Fibromyalgia: The Complete Beginner’s Survival Guide

“Fibromyalgia is going to ruin your life.”

“You’re going to have to give up everything you love.”

“No one will ever understand what you’re going through.”

“Feeling ‘good’ is going to seem like a precious gift.”

These were the ‘kindest’ of the things I told myself as I started my path into the murky woods of Fibromyalgia. I’m guessing, since you’re reading this, that you’ve said some of the same things to yourself.

You’ve run the gamut of emotions and it has left you confused, sad, angry, lost. Oh wait…that was just in the last 5 minutes. And only if you could force your brain to think on any particular topic for more than a few seconds while trudging through a sea of fog.

Does any of this sound familiar? If so, you’ve likely been diagnosed with Fibromyalgia and find yourself trying to figure out how to move forward. I’ve been there and done it right along with you!

This guide is jam-packed with information that I wish I would have known when I was first diagnosed. We’re going to cover:

  • 4 things Fibromyalgia is
  • 3 things Fibromyalgia is not
  • Medication treatments for Fibromyalgia
  • Non-medication treatments for Fibromyalgia
  • Energy Management
  • Stress Management
  • Difficulties in discussing Your diagnosis
  • Managing a career
  • Finding a Support Group

But before I jump head-first into the details, you’re probably wondering who I am to give you all this information.

Why should you listen to me?

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication
Two weeks into Fibromyalgia and sleeping at every opportunity!

I’m sure we each have our own painful story about how we developed Fibromyalgia and eventually got our diagnosis. If you’re like me, you might even remember the exact day your life changed. I’ll share my personal story very briefly with you here:

In August 2013, I got a migraine. Not my first, but absolutely my longest. It turned into a virus of some variety over the course of a week. The usual – aches, fever, exhaustion. I went on a camping trip the following weekend and slept like the dead the whole time (as shown above). The only difference between this bug and all the rest…. I never got over it.

During the next 5 months, I missed approximately 2.5 to 3 weeks of work a month. My usual 7-day-a-week workouts and 40-mile weekend bike rides were OUT OF THE QUESTION!

Once I finally figured out that I was dealing with something different than an ongoing virus/infection, I started to take it a little easier. I was able to work about 2 weeks every month. Maybe I was getting better?

Sadly, I plateaued at that point and I followed an ‘up and down’ path for the next 6 years.

My official diagnosis came in 2017 and I immediately started googling ALL. THE. THINGS. I could find on Fibromyalgia.

The Beginner’s Guide Starts

Despite my annoying habit of researching a thing to death, I wasn’t able to find a lot of conclusive info to appease my worried mind.

Perhaps you’ve noticed there is almost no definitive answer to what Fibromyalgia is – or if it even exists? There are so many ‘schools of thought’ on how to treat it that it will make your already spinning head twist right off your shoulders!

I finally decided to look at my experience as exactly what it was. My own personal struggle with a change in health that resulted in my own personal constellation of symptoms.

With that new mindset firmly in place, I trudged (slowly and painfully) forward into my search for answers. I’ve decided to put all this research into one place, which you will find below. It is my hope that you find it useful in your own search for happiness and health. For the sake of this article, we’re assuming you’ve worked with a doctor (or dozens of them, amiright?) to receive your diagnosis of exclusion.

One of the most frustrating parts of Fibro is getting a diagnosis. I know I’m skipping that part. I’m sorry.** But in the name of not writing a 20,000-word compendium, I had to start somewhere.

**Mentally adds “Getting a Fibro diagnosis” to my list of future posts.

I can’t say I’m an expert. I’m still trying and failing new ways to improve my health. But that’s what keeps me going…faith that I will figure it all out. And dedication to the idea that I can and will live a full and happy life WITH Fibro.

The thing is, I do believe that. And absolutely, I believe the same is possible for you.

Above all, I want to say to you (on repeat, ad nauseam, forever) that you are not crazy! To this day, I have to remind myself of this frequently!

Nothing, and I do mean nothing, was as validating to my ‘state of health’ as sitting in the Mayo Clinic’s Fibromyalgia Center and listening to the discussion exactly mirror what I’d been seeing for the 4 years. So, in the interest of sharing that same validation with you, let’s get started.

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4 Things Fibromyalgia “IS”

Let’s start with this AMAZING video put together by One Minute Medical School. I don’t think you’re going to find a better high-level overview.

httpss://www.youtube.com/watch?v=FukBZp9gyQQ
What is Fibromyalgia?

Fibromyalgia IS more likely to impact women

Firstly, I’m going to start with the assumption that you are relatively new to the world of having a definitive diagnosis (more on “definitive” in a second). Perhaps you’re a 30-40 something woman, statistically. Although, honestly, this syndrome can smack anyone, so maybe you’re a 60-year-old man. Or, maybe you’re like the 15-year-old girl I met at the Mayo Clinic who had been sick for 2 years.

Either way, take a look at the percentages below:

As you can see, women are much more likely to report having Fibromyalgia. I don’t want to get too technical, but there are some obvious limitations to this data, including the fact that these numbers are based on people who self-report having Fibro. Suffice it to say, we can assume this data is reasonably accurate and shows that women in their 30’s and older are much more likely to have Fibro.

Takeaway:

At the very least, it’s nice to know there are others out there facing the same struggles as you who are likely in a similar place in life. This makes finding a listening ear and an understanding heart much easier, if you know where to look.

I’ll give you some tips a little later on how to find the right support groups.

Fibromyalgia IS diagnosed by exclusion

Let me guess:

You had every test known to man-kind run on your blood over the course of many years. Personally, I started calling the phlebotomists blood-suckers. (It usually got me a laugh and distracted me from the needles.)

The most familiar part is what comes next, though. The inevitable call that ‘everything looked normal’ and ‘you’re just fine’. (GAA…grumble…&#$@)

The problem is, as you can see in the following graphic, there are a boat-load of conditions that Fibromyalgia loves to mimic.

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication
Other conditions to eliminate before diagnosis

It takes time. And money. And doctors. Then a little more time, just for good measure.

Speaking of time, I think it’s time we drop our past disappointments at the door (talking to myself, too) and look at it this way:

Each test was another item checked off the long list of other possible diagnoses. Each one needed to be eliminated before your doctor was willing to say the word “Fibromyalgia” with any degree of certainty. In order to achieve that definitive answer mentioned above, you had to run that particular marathon – metaphorically speaking. ‘Cause let’s be honest, we’re not running an actual marathon any time soon.

According to the National Fibromyalgia and Chronic Pain Association, this ‘process of elimination’ takes an estimated 5 years, on average. Certainly, it takes a long frustrating time to get a diagnosis.

Takeaway:

Once that diagnosis is achieved, it’s time to move on to the next phase of healing. On the tough days, when you doubt yourself, you can be thankful that your doctors so thoroughly eliminated everything else.

Keep reading to find out about recommended Next Steps.

Fibromyalgia IS going to change the way you live

If you’ve made it far enough to get a diagnosis you already know this to be true.

I’m sure you’ve had to give up things and people that you used to have as staples in your life. You might have had to give up a job you loved (or hated). Or maybe a favorite hobby. I had to give up riding my bike, which I grieved over for a very long time.

The ugly truth is, you’re going to have to make compromises and bargains and trades with the physical and emotional energy you have. And that is going to look COMPLETELY UNIQUE to who you are, what your priorities are, and how you manage your Fibro.

Trial and error is the name of the game here. You’re going to feel like you’re on your very own roller-coaster.

One day you’ll try too much (cough cough….I mowed the lawn last Monday). Subsequently, you’ll be down for a week. But now you know that mowing the lawn was a bad idea. Or maybe mowing the lawn and then scrubbing the toilets in one day was a bad idea. #Don’tjudgeme #I’mnotanewbie #Ishouldhaveknownbetter

Takeaway:

I’m going to introduce you to Christine Miserandino’s Spoon Theory a little further down. If you haven’t seen this (or something similar) it will absolutely change the way you look at and plan your days/weeks.

Perhaps you’ll find that, although different, this new life is liveable. And maybe you’ll find new activities to love. I know I sure have!

Fibromyalgia IS going to impact the people you love

If you have people in your life who you love, or who love you, then Fibromyalgia WILL impact their life.

Side note – If you don’t have someone, then officially consider me someone in your life who loves you and wants the best for you. Drop me a line any time! -Amanda@TheWindingWillows.com

I met my husband 3 months after developing Fibromyalgia. He has never known me as who I was ‘before’. If I stop and think about that, it’ll get me down so I choose to celebrate that he has helped me become who I am now.

Very realistically, someone is going to be picking up the slack in areas where you are no longer as fully-functioning. You will have to rely more heavily on spouses/parents/kids/friends than ever before.

That fact can get you all ‘up in the feels’ but that’s not the point of this…point. The point is, it probably is going to have them all ‘up in the feels’, too. Get my point? That’s okay…I’m pretty sure I confusing myself, too. I’ll re-phrase.

Don’t forget that they might be struggling, too. Admittedly, it is VERY EASY to get so wrapped up in our needs that we forget about every else.

Takeaway:

What you’re looking for is a situation where you communicate well enough with each other that you both feel your needs are, at a minimum, being considered by the other person.

In case I haven’t said this already (and a quick scan indicates I haven’t…so it’s about time) practice makes perfect. We are all human and you are not going to get the hang of this in one weekend.

Practice the philosophy of continuous improvement. Get a little bit better every single day.

Brian Tracy

3 Things Fibromyalgia “IS NOT”

Fibromyalgia IS NOT preventable

Don’t do it. Just don’t.

There is nothing you could have done to prevent Fibromyalgia. DO NOT feel guilty. Trust me, you’ll have enough to feel guilty about that you can change in some way without worrying about this particular sore spot.

Truth is, there is zero agreement among academics and/or doctors about what causes this syndrome. There are several risks factors that are found repeatedly in patients with Fibromyalgia and so it’s possible the cause can be found in one of these:

  • Trauma
  • Viral Illness
  • Age/Sex
  • Family history
  • Obesity (according to the CDC, but not Mayo)

Takeaway:

I’ll make short work of this point. We do not know what causes it. So even if you could have prevented it, no one knows how.

Fibromyalgia IS NOT degenerative

It was a great comfort to me, when I was first diagnosed, to have this concept introduced to me. Simply put, Fibromyalgia is not physically breaking down your body.

Please, don’t misunderstand me. This DOES NOT mean you can’t get worse. It simply means that it is not causing physical damage to your body.

Let’s look at this a little more closely:

All pain comes from the same place. Namely, the brain. When you break your leg, the nerves in your leg scamper to your brain delivering a pain signal. Eventually, the break will heal and the nerves will stop delivering a pain signal.

In Fibromyalgia, our nerves have begun sending pain signals for unknown reasons**. We genuinely feel the pain because the signals have been sent to our brains. However, unlike the broken bone, no damage has been done to our body.

In the same way, the misfiring nerves – although capable of becoming worse through nerve recruitment- are not causing or caused by physical damage.

**A lot of Fibromyalgia research revolves around what causes increased pain. One particular area of study that I find interesting is the increased levels of Substance P in Fibro patients. If you’d like a really short (non-scholarly) read on this, click here. I’m always fascinated to read about actual physiological differences of fibro v non-fibro people. It’s less ‘in your head’ when there’s a medical reason for something!

Takeaway:

Why does all this matter?

There is SO MUCH hope in that statement!

I’ve compiled some methods for you to try that could potentially get your nervous system to settle down. If you’re wondering what your nervous system has to do with it, well it comes down to the next point:

Fibromyalgia IS NOT an isolated diagnosis (usually)

If you’ve spent any time scrolling through online message boards, social media groups, etc you’ve probably seen something like this.

“Hi, my name is Amanda and I have Fibro, CFS, POTS, RLS, MCS, migraine disorder, frequent Costochondritis, and anxiety/depression.”

This is because, according to a study published in the American Journal of Medicine, Fibromyalgia patients “display high rates” of a variety of other diseases and conditions.

The term for this is comorbid. The ‘morbid’ part makes it sounds bad, but it simply means “present simultaneously in a patient.”

I can tell you from experience (and you can see in the list above) that has been absolutely true for me and others I have interacted with. Interestingly, one study showed a rate of more than half of Fibro patients having 7 or more comorbid conditions!

As you can see below, the list is extensive. Additionally, some of the items on here are categories of conditions. Sleep disturbances, for example, include insomnia and sleep apnea.

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication
Fibromyalgia – comorbid conditions

Central Sensitization Syndrome

Here is where your nervous system comes in to play! (You thought I’d forgot, didn’t you??) Central Sensitization Syndrome (CSS) is here because it was absolutely revolutionary for me. Seriously, it single-handedly changed the way I looked at my health!

There I was, sitting in the Mayo clinic with a multiple-page long list of everything that I thought was wrong with me. A list of the ways I knew my body had been breaking down for 4 years.

The ease with which they said Fibromyalgia was almost scary.

“Why are you ignoring all these other things,” I grumbled in my head.

It wasn’t until 2 days later, as I was sitting in the self-care training that I began to connect the dots. Amazingly, almost EVERY. ONE. of the issues I had on my list fit under the umbrella of CSS.

Viewed in this model, Fibromyalgia is one of the many conditions that fall under CSS. Essentially, your nervous system is stuck in the ‘on’ position. It means constantly being in ‘fight-or-flight’ mode.

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

For the normal parts of the population, fight-or-flight mode is a temporary circumstance. Your body temporarily ignores non-essential processes (like digestion, critical thinking, healing, etc) in favor of survival.

When that mode lasts for a short time, it doesn’t result in long term issues. However, in CSS, long term disruption of higher-functioning processes results in the constellation of symptoms and syndromes very frequently seen together.

Takeaway:

Take comfort in this thought: many of your symptoms that fall outside the range of Fibromyalgia may, in fact, be related.

For example, reoccurring chest pain in the absence of tests indicating otherwise is likely costochondritis. You can stop worry about mystery heart ailments.

Or UTI pain, again in the absence of tests indicating active infection, could be Interstitial Cystitis.

More than likely your frequent migraines are a migraine disorder or food sensitivity and not an incurable brain tumor.

I don’t know about you, but I like knowing that my (many, many) symptoms are related to a primary cause. Otherwise I just went about thinking that everything on my body was breaking down and I was on a fast-track to the cemetery.

Side note – The idea of CSS, like almost every other aspect of Fibro research, is not universally accepted. However, it so fully explains what I experience that I feel it necessary to share with you, in case you have a similar experience. Additionally, it was being taught as fact at the Mayo Clinic which gives it quite a bit of authority, in my mind.

Treating Fibromyalgia

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Ok, hopefully now you have a fuller understanding of what Fibromyalgia is and how it impacts your health and life.

But there’s a chance none of it matters, other than for your peace of mind, if you don’t then figure out what to do with that information.

My goal is to share a summary of the various treatment options I’ve heard about or seen discussed. The following information is not exhaustive. It’s also coming from little ‘ol me…..not medically trained in any way. That is to say, I am not advocating for any particular item. In my experience, the correct solution is probably a mix of different methods.

Without further ado, let’s go:

Pills, Pills, and More Pills

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By pharmaceuticals, I am not referring to opioids, although that is a path that many have chosen to take. And I certainly will never discount any advantage people have found with them because I am not living their experience.

However, I will say one thing about opioid use before moving on. If you’ve never heard the term Opioid-Induced Hyperalgesia, it’s worth googling (or this is a good resource I found).

A very simplified summary is that opioids have been found to increase a nerve’s sensitivity to pain signals. So, as they’re being used, they temporarily dampen pain but increase it in the long run. The ‘solution’ at that point is to increase dosage, which increases the pain signal even more. Eventually, you’ll max out on dosage and be left with MUCH higher pain levels / lower pain tolerance.

And that’s all I’ll say. Moving on.

The following medicines are currently being widely used to treat Fibromyalgia symptoms:

Duloxetine – Brand name Cymbalta (FDA Approved for Fibro) – Type: SNRI – Best used for pain + mood symptoms

Milnacipran – Brand name Savella (FDA Approved for Fibro) – Type: SNRI – Best used for pain + mood symptoms

Pregabalin – Brand name Lyrica (FDA Approved for Firbro) – Type: Alpha-2-Delta CA channel ligand – Best used for pain + sleep + parenthesis symptoms

Gabapentin – Multiple brand names – Type: Alpha-2-Delta CA channel ligand – Best used for pain + sleep + paresthesia symptoms

Amitriptyline – Elavil – Type: Tricyclic antidepressant – Best used for mood + sleep symptoms

Nortriptyline – Brand name Pamelor – Type: Tricyclic antidepressant – Best used for mood + sleep symptoms

Low Dose Naltrexone – Brand name Vivitrol, Revia – Type: Opiate antagonist – Best used for fatigue + stress symptoms

NSAID use in Fibromyalgia

I’m going to go out on a limb here and say that this type of drug is the most familiar to all of us. NSAID (non-steroid anti-inflammatory drugs) is a class of drug that contains medicine such as Ibuprofin, Asprin, Aleve, Tylenol, etc.

I’m sure you won’t be surprised to hear that researchers are unable to agree on the benefit of these types of drugs on Fibromyalgia.

Some say there is no evidence that they are ineffective. One study actually showed a higher percentage of people experiencing pain relief in the group who were taking a placebo instead of an actual NSAID. Others say they do not work because they treat a different kind of pain (that doesn’t come from the nerves). Even others say the benefit of NSAIDs does not outweigh the health consequences of long term use.

I’m not giving advice one way or the other, but I would recommend talking to your doctor if you have been, or plan on, using this type of medication long term.

I caused chronic inflammation (ironically) in my gallbladder and stomach, as well as massive rebound headaches with long term NSAID usage. This resulted in both a gallbladder removal and major stomach surgery! I now save them for my more extreme pain days.

Supplements

Because we are all very different with very different vitamin/mineral/supplement needs I’ve opted to not give a list of possible supplements here.

Suffice it to say, it may be worth finding a Functional Medicine Doctor (FMD) in your area and talking to them about your specific experience. If you’re unsure where to start looking for an FMD, I’d start with the Institute for Functional Medicine’s lookup tool.

I can say with 100% certainty that the FMD I’ve worked with since January 2019 has absolutely improved my quality of life. Part of that advancement can be tracked to the supplement list that he generated specifically based on my blood work.

Traditional Therapies for Fibromyalgia

I know the word “Therapy” can be cringe-worthy!

Hopefully you didn’t just scroll on by the ‘therapy’ section!

It gets a lot of judgment in our society. Maybe that will eventually change. Until then, please hear me out.

There are a few different types of ‘traditional’ therapies. Each has their area of focus and can benefit you in specific ways. At the very least, I’d love you to know your options so you can make informed decisions going forward.

Physical Therapy

This form of therapy focuses on your musculoskeletal system and all the ways it interacts. This type of therapy is not typically ongoing. A common recommendation is 8-12 weeks.

Many types of pain can be mediated by strengthening and stretching particular muscle groups. A physical therapist (PT) will walk you through stretches and movements to target your problem areas.

Another service that can be offered by a PT is a tailored exercise routine.

Exercise – ugh- another cringe-worthy term!

However, one of the very few universally accepted treatments of Fibromyalgia is gradual and light exercise.

If you work with a trained PT, they can evaluate your activity level (or lack there-of) and make recommendations for light exercises that will not set you back. And this usually means starting extremely small.

From my experience, these exercises look more like stretches than anything else. And they sucked at first! But over the course of weeks, I was able to increase v.e.r.y. slowly and definitely felt a small decrease in my pain level and increase in activity level.

Occupational Therapy

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

Instead of trying to define this one, I’m going to quote the American Occupational Therapy Association. ” [O]ccupational therapy helps clients to live and function productively. Within the context of chronic pain, occupational therapists evaluate the pain’s impact on a client’s desired activities and quality of life, and equip him or her with the skills and strategies to manage the pain.”

According to an article posted in the American Journal of Occupational Therapy, common occupational therapy techniques found to be helpful with Fibromyalgia are: ” cognitive–behavioral interventions; relaxation and stress management; emotional disclosure; physical activity; and multidisciplinary interventions for improving daily living, pain, depressive symptoms, and fatigue .”

This therapy is also considered a temporary therapy, usually 8 to 10 weeks. You may see the word ‘holistic’ associated with it, meaning they look at the whole person and not just a particular portion.

Overall, the goal of this type of therapy is to coach you into setting and meeting specific goals despite the complications presented by your health.

I went a little ‘quote heavy’ in this section, but in full disclosure, I haven’t participated in this type of therapy. I’d much rather give you accurate information than misrepresent what it is and how it could help!

I walk slowly but I never walk backward.

Abraham Lincoln

Mental Health Therapy

As a general rule, Fibromyalgia comes wrapped in a package that includes some form of depression and anxiety. Additionally, the life changes brought by chronic illness inevitably result in guilt, fear, stress, and detrimental ways of thinking.

This is where mental health therapy comes in. This type of therapy can be long or short term and is not recommended as a stand-alone treatment. In other words, it’s an excellent complement to a ‘full picture’ approach that may include traditional and non-traditional methods.

Another of the universally accepted truths of FM is that STRESS = BAD NEWS! Even if the idea of ‘talking about feelings’ turns you off to finding a good therapist, it might still be worth the effort to find one who can help you process your stress!

One place you might start is by using this lookup provided by the Anxiety and Depression Association of America. At the very least, you could always give it one shot. If you hate it or don’t find it useful, you will have only spent an hour of your life and can check off one possible treatment from your list!

Take a second to read this article from a therapist who explains specific ways therapy can benefit fibromyalgia patients.

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Non-Medication Treatments for Fibromyalgia

Just like traditional methods of treatment for Fibromyalgia, non-traditional methods are going to be effective for some people and not at all for others. They are best used in addition to other methods of treatment.

Let’s jump in.

Massage

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

I don’t think this topic needs much introduction. One thing to consider is that massage takes a lot of different forms. Full body, isolated areas, deep tissue, Swedish, relaxation. And that’s just the beginning. This is a great page that discusses the various types of massage.

If the thought of someone touching your pained body is enough to make you puke, I completely understand. However, given the right set of circumstances, massage can be very helpful and even downright enjoyable.

There are a few things you’ll want to do if you decide to explore this option. Here is a list of questions to ask yourself before you jump in:

  • What type of massage is right for you?
  • Is there a particular area of your body that needs more attention?
  • Is there a particular area of your body that is a no-go zone? (The back of my arms, for example, are much too painful to be touched ever!)
  • Is there a specific length of time that you can stand being touched?
  • How much are you willing to spend?
  • Will your insurance cover a medical massage?

Once you determine these things, you can find a massage therapist. I would recommend you have a discussion with them before setting the appointment. You will want to make sure their skills can meet your needs.

Additionally, DO NOT be afraid to tell them exactly what you can tolerate. I have had some very bad massage experiences because I was too afraid/embarrassed to fully express my needs. I’d hate for you to spend time and money on something that will leave you in more pain than when you began.

One more thing to keep in mind is timing. If you are in the middle of a pain flare, a massage is not likely to be beneficial.

Acupuncture

Acupuncture, if you are not familiar, is a form of ancient Chinese medicine utilizing very thin needles. They are inserted into your skin in specific areas resulting in various benefits both physically and mentally.

Because I’m not personally familiar with this type of therapy (yet), I’m going to refer you over to the Mayo Clinic if you want more detailed information: click here to get a full picture of what it is and its uses.

Here again, it will likely be worth the effort to discuss the procedure with the acupuncturist before scheduling an appointment. I know it goes against the grain for a lot of us to be blunt, but there really is no better time to practice than when it comes to our health needs.

Chiropractic

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

This one has had mixed results for me, so I’ve really dragged my feet on adding it in. However, I promised myself I would keep my personal bias out of this ‘treatment section’ so here we are.

If you don’t know much about it, chiropractic care uses gentle adjustments to your skeletal structure to help improve mobility and pain. They can be particularly helpful if you have underlying issues in a particular area that are exacerbating your pain levels.

A huge advantage to this type of care is that it is usually covered by insurance, where massage and acupuncture may not be.

Don’t forget to shop around for a chiropractor who truly understands Fibro. You’ll find that some a more heavy-handed in their adjustments and it can be very uncomfortable. Also, I’d recommend taking a little bit of pain reliever (Ibuprofin, for example) about 30 minutes before your appointment. This has been a good practice for me.

Diet

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

I’ll admit, I was skeptical about this one when my FMD said I needed a change. On top of that, I love(d) my gluten and sugar! However, I cannot deny that after a change in my eating habits in April 2019, I saw partial or complete remission of some symptoms.

And let’s be honest, the word ‘diet’ is a major turn-off for a lot of people!

But if you could spend a week, a month, or a few months trying something new and finding relief, would you?

The answer for me was “yes.”

I’m going to make a recommendation to you and I’m going to share a personal story. Hopefully these two things combined will assist you in making whatever decision is best for your experience.

Instead of taking a guess or googling it to death, I would recommend that you find a really good FMD or Nutritionist experienced in treating Fibromyalgia patients. Have a discussion with them about making dietary changes to treat your specific symptoms. The problem is, there are SO. MANY. OPTIONS out there and each one claims to be the best. Getting some professional direction here will be invaluable!

You might also find that you’ll have better accountability and an easier time complying with your new eating style if you have someone to help walk you through it.

A personal story

My FMD directed me to a diet that cut out all inflammatory and processed foods for several months in an attempt to heal a condition called Leaky Gut. Leaky gut, according to some studies, could be a major contributing factor to many chronic and autoimmune diseases.

The method of eating, called Autoimmune Protocol, cuts out certain food groups for a number of months or until symptoms are reduced. You then gradually reintroduce foods back in, one at a time, while paying attention to changes in symptoms. In this way, you can identify foods that cause your system problems.

Although this did not reduce my symptoms as much as it does for many, I can say that it almost completely eliminated my migraines, which I was experiencing 3-5 times a week before.

It also eliminated the IBS symptoms that had plagued me for over 3 years. I can truly say it has changed my life!

You can read more about this experience and my results here.

Perhaps you can find relief in diet changes, as well.

Yoga

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As mentioned previously, light and gradual exercise is one necessary component of controlling Fibromyalgia symptoms.

Yoga is great because it is both gentle movement (exercise) and stretching. You don’t even have to pay for expensive yoga classes, if you’re not inclined.

A simple search of YouTube results in plenty of at-home yoga videos. I would recommend searching for ‘gentle yoga’ or ‘yoga for fibromyalgia’. By doing this, you get the added bonus of being able to pause or take a break until you build up your strength a little.

Float Therapy

This is a not a newer, but lesser-known method of relaxation, stress management, and pain management that is really starting to build momentum.

Essentially, flotation therapy is a form of sensory deprivation that encourages relaxation and stress relief. Some studies indicate it increases happiness, as well! A sterile flotation tank is filled with about 6-12 inches of fresh water chock-full of Epsom salt. The salt content of the water is enough that any size of person is easily able to float.

In case you’re worried about claustrophobia, here are a few thoughts:

  • If you can’t stand the tank door being closed, you can leave it open.
  • You are completely in control of your environment….you can open the door at any time.
  • The ‘tank’ is actually quite large…some say about the size of a car.
  • The tank is both ventilated and airy. No need to worry about breathing.
  • Almost all flotation therapy providers will be more than happy to allow you to check out the tank before you set your appointment so you can manage your expectation.

The best way to find a flotation center in your area is to google “flotation therapy + (your town name).”

Marijuana, Hemp, and CBD, OH MY!

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

This particular area of study, cannabis for treating Fibromyaliga, has boomed in the years since medical marijuana has become a possibility. As you’d expect, the studies are extremely varied on the effectiveness of marijuana, CBD, and hemp products on Fibromyalgia.

One rather spectacular study published in the Journal of Rheumatology studied 30 patients who all had Fibromyalgia. Each and every one of them reported “significant improvement” in symptoms. Thirteen of them were even able to reduce the amount of medicine they took! Of note, however, was that 8 of them did experience mild side effects.

On the flip side, there is another study out there that shows increased pain after 4 years of cannabis use. Unfortunately, the people in this study were also taking opioids, which may have skewed the results. Another ‘review of studies’ indicates there is not enough evidence in existing studies to make a definitive statement that marijuana is effective in treating Fibromyalgia.

What does all this scientific mumbo-jumbo mean?

That no one really knows if cannabis products are an effective treatment for Fibromyalgia.

However, in the 4 years I’ve been compiling notes and research, this theme has shown up in every single board I’m a part of. I have read more testimonials than I can count from people who swear that marijuana, CBD, and hemp are the ONLY methods that have provided relief for their symptoms.

I’ll leave it up to you to decide!

If you do decide to try cannabis to treat fibromyalgia, make sure you’re aware of the laws in your state regarding marijuana and CBD usage. This interactive map may be a helpful place to start. Also, this article from Leafly is a great resource for determining which strain of marijuana may work for your symptoms.

Essential Oils

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

I’m sure you haven’t been anywhere on the internet in the last few years without hearing about ‘oils’ and how they can cure…everything.

Well, try not to judge too harshly if you haven’t tried them. I have found – and know others who also have – tremendous relief in some symptoms from their use.

If you’re looking for a natural and holistic option to treat symptoms, this is a great option for you. These oils, extracted from plants, can be used topically, orally, or in a diffuser.

There are hundreds of options for individual oils and oil blends that it may be less overwhelming to find a seller in your area. They can walk through which ones to use and how to use them with you.

You can also check out my guide to applying essential oils for migraine here.

Other Considerations

Ok, at this point we’ve gone through what Fibromyalgia IS, what it IS NOT, and several treatment methods for you to explore.

What in the world else could we have to cover? Well, I can think of just a few other consideration for fibromyaliga.

Let’s take a look.

Energy Management

I promised you earlier that we’d be covering the Spoon Theory, and now it’s time to deliver on that promise. I’m going to give you a summary, but it’s definitely worth reading the entire article by Christine here.

Christine, a Lupus patient, coined this method of explaining energy use in chronic illness patients. She gave her friend 12 actual spoons to hold then verbally walked her through a day. For each activity that used energy (waking up, taking a shower, getting ready for work, etc), she had to give up a spoon. She was left with a lot more day than spoons! The exercise helped her friend understand the crisis we face when attempting to fill our entire day with energy-sapping activity when we have a VERY limited supply.

What does the Spoon Theory have to do with Fibromyalgia, you ask?

Both Fibromyalgia and Lupus have fatigue in common. I’m guessing each person with Fibromyalgia reading this article is painfully familiar with the concept of ‘running out of spoons’ before you run out of tasks needing done.

One way to deal with fatigue and hopefully increase personal happiness is to properly allocate our spoons so we have enough left for the tasks that are necessary or important to us.

For example, in August 2019 I resigned from my job. [Insert strangely relaxed AND stressed Amanda here.]

I have found that when I’m not throwing spoons out the window left and right from stress and worrying about calling in sick AGAIN I have a more left for my family.

The point is, perhaps you can figure out what you need to use spoons for and cut out the activities that are taking more than their worth. Your family probably won’t care if you’ve showered today as long as you can spend time with them!

With some luck and practice, some of the treatment options I just shared might give you one or two more spoons in your day!

Stress Management

This topic is actually one of my favorites for a few reasons:

  • ‘Stress management’ could also be called ‘relaxing’ or ‘having fun’
  • Eliminating stress has been the most effective method of improving how I feel daily
  • Stress can kill….we should definitely manage it better even if we’re healthy!

I already mentioned previously that finding a therapist would be a great option for learning to manage stress better. If you’re not willing to try that yet, I’d like to make a recommendation.

Find a hobby (that doesn’t take a lot of energy and your health can manage) and explore it. Added bonus, it will keep you distracted on those bad days when leaving the bed/couch seems like a monumental task.

If you’re having a hard time thinking of something, here’s a list of 10 hobbies for Fibromyalgia that can get you started:

  • Writing poetry
  • Reading
  • Crossword / table puzzles
  • Exploring your religion
  • Meditation
  • Photography
  • Blogging
  • Learning a language
  • Knitting / Crochet
  • Gardening

Difficulties in Discussing Your Diagnosis

If you’ve struggled telling people you have Fibromyalgia, you are not alone!

As a matter of fact, I LOATH using that word when describing my health issues. I tell people “when my health went downhill” or “I have some health issues.” I rarely, if ever, say “I have Fibromyalgia.”

For me, I’m overcoming even my own pre-conceived notions about the word. Before I experienced it, I absolutely counted myself in the crowd of people who wasn’t sure it was a real thing.

Oh how wrong I was!

But even after all this time, I can’t let go of the thought that someone is going to hear me say I have Fibromyalgia and automatically discount everything I’ve experienced in the years since 2013.

If you’re struggled similarly, I’d love to hear more from you. When you’re done reading, leave me a comment on the way you’ve handled this issue!

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

HOWEVER, the point of all of this has been to give you as much information as possible. So in the interest of having a productive conversation on a diagnosis of Fibromyalgia, I’m going to share a few thoughts with you:

  • Start small. Practice having open and frank discussions about it with those people in your life whom you trust the most.
  • Not everyone needs to know. I struggle BIG TIME with being an over-sharer. Remind yourself that not everyone needs to know all the nitty-gritty of your life.
  • You are not under any obligation to explain or justify yourself. This isn’t to say you shouldn’t communicate with those who need important information, but if the grocery store checkout lady doesn’t believe that you’re too tired to lift the soda out of the cart….well….she’ll survive.
  • People are going to judge you. I know it’s hard, but please try to not let that get to you. Hopefully the group of people closest to you don’t fit this category. And, really, theirs and your opinions are the only ones that matter.
  • Those in your inner-circle probably want more information than “I just don’t feel good” when they ask you how you are. Somewhere my husband and parents are rolling their eyes that I’d dare advise someone else of this without doing it myself. However, I realize they’re right. I could have avoided some hard feeling between my husband and I if I’d said “I have a migraine” instead of just sitting around looking mopey. If your family cares enough to ask how you are, I’d recommend giving them a full and honest answer. They’ll appreciate knowing.

Don’t forget to comment on your tips for communicating about your Fibromyalgia.

Managing a career

If managing your job with Fibromyalgia has been as much of a stumbling block for you as it has for me, you have my full and utter sympathy.

I have given up two careers that I LOVED since 2018 because I’ve struggled so hard managing them and my health.

However, I also know that:

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

So, since quitting your job might not be an option, there are a few things you can do that help you to function and participate in your career.

Before we get there, though, you need to stop and ask yourself an honest question.

Does your current job require more of you than you’re willing or able to give?

If the answer to that is “Yes”, then perhaps a career change is in order. It is scary to think about, but could potentially improve your quality of life.

Assuming you are willing and able to stay in your current job, the following recommendations may make it easier to manage your Fibromyalgia while working:

  • Get enough sleep. And make sure it’s as quality as it can be. I’ll be sharing a resource on how to get quality sleep soon, so keep on the lookout for that!
  • Don’t use more energy than you can afford the day before. Remember, if you use more ‘spoons’ than you have in one day, you’re going to start the next day with even less.
  • Wear temperature appropriate clothing. For me, that means dressing in layers. My internal thermometer is faulty, so I dress for summer and winter each day.
  • Wear comfortable clothing. If your bra strap or belt is going to be painful, maybe forgo them or find a more comfy alternative.
  • Be prepared with food and snacks. Especially if you are on a modified eating method. It’s important to give our bodies the fuel they need to get through the day.
  • Take regular breaks. Even if they’re not long ones, a small break to stretch and take a breather can make a huge difference. If your job allows it, shoot for a small break every 90 minutes. If all else fails, look for the people smoking and see how often they take a break. Maybe you can follow them outside and take a small walk while they’re smoking.
  • Make your workspace comfy and ergonomically correct. A lot of HR departments offer ergonomic evaluations of desks/computers/chairs. Take them up on this if yours does. It’s amazing how much a difference screen height or chair setup can make in pain level!
  • Ask for a modified schedule. Your employer may be able to accommodate you if you struggle more during certain days/times. This is particularly true if you are on Family and Medical Leave (FMLA).
  • Be honest about your limitations. Make sure to communicate with your boss and HR department about what you can feasibly do and not do. Employers are mandated with a responsibility to make ‘reasonable accommodations’ if you request them.
  • Don’t forget to take care of yourself!

Finding a Support Group

Finding like-minded and like-experienced people can be extremely beneficial. They understand where you’re coming from and can share valuable tips to improve your health and life.

There is an almost endless list of support groups available…. if you know where to look. I personally started at the National Fibromyalgia and Chronic Pain Association’s lookup tool.

You can also use social media, in my case Facebook, to find groups. Just search for Fibromyalgia in the search bar and see what comes up.

One word of warning. You’ll find the ‘culture’ of some of these groups is very negative and hopeless. Only you really know what will be helpful for you, but I’d recommend staying away from groups that will make you feel worse about your situation instead of better.

Next Steps

New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

We have officially reached the end of the Complete Beginner’s Survival Guide for those newly diagnosed with Fibromyalgia.

I’m going to leave you with a few more parting recommendations.

  • Keep your mind open to possibilities you may have never considered before. It’s possible that a combination of yoga and diet could have you feeling better than you have in years. Be willing to give anything a shot, at least once.
  • Find a good primary care doctor (or specialist) AND a good Functional Medicine Doctor. Combining the advice from these people will likely have the best results.
  • Ask a lot of questions.
  • Invest in yourself and your health.
  • Don’t feel guilty for resting and taking care of yourself.
  • Keeping fighting!

I hope you have found something here that has been helpful for you. Comment below to tell me what topic you’d love to know more about!

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New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication
New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication
New Fibromyalgia diagnosis?  Learn more and figure out how to survive it. #naturaltreatments #medication #diet #therapies #NextSteps #career #communication

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10 thoughts on “Fibromyalgia: The Complete Beginner’s Survival Guide”

  1. Wow! I have recently been diagnosed with fibromyalgia and have felt so lost. I really appreciate this article – your insight and writing was so refreshing to read!

  2. Hello there! This article couldn’t be written much better!
    Reading through this article reminds me of my previous roommate!
    He continually kept talking about this. I’ll send this post to him.

    Fairly certain he will have a very good read. I appreciate you for sharing!

  3. Christy Jackson

    Hi Amanda,

    Thank you for writing this. I was diagnosed in 2002 with Fibromyalgia. I had a long run with minor symptoms off and after I started a career. I had a bout with anemia 2 years ago and my symptoms came back with a vengeance. I recently started yoga but overdid it although I know better. Thank you for your words of encouragement.

    Sincerely,

    Christy

    1. Christy, I hope you found something useful here! And I’m so sorry to hear your symptoms responded poorly to your anemia. I’ve had similar situations through the years where things have gotten worse and taken A LONG time to equalize. Oh, and I completely understand what you mean about overdoing it with the yoga. Hopefully you can take some time to rest and get back to it! And pace yourself 🙂
      Amanda

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