10.09.2017

Three new (to me) treatments that are helping my fibromyalgia & chronic Lyme symptoms

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Disclaimer: The following information is not intended to be a substitute for professional medical advice, diagnosis or treatment. It is for informational purposes only. This article was originally published on NationalPainReport.com and is being republished here with permission from the editor. 

I’m constantly tweaking my treatment protocol for fibromyalgia and chronic Lyme, hoping to find something that works better and gives relief. I’ve recently added a few new things that I’ve found beneficial and wanted to share, so here goes…

Three new (to me) treatments that are helping my fibromyalgia & chronic Lyme symptoms | Fed Up with Fatigue

Using CBD oil topically

I’ve started adding CBD oil to my body lotion as a pain remedy. I recently stopped long-term antibiotics for chronic Lyme because I’ve only seen minimal improvements in my health after taking them for more than a year. So far, my symptoms are still stable except for the return of my shin pain, caused by bartonella, a common co-infection of Lyme.

Bartonella shin pain is nasty and miserable! It feels like it’s aching inside the bone, and I’ve never really found a good remedy for it – until now.

I’ve been using hemp body lotions for more than a year. I find them helpful for relieving minor aches and pains, but they are no match for the severe shin pain I experience. I had a partial bottle of cannabis-based CBD oil that I wasn’t using, so in desperation one night, I combined my hemp lotion with a half dropper of CBD oil, rubbed them together and then slathered them on my aching shins, feet and hips. And guess what? It worked! Within a few minutes, the CBD oil numbed the pain down to a more tolerable level.

I’ve continued to use the lotion/oil combo over the past couple of weeks, and it’s consistently worked well. Unfortunately, it doesn’t give long-lasting pain relief – the effect lasts an hour or so – but even a temporary reduction in pain is welcomed.

So far, I’ve been using cannabis-based CBD oil purchased from my local dispensary because that’s what I had on hand, but I’m going to experiment with hemp-based CBD (which you can buy online) next and see if that works just as well.

Quick update: Since I wrote this article, I’ve had the chance to try the hemp-based CBD mixed with the hemp lotion, and unfortunately it didn’t work as well as the cannabis-based CBD. Oh well, I guess I’ll be making a trip to my dispensary soon.

Earthing & sunlight therapy

A few weeks ago, I watched a documentary on earthing (also called grounding) and got inspired to try it. Several studies have shown earthing helps to reduce stress, pain and inflammation, and improves sleep because it allows the body to connect with the Earth’s surface electrons.

A few days a week, weather permitting, I take a beach chair out in my backyard and sit with my bare feet/legs on the grass in the sun for about 15-20 minutes. Doing this serves two purposes: I’m getting the benefits of earthing, and the sunlight is stimulating my body’s natural process for making vitamin D.

Yeah, I know dermatologists would tell me I’m increasing my risk of skin cancer, but I’m careful not to overdo it. I do wear sunscreen on my face because I’m vain and want to prevent wrinkles, but I leave my arms and legs bare to the sun.

I can’t say earthing and sunlight therapy have caused a dramatic decrease in my symptoms – I don’t think I’m spending enough time outside to get the maximum benefit – but I have noticed I have more energy and mental clarity on the days when I spend those few minutes outdoors.

And for the first time in my life, I actually have a little bit of a tan on my usually ghostly white legs. I’m planning to buy an earthing sheet to see if I might feel more benefit. Stay tuned to see if it works!

Coffee enemas

When my new Lyme doctor suggested doing coffee enemas two to three times a week as part of my treatment protocol, I was not happy. I had never done an enema in my life, so it felt really intimidating and a little scary and just … yucky! But when you’re in pain every single day, and not much helps to relieve it, you get to a point where you will try most anything.

I’ve been doing coffee enemas about every other day for about three weeks now. I can already say coffee enemas are a game changer for me, and I don’t say that lightly. I will be doing a full article on coffee enemas soon, but for now I will say they are great for more energy, better mental clarity and also help some with pain relief. I am so glad I got over my embarrassment and revulsion, and took my doctor’s advice because coffee enemas are one the most effective treatments I’ve ever used for fibro/Lyme. (Here’s info on how to do one. If you don’t like to read, here’s a link to a really good podcast that covers the basics.)

Now, it’s your turn: Have you tried any new treatments lately that have helped your fibromyalgia and/or chronic Lyme symptoms? Please share in the comments! 

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Comments

  1. Doreen Luck Salter says:

    Due to being rear-ended, I have FMS, CFS, RLS, TMJ, arthritis, chronic insomnia, as well as both knees replaced, the left knee had an infection so three more surgeries. I have tried almost anything. Can I use CBD oil tincture mixed with the hemp.lotion? I have tried earthing. The temp has to be about 81 degrees, I use sunblock and sit outside for 20-30 minutes and get quick, positive results. If I sit outside several days in a row, the pain is much more tolerable and the relief can last for 2-3 days. Has anyone tried Flotation Therapy?

    Donna, could we create a list of “Fibro-friendly” doctors and where they are located as a resource for finding a doctor?

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, as mentioned in the article, I’ve been mixing the CBD oil tincture w/ the hemp lotion to give it a little more pain relieving power.

      I have tried flotation therapy. I did a blog post on it here: https://fedupwithfatigue.com/flotation-therapy-for-fibromyalgia/ I wish I could do it more but it’s a little pricey and my nearest float place is about an hour away.

      The National Fibromyalgia & Chronic Pain Association has a doctor’s list like you mentioned: https://www.fmcpaware.org/healthcare-provider-directory.html

    • Rochelle says:

      I tried floatation therapy once, and to my surprise, it actually increased the chronic pain in my upper back and caused me neck pain as well. I’d be curious to know if others with fibromyalgia had the same experience.

      • Donna Gregory/FedUpwithFatigue.com says:

        Did you use an inflatable pillow while you were floating? I initially used one but found it caused pain in my neck and back. I didn’t have that issue when I floated w/o it.

  2. Jane K. says:

    Hi McKenzie. I have Fibro, too – have had for 20 years now. I recently did some research into anxiety supplements, and Ashwagandha keeps popping up. I, too, have a lot of anxiety, and am going to try it (starting with just one pill to see what it does to me). Of course, you should check with your doctor before starting any supplement.

    Here’s a link for a highly rated Ashwagandha supplement on Amazon:

    https://www.amazon.com/Ashwagandha-Enhancer-Artichoke-Enhanced-Supplement/dp/B06XC9CZWN/ref=sr_1_4_a_it?ie=UTF8&qid=1507649749&sr=8-4&keywords=supplements+for+anxiety&refinements=p_72%3A2661618011#customerReviews

    Among other prescriptions and supplements, I take Magnesium L-Threonate. This is a particular magnesium that helps those with Fibro. It helps with cognitive function and sleep.

    Hope you find relief in your anxiety, as I do myself.

  3. Lee Ora Coston says:

    Just reporting that I tried Liberty Lixir sublingual spray. It did not help me. It actually made me feel worse. Made me very jittery. Did not sleep well . Also made me very dizzy and off balance.

  4. Hi Donna, thank you so much for your dedication to this blog, your work is greatly appreciated!
    I am writing in response to McKenzie, as I struggle with fibro, RA and anxiety. Lexapro is a med I take for the anxiety, might be one worth trying, if you haven’t yet. I should be taking a higher dosage than I am, but there are sexual side effects to this drug, so I have stayed with the lower dosage that just takes the edge off.
    Marijuana should help anxiety also, but unfortunately I don’t live in a state where it is legal.
    Looking back I realize that I had fibromyalgia for a long time, for me the disorder was progressive. But I also think anxiety was just as big a problem, maybe the fibro wouldn’t have gotten so debilitating had I managed the anxiety. So if I were young like you, I would diligently pursue controlling the anxiety.
    Our issues are complicated, contradictory sometimes, so you are blessed if you have a dedicated doctor. God’s grace to all who are burdened with loss of good health.

  5. Lusana says:

    I have had great results wit Havening, I am a practitioner too and am enabling many others to have their lives back . It’s a simple very soothing and telaxing technique that actually canbtarget the pain centres to produce endorphins but also rewrite the neural pathways to stop overproduction of the signalsvthat cause the excruciating pain . I was in a wheelchair and bedridden for most of the day and am now far better . It’s easy to use and learn.?if you’d like a demo as a gift please get in touch
    https://youtu.be/VD6PcEWDJbo

    • Maureen says:

      Hi Lusana, I just watched your recommended you tube video…very interesting and educational concept. I’m on currently on a path of learning about the brain and its relation to my chronic pain and CFS conditions. I will give this a try :-). Thank you! Maureen

  6. The supplements GABA at bedtime quiets brain chatter helpfully. The supplement L- Theanine works like Xanax but it’s very subtle. And I also recommend an Adaptogen. This is supplement of a Mushroom. It is Chinese Medicine which has been successful 3,000 years.
    Lastly and so important, get off sweets and white flour foods. This includes canned drinks, juices, jelly, raisins, chocolates and flavored yogurts. Eat very little honey and when you do, be sure it is Raw Honey. Sugar fires up the Central Nervous System and causes increased pain, anxiety, brain fog and insomnia.

    • Kathleen says:

      I keep hearing about this but due to so many losses like my spouse and then my home topped off with several surgeries and complications, I just don’t have the willpower.

  7. McKenzie Lindgren says:

    I just have fibromyalgia (though saying “just” doesn’t seem to correctly caputure the pain and torture of its symptoms). Do these three help FM symptoms or more your Lymes symptoms? As with most, I also have chronicle fatigue syndrome, and the boost in energy and clearing away the fog of fibro-fog would really help, I just want to know if these treatments help the Lymes symptoms that cause your low energy and mental confusion. I have tried a cannibis based lotion and I had to put too much on to feel any change. I became ill with FM the summer after I graduated high school at 18, and I know most teenagers think they’ve “lived” in those 18 years, but at 28 now, I know I hadn’t even entered my adulthood & at that time I was still a child. I’ve accepted that FM has forcefully taken root in my life, and all my future plans have been tossed aside and in their place pure unpredictability. But looking at a life of pain, fatigue, and fibro-fog (which often comes across to others as stupidity- despite the level of intelligence I worked so hard to obtain), I am open to almost anything. Maybe others can relate when I say I feel I have nothing left to lose.
    I have a dedicated doctor who is determined to see me have a functioning lifestyle, and each month I go back to him and we tweak my treatment, and he is open to anything (thank the Lord my doctor is openminded and I don’t have to talk him into trying a new treatment).
    Most recent is our turn to marijuana. He had brought this up as an option before and I’d actually had the luxury at that time to turn it down (I was a big prude in HS, 0 drugs and 0 alcohol), truth be told, I was a bit scared to take marijuana in any form. Now, I’ve exhausted everything else.
    I take Marinol (a pill containing severely diluted marijuana) twice a day and I noticed it helping my pain a bit… just a bit. I take B12 injections for energy, but too much B12 in your body causes you to feel tired- nothing can ever be uncomplicated with FM… there is ALWAYS a catch. I also am taking a nutritional supplement called “Rain” that a person who has arthritis and saw it offer pain relief suggested I try. It’s tastes awful, but its basically three big swallows.

    At the moment I am suffering from extreme anxiety, yet I cannot tell what I’m anxious about because I have no idea. Nonetheless, it is so strong, it leaves me frozen, unable to act or make decisions, causes pain in my chest, and a few panic attacks. We all know stress is poison to FM, my doctor said anxiety is just as bad, so this terrible anxiety over nothing (I’ve actually tried sitting and going through my head all the facets of my life, one by one, to see if any trigger the intense tidal wave of anxiety that plummets over me, and come up empty) is making every FM symptom worse with a never ending flare up.

    Does anyone have treatment advice for anxiety (GAD-> General Anxiety Disorder) aside from medicines like Valium that make be extremely tired, unable to function, yet not tired enough to help my insomnia? I thought there was a medicine that you took once a day that helped with anxiety. I know that most, if not all, anxiety meds will have drowsiness as a side effect; for me, only the strongest, highest dose of a sleep medicine will help my insomnia, so I can tolerate some drowsiness. But I was prescribed Valium as part of a treatment for my insomnia (because it’s a muscle relaxant, of course when your tired you’ll have less anxiety). I’m looking for a medicine that is ~for~ anxiety, and not one you take because one of its side effects might calm down your mind.

    I feel like I’ve written a short novella here, which was not my intention. If you’ve made it this far, thank you for reading. I am extremely grateful for any advice, as I know most of us are. And I will be more diligent about checking my email and reading updates here so I can offer my own advice when I can. God bless us all. ❤️

    • Donna Gregory/FedUpwithFatigue.com says:

      If you look at a list of fibromyalgia symptoms and chronic Lyme symptoms, they are basically the same. I don’t differentiate between fibro and Lyme b/c of that. I found these 3 things helpful for my primary symptoms, which are pain, low energy and cognitive issues.

      (Actually a lot of people w/ fibromyalgia have chronic Lyme and don’t know it. Lyme is the underlying cause for their fibro symptoms. Doctors confuse these conditions b/c there’s so much overlap in symptoms and the accuracy of Lyme testing is so poor.)

      • Donna, you said that you found these three things helpful for low energy, pain and cognitive issues. But I think you forgot to list them, unless I am not able to see it properly. What three things did you find helpful for your symptoms?

    • StevefromMA says:

      McKenzie,

      Anxiety is really one of the most treatable psychological issues. You need to get a recording of progressive relaxation or autogenic training , try both to see which works better for you, and let your body learn to relax. You could buy or take from the library The Relaxation Response, an unbelievably simple procedure that has helped millions, just involves paying attention to your breathing, one page in the book will tell you how to do it. Let me know how it turns out. This is a consultation from a clinical psychologist with forty years of experience working with people with problems like this. Have hope, something will work for you.

    • Karen Rasmussen says:

      Hi McKenzie,

      So sorry to hear your anxiety is getting so bad. I’ve started having panic attacks in the last 2 years but mine is directly related to stress. I live overseas.and own my own business so yeah, stress is part of my life! Lunge many with fibro I’ma Type A that wants to do it all, so being diagnosed at 44 with fibro has been a real wake up call for me.

      My boyfriend of many years has suffered from chronic clinical depression and generalized anxiety. He used benzodiazepines such as valium for a long time. They helped him short term but ended up making him dependent, and they are apparently even more challenging to withdraw from than heroin! Many many doctors warn against their long term use, so just a word of caution.

      He has found that a good diet and lots of exercisehas helped the most. And sufficient good sleep is critical. For short term panicI was also prescribes a benzodiazepine called Rivotril. I only take it when I’m desperate though as am afraid of dependency.

      Good luck, I would definitely recommend medical marijuana as it has helped me (but it’s not available where I live now). I take 60mg Cymbalta, 150mg Lyrixa, 200mg extended-release Tramadol and 10mg Ambien to sleep. I’d gladly toss them all in exchange for something natural only line marijuana!

      Take care, Karen

    • Lusana says:

      https://youtu.be/VD6PcEWDJbo

      My dear I can enable you to feel much better from the GAD and FMS/CFS I’d love to give you the gift of a demo of how to greatly improve your conditions as I have for myself and others

    • Sheri says:

      I have suffered from constant morning headaches, that reduces to a dull nuisance by noon. I have tried many alternative options, with Chiropractic and massage is the best for reducing, never eliminating the constant pain. I decided recently enough was enough and I had read about Cryotherapy, acupuncture, and Sauna therapy. The sauna at the gym never seemed to do anything except make my allergies worse. Needles scare this allergy girl because of all the allergy shots as a child. With two eliminated, I found a local Cryotherapy place located in a gym (mainly because this therapy was just used for elite athletes). The first session, within minutes after the two-minute freeze, my headache was GONE! My pain all over was GONE!. I went 26 hours after my first session pain-free. I woke the next morning without a headache and energy enough to drive my non-morning husband nuts! Then it (the pain) was back, so I skipped a day, felt the terrible morning headache again and went back. So far, I’ve been to 4 sessions and will do a total of 10 in a month. Then I am going to wait and see when I need to go back. Maybe it is once a month, but I don’t know. I have some stiffness from muscles finally released from their autoimmune death grip, but I have energy, I feel amazing! Freeze–not my favorite thing to do, but I can do anything for two minutes if it makes me feel this great! Has anyone else tried this and had a lasting benefit?

    • Ellen Micheles says:

      I have had Fibro/CFS since 1984 so I have lived with the many symptoms the last 35+ yrs. Since I also suffer from anxiety and at times depression I began looking into the differences between Serotonin and Dopamine depression. There are clear differences and seems I have been treated over the years for low serotonin when if fact its dopamine that is low in me. I suggest doing a google search on these to learn more.

      I started taking l-tyosine (to increase dopamine) and Sam-e which works on both and others too. I have had very positive results these last 3 months. I suggest these sites although there are others

      http://www.drwardbond.com, balancingbrainchemistry.co.uk, bebrainfit.com

    • Bonnie says:

      McKenzie- Here are some things that have helped me with anxiety. A website called anxietynomore.com, google EFT (emotional freedom technique) and a meditation app called Insight Timer.

  8. Kathleen says:

    Bartonella is also referred to as Bell’s palsy of the gut. My husband’s feet became varicose and swollen as well as itchy. Tried accupuncture. Lyme specialist put him on supplements to help remove the fluid. It will also raise your ammonia level if the liver is involved. Make sure they’re a well qualified Rheumatologist. Follow the Chronic Lyme website, Ilads for the latest news. Hope this helps!

    • Donna Gregory/FedUpwithFatigue.com says:

      Yep, I have that issue w/ extra ammonia. I have an infrared sauna and if I don’t use it about every other day, my sweat starts to smell like cat urine. (Sorry if that’s TMI.) There are supplements supposedly that help the body flush the excess ammonia, but I haven’t tried them yet since the sauna seems to help.

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