! My chiropractor suggested it!

  2. I am so bummed that Oska didn’t help you… it’s the only thing that has worked on my spine and tailbone pain.

    • Donna Gregory/FedUpwithFatigue.com says

      I know, right? There were several of you guys in CIB who had great results w/ Oska. I’m not sure why it didn’t work like that for me.

  3. Trudie J OSullivan says

    I have recently discovered weighted blankets. I have been able to sleep quite well. I seem to wake up more refreshed. Has anyone else had success with these?

  4. Topamax nearly killed me. I had severe paranoia, frequent panic attacks, continuous anxiety, fits of rage, and deep bouts of depression. My GP at the time said something to the effect of “I’ve prescribed this for 20 years and nobody has had those side effects. Those are listed on the leaflet as a CYA by the manufacturer but they’re not *real* side effects.” I weaned off of that poison and switched doctors so fast. Weaning was a horror in and of itself. That whole med was the darkest time of my life and while I can barely remember the 3 years I was on it, maybe that’s for the best. I’ve heard great things about MMJ for both fibro and migraines, however. I’d love to have something like that for breakthrough pain and to replace my fioricet, but right now it’s illegal where I live. I’m sure that will change in time. How does your doctor feel about tramadol and MMJ at the same time btw? There seem to be so many doctors even scared of just tramadol, these days.

    • Donna Gregory/FedUpwithFatigue.com says

      I have had a dr in the past question my use of both, but my current doctors haven’t. I use Tramadol and marijuana differently and typically I do not use them together. If I need it, I take Tramadol during the day b/c I need to be able to continue to function and work. Whereas, I use medical marijuana at night after work and right before bedtime to help w/ pain and sleep.

  5. Rebecca Edenfield says

    I am using the Chili Pad system on my bed. It’s not cheap but well worth it.it utilizes a pad that circulates distilled water. The temp can range from 55-110 degrees F. It’s a quick and easy relief for me to climb in bed and set the temp I need.

    • Donna Gregory/FedUpwithFatigue.com says

      OMG, I have finally found another ChiliPad lover! We bought ours years ago and still use it every night. It’s a little spendy, but worth it!

  6. do not know how any person can survive fibromyalgia without trying to learn as much admissible I stay off milk no goats milk no bread or my stomach floats can’t eat chocolate or cheese get migraines and tomatoes and potatoes cause.me trouble tendonitis in my hand burning pain in the bottoms of my feet and psorasis in my knees pains all over my scalp arms spine and cramps in my feet and circulation feels weird in my hand get and legs left branch bundle block my heart valve take a low size blood pressure tablet and twice a day he puffs of mistake for my asthma I take a ancbd 0mg tablet one a day 10mg dose don,t know if I can get an organic cbd? Anybody know my heart has palpatations can I get any worse I have advertised autism and sometimes I wonder what life will hold as I am a full time after to my son and daughter both over twenty carer full time my husband works I wish I could do more then I find I advert tired and fall asleep stopped my Ziumbabwean class years ago what exercises can I do??? Without getting cold or damp I love in South wales and it’s raining almost every day any rainbows to look forward to can I make things knitted or seen to raise money for fibromyalgia Drs won,t give me and I buy tablets I can hardlt afford first time I’ve slept properly in years and feels little less stressed I have ibs and a very irritable bladder but can,t take antidepressants and bladder tablet could not take d imade itid worse menopause to too it all off

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