With recently being diagnosed with Fibromyalgia, Vitamin D Deficiency, Piriformis Syndrome, Bilateral Scalene Trigger Points and Sacroiliitis; I thought going to my first Physical Therapy appointment was going to end up with me adding yet another weird syndrome to my long list, of course it would probably be something that I can’t pronounce.
And it was.
Over Sensitized Nervous System Syndrome
I know what you’re thinking, what in the unicorns is that?
It’s a fancy way of saying “Pain itself often modifies the way the central nervous system works, so that a patient actually becomes more sensitive and gets more pain with less provocation. That sensitization is called “central sensitization” because it involves changes in the central nervous system (CNS) in particular — the brain and the spinal cord. Victims are not only more sensitive to things that should hurt, but also to ordinary touch and pressure as well. Their pain also “echoes,” fading more slowly than in other people.
In more serious cases, the extreme over-sensitivity is obvious. Any kind of noxious stimuli can trigger the change — anything that hurts skin, muscles or organs. The role of sensitization in several common syndromes has been proven and well-documented, and it can also persist and worsen in the absence without apparent provocation.”
How convenient that the common syndromes are things I have just been diagnosed with or previously diagnosed with; fibromyalgia, musculoskeletal disorders with generalized pain hypersensitivity (often called myofascial pain syndrome or “trigger points”), headache, joint disorders, jaw pain, neuropathic (nerve injury) pain, hypersensitivity disorders and post-surgical pain.
Here in the United States we don’t yet teach about how the Nervous System and Immune System are linked, but the truth is the nervous system actually affects Immune Function and vis versa.
That’s why so many people are thrown into a “wild goose chase and riding a merry-go-round of expensive and ineffective therapies.”
I am lucky enough to have a Dr. at the pain clinic who studied in India, where they teach this information. I am also lucky enough to have a Physical Therapist who works closely with my Pain Clinic Dr. and knows the importance of how these work together.
Why am I telling you all of this mumbo jumbo? In November, I ran a marathon. 6 hours of non-stop running until I reached the finish-line 26.2 miles later. Then a week later I hopped on a plane and ran a half marathon.
My body was weak and tired, I got sick. Then another week later I felt like my bones were breaking, I could barely walk, and it only got worse from there. I went to the Dr’s, Emergency Room and back to the doctor. They had no explanation for me being in excruciating pain. Not knowing what else to do, she thankfully sent me to the Pain Clinic where I was diagnosed with that long list. She then sent me to the Physical Therapist who then explained to me that I was stressed, and boy was I stressed. Then ran a marathon, then a half marathon ….which weakened my immune system’ got me sick and eventually affected my nervous system and BAM I am then struck with Fibromyalgia, Vitamin D Deficiency, Piriformis Syndrome, Bilateral Scalene Trigger Points and Sacroiliitis.
Over Sensitized Nervous System Syndrome is a fancy way of putting EVERYTHING in one category. (Thank heavens because I was getting sick of reading those off to everyone)
I was given some simple and light exercises to start out with. Starting off too strong can make things worse.
I did them all a few times at Physical Therapy and felt immediate relief. Of course it came back a few moments later, but it will take time.
I am thankful for the way things have transpired, through the pain I am learning how to tolerate the new me and realize that I am a lot stronger than give myself credit for.
I would like to give credit to this great website – PainScience.com
Please take the time to read through this link that I have posted above. You will have a much better understanding.
“Life is not a journey with the goal of arriving quietly and safely in one pristine piece… but a chance to twist the throttle until it sticks full open… to leap over, slide under, and hammer through obstacles… to look fear in the eye and punch on… to skid, slip, and stumble across the finish line, out of gas, leaking oil and blood… covered in dirt and free from regrets.” -Hunter S. Thompson
Finally an answer!
Running has caused Fibromyalgia & Piriformis Syndrome in my body. I also have Bilateral Scalene Trigger Points and Sacroiliitis.
I start physical therapy this month to help find coping strategies to deal with the pain. I also Start Lyrica, to be used daily and Hydrocodone at night on a short term basis until Lyrica and PT start working. I will still be taking 50,000 IU of Vitamin D due to a negative amount in my body. The bone pain I have been experiencing is due to Vitamin D deficiency and Fibromyalgia.
She said my case is quite extensive and she’s never heard or seen anything like it. It’s very complex and she’s going to do more research to see if there’s anything else she should look into. She’ll have a better grasp on everything at my next appointment.
I am thankful for this Dr who read all my medical history and new symptoms instead of telling me that it was all in my head and I was just depressed. She spent 3 hours with me and was genuine and listened to everything I said.
She said “There is light at the end of the tunnel and eventually, you can get back to your passion. Just no more running a full marathon and a half marathon in one week!”
My next post will go into each specific diagnoses to better help you understand what it all means.
Thanks for all of your support!
If you could see how others see you, would you start to love yourself a lot more or would you change? Take a step back, How do you want others to see you?
My Daughter made a presentation recently. These two pictures were included. Reminds me to stop being so hard on myself because clearly my daughter finds extreme strength in my husband and I.
This is the raw truth about living with a disability and the invisible side effects…
Nobody realizes that some people expend tremendous amounts of energy merely to live a mostly normal life.
I am now sharing with you honestly and openly about my life.
March of 2014 I started having symptoms on my non affected side. Symptoms that were so excruciating that I went to the ER.
Let’s take a step back. At age 14 I had brain surgery to repair the blood clot in my brain which had burst causing me to have a stroke.
From age 14-33 and two strokes later my Dr notes and files are how do you say… Heavy, thick and probably extremely mind boggling.
After the ER visit back in March, they told me I was DEPRESSED and it was all in my head. ARE YOU EFFING KIDDING ME? Have you not read ANY of my files? Frustrated, I went home and continued to “deal” with the pain.
At the end of March, the pain was to the point where I wanted to rip my skin off. I went in AGAIN only to have them tell me that it was all in my head and I might need a psychologist to help me stop the thoughts of invisible pain.
At this point I was LIVID! I knew I wasn’t crazy and I knew the pain was real.
April came around and the symptoms did not get better, unfortunately they only got worse.
At this point I am now dealing with numbness that started in my hand and wrist, then went to my arm, then shoulders, neck, face, then down to my side and lastly the leg and foot.
Burning in my hands, arm and face.
Joint pain in my shoulders, neck, hips, back, Knees, elbows joint, wrist, fingers, ankles and toes.
I am weak, sick to stomach, dizzy and can’t eat.
I am tired can’t sleep. I am having 3 periods a month 1 week apart leaving me exhausted.
I have pain in my entire body that feels like restless leg syndrome.
I’m dropping things. I have no grip and had to change toothbrushes because I can’t hold it.
If I focus on things in the mid to far distance say a sign or something, it feels like I can’t hold my focus properly, and the vision is almost pulsing with my heartbeat.
I have motion disturbance when driving. The light is too unbearable, It makes me stiff.
Now, I’ve been dealing with this forever and I’m starting to lose hope.
In April I called my neurologist crying. I told him I have to go to the ER, but they’re going to tell me I’m crazy and send me home. He simply asked me, Krissy, are you crazy? I said no. He said, Krissy, you’re going to go in there and you’re going to put your foot down. I told him I am not good at getting the Dr’s to listen to me. He said YOU GO IN THERE AND TELL THEM YOU’RE NOT LEAVING UNTIL YOU GET ANSWERS! Tell them your want to get admitted and that they better do a battery of every test possible.
So I went in feeling powerful. Until they said we have no reasoning behind admitting you and we still don’t see or feel there’s anything wrong with you. They started getting the discharge papers ready. My husband said this isn’t what you want is it? Crying and sobbing I said no. The Dr came in and I told him I am not leaving because I deserve some answers. I am not here for medication, I am here for answers. Finally they admitted me under Observation since they apparently had nothing to go off of. FINALLY a battery of test and three days later they found a glimpse of hope. I was diagnosed with photogenic seizure disorder.
Day three I was discharged with medication and a new outlook on life. I could breathe easier with a diagnosis. The very next day I ran my fastest half marathon.
Days went on, weeks went by and months passed. The symptoms did not get better, they did not change and new ones have since appeared.
I can’t eat. While I knew already I was allergic to fruits and vegetables, but what was the reasoning behind the rest of it? I am not hungry ever and the thought of food was sickening.
I saw a nutritional who then told me I had a vitamin D deficiency, Vitamin B deficiency and Anemia. My fat cells were depleted and my ferritin levels were nearly negative. I was then diagnosed with Exercise induced anorexia.
After more testing, it was found I was indeed allergic to nearly all fruits, vegetables and seasonings because they are cross pollinated with plants and trees which I am allergic too. The reactions vary from throat swelling to extreme discomfort.
For months ALL while training for a marathon I lived mostly on a liquid diet, eating what I could. I was told that if I didn’t gain enough weight I couldn’t run my marathon. I never gained the weight, but still ran the marathon in November then a week later a half marathon in Las Vegas.
We are now into January and the side effects are still the same. I’m sick and tired of being sick and tired.
Tomorrow I go in to schedule a hysterectomy in hopes that this will offset the anemia and a few other symptoms.
I’ve searched for answers. Is it a Neuromuscular disease? A Vascular Disease? An Autoimmune Disease? No one knows.
Lupus, Lyme’s Disease, MS and Thyroid have been ruled out. What’s next? Where do I even think to start?
I will keep looking for answers. Meanwhile I have turned to Eastern Medicine in hopes to lessen some of the pain. Essential Oils help short term, but I am not getting my hopes up about getting any long term relief.
As you can see, the thought of deleting my Facebook page Not Fast Just Fabulous has crossed my mind because living this way every moment is exhausting.
I am too weak to run any more than a 5k and I am tired of all of the dead ends.
I will continue to work on myself and do everything I can to stay positive. I will continue to wake up with a smile on my face. Please keep me in your thoughts and if you know of anyone who may have answers, please send them my way.
Thanks for making this happen!
Here’s an excerpt:
The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 15,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 6 sold-out performances for that many people to see it.
Many people write race recaps, but for me the only way to share how amazing the entire experience was is to make a video. Here is the day from start to finish.
It started by going to bed at 12AM knowing we would need to get up at 4:30AM. You know how excited you are the night before any race, let alone YOUR FIRST MARATHON! It was hard to sleep.
The alarm goes off and the rest is forever engraved in my mind…..
I was the Key Note Speaker at today’s Women’s Running Retreat held by Jamie Adcock of Running Diva Mom!
A room full of AMAZING women were blown away with my story. I am so proud to share my journey with everyone!
Here is the journey I shared –
Take a walk in my shoes…….
Have you ever heard of the expression “Stars can’t shine without darkness?”
Think about it. What does that really mean?
To me, it’s the story of my life I am the star.
When I sat down to think about what I wanted to share with all of you, an ocean of emotions came over me. Up until this point of my journey, I’ve just been living it. I haven’t really had a chance to figure out what it all means.
Some people wait a lifetime before they figure out what they want to be or who they really are.
I have been blessed time and time again, not even realizing that everything that has happened to me was all a part of the plan, my plan.
Come with me to the darkness that got me where I am today. From being barely able to walk to becoming a running shining star.
After a near death experience of having a stroke and brain surgery at age 14, my life had literally forever changed. I couldn’t walk for 2 months, I had almost no use of my right hand, I had to relearn numbers and counting, my ABC’s, how to write (as a lefty) and how to talk,…even the simplest task like tying my shoes took 20 minutes or more and sometimes ended with me just giving up. The majority of the right side of my body was permanently numbed… I could still feel pressure but I lived with the constant feeling of “pins & needles” all along my right side. Some things took many months to relearn, some things took years, and some things would take longer or never really get back to “normal.”
I stayed up many nights begging for answers. I was angry. I just didn’t understand. Why me? Night after night I’d ask and still, no answer.
Then on Christmas day in 1995, my grandma and grandpa gave me a sign that read
“I know God won’t give me anything I can’t handle. I just wish he didn’t trust me so much.”
That was it. That was my sign
I realized I was lucky to be alive and I came to the conclusion that I needed to turn this negative part of my life into a positive. So I started to focus on moving forward with what I had. I realized how important it was for me and everyone else to stop taking their lives and the things or people they have for granted and especially to love themselves for being who they are.
Fast-forward 8 years later when I am 23 years old. The unthinkable happened. I suffered a second stroke while I was 38 weeks pregnant with my daughter. This time the bleeding in my head should have killed me, but it stopped short only stealing the use of my right side.
I cried a lot, struggled a lot, and moved forward however I could.
For the next 9 years I would deal with not feeling my entire right side, with emotional and cognitive issues, with not being able to do everything with my family that I wanted to do. I sometimes needed a cane to walk; I was on medications for pain and shakiness in my arm and leg. Even with all the true friends and family I was surrounded by, I had so many problems that were hard to ignore or overcome. But after so much time, help, and support I again realized that I was still here and had a lot to be thankful for. With everyone’s help and my strong will revived, I started to turn my life into a new learning experience. Eventually I found a passion in teaching others to embrace people who are different, to see past physical and mental issues.
But what was THE THING that really helped me see how much my life was really worth?? MY DAUGHTER LILY.
She’s not just any average energetic 10 year old, she’s the size of a 12 year old and she’s a runner.
November of 2012 Lily joined an after school program called Girls On The run. It’s a 10 week program where the coaches teach important life lessons and integrate the program with running. At the end of the program the Girls and their running buddies participate in a nationally known 3.1 mile run.
That season, Lily’s running buddy had to be a coach because I wasn’t in any shape to run with all my medical issues, pain and cane. All of the other girls got to run with their moms, but I couldn’t do that for Lily.
Deep down it was really hurtful to think I couldn’t do this one thing that meant so much to my daughter. To watch Lily cross the finish line holding the hand of another mother hurt more than just my heart, it hurt every ounce of my body. Not knowing what I should do, I prayed.
The message I kept hearing in my head was saying why not? Krissy, why not? The message had never been this clear before.
Then it started… on November 29th, 2012 at 9:37am I threw down my cane, stepped out of the front door and starting walking and very slowly jogging. I had no idea where I was going or what I was doing, but there was no way I was going to quit.
I went almost 2 miles in around 30 minutes, it wasn’t the best, but it was something.
That’s when I decided I wasn’t going to miss Lily’s next 5K. I didn’t care how long it would take or how much pain it would leave me in because the pain of seeing her finish with another mother again would be too unbearable.
I wanted what others had. Happiness, a smile and the ability to feel “normal”.
I was holding myself back. Once I stopped listening to the voice in my head that for so long was telling me I was never going to amount to anything, my life changed.
I became more aware of my surrounding, the way people really saw me and the way I actually treated myself.
I had lost the ability to differentiate between CAN’T and DON’T WANT TO.
The next day I ran 2.13 in 27 minutes, and from then on I couldn’t stop! I wanted to run every single day.
MY journey had begun! I kept jogging and running a few days every week, for the distances I could go, and at my own pace. Which I think is amazing considering what I’ve been through. I’m so thankful I’m able to do it even when I see other runners flying past me. For me and hopefully for others it will always be about what YOU can do, not what you cannot.
All of the pain and residual side effects from the strokes disappeared. The hip pain was gone, the shakiness in my legs and arms were gone. It was literally a miracle. I had more energy than I’ve ever had. I was becoming stronger physically and mentally.
After months of grueling training and sweating on my own, I worked up the courage to put myself out there as a runner- I helped coach Lily’s group in her second Girls On The Run season. June 8th, 2013 became the most momentous day of my life that I’ll never forget, because on that day I got to run with my biggest inspiration, my daughter. We crossed the finish line holding hands. People described seeing that moment as joy bursting around us like confetti.
What I have become by achieving my goal of running this race with my daughter is nothing that can be put in words.
Since I started all those months ago, I have ran 10 5K’s and have even run 5 10k’s and 3 15K’s. They weren’t fast but I’ve run my way, my pace, and I’ve finished.
In July 2013, I decided to do something crazy. With this fantastic new outlook on life thanks to my daughter, I signed up for my first Half Marathon! What was I thinking?! People like me “CAN’T” run Half Marathons!
In conjunction with my First Half Marathon, I decided that I wanted to do something special. After a week of going back and forth on what I wanted to do, I decided that I want to raise money for a foundation.
It was easy for me to decide that The Challenged Athletes Foundation would be the perfect way to symbolize what running this Half Marathon would mean to me. This foundation provides opportunities and support to people with physical disabilities so they can pursue active lifestyles through physical fitness and competitive athletics.
All on my own, I set up the Team Fabulous Virtual 5K. People from all over the world bought tickets. I donated 100% of the profits to the Challenged Athletes Foundation. I was able to raise $1,100.
November 10th 2013, a year after this entire journey began, I did the unthinkable.
Surrounded by an amazing support team, the heart and soul of my special pacers and their running buddies and mine, the HUGE support from my fabulous followers, I did it.
I completed my first Half Marathon, but I couldn’t stop there. I have since ran a 2oo mile Relay race from Madison to Chicago and My first Tough mudder as well as becoming a host of a Madison run club called poky puppies! I volunteer my time with my team triumph; we push, bike and swim disabled men, women and children to the finish line of their races. For the last year I have also been dedicating all of my miles, around 700, to a boy named Dominic. He is an 8 year old that has cerebral palsy. In two weeks I get to meet him and push him to the finish line of the Rock and Roll Half Marathon in Vegas.
AND Next weekend I will conquer the world yet again when I finish my first marathon holding the hand of my best friend and biggest fan, my husband Adam where we will renew our vows, of course after I finish crying. There is a 6 hour time limit. After talking to myself, I have come to the realization that I may not make that deadline and you know what? That is okay with me. So what if there’s no real finish line, so what if I don’t get a medal. Not having those things does not diminish all of the work I put into it. I will run, have fun and finish my way, my pace.
I have become an inspiration to thousands of people locally and all over the world. I have helped others realize that anything I possible. I have helped others achieve their dreams all because I keep pushing for something that seems impossible. If I can do it, so can you!
I am living proof that “What you get by achieving your goals is not as important as what you become by achieving your goals.” -Henry David Thoreau
Through all of the darkness I am now shining brighter than ever.
How it all began
19 Years ago, when I was just 14 years old, I had a stroke that required brain surgery to stop the bleeding and save my life. It took months of therapy to learn to talk, read, and write again, and eventually to miraculously walk again. Then, 10 Years ago, while I was 8-1/2 months pregnant I suffered another stroke, this one leaving me with complete numbness and almost no control of the right side of my body, robbing me of the use of my arm and hand. I suffered from crippling pain, cognitive disabilities, and depression over what I had become and what I could no longer do. Finally, after nearly 9 years of suffering, I decided it was time to fight back. I threw down the cane I had been walking with and stepped outside, forcing myself through the slowest jog ever. The next day I did it again, and over a few months I eventually trained myself to run. I have a limp, struggle immensely, and I’m not very fast, but more importantly I no longer let my disabilities hold me back. Now I use my past and what I’ve overcome as motivation to help others with their struggles, in particular a sweetheart named Dominic, whom I’ve never even actually met.
A Special Little Boy
8 Years ago, Dominic was born with Cerebral Palsy. He is unable to walk, talk, or eat on his own, and has very little control of his body. With no real form of communication, it can be nearly impossible to understand what Dominic’s thinking or feeling at any given time. Relying on his mother and family for everything, Dominic’s life is hard to comprehend. Still though, his spirit is strong and his smile can be outright infectious, making it clear that despite his many medical issues this is still a little boy both capable and deserving of love and everything else other little boys enjoy.
Nearly 1 year ago, Dominic’s mom signed him up with the IRun4 non-profit organization, matching him with a runner who would write to him and dedicate all their miles run to him since he cannot run himself. That runner is me. Having a major medical history of my own, I was deeply touched by Dominic’s story and felt a connection through his smile. My family and Dominic’s have been in constant contact- I have been chatting, sending mementos of runs and other gifts, and dedicating hundreds of miles to him, including 5K, 10K, and half-marathon races. Recently, Dominic’s family and I were contacted by My Team Triumph, a non-profit organization that allows the disabled opportunities to participate in official race events, using specialized chairs and able-runners pushing them the entire distance. We have officially been invited to be members of their team in the Las Vegas Rock N’ Roll Half-Marathon this November. This is truly an amazing opportunity to connect face-to-face for a life-changing experience, over 13.1 miles that will surely be full of smiles, tears, and indescribable joy. Seeing his face when his mom talks about our families meeting and about running with “Ms. Krissy” is absolutely amazing- he truly lights up at the thought. I have suffered devastating medical issues, I know what it means to be told what you can’t do, and I have felt the wonder and joy of accomplishing and experiencing those things… to be able to give Dominic that kind of experience and those feelings would be a real blessing. To do that that though, I need your help.
Having medical issues and a family of my own, unfortunately I can’t afford the costs involved in this amazing opportunity. That’s why I’m asking for your kindness and generosity to help me get to Dominic and push him through this race. I have set our target fundraising goal at $1000, but to make this dream come true in total we actually need to come up with $2095 ($1795 for travel and lodging, $300 for race entry fees.) 100% of the funds raised will go directly toward covering these expenses and providing Dominic with priceless memories. Not only will your support help make this dream come true, but it will provide Dominic as well as me and my family with precious memories for the rest of our lives. .
Please sign up for my Virtual 5K or help by donating whatever you can- no amount is too small or big when it’s going toward such an amazing cause. Also, whether you are able to donate or not, please share this with your friends and family over Facebook and other social media, and leave us comments here to help us reach others.
Here is the link Running To Dominic
Frequently Asked Questions and other information about the Virtual Race can be found at the link above or HERE.
Thank you so much for your time and your help, have a happy, healthy day.
AUGUST 31st, 2004 –
I was 23 years old, and 38 weeks (8-1/2 months) pregnant… then I had another stroke. This time I lost more feeling and most use of the right side of my body. Amazingly and luckily the bleed in my head stopped on its own, if it didn’t stop there was nothing the doctors could have done to save me- this bleed was too deep in my brain and near the base of my neck. I would have slipped into a permanent coma or just bled until my body shut down. After I miraculously stabilized, my daughter was removed by C-Section, a healthy little angel! Now with life challenging me again with more negatives, I had the new challenge of being a first-time mother on top of more new stroke side-effects. The numbness in my right side isn’t just “pins & needles” anymore, a lot of my right side is just plain numb. I have almost entirely lost the use of my right hand… after weeks of therapy and with a lot of concentration I’m just able to close my hand around something… I have very little control of my hand and just about no control over individual fingers. I’m almost entirely left-handed and only left-handed, except for basically being able to squeeze things or hang things from my right hand. Some of the mental and verbal issues I had from my first stroke stayed the same, and some have gotten worse. Really, I don’t believe I could have handled the side-effects of my second stroke back when I was 14 and had my first, – Taken from My Story