Fibromyalgia Does Not Define Me

I have fibromyalgia, and while it is a chronic disease, it does not control my life or define me. … Read More >Fibromyalgia Does Not Define Me

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I have fibromyalgia

Today I want to talk about Fibromyalgia. I was reading that a blog should be focused on one niche, but when I chose to start a blog, I chose Lifestyle and Travel.  While travel is my main focus, I also picked lifestyle blogging because it can literally cover any topic you want.  Having an outlet for my thoughts or topics of interest, and blogging is the best way I can think of to share these, and today I want to discuss a chronic illness.

I have fibromyalgia.  There, I said it.  It’s not something I advertise, and I refuse to let it dictate what I can or cannot do, but sometimes it slows me down.  When I was first diagnosed, I wasn’t shocked.  Some part of me knew I had it, but I refused to accept it.  I’m a nurse, and everything I am taught is science based, but for many years fibromyalgia seemed like such a catch-all term with no real scientific basis. As I kept telling myself that it wasn’t possible I had fibromyalgia, I knew that the pain and fatigue wasn’t all thyroid related either (as I kept telling myself).  While I do think my thyroid condition contributes, it certainly isn’t the cause

What's wrong with me?

When I finally got a doctor I felt like I could trust, about five years ago, I went to an appointment and described what was wrong with me.  I didn’t ask “could this be fibromyalgia”, I didn’t tell her I was worried that was what was wrong with me, I just presented the facts, which were as follows:

  • Muscle pain, which I best describe as feeling like I’ve worked out intensely, yet having done anything. For the most part this pain is NOT joint pain, but actually muscles that you would use when working out.
  • Fatigue that can be daunting at times. I was going to say crippling, but decided that isn’t the best description.  It is just overwhelming when you are exhausted, but still want to get stuff done.
  • Exhaustion….. yes I know I said fatigue above, but this is different. If do something, like go all out and have all day or two activities where I am active mostly non-stop, the next day or so I am so exhausted I can hardly do anything, and the pain flairs up.
  • Insomnia: Often even when I am totally exhausted, I cannot sleep at night. If I do get to sleep, I wake up multiple times a night.
  • Restless legs: while this isn’t a true indicator for fibromyalgia, I will explain the connection below.
  • Mental fog: As with a lot of the symptoms, this only occurs if I am exhausted or seriously stressed. It is by the grace of God I got through nursing school because it was the most stressful thing I have ever done.  I had to battle the mental fog while trying to pass tests and write papers. 

These symptoms mean what?

I should say, these are MY symptoms.  Everyone is different, everyone experiences fibromyalgia different, which is what makes it hard to diagnose. And, everybody responds differently to treatments.  When I presented these symptoms to my doctor, I still wasn’t convinced it was fibromyalgia. I had read about “trigger points” (pain points on the body that are often associated with fibromyalgia), and my pain isn’t limited to certain points.  It also isn’t crippling. A flare up would cause me to move slower, but it doesn’t stop me from doing most things. After I got done explaining my symptoms and what I was struggling with, she looked at me and said “you have fibromyalgia”. 

 At first I wanted to cry because I knew in the back of my mind this is what I was struggling with, but part of me didn’t really believe in it.  I asked her what makes her sure that I have fibromyalgia, and she said that over and over she hears people describe the same symptoms. She said the one thing that most have in common, is the pain that comes in flares, especially after having a full, busy, active day. They almost always described being wiped out the next day or two. She said when I explained this, she knew for sure. Typically, this disease response isn’t listed on the symptoms lists associated with fibromyalgia,  but most people who suffer from it describe the overwhelming exhaustion after being very active.  I should add, she did thorough testing to rule out any other diseases, which is often how a fibromyalgia is diagnosed.

 

Why Me?

My next question was, “why?”  Why do I have it, and what causes it?  Turns out, it’s not as much of a mystery as it used to be, but there isn’t one specific cause as of yet.  I do believe at some point it will be associated with toxins in our foods and environment, but the definitive correlation hasn’t been made yet.  However, researchers have found that it is a disease of the central nervous system (CNS). For whatever reason, the CNS is over-active in fibromyalgia and doesn’t process pain properly.  The CNS is also over-active in restless leg syndrome, so it’s not surprising many suffer from both of those at the same time.

Where do we go now?

Where do we go from here, I asked? Having done some research, I knew there wasn’t one therapy that works for everyone. I kept seeing talk about pain meds, and I knew this was not for me. Before she could answer me, I blurted out that I refuse to take narcotic pain medications.  Not only are they addicting, they are horribly constipating, sedating, and in my case, just plain make me sick.   My doctor agreed these would not be her first suggestion, and went on to add that various therapies and exercise can be very helpful. It’s no secret that there is no easy way to manage fibromyalgia pain, but I knew there were lots of things I would be willing to try as long as they weren’t pain meds. 

 *I should add a disclaimer here: if you need pain meds, for whatever reason, I am not trying to discredit you, I am just saying they are not for me and there are lots of other options out there to try.

Fibromalgia doesn't have to stop you

My doctor ended up being very knowledgeable about fibromyalgia. She suggested trying a medication specifically for nerve pain. Additionally she recommended different therapies, and explained that it would be trial and error before I found what helps.  Here is what I have learned; there is no cure for fibromyalgia, but it doesn’t need to rule your life.  I refuse to say “I can’t do that because I have fibromyalgia”.  That’s an excuse, and I CAN do anything I want.  I may pay the price the next day, but I’ve learned ways to decrease the nervous system response.  Finding a doctor that actually understands this disease, as best it can be understood, is the first line of defense.

What has worked, for me

For me, the medication for nerve pain has been a lifesaver.  I would say it has decreased my discomfort by 70% at least.  Next, getting enough sleep makes a huge difference.  This can be difficult for people with fibromyalgia, so finding ways to get better sleep is important.  I found that CBD Oil helps reduce pain and increase sleep quality.  By CBD oil, I mean, pure CBD with no THC in it, which is available in all 50 states and via mail order. I buy organic, non-gmo, third-party tested, high quality CBD oil (you can find here) and take a dropper full at night.  Sadly, it doesn’t work for everyone, but, I tend to believe it’s because they haven’t found the right dose yet.  CBD Oil comes in many strengths and you must play around with dosing to find what works. 

I also believe in massage therapy, acupuncture, hydrotherapy, supplements,  diet and exercise. They have all been very helpful. I’m not going to lie, during the winter I don’t get enough exercise, and I notice my symptoms start to creep up a little.  This past summer my husband and I started riding electric-assist bikes.  Not only is it a lot of fun, it’s a great work out and my symptoms actually decreased with more regular exercise.  

There is so much to be said about proper diet.  And by diet I mean, the food you put in your body.  I have struggled with weight since I was treated for thyroid disease 15 year ago.  Finally this past April/May I lost close to twenty pounds using an extreme diet.  While the diet was extreme, it gave my hypothalamus a chance to reset my weight set point, and I believe it helped heal my gut too.  By eating a limited diet with no sugar or carbs, and minimal fat, I was able to rid my body of the inflammation response that I get when I eat foods I shouldn’t.  This helped tremendously with fibro flare ups.  I didn’t really think I ate a lot of processed foods until I started analyzing everything, but I knew sugar was an issue for me.  Figuring out allergies helps.  I now know which foods I’m allergic to, and which ones trigger inflammation. Staying away from these has made a big difference too.  The fastest way for me to cause a flare up is to eat foods I know are triggers.

Lastly, supplements have been very helpful. If I can recommend only one, it would be magnesium. Magnesium is a key player in the central nervous symptom.  It works in several ways, but for fibromyalgia I find it helps relax muscles, calm restless legs, and promote proper nerve function. You can find more information on it’s importance here.

In addition to magnesium, Vitamin B12, Vitamin D3, essential fatty acids, and alpha-lipoic acids are all products that I have found work well for fibromyalgia. I had to try different things, until I found a combination of supplements that worked well for me. Pure Encapsulations brand supplements has a product called Daily Stress Formula that helped immensely.  The combo of vitamins, minerals & herbs works to reduce the stress response.  Stress can often be a key player in fibromyalgia.

A few thoughts and disclaimers

When I hear people say they can’t do something because they have fibromyalgia, I get annoyed.  It can make those of us suffering in silence look bad and puts a negative label on fibromyalgia.  I truly believe you CAN do anything, you are choosing not to and blaming an illness rather than doing the work to control it.  Is that harsh? Maybe.  Perhaps it’s because I’m a nurse and I get so tired of hearing the excuses….. for so many things.  My answer to anyone who says “I can’t” is, “yes you can” you just have to put in the work.  Find out what things help your pain/discomfort.  Find activities that lesson your symptoms and improve your health.  It’s often trial and error, but there are ways to feel better if you truly want to.

*I want to wrap this up with two more disclaimers.  First, I don’t feel good all the time.  I am still tired…. a lot.  I still have waves of not getting proper sleep that mess with my symptoms.  Often I go home from work feeling totally wiped out after an 8 hour shift. I still get “flares” of pain,  but I refuse to let a disease I cannot cure, control my life.  I will control it to the best of my ability and choose to live my best life.

*Second, I am not offering medical advice from a professional viewpoint.  I am just writing about what has worked for me.  Always consult with a doctor, a naturopath, or a fibromyalgia professional, when seeking the most up-to-date advice.  But never, ever give up!  If your doctor or care professional isn’t able to help you come up with a game plan, or isn’t well versed in fibromyalgia, find one who is.  It was the best choice I ever made. 

Here is a great website with comprehensive fibromyalgia information https://fibroandpain.org/

The CBD Oil I recommend

I have tried several brands of CBD oil, and this is the one I always come back to: Verified CBD Oil.  What I like about it is, it’s made in the U.S.A., it is organic, contains no GMO’s, and it has 3rd party testing done for quality, purity and potency.  All of the bottles I have purchased from them have worked the same each time, which leads me to believe that their potency is monitored appropriately.  I know when I order a bottle, it will work as good this time as it did last time.  Not all brands are created equal in that regards. While other brands may come in different flavors, those are just artificial flavors attempting to mask the grassy taste of the CBD oil, and are frankly unnecessary  Lastly, I test tons of products that use different carrier oils, typically it’s fractionated coconut oil, but Verified CBD uses hemp seed oil as the carrier oil, so you are getting a pure product with out added ingredients.  For me this was a lifesaver because I am allergic to coconut.  Lastly, Verified CBD goes out of their way to educate you.  Their website is loaded with information on cannabinoids and how they work in our bodies.  That is not to say other websites don’t do the same, I was just impressed with theirs.

Supplements brand I recommend

There are many brands of supplements out there, and sometimes it’s hard to know which to choose.  I have tried many, I have researched over and over, and I always come back to Pure Encapsulations.  I have several allergies, and Pure Encapsulations doesn’t use artificial colors, dyes, flavors, sweetners, nor do they use GMO’s, common food allergens and chemicals.  Lastly, as I described with the CBD oil, they are tested by a third party for the quality testing. 

4 Replies to “Fibromyalgia Does Not Define Me”

  1. Love this! As I’m in the midst of a bad flair up now 🙄

    Katherine says:
    1. Thank you! You should tell me what works for you! I’m always trying to find better ways to control this!

  2. I am a physical therapist and have treated patients with fibromyalgia. The exhaustion after an active day can be very difficult for some people. It’s awesome that you are still able to function even if it is slower. I’ve definitely heard that CBD oil helps. Take care. Raheela

    1. Thank you! And thank you for working with patients with fibromyalgia! It’s a hard disease to treat with so many variable for each person!

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