Ever since I was four years old, I began playing sports. I started with basketball, then moved onto baseball. I also ventured to learn how to play soccer and football. The main sport that I latched on to was baseball/softball. My father started teaching me and my brothers ever since I was 5 years old. I was also homeschooled until I was 14, so my father had taken some of that time to practice with us. I kept playing until I was about 19 years old. So, I stayed very active throughout my whole childhood and teenage years.
Wear and tear of the body seemed normal. When I was 6 years old, my knee buckled while I was walking through a grocery store with my mom. I didn’t know how to explain it beings I was so young, so I didn’t. My back started hurting around my pre-teen years. My knees remained an issue. I always had aches and pains, but I always assumed that it was from the extensive activity of playing sports.
Ever since I was 12 years old, I had developed depression. I figured it was due to my living situation, but it never went away. Ever since 2012, I have tried multiple medicines to help with my symptoms, but for some reason I was sensitive to all of them. My wrap sheet of medicine that I have tried is several pages long. I’m at the point that my doctor has nothing else to give me to try. I have had some medications that worked for a little while and then completely stop, not even dose change helps it. The biggest problem I have with the majority of meds that I try is that I develop the side effects. It is absolutely frustrating..I wonder, why me? Why can’t I just be normal? Why isn’t there anything out there to help me? I feel like a guinea pig, and I’m just plain tired of it.
The past few months, my symptoms have became much worse. I have body aches, massive headaches and I am completely exhausted. I feel really down for days at a time. I don’t want to work, I don’t want to clean, and worst of all, I have no energy for my son. I am completely disappointing him. He doesn’t understand why his mommy hurts all of the time and why she can’t always play. Then, these symptoms make my depression even worse. Why am I like this? Why can’t I just push myself? I never used to be this intolerant to pain. Am I just being lazy? Mom Guilt – I am disappointing my son.
I remember my 31 year old self crying herself to sleep, because not only did I have excruciating back pain and a massive headache, but I didn’t do anything eventful with my son. I had completely wasted the night away bed rested and defeated. I feel like my body and mind should never win over my heart, because I need to be there for him. Instead I was failing him. I would use all of my energy and ignore all of my pain to get through my work day, and then when I got home I would most often crash. My body would just give up. I would have no more energy to give…and that wasn’t fair for my son. I am way too young to not be able to do things with him.
Sometimes I feel like I’m alone…”
– my son
Then, I would have a good day here and there. When I had good days, I would do too much, because I barely did anything for the past three days. So, I would take my son places, play soccer in the backyard with him and just enjoy his company, because I know he missed mine. I would often try to cram in cleaning up my week made disaster of a house all in one day. Although, it all would often result in triggering my symptoms to flair up the following day, causing me to be down for another miserable 3 more days again.
One day, my customers had noticed that I was in pain. They suggested that I should get checked out by a doctor. I honestly thought this was normal because I played sports in my younger years and I do a lot as a full-time working single mom. I thought that I have just been putting too much on my plate. Plus, I broke my ankle the beginning of last year and that maybe I was still dealing with the effects of that. As normal as I thought this was, my new conversation was making me realize that it wasn’t.
“Have you ever got checked for Lymes Disease?”, my friend asked. He began describing the symptoms that he was having and they sounded very similar to mine. It had sparked my interest to get checked for it. So, the following week I had an appointment with the doctor. I got my blood drawn, and 3 weeks later, I got a phone call from the nurse stating that my results came back positive. She sent an antibiotic to my pharmacy to take for 3 weeks, and that I would need to return 12 weeks later for another blood test.
I was excited by this news! Finally, I have an answer to my problems! I am not crazy to why I feel this way. I was actually relieved that I had something state that this is why I am indeed feeling this way. So, I took the antibiotic. The first week, I just felt nauseous. Once that passed, I gained energy and felt less of my body aches. I was happy with the results until I finished my 3 week trial of the antibiotic. I immediately fell back to feeling the same that I had before. However, I just patiently waited for my next appointment. Once the 12 weeks came up, I went back for more lab work. 2 weeks later, they called with my results….
Negative…so, now they said that the test may have been inaccurate the first time. The Lymes aspect of the test were positive both times, but there is another aspect of the blood test that is conflicting which indicates that I don’t have it, because Lymes disease never goes away…so disappointing…so, now I’m back to square one. So, my next step was for them to refer me to a Rheumatologist. Well, at this point, I wasn’t feeling that this next step was going to be very promising. I was distraught and pessimistic after a 4 month haul of thinking I had Lymes disease. Yet, again I am a guinea pig, and my son is suffering due to my ups and downs.
After another month and half later, I finally got my visit with the Rheumatologist. This appointment turned out to be surprisingly wonderful. He was an amazing doctor! He told me all kinds of things that I didn’t know about my body. My second toe is longer than my big toe, and he explained why and that it had a name for it. He said that I have loose joints and that my elbows and fingers bend back further than most people, which is something else that I didn’t realize about myself. He explained my knee problems. But greatest of all, he had a neat sense of humor where everytime he found out something new for me, he would shake my hand and say, “Congratulations, you have…” and smile. He completely understood that my life is cursed with constant trials and that humor from both of us is what I need to get through it all. He threw out all kinds of “itises”, “algas”, and “oids” that I couldn’t keep up with his doctor lingo, but he would often explain them in a way for the average Jenn to understand. The best part about this man was that he understood the struggles that I was facing and the guilt that I was holding from it, before I could even express it to him. He genuinely wanted to help me.
You feel like a burden to others, you can’t do your job and you can’t live your life. That’s why we need to put a stop to this.”
– My Rheumatologist
He suggested that I had Fibromyalgia, but he wanted me to take a blood test and MRI first before he committed to that answer. He wrote down information about a video that would help me understand the condition much better. So, later on, I looked up the YouTube video of Dr. Clauw from University of Michigan speaking on Fibromyalgia and fatigue. I was absolutely fascinated by the information. I actually wrote down notes and studied it as if I was preparing for a big test. I just knew that this was the answer this time. Lymes disease described my pain, but Fibromyalgia described my life. This made much more sense. If you feel like my story matches your life, you might want to check this video out, and then get checked for it.
Fibromyalgia is a chronic pain condition. However, the chronic pain is not caused by a pain inflammation, but rather a brain pain amplification. There’s a part of the brain that triggers pain in the body that may not actually be there. That is why the pain in the body moves constantly to different parts of the body, it never stays at one spot. Depression can trigger this condition and at times, this condition triggers depression. Exercise and Sleep can help lessen these symptoms, but often those are the two things that are the hardest to control when having this condition, which is why the condition can get progressively worse.
In the video, Dr. Clauw explains that most people that have this condition were very active when they were younger. Most people that have this condition have had it for years and never even realized it. Most people that have this are sensitive to medications. Most people that have this, most depression medication doesn’t work for them because it only works on the serotonin aspect and not pain. Most people that have this condition are around those who have chronic pain. Most people that have this is hereditary, it pulls from one side of the family genepool that have chronic pain. Which makes a lot of sense, my father has multiple medical problems and chronic pain. Best of all, he explained the pattern of being down for 3 days, up one or two, and then being down for three days again – he explained my life completely in that segment. My favorite quote that I pulled from that video was when Dr. Clauw said, “You are not lazy”.
Finally, after one week later, I got the answer that I’ve been waiting for. “You have Fibromyalgia”. I feel like a weight has completely lifted off of me. The search was over. This is my condition. I can move onto the next adventure of trying medications to help sort this issue out. Medications are not fun at all for me, but for this, I am willing to try again. This makes more sense rather than, “I don’t know what else to give you for your depression”. I still have a long road to go, but I am reaching the end of it.
It is making my son feel more hopeful that he will get his mommy back as well. It gives me hope that I can start living again and not just existing moments at a time. I need my life back not only for myself, but for my son. I owe him that, because I am the person he counts on the most.