Jackie, New Jersey, USA
My name is Jackie; I am 29 years old, a mother of a toddler, and wife of a husband who is extremely supportive in my life. I am not so sure where to begin. When I was 21 something happened to me that put on the brakes in my life in many ways. I am still trying to comprehend the changes that I have to “accept” each new day. I was a sophomore in college pursuing my educational goals, working and playing soccer. I remember that pre-season that year had been extremely difficult for me. My legs, mainly my calves were “killing me”. I thought I was just suffering from really bad shin splints. My trainer encouraged me to ice up, whirl pool and icy hot my way into the games. One game was so intense with pain, numbness, and swelling I had to randomly sit down in the middle of the field after a play to rest. Having an athletic mind set, pain was just part of the territory; looking back I think I developed a ridiculous high tolerance for pain…out mind out of sight. Even in high school, running was getting harder and blaming it all on growing pains. Didn’t I get “most likely to fall down” from my team 2 years in a row…nah there is no pain. My body didn’t want me to swallow that lie anymore. Your body has a way to get your attention when you ignore its warning signs. Listen to those signs! I didn’t and learned the hard way.
It was my last soccer game ever; I tear up just thinking about it. I kicked my last kick; it was a nice one too! I thank God for that memory because that moment helps me cope with the following moment that changed my life forever. I was playing in a round robin tournament, 3 games in one day, a challenge for any athlete, but danger for me…so I found out. My right calf just froze into a “muscle mode” as I called it.
This time there was no choice to push through the pain, I collapse and my leg began to discolor. The trainers were perplexed and put ice on it which only ignited more pain. It was contracted so tight it began to cut of my circulation, and the pain was unreal to any of my experiences with pain. (I had natural labor, no meds, and I believe that this pain was worse than labor.) Finally, they called 911 and off to the ER I went. Even the morphine would not do justice. It was as if my leg was in a vice, being crushed with intensity with every minute that went by. There was no relief. The docs in the Emergency Room were bewildered and they tried to read the amount of pressure with 2 pressure gages (they thought the first one was broken) and it was so high they could not get a proper read. Finally, the Doc said the emergency surgery was the only hope to save my leg and that was a real risk. Honestly, the pain was so bad losing that part of my leg seemed to sooth me emotionally.
Well, later that night I awoke in the hospital next to my coach’s wife sitting by my bed explaining what happened. I wasn’t sure what was going on; all I knew was my leg was wrapped up in gauze. It was explained to me that I had acute muscular compartment syndrome. The doc was surprised that my leg made it though surgery because of the longevity of the muscle being contracted. My fascia was cute from below my knee to my ankle, and my wound had to be left open for an entire week for my muscle to adjust to its normal state. (Yeah I got to see the inside of my muscle for a whole week, talk about showing off an injury) A second surgery was done to close me up and the next 4 months was recovery time. I used I wheel chair briefly and of course crutches to get around. My leg has not been the same since.
The mystery was why did this happen. I was told maybe I exerted my muscle by vigorous exercise. (Aren’t athletes supposed to exert their bodies?) They suggested I may have been kicked in the leg. (Well I was playing soccer, and shin guards should have protected me.) Believe it or not I was determined to make a come back next season. Again, my desire to push through adversity was strong, you would think I would have learned.. But this time I woke up and listen to my body. Immediately just a couple days into the following season…I would collapse after a sprint or what have you and pain was horrible after practice. I had to accept that “something” more is going on here and I need to investigate and find answered some where, some how.
I went to 4 different neurologists in 8 years. The 1st doc said maybe I had fibromyalgia and put me on muscle relaxation meds, leaving me to feel more fatigued and spacey. After 2 months of those meds I stopped and lived in denial for the next 6 years. The Doc seemed not to know what I had so in my twisted mind maybe there was nothing wrong. I would say to myself, “Oh, I am getting older; everyone struggles when they stand for long periods of time or have cramps here and there. Oh, I haven’t really been athletic like I was before so this is what it feels like to be on idle. Your fine Jackie, whatever, its no big deal; get over it! I lived like that for some time and sadly sometimes I still do because of my lack of acceptance; I am a work in progress.
Well, when I had my miracle baby who was a preemie-2 months early, I needed to fess up to the reality that I need to address this in case it may affect my baby. Especially, since I have 2 brothers who were born with muscular dystrophy. Maybe there is something up with our family genes or something. They were tested all through their life in regards to what mutation has taken place, but there is still no DNA test that reflects what is going on in their bodies. But here is the thing; they are diagnosed with hypotonic and very low tone/floppy muscle with mid-line weakness. My youngest brother is worse than my oldest brother. They both have had a muscle biopsy done, no conclusion. Their CK is elevated and weakness is very apparent through the Growers maneuver and other obvious compensations, my family has even been address in a medical conference setting, but no conclusion.
Moving on, I sought out medical attention from a doc that specialized in pain management. I tried to explain my symptoms: pain, cramps, stiffness, balance issues, border-line diabetic, and fatigue…just to name a few. He tested me for MS, brain tumor, and a whole bunch of other stuff. He was excellent for pain management, as I was told…which was key to my run around with all of his testing. I wanted answers and not just drugs! He eventually sent me to get a second opinion because he was perplexed. Once again, off to another Doc. This time a random intern took my assessment and the doc examined me. Get this!!! He tells me I need to go on migraine meds and take some supplement fro my leg pain in case I am lacking calcium…in which the other doc out ruled before. (if he read my chart) Frustrated, confused and ready to go back to my denial thinking which is a cage of depression. That same week, some one in my church, directed me to a Nero-Muscular Doc. at University Hospital. I was about to tell the person thanks but I am done with the Doc thing! But, thankfully the 4th Doctor was the charm.
Going to a neurologist is good and all, but it seemed to make a HUGE difference in the testing and assessment when it came to seeing someone who specializes with the muscle skeletal system. Well this Doc, actually took in my history into consideration and family perspective. He did an extensive EMG with and with out resistance. And almost with in 20 minutes of the testing he said “Congrats you have failed your first test, I know it’s not great that we found something but now you can be relieved that it is not in your mind. Not only do you have abnormal readings from this EMG but very convincing evidence of having true myotonia.” He said I have had a muscle condition for some time and its probably what caused the severe muscle damage previously and the ongoing problems.
I didn’t know what that was, but it was a name and soon a possible explanation to my pain, discomfort, stiffness and lack of endurance. MY current Doc believes that I have either MC or Myotonic MD. I am on a 6 month schedule with him for observation. However, I am on mexilitine 3 times a day to reduce the electricity in my muscles, slowing the contractions. ( I also follow a very strict diabetic diet.) It takes the edge off some days, but depending on weather or whether or not if I over did it or didn’t get enough rest it doesn’t do the job. However, my muscles are increasingly contracting, twitching, vibrating, cramping and tire out quickly. Sleeping at night is not the easiest; I roll around due to the twitching and stiffness. I feel like there’s no stretch that can reach the cramp…so annoying Also, sometimes the contractions will last for minutes to hours and over a day’s time, like pinching the deep muscle tissue. Chores can be frustrating for me. For example: stirring a pot, holding phone, folding laundry, and even lifting a fork to eat. I feel the need to take more rests in between motions. Walking long distance can put me in a “fatigue funk” for a couple of days. So the occasion better be worth my energy! Exercise is very difficult for me and I miss it a great deal. I have dreams all the time getting ready to play in a game of soccer…but I am always missing my shin guards, cleats, or I lost my uniform and can’t play in the game…then I wake up very upset! Obviously, my mind is not agreeing yet with the truths I am dealing with or trying to deal with. Day by Day! As soon as the YMCA opens up by me I want to start aqua therapy. I am still learning everyday how to cope with this thing called myotonia.
As for my future, only the Lord Knows, I am awaiting for his direction. My degree is in Social Work and I look forward to working with children with special needs again. My husband pastors at our Church and I try my best to support him in every way that I can. My prayer is that I will be as much as blessing to him as he is to me. With a grateful heart, I am raising my son every day with perseverance, prayer and humbleness. I take my “Mommy Job” very serious each day and thank God for him. My son is showing signs of muscle weakness. He has been evaluated this year by a neurologist; they have labeled him having mid-line weakness, hypotonia and possible apraxia due to low tone and lack of muscle control. He has early intervention for Physical therapy, Speech therapy, and Occupational therapy, cognitively- thankfully there is no delay. He may start early intervention pre-K after his upcoming evaluation.
I am thankful for this opportunity to share my story it has been very therapeutic. It helps me see it as a reality in my life. Having muscle weakness and such pain is very debilitating not only physically but emotionally. Sharing my story and reading other stories will help me in the days to come. Thank you for reading and enduring the length of my story. I am sure now you must slowly stand and stretch because I certainly have to! Well, that’s if I can get out of this chair! (lol) God Bless. Looking forward to being apart of this support system.
Painfully stiff, but relaxing In the Lord’s arms,
New Jersey, USA