The “if this, then that” Approach to Fibromyalgia Flares

The “if this, then that” Approach to Fibromyalgia 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. We literally forget what to do when certain symptoms debilitate us!

Donna Gregory Burch

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 treatment options rather than following a rigid step-by-step protocol.

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 pain-killers 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)

  • Use a binder such as bentonite clay, activated charcoal or prescription cholestyramine, and wait an hour or two to see if the increased achiness passes.
  • Put on my Quell pain relief device if I’m not already wearing it.
  • Apply Resonant Botanicals‘ Painless pain-relieving lotion all over my body.
  • Take Tramadol, my prescription pain-killer, and two over-the-counter 500 mg acetaminophen tablets (A research study showed this combo is effective at reducing fibromyalgia pain. I’ve had good results with it, although I dose a higher than what was used in the study.)
  • Use the infrared sauna.
  • If none of the above works, use medical marijuana, go to bed and call it a day.

For 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)

For shin pain

For neuropathy/burning in my feet

For 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 AZO, an over-the-counter bladder pain medication.
  • Drink plenty of water.

For 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.
  • Perform physical therapy back stretches.
  • Use my heating pad.
  • Use the Tramadol/acetaminophen combination mentioned above.
  • If I’m having sciatica, try prescription gabapentin or a muscle relaxer.
  • If none of these work, use medical marijuana, go to bed and call it a day!

(Read more: Quell | My favorite tool for reducing fibromyalgia pain)

(Read more: ActiPatch review)

For 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.

For 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.
  • Use the infrared sauna.

Sleep problems

Feeling down/sad

  • Sit in the sun and/or spend time outdoors.
  • Connect with friends/family/spouse.
  • Go for a gentle walk.
  • Watch “The Office” (U.S. version) or some other funny TV show/movie.
  • Love on my pets.

(Read more: Medical studies on grounding)

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Authored by: Donna Gregory Burch

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Selina Cantrell

I don’t know whether this is the correct area to ask this yet I’ll take my risks in any case.
I Just need to ask as to whether somebody here knows the correct pot strain to utilize when it accompany fibromyalgia? I’ve been languishing with back agony over very nearly 7 months now and can’t rest legitimately around evening time. I as of now have a physician endorsed meds yet I hold back on utilizing them coz it just take the agony for a moment or something like that and back once more. At that point one of my companions gave me a joint to attempt on the off chance that it improves me feel and it does! I take a stab at asking him what it is however he has no clue moreover. So I began doing my own exploration about medicinal maryjane and strains that would be successful against torment and went over this
https://www.gyo.green/dj-short-flo-djs-flo-r.html. I don’t know whether that is the strain that I’ve attempted yet it has the most noteworthy agony administration impact. Cbd and thc are on the whole new to me. I additionally read that drinking it as tea or as a biscuit/cake is an alternative,
however is alleviation impacts the same? For what reason wouldn’t they be able to just influence pills to out of cannabis – or possibly there are that I am not mindful of. In the event that it’s actual, at that point I would especially welcome any thoughts and counsel on what strain is great and how to utilize it medicinally. Much appreciated ahead of time to those
who’ll reply.

dave

@Rakel Yes from 1996-2000 I did suffer from fibromyalgia-come August I will be fibromyalgia free for 19 years. Of course I did not take any calcium ion therapy or in fact any medication to become better.
Today the NY Times had an article about a famous researcher at Stanford who helped develop genetic research who is trying, unsuccessfully to cure his son with me cfs. He is not your basic researcher and has assembled heavy hitters in the research world to cure me cfs.
But he has made some fundamental blunders perhaps based on overconfidence and if i were to discuss his efforts- or efforts in fibromyalgia research i would make certain points. First off they suffer from theoreticism and methodologism. He has assumed largely that me cfs is metabolic in nature- in fact he says he has a cure that would work but it cant be delivered. This reflects his overconfidence effect/fallacy. It is clear he also suffers from reductive mereological inessentialism- for he assumes that somehow there is no dependency between metabolic processes and neurological immune and autophagy and hormonal processes. SO he has rejected out of hand a cybernetic and adaptive approach. He has used high throuput systems to test many molecules. There are over 10 to the 53 power molecule combinations- far more then any computer can compute. His analysis of data is simple- he uses scatter plots- so much for fuzzy boosting of deep q networks or more sophisticate approach. He doesnt use multi arm multi stage research- or stepped wage or research to target. But lets talk about some other basics- his literature review is far from thorrough and hence his theory lacks explanatory power and is unconvincing. So if we were to have a discussion i dont believe how this famous me cfs researcher could prevail. Id tell him his frequentist certaintistic approach isnt working and as Bernoulli wrote hidden causes forever mock your diligence. Clearly his ego is in the way of his research.

Gabby

I have had Fibromyalgia since childhood and tried every modality, supplement, therapy and medication. The ONLY medicine that helps manage my pain, is Narcotic Medication. Along, with Yoga, Pilates and Meditation, the Narcotic medicine, gives me a quality of life.

Rakel

Dave, you are being unfair and I can understand that living with fibromyalgia you may be angry. There is a massive amount of research into pain, conferences, the calcium ion experiments which would be a cure if they could pull it off (read Wired June 2017), published papers, ciwntufic meetings etc. Most pain doctors genuinely try hard (at least in the UK where I live) to help their patients but patients have to help themselves too as Donna has explained so well. Fibro and chronic pain conditions are not a take a pill and feel better better illnesses as they are rooted in the Central Nervous System ie are neurological and therefore affect the whole system, the emotional state of the patient effects pain levels, the amount and quality of psycho social support the patient has affect pain levels etc etc. The CNS cannot tell the difference between the emotional and the physical,and that is where the cutting edge of pain management is now.It requires input from the patients and always will of the kind Donna describes so well here. Recently I have got rid of intractable leg pain which woke me at night every night many times. I took had tried everything except wrong my body: a ton of pain killers, RF Nerve ablation, Epidurals, different mattresses, earthing sheets then I finally found a good physiotherapist/Chiropracter who gave me exercises which have eliminated that pain – providing I do them daily. Read Peter Egoscue https://www.amazon.com/s?k=Peter+Egoscue&i=stripbooks-intl-ship&ref=nb_sb_noss

Gail Pease

See your local homeopathist to get rid of Lyme’s. My sister did.

Cindy

Thank you Donna for your insight in your article! I am Reading everyone’s experiences with Fibromyalgia & am
finding it is educating and insightful. I was diagnosed with this condition many years ago through a pain clinic where I was a patient. My Fibromyalgia started after a bout of double Pneumonia during my 8th month of pregnancy. I could never get over the exhaustion that I had developed with it. I did not know what the pain and overwhelming tiredness was from. I thought I was still sick and sought antibiotics often for the illness I thought I had. Many years later, I was in a rollover car accident that ruptured a couple of discs in my neck and lower back. This is when my Fibromyalgia was finally diagnosed through a pain clinic. I am no longer at this pain clinic that diagnosed me and have recently moved to a new State. I am finding that most doctors I bring up the term “Fibromyalgia ” to, dismiss the conversation and are uncomfortable . Also, I did not know that it can cause foot pain! My feet sometimes hurt just to walk on them. I have all over body pain everyday. I have recently started
taking Neurotin for my nerve pain in my back and I am getting relief from my allover body pain with it as
well. It seems that emotional stress knocks me down for several days. I am currently caring for my 87 yr old father, very ill husband , and mentally slow Aunt. I feel overwhelmed many times a day! I have been able to convince my new primary care physician to allow me 2 pain pills a day, but it is not enough to keep me comfortable. I have started to go to a gym every other day and it makes me feel better after I am finished with the resistance and aerobic exercise. It is very hard
to make myself go, however! I literally drag myself there most of the time. I do have times where I am on the couch for days and do not have he energy to even take care of myself. I really appreciated reading the different experience’s that were shared here.

dave

Donnas article reflects the increasing self reliance of people in pain on themselves and the great failure of science and our institutions to be effective in needing the needs of people in pain. As Hume wrote science is unfit to ascertain fixed determinations about reality- and hundreds of years later it is clear medical science has failed to achieve certainty in diagnosing or treating people with fibro-and other pain conditions. But like fools returning to their folly- researchers keep asking for more taxpayer dollars instead of reforming their underpowered and unfit research processes. And what has govt or academia done to reform poor research on fibro. In 1999 NIH had a project to look for preventing fibro- no research on preventing fibro was done by NIH since that time. The tragic farce of govt efforts in fibro is what we are awakening to as well as the hideous lack of care and ethics in government when it comes to suffering from pain.
People in pain like DOnna are increasingly improving their own efforts and calling for reforms in our pain care system. They are the remedy for our govt and institutions failure in pain care as it is only too clear govt and our institutions are too careless too narcissistic to reform themselves.

Ali

Fibromyalgia is multidisciplinary disease that requires energy just to solve the 24/7 return and or continued intracable chronic pain.
Physical aspects of Fibro can debilitate the patient even with a very high pain threshold. This takes minutes, hours, days to find the defining medication, OTC medicatin, homeopathic solutions to relieve a complex of multiple areas physically to soften the ache, intracable chronic pain, and foggy brain syndrome.
As a retired RN,CNN when fibromyalgia first surfaced with patients c/o intracable chronic pain there was no diagnosis, no code to bill for, no insurance accepting diagnosis, and physician’s saw the patient as depressed, mentality unstable, or being most were women complainers of unreliable symptoms due to female emotions. Many years of struggling to find a way to show this disease is not a result of emotional female complaints.
For some patients with insurance, income to handle homeopathic routes, spas, massages, and OTC meds etc… there are as many who do have access to any of the above. I have found this disparity in the medical field of patients.
For some the only route is prescription medication from a physician due to many multifactors.
A patient in a near death MVA, drunk driver, developed fibro due to multiple broken bones, multiple surgies, and many damaged nerves. Insurance $100,000 split between three people doesn’t go far. Patients insurane maxed out and loss of job add medical bills almost bankrupt. So very limited on finances to afford homeopathic, OTC, and therapy.
I find very little out there for these patients with limited income diagnoses with Fibromyalgia.
I am in awe of your schedule to relieve the pain. For I to have Fibromyalgia and understand the complexities. You have done well to resolve many issues.
This is not a disease that causes death but it does cause death to many moments in our life.

Mareaeric Campagna

Thank you Donna for sharing all your regimens and ideas that work for you. It was very interesting just reading about how another individual deals with their particular pain and ailments. Hey, there are others who go through all the craziness I go through everyday, and have certain things they use for different issues just like I do! You really made me feel not so alone in the world.
I am at this very moment trying to get my body to calm down following 2 very busy days of being on my feet.
It has taken me many years to figure out my daily schedule and regimen of what my body can and can’t tolerate. Once a person gets a better hold on that, they are more apt to be able to get on top of the pain. It’s only been 18 years!
Blessings!

I was given cholestyramine for my recurring GI issue, but some docs & pharmacists told me it could reduce the effectiveness of my other meds…including the pain meds. Anyone have thoughts on that?

Thanks for the well-thought-out plan idea, Donna. Excellent idea!

FST

I, too, suffer from the double whammy of Fibromyalgia and Lymes (double the whammy of Lymes from two concurrent infected ticks at the same time). I’ve had these diagnoses ten years, so I’ve probably found the maximum relieving protocols for me by now.

I can’t take or do anything complicated any more. I also have Degenerative Joint Disease and Degenerative Disc Disease, so yes on the limited movements that don’t cause unneeded extra pain. This sounds like a cop-out, but I’m old and already lived a lifetime of working my head off to help the world while providing for my family. My go-to escape is reading. I can lose myself in a good documentary or biography. No fiction for this girl. I like real life scenarios, my Fibro fog be darned.

First I have to take the pain med/Neirontin/muscle relaxer cocktail; Fibromyalgia’s worst enemy for many years. My pain clinic won’t accept marijuana, but I think that’s too bad and they probably all will in time. I also have Phenergan for times of nausea.

I say “Onward” to my fellow Fibromyalgia/chronic Lymes sufferers! You are not alone.

Carole Porter

Thanks so much Donna for sharing your experiences. It’s so helpful when we “brain storm”-this darn illness is aging me way too soon.

James McCay

Very good post Donna! Well written, upbeat, funny, and said to myself “Oh, so others do have that!”. AGAIN, my doctors simply weren’t listening to me. This post will help many with just Fibromyalgia.

I honestly never focused much on the Fibromyalgia because my Myasthenia Gravis & Degenerative Disc Disease causes almost every symptom you listed for Fibromyalgia!

They told me I had Bilateral Sciatica (just to make life easier on themselves) for over TEN YEARS just because they either didn’t feel like looking at my scans close enough, or they forgot what to look for.
I luckily had the Golden Ticket: STRAIGHT MEDICAID for 8-years (until they just cancelled it in NYC w/a lame excuse [in truth it was Obama’s cuts to Medicaid} and I’ve been fighting to get it back ever since without any hope).

So I had 2nd-10th second opinions from the “best” Neurologists and Neurosurgeons in Manhattan from 2003-2012 and multiple MRI’s, CT Scans, Nerve Conduction studies, etc. And only an ER Neurologist (fresh out of school; who are often the smartest overall- if they didn’t cheat in school) in 2012 told me “Nothing is wrong with either sciatic stem or channel.”, then he pointed to these items on the MRI and ended saying “So you never had sciatica at all!”. That blew me away but explained a lot!

Then my diagnosis was changed to Fibromyalgia for my legs tingling, numbness and very severe daily calf muscle pain/cramping. Plus one or both legs just go dead and I collapse a few times a month.

I have Fibromyalgia, Degenerative Disc Disease (six discs in my neck & lowest back with pinched nerves in both areas) AND Advanced General Myasthenia Gravis with Hyperthymusism (in short; XXL Thymus Gland that’s hyperactive and blocks all meds from working right or at all! The worse my MG gets, the more my system blocks meds!). So I never know which symptom is coming from what disease; making my life all the more complex.

Do what you love online. Live day by day.

Vincent

Did y’all have to live like this before the guidelines came out and RX opiates started being slashed?

Rick

Sounds like you have adhesive Arachnoiditis. Look it up, you will be surprised.

This is extremely well-written and comprehensive for this multifactorial illness, its sufferings and helpful treatments outlined. I think it will help many chronic pain patients struggling
with similar symptoms.

Donna

For the seemingly all over burning nerve type pain I take Hylands Leg Cramps homeopathic formula. I found out it helped when I took it for my leg cramps. Sure wish I’d had it as a kid. I used to wake up literally screaming from the pain.
My chiropractor also said to use ice instead of heat. Which is generally fine for me because weirdly for fibromyalgia ice helps me. I also use the heating pad occasionally.
Energy wise I try to take my iron every day. But if I’m extremely a bad I might take a Primatene. Primatene can effect blood pressure though since it has ephedrine in it. I take it occasionally for asthna/allergies under my doctor’s care. But it’s over the counter in the pharmacy.
I also take a dose of calcium, magnesium, zinc when hurting all over really bad. As well as coconut oil pills for the arthritis in my fusion.

I also bought foot levelers Orthotics from my chiropractor that pretty much keep my feet from hurting. They’re designed to help with your chiropractic Care.
I’m also probably going to buy a professional level infrared device from him to help with inflammation, headaches, back pain etc. soon.
If I’ve saved up enough anyway.
I also use a prescription lidocaine compound on the worst places.
The nerve ablation in my low back around the fusion helps a lot.
Especially since I don’t get put under for it. I can then tell them which spot hurts the worse. If I don’t practically scream try another spot.
I can take the temporary pain from it. But not the long term pain.

Leona

This is the best summary of how to deal with the fibromyalgia demons. I have followed Donnas blog for several years and read all the comments on pain, sleep, and fibrofog and other symptoms her followers write about. My flares have no set pattern in timing or intensity. I have been on so many meds, patches, balms, ointments, holistic modalities, traveled out of state to a renowned MD for consultation, and read every book since it all began 25 years ago. I have also fallen victim to those selling potions, pills, and devices claiming they have the answer. So I guess by now I am living proof that fibromyalgia does not kill you, instead, it takes away a piece of your life when a flare knocks you off your feet and onto the sofa. There have been days when my husband and I would plan a mini getaway only to wake up that morning in a bad flare and I don’t want to move. I am blessed to have a very understanding and compassionate husband , and a forum that offers suggestions and one that lets me know I am not the only one looking for relief.
Thank you Donna.