05.14.2019

The if this, then that approach to managing fibromyalgia & chronic Lyme flares

Every week I write about tools and resources to help people live better with fibromyalgia and chronic Lyme. You’d think I’d have the perfect plan to deal with the inevitable flare of symptoms.

Well, not so much! I swear there’s something about a flare that incapacitates the few brain cells I have left. Put simply, when I’m faced with higher-than-normal pain levels, exhaustion or other intensifying symptoms, I can’t think!

Because I can’t think, I can’t remember what to do to help myself. So, all those pain-relieving gadgets and vitamin powders and heating pads sit on a shelf as I’m curled up on the sofa under a blanket, praying for hell to pass.

Can you relate? I think many of you can based on recent discussions I’ve had with some of my fellow fibro and Lyme warriors. Apparently others struggle with this brain freeze, too.

But I think I’ve figured out a solution. I’m adopting an “if this, then that” approach to symptom flares. Specifically, I’ve created a written plan for myself, detailing what to do when certain symptoms intensify.

Maybe it will inspire you to create your own “if this, then that” plan!

Note: I have multiple tools listed under each symptom category. I don’t use every single thing on the list each time. I pick and choose depending on the severity of the flare and what I think might work given the situation. This plan is more about summarizing my available treatment options rather than following a rigid step-by-step protocol.

(This article contains affiliate links.)

The if this, then that approach to managing #fibromyalgia & chronic #Lyme flares | Fed Up with Fatigue
For flares of general, diffuse body pain

We’ve all experienced those flares where our entire body aches so much that it almost vibrates. I used to reach for painkillers as my first step of attack, but over time I’ve noticed this all-over, achy feeling is often triggered by my contact with certain toxins, such as glyphosate (aka Roundup weed killer) in food or chemicals in household products. Now when I get that flu-like feeling, the first thing I reach for is a binder. More than half the time, the binder works, and I don’t have to use other tools.

(Read more: How Monsanto’s glyphosate attacks our core cellular functions)

(Read more: A quick guide to 7 popular toxin binders)

(Read more: My Quell review)

Fatigue

An intensification of fatigue is tough to treat because there aren’t that many options unless you’re willing to try stimulant medications, but here’s my short list:

(Read more: 23 clinically-proven ways to reduce fibromyalgia fatigue)

(Read more: Transforming the experience of rest)

(Watch: How yogic sleep can help you rise up)

Shin pain
Neuropathy/burning in my feet
Bladder urgency

I’ve dealt with that “gotta go, go, go” feeling for years because Lyme loves my bladder! It’s misery when my bladder gets angry.

  • Take an extra dose of Hyophen, my prescription overactive bladder medication. (I normally take two a day, but my prescriptions allows for three.)
  • Take over-the-counter AZO Urinary Pain Relief.
  • Drink plenty of water to flush out irritants.
Lower back pain

I carry most of my chronic pain in my lower back now due to a bulged disc. These are my favorite tools when it flares up:

  • Put on my ActiPatch device if I’m not already wearing it.
  • Put on my Quell pain-relieving device if I’m not already wearing it.
  • Do my physical therapy back stretches.
  • Use my heating pad.
  • Use the Tramadol/acetaminophen combination mentioned above.
  • Apply topical cannabis rub from my local dispensary.
  • If I’m having sciatica, take prescription gabapentin or a muscle relaxer.
  • If none of these work, use medical marijuana, go to bed and call it a day!

(Read more: My ActiPatch review)

(Watch: The McGill Big 3 lower back pain exercises)

Brain fog

I haven’t really found a good remedy for dealing with an increase in brain fog. I just have to let it pass on its own.

However, my coach Julie Holliday from ME/CFS Self-Help Guru has introduced me to the concept of energy matching, which has been enormously helpful. In simple terms, energy matching involves choosing activities based on your current level of energy level/brain functioning.

For example, if I’m super brain foggy, I have an extremely difficult time writing or reading. When that feeling hits, I look at my to-do list and see what activity I could reasonably accomplish with a foggy brain. Usually these are more administrative tasks such as filing papers, scanning documents or answering emails. Using energy matching, I’m still able to be productive instead of sitting in front of the computer for hours, hopelessly trying to string words together.

Nausea or tummy upset

I usually get nausea when I’ve reacted to some sort of offending food or chemical. My first line of defense is always a binder.

TMJ (jaw pain)
Hip pain
General joint pain
  • Apply topical cannabis rub from my local dispensary.
  • Take acetaminophen or other over-the-counter anti-inflammatory medication.
  • Use the infrared sauna.
Can’t sleep
Feeling down
  • Sit in the sun and/or spend time outdoors.
  • Go for a gentle walk.
  • Watch “The Office” (U.S. version) or some other funny TV show/movie.
  • Love on my pets.
  • Connect with friends/family/spouse.

That’s it for my “if this, then that” plan so far! Obviously this will be evolving over time as I find new tools and symptoms change. What would be included in your “if this, then that” plan? Share in the comments!

Comments

  1. THANK YOU for this! And I am esp thankful to have found that wonderful link to the yoga teacher for chronic illness! I cannot wait to practice more of her yoga poses!

    • Donna Gregory/FedUpwithFatigue.com says

      I hope you love Kayla from Aroga Yoga! I’ll be doing a Q&A interview w/ her in the next couple of weeks.

  2. Lisa G says

    Good to hear that you are incorporating cannabis into your routine as it can help with certain things! I find that a good CBD oil on a daily basis can help balance the body. Keep smiling and keep on keeping I enjoy your newsletters x

  3. Christian Blanchard says

    I’m a nurse… Or, WAS a nurse before Lyme disabled me. I was also a paramedic. I did private duty with vent/trach babies and we had to use this approach every day whether in a home or on an ambulance. I sort of just instinctively did it for myself when I got sick. I have to say, I am terrible at being my own nurse! I forget if I’ve taken my meds or not and like you said in the beginning, I even forget what modalities I have available to myself when the pain and brain fog get bad. So, I had to treat myself like any other patient. I have a dry erase board on my bedroom door with my current regimen on it and copied a drug sheet online so, I check off my own meds just like I would for a patient. Being a nurse, and also a Lyme patient, you have to be super organized and try to think ahead of what might happen in a day. Especially when I have to go somewhere. I have mold illness and extreme EMF sensitivity so, leaving my sterile bubble of a house means having seizures. I have a bug out bag for myself just like I did for my patients. And, write everything down! It’s the only way to really get things right. If we rely on our Lyme brain, we’ll get nowhere and it’s frustrating. This is a very smart article and, good advice! Some of the things listed, I haven’t tried yet so, I will! Having Lyme means being your own doctor/nurse a lot of times because you can’t just run to the Dr or E.R. every time you have a flare! So, it’s very important to treat yourself like you would someone else. It’s harder than it sounds. And train your family too. I keep telling my dad who is a chiropractor that I’m going to make a nurse and a paramedic out of him like it or not! Lol because when I’m seizing and stop breathing like I like to do, he’s my life saver. Again, we can’t call EMS every time I have a seizure so, he’s been trained to if this then that also. Although, sometimes when it’s really bad, he still freaks out and forgets what to do. Which is understandable, his daughter is actively trying to die but, after each incident, we just go over it just like you would after a major trauma or code in a hospital in order to improve outcomes. So, he gets better at it every time. Good luck out there to whoever reads this article. I know it sucks and you have very little support but, you can do this!

  4. Georgene says

    Invaluable list! Thank you! You have listed suggestions I’ve never heard of before!

  5. Hi Donna, first let me say that I am so glad you are feeling well enough to continue keeping us so we’ll informed about fibromyalgia and Lyme disease. You have always given us great info and links to other sites, etc. The “If this then that” approach is brilliant! It’s one of those “why didn’t I think of that” kind of moments! Now I just have to have a day (or week, or month) where I can plan out my own “blueprint”! I look forward to your posts every week. Thank you and gentle hugs. 💗

  6. Jackie Kendro says

    This is me! I always forget the things that work sometimes. Lol! One thing that does work for me for brain fog is Brain-flo by Bioflourish. You can buy on Amazon. If you go to the bioflourish website, you can read how the doctor developed it through his own battle with Lyme disease and mold toxicity. He made great efforts to get the highest quality of ingredients. One pill a day will help you to think much clearer.

    • Donna Gregory/FedUpwithFatigue.com says

      Thank you for sharing about Brain-flo. I’m going to look into that b/c I’m still having quite a bit of brain fog after the CSF leak I had.

  7. J E kane says

    When you in bed with the pain, you are probably watching TV. Watch as many humerous shows/movies as you can. This also works for depression.

    • Mary Major says

      Is it unusual to be exhausted every day. It’s starting to really worry me! And I’m already signed up for fed up with fatigue. I am completely on my own and exhausted most of the time. My name is Mary Major my email address is marymajor4145316@gmail.com/Thank you, Mary Major

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