Fibro...My beginning

I can't speak for everyone. But for me, I knew there was something wrong from the very beginning. I listen to my body. I can tell when there is something wrong. Sometimes it makes me feel like a hypochondriac, but I'm usually right.

Fibromyalgia is caused by some type of event like an injury, an illness, or even a traumatic mental event (such as losing a loved one). But from what I've read, you have to have a genetic predisposition to it, meaning its a hidden trait found in your genes. And it just needs a catalyst for it to start being expressed.

I am fairly confident that mine came from illness. December 22, 2015, I woke up with a severe respiratory infection. It was a full blown case of pneumonia, that required a steroid, antibiotics, and 48 hour bed rest before I could drive home for Christmas. After about a week, I started to feel better, until January 1st, 2016, I went to urgent care because I was afraid my pneumonia was back. My chest X-Ray came back clear, and was diagnosed with a viral infection, and given another round of steroids. 6 weeks later I came down with another bad respiratory infection, this time though it was a strong case of bronchitis. About 6-8 weeks after that, I noticed my first symptom of what I would soon to know as Fibromyalgia.

I first noticed at night, my arms and legs would feel drained. I am not exaggerating, I felt like I could feel the energy being depleted out of my muscles. This feeling started occurring earlier and earlier in the day. Shortly after that started, I began to feel muscle aches in the evening. Muscle weakness would start around 4pm, and aches starting around 8/9pm. I was also tired, all the time! At this point in time, I had scheduled my first appointment with my primary doctor, complaining of the fatigue I was feeling, as well as the weird sensations in my arms and legs. I had also begun noticing I had diarrhea, and was going poo more frequently than I used too. He ordered a CBC with Differential, a full thyroid study, a Celiac/Gluten intolerance, CMV, and Epstein Barr (I had mono when I was 22, and thought maybe I had it again). Everything came back normal. Every test suggested I was currently healthy.

Then it got to the point where I felt muscle weakness all day, and the body aches were starting around 5pm, then 2pm, then noon, then the symptom would be present by 9am. The symptoms kept coming earlier and earlier in the day. And I kept noticing changes in my everyday life. I had been rock climbing for about 6-8 months by this time, and I loved it. But I began noticing my stamina decreasing. My arms would feel exhausted early on in my climb. I was also a beginner runner. For the first time in my life, I was enjoying running. And I was fairly good at it. But I noticed my legs started to get tired more easily. I had a follow up appointment with my doctor. He suggested I see an infectious disease specialist, convinced he would know what was wrong. I refused. I knew it wasn't an infection. I suggest maybe testing my cortisol levels. I thought maybe I had adrenal fatigue. They came back normal. At this point, I was so fed up and out of possibilities, I honestly questioned whether or not it could be cancer.

My symptoms continuously progressed, until the day I woke up with them. I was freaking out. I was crying hysterically on the phone to my doctor's nurse. I didn't understand what was wrong with me. But I knew there was something wrong! I finally had their attention. I immediately had a referral to an infectious disease specialist, and a rheumatologist, as well as a prescription for gabapentin.

The infectious disease specialist told me I did not have any sort of infection. That there was nothing he could do for me. The rheumatologist appointment went a little different. I explained all my symptoms. He had me write down where in my body I had pain, and to what severity the were. He also did the physical examination of testing the 18 trigger spots. After all was said and done, he sat me down and said "You have Fibromyalgia". He finally said it. It wasn't what I wanted to hear. I wanted something curable. But he finally put a name to what I was feeling. I felt relieved that I wasn't crazy. But I felt scared and unsure by the fact that there is no cure.

For me it took 9 months to get an answer. My symptoms started in March of 2016, and my diagnosis came in December of 2016. From my understanding, this is a very short amount of time. For most, it takes anywhere from 1-7 years to possibly get diagnosed. Use your voice! If you feel like something is wrong, follow that instinct. Make your doctor listen to you. You are the one going home every night in pain. You are the one battling this day in and day out. Your doctor sees you what, 1-4 times in a year? Be your own advocate. 9 months seemed like forever for me. I don't know how someone can go 7 years before knowing what was wrong. I've heard some went as long as 20 years before a diagnosis. Let's shed some light on this invisible illness. So that others are not left in the dark, thinking they are alone, and not understanding what is going on with our bodies.

Kratom: Super Power or Kryptonite?

A very popular new remedy for chronic pain has surfaced, and is facing a lot of controversy. Kratom. It is a plant that is native to the South East Asia region. It is related to the coffee bean plant. In high doses, it can have a sedative effect, and in low doses, it can have a stimulating effect. And this is where the controversy is coming from. Since it can be considered a stimulant, it automatically becomes a drug in the eyes of the government. And that makes people assume that it is addicting.

That last statement is false. It is only addictive if you are easily addicted to caffeinated drinks, like coffee! I was pretty cautious going into it, because my dad was severly addicted to narcotics, and I haven noticed the same tendencies in me with vicodin and codeine. I took a couple doses, and waited a few days to see if there was any withdrawl, or cravings to follow. And nothing. I've been using it fairly consistently for the past 6 weeks or so, and have not had any signs of addiction. I am able to go days without it if needed. The only addiction I can foresee myself having, is the addiction to feeling somewhat normal. An addiction to having more "Good Days" than "Bad Days".  I have done some pretty thorough research on this before trying it myself. I joined a Facebook group called "Kratom (New and Current Users)". They provided the following information

• It can relieve pain, provide energy, reduce depression and anxiety, enhance mood, and gives an overall sense of well being.
• It is all natural, and safer than opiate pain meds
• Causes few side effects. My only complaint is that it can dehydrate you, so it is important to keep your water/electrolyte intake high. If you do become dehydrated, you could get headaches.
• You can't overdose. Your body will reject it if you take too much.
• It will not show up as an opiate on a standard drug screen
• There are 3 different strains that target different things. The strains are based on the color of the leaf, before they are dried and ground up.
• Red-(bed) Best for pain relief and relaxation. Effective with many chronic and acute pain conditions. Lower doses can be stimulating. It helps to relax and sedate for anxiety and insomnia. It is good to mix with more energetic strains to avoid "addicting" effect when pain control is the primary focus (but I feel they put that disclaimer in not because the drug itself can become addictive, but because the user may feel they need it to get any relief, and that you typically won't go through withdrawl if you take it, like with addiction).
• Green-(in between) Good for pain control and energy. It is good for during the day. Used to extend the life of the white/red strains with good pain relieving effects
• White-(flight) Energetic and stimulating. Used for fatigue and exhaustion, waking up in AM, and day time drowsiness. 
• It is always suggested to start small with plain leaf; avoid extracts and enhanced versions. A good starting point is 1 teaspoon of powder, which is the equivalent of approximately 2.5-3 grams. If you don't feel anything after 30-45 minutes, try taking another 1/2 teaspoon every half hour until you get relief. And if a strain is not working, try another one. I have found that a strain that had a lot of good things said about it, did not work for me at all. But other strains work wonderfully.
• Unless you buy it in pill form, the best way to take it is to just toss the powder in your mouth, and wash it down; this is called the Toss and Wash. You could also make a tea, which I have not tried yet, but I may give it a shot soon. You can also try to mix it with juice or applesauce, but I found that it does not mix well with liquids. It likes to stay in chunks. I had a harder time with it mixed with water than I did with the Toss and Wash.
• You will get maximum/faster results if you take it on an empty stomach, or with a very light meal. I found that taking it with a big meal, it takes longer to reach your blood stream, and you don't get the desired effects.
• Here is a list of vendors/strains I have tried
• PA Botanicals- My fav
• I love their Fibro Blend, which is a red strain blend. It really hits the spot for rough days and later in the evening. I also really like their Green Maeng Da, which is a green strain. This is my go to for during the day and in the morning, gives me a mix of energy and pain relief to get me through the day. I also prefer their White Gold, which is like the name says, a white strain. This gives me a bunch of energy, for when I need to get a workout in, or get some housework done.
• Kaleidoscope botanicals
• I originally just ordered their Butterfly blend, which is for fibro. It didn't work for me. I really didn't get much relief from it (it's a red strain). But she sent me a sample of Knockout, which is another red strain, known for its pain relief and being able to sleep through the night. I tried it for the first time last night, because I forgot my sleeping meds at work. It was interesting! Definite pain relief. Going to have to give it another go. 
• Wicked Kratom
• I haven't ordered from them yet, but have heard good things about Yellow Brick Road

Now keep in mind that the FDA has not approved the consumption of Kratom. It is usually sold with a disclaimer stating that it is not meant for human consumption. It is illegal in 6 states as of now, which is a shame. There is a strong movement to keep kratom from being classified as an illegal drug. I fully support this. I can not see the purpose of making it illegal. It helps with pain management. It can help heroin addicts recover. It does not get you high. You can't overdose from it. It does not alter judgement. If anything, it may make me a little more chatty than normal, which I attribute to it being related to the coffee bean plant, aka like caffeine. I hope my assessment of Kratom can help you decide whether or not it may be a viable option for your treatment.

Sour Lemons

The past few weeks have been exceptionally rough as far as fibro goes. My energy is at an all time low. I find myself doing absolutely nothing on my days off, because I feel like I need to re-coup from my busy days. So therefore nothing gets done around the house. I can't tell you the last time I went grocery shopping, or tackled a bunch of cleaning. Thank goodness for my awesome boyfriend! He has been a trooper during these exhausting weeks.

So, as I was lounging around yesterday, I was binge-watching TV, and got caught up on some of my series I like. One of which being This is Us. And I was reminded of the time in the series where the father is given advice from the doctor about the loss of one of their children. Now don't get me wrong, I am in no way comparing being diagnosed with Fibromyalgia to losing a child during birth. But it's more of the wisdom that the old doctor had. That you were dealt one of the most sour lemons life has to offer, but you can choose to try and make something that resembles lemonade. This really hit me. I had been letting my new diagnosis be somewhat of an excuse for being lazy. Sure I feel like crap all the time. But I am able to manage just fine when it comes to something that I have to do, like going to work. Why am I allowing myself to be a couch potato on my days off? Because I don't have a driving force to get going on my days off. I don't have anything that NEEDS to be done right away. And because I keep reading that its more important to take it easy with fibro. To not overdue it. But no one talks about the balance of taking an hour break, or a 24 hour break.

The couple days leading up to this discovery where very busy and exhausting. On Monday, I had worked a 12 hour shift in the Chemistry department, which meant I was on my feet a lot. Walking a total of 5 miles according to my Apple Watch. On Tuesday I worked an 8 hour shift in the same department, but was unable to take a lunch. Just a 20 minute break in the morning for breakfast. I finally ate lunch around 3:30pm. And had an hour drive to run in a 5K race, celebrating PI day. So for Tuesday, that was a total of 8.3 miles! And we did not get home until 8:45pm, and my bedtime is usually 8:30. I was pretty tired, but I let that be a reason for doing absolutely nothing! I became pretty upset with myself, and when I do that, I usually start feeling sick to my stomach.

So from now on I am going to work better at making my sour lemon a little sweeter. I am going to figure out something that I HAVE to do on my days off, to get me off the couch, and get me moving. My boyfriend has pointed out, that I'm tired no matter what. It doesn't matter if I ran 9 miles that day, or worked 8 hours and worked out, I always feel exhausted. So on my days off, there is no reason why I shouldn't push myself to get some things accomplished! I know I am just in a bad flare, but I have goals for myself, and I'm not going to reach those goals by sitting on the couch all the time. Just some of the time ;)

Who am I?

We all go through life trying to find ourselves. We try to figure out who we are. Constantly trying new things. Experiencing new opportunities. Building up the person we believe we should be, good or bad. And doesn't it always seem that as soon as we are happy with where we are, complacent with the path we are on, life drops the other shoe? It turns our lives upside down, inside out, and makes us reevaluate everything.

I've been thrown a few curve balls that have been difficult coming to terms with. 

At 15, I was diagnosed with Complete Androgen Insensitivity Syndrome. Its a rare chromosomal disorder that affects sexual development. I'll go into more detail in another post to follow, because it is pretty complicated. Basically I was born with male chromosomes (team XY), but because of a mutation on my Y chromosome, I developed like a normal female. Needless to say, as a freshman in high school, this was a huge hurtle to overcome. 

At 23, my dad committed suicide. He and I had a strained, and complicated relationship. I resented him for so much pain he caused in my childhood, but none the less, I still loved him unconditionally. I lost him before we were able to hash out all of our problems. That is something I have to live with, as well as coming to terms with the fact that he dies alone. 

When 27 came around, I began noticing the first signs. It was slow at first, and attributed it to being over worked. I figured working 2 jobs had been wearing me down. I thought maybe I was anemic again. I questioned thyroid problems. Checked my cortisol levels, thinking maybe I had adrenal fatigue. Tested for gluten intolerance and celiac disease. Wondered if maybe I had mono, again. At one pointed, I questioned if maybe it was cancer. I was desperate for answers. I needed validation for the weak muscles, body aches, fatigue, irritability, and numerous other symptoms. I saw my primary care physicians on the regular, went to an infectious disease doctor, and finally a rheumatologist. I finally had an answer to my questions. But gained a hundred more. The rheumatologist confirmed, I have fibromyalgia. That day started my journey as a Fibro Warrior.