Girl dubbed the ‘mystery patient’ reveals her agony at growing up with chronic invisible pain…. until one doctor finally believed her.

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Read  Article Here

So while people are judging others for doing things that they see as ridiculous, the truth is far from it.

As a person with invisible illnesses AND a person who doesn’t judge a book by it’s cover let me explain this to you.

I do see some strange things go on at the gym. I definitely try not to think too much about it because I don’t know their story or what medical problems they might be dealing with. Maybe the lady with no bra on at the gym had breast cancer and it’s too painful to wear a bra. Maybe the weird girl doing an exercise wrong is doing it the only way she can. Maybe the old man that always wears those weird jeans while working out has a sensory disorder and that’s all he can wear. Maybe the grandma with her walker can only use all the machines with no added weights because she has a form of Alzheimer’s and that’s all her body will allow her to push or pull… at least she’s out there even with her walker.

Take this video as an example. You go to the gym and you see this. Honestly, tell me what you would think. To me, I see a man trying to strengthen his neck. Maybe he was in a car accident and needs to get his neck strong again. Maybe he has a desk job and needs to stare at a computer for 8 hours a day, that’s definitely a good reason to strengthen your neck. Maybe, like me, he has Fibromyalgia and has TERRIBLE neck pain. And MAYBE it’s NONE of these!

Going to the gym is super eye opening for me. It makes me happy to see so many different kind of people working on themselves, feeling strong and feeling comfortable in their own skin.

Life is too short for me to go to the gym and care about what all those other people think when they see me squat a measly 25 pounds on the Smith machine. Life’s to short for me to care about being embarrassed by only being able to row 25lbs. Life’s too short to give a flying F about only being able to do 20 sit ups on the bench.

This man in the video is doing a legitimate exercise. The benefit of this resistance exercise is to strengthen neck muscle and improve range of motion…..AND I hope there’s a video of me out there doing this exact thing because clearly according to this Facebook video title, it’s how you become a legend.

Clean my house and cook supper? Ain’t nobody got spoons for that!

Unfortunately,Fibromyalgia has extremely similar symptoms as Vitamin D Deficiency, and I have BOTH of these issues. The doctors are quick to tell you it’s vitamin D deficiency when sometimes it’s Fibromyalgia. My vitamin D level is negative 5 instead of 30. My Fibromyalgia sucks almost every day.. people say you do a good job of not looking sick. NO, actually I do a good job of pretending I’m fine because trying to explain to you how I really feel uses too many of my DAMN SPOONS! ughhhh I need a cupcake damnit.

http://eatlocalgrown.com/article/14504-signs-of-vitamin-d-deficiency.html?c=JER

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This is big. HUGE. Especially for autoimmune and neurological disease sufferers.

I wrote a similar post on Facebook and my blog (Blog post can be found here)  all about this after I found out I had Fibromyalgia. This has been studied for years in other countries like India. My Dr from the pain clinic and physical therapist studied this specially over seas and I’m lucky that they did because if they didn’t know the correlation, it’s a big possibility that I would still be miserable today. To the ER Dr’s and my primary all of the pain was all in my head and I was just depressed. I was sent home 3 times from the ER because they thought I was nuts. I knew I wasn’t crazy. Just like people don’t realize that our immune systems is connected to our nervous system, but the truth is the nervous system actually affects Immune Function and vis versa.

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.

That’s why so many people are thrown into a “wild goose chase and riding a merry-go-round of expensive and ineffective therapies.”…. we’re being treated for the wrong diagnosis.

I just know how it affects the autoimmune diseases and hopefully with more information they’re able to find the correlation between why some brains get Alzheimer and some don’t.

This is big. HUGE. Especially for autoimmune and neurological disease sufferers.

Thank You: From the Front of the Pack, To the Back

Krissy:

I live in the back of the pack, it’s like a Mullet… party in the back.

#foreverteammullet

And finally some appreciation from the front of the pack!

Originally posted on Bad Angel Rules for Running:

*Guest post*

The time has come for me to finally say thanks, to thank a lot of people I’ve been meaning to thank but haven’t had the courage. I want to say thanks for all the inspiration I got from the runners I’ve seen and talked with, but that I’ve never run with. Specifically, the people who doubted themselves in word, but inspired me through work.

This is my confession of thanks, from one runner in the front of the pack, to the runners in the back.

(Photo credit: Drew Reynolds http://www.drewreynolds.com) (Photo credit: Drew Reynolds http://www.drewreynolds.com)

This year was my second year training for the Chicago Marathon with Chicago Endurance Sports (“CES,” as we call it), an awesome group of people that run year-round training for all manner of races. And when I say all races, I mean it: they have groups for people just beginning running to complete their first 5K and for…

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Life is not a journey with the goal of arriving quietly and safely in one pristine piece…

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.

Mrs. Fabulous

“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

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Finally an answer to all my pain!

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!

Mrs. Fabulous

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Through the eyes of my daughter…..

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.

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“She stood in the storm, and when the wind did not blow her way, she adjusted her sails.”

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.

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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.

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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.

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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.

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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.

Mrs. Fabulous

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Here’s some cool stats about my blog in 2014!

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.

Click here to see the complete report.

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