I am not a Dr, but I once played Dr House…

I did not play him on TV, but did play him in real life. That is how I ended up with my EDS diagnosis.

It started last fall with a progressive muscle weakness that  everyone, even my very smart Neurologist, was certain was Myasthenia Gravis. Since I already have one auto-immune disease ( Hashimoto’s Thyroiditis), it was not a leap to think I had developed another. I was looking at odd and rare forms of MG, however because something in the back of my head kept seeing patterns. My mom had been diagnosed with MG when she was a little younger than I am now, but then she went to the gym, worked out hard and they never could find it again. Last winter my eldest daughter had a weird episode of weakness and pain in her shoulders.  There was something connecting us all together. I was certain of it.

But all the testing came back negative, Lyme, ALS, lupus, you name it, we ran a test for it. And then so did all the testing for MS, or other Brain problems ( like tumors). My poor Neurologist was puzzled beyond frustration and was finally ready to categorize me as “somatization disorder” or “something else psycho-neuro that we do not understand”.  He was not giving up on spinal MS and was arguing with my insurance company over cervicall MRIs and scheduling spinal taps.  The neurological “solution” was not looking positive. Frustration levels were high from all three sides of this experience ( mine, the doctor and my husband, who was at my side through it all).

By this time, my pain levels had increased as well. I wasn’t just weak, I HURT.  I was living with a constant pain level of about 8. It was enough to make my life miserable and functioning very difficult. I randomly cried a lot. I could not think straight. My memory was going. I was beginning to feel a little crazy.  I asked what I could take to help me cope with the pain without interfering with the remaining tests. My doctor told me that it was safe to take naproxen either at the analgesic ( over the counter) levels or even at the higher anti-inflammatory levels ( prescription strength). He thought the analgesic might help a little, but did not see any reason that the anti-inflammatory would touch the pain.

Just the opposite was true. At analgesic levels, nothing changed, but at anti-inflammatory levels, I started to get a little relief. That meant that whatever was going on had some inflammatory element. After two days on naproxen over doses ( I was determined to hit it hard, I was eating and taking nexium and had no intention of doing this for an extended period of time- I value my stomach), the pain was at about a chronic 5 and early in the day, I could pinpoint areas where it was worse than others. It was no longer just diffuse hurts everywhere.  I started poking and prodding my body and realized that all the places it most hurt were muscle insertion points.  

I called my mom and told her what I was experiencing, and she said ” that is what my physical therapist always says– my tender points are muscle insertion points”.   Again, that genetic connection. However,my brain was still locked in on the auto-immune factor. ( my mom and I both developed hashimotos at the exact same age– so I know autoimmune can have genetic influence).  I hit Google and searched for “tendon inflammation pain autoimmune” . This led me to lots of links on Lupus ( which I had tested negatively for) and RA, which I suspected for a while, but the symptoms were not quite right.  Maybe I had some new, undiagnosed form of autoimmune disease that was hiding in other people at CFS?  I started digging for Colllagen auto-immune diseases, looking for a pattern, something that would seem to fit. Nothing was really right. Interesting, the ways our body can fail us- but not what I was experiencing.

In the meantime, I had started trying to do my Pilates DVD again. I knew just sitting/laying on the couch for months was a bad thing. Now that the pain was down a bit, I tried to get up and move. I could not do a 10 minute segment all the way through. I cried. It hurt worse than sitting, but something in me screamed to get moving. Maybe it was the fear of my neurologist trying to classify this as my head breaking my body.  While that is a real problem, I knew that this was a case of my body inducing depression in my head, not the other way around. The only way to prove them wrong was to shake the fog in my head hard and try to get a little light in. I made myself smile. I found every positive thing I could. I fought HARD. I cried a LOT.

I kept poking Google, looking for some combination of something that made sense. I came across a link for Prolotherapy, and on that page, it had a link to Ehlers Danlos Syndrome. This was not the first time that Ehlers Danlos had crossed my path. When I was diagnosed with Nuerocardiogenic Syncope about a year previous, EDS had come up as a related syndrome. When I read that, I immediately recognized myself, but the article I read said NOTHING about pain ( or weakness). I had thought that there was an interesting name to my “circus freak” capabilities and dismissed it.  Since it crossed my path again, I decided to dig a little deeper. One of the first links that popped up was a new ( Dec 2010) NIH report that listed chronic pain as one of the symptoms of EDS.  I remember reading this sentence about 5 or 6 times over again in stunned recognition:

” Chronic pain, distinct from that associated with acute dislocations or advanced osteoarthritis, is a serious complication of the condition and can be both physically and psychologically disabling. Easy bruising is common.”

This was ME. 

From that moment on, I knew that EDS was the reason I was here, experiencing this. I dug deeper. And Deeper.
I learned that experiencing a sensation of weakness or fatigue is sometimes our body’s way of protecting us from chronic pain. It figures that if there is constant pain there must be injury and tricks us into immobilizing that area by inducing weakness. 
 My progressive muscle weakness was my body’s reaction to increasing pain.

I learned that Stress increases cortisol levels, and cortisol destroys collagen. 

My life stresses were increasing the symptoms and problems I was having. 
I cancelled my Neck MRI and my lumbar puncture. I made an appointment with my family physician’s office  to see what they thought. The doctor I saw agreed that it was possible, but had never seen EDS before and referred me to a local rheumatologist ( I am still waiting- that appointment is in April).
I learned there was an EDS specialist Dr about 3 hours from here and called to try to get an appointment. They required a confirmed diagnosis before setting up an appointment. They referred me to a genetic specialist. The genetic specialist confirmed EDS, but to my surprise pointed out other features ( pes planaris and atrophic scars), some of which indicate Classic, rather than Hypermobility. I score a 9 on the Beighton scale. I have features of both Classic and Hypermobility, but we are still waiting for my blood test results to come back.
I have an appointment with the EDS specialist in June.
Now I am working on getting appointments for my daughters to screen them as well. There will be no surprises, I am already pretty sure what the results will be.

If Dr. House ever wants to take a vacation, I will be glad to take over for an episode or two.

2 thoughts on “I am not a Dr, but I once played Dr House…

  1. I'm glad to see you finally got an answer! What a crazy long road the trip to an EDS dx can be!!!! Btw I need to update my blog too…. 🙂

  2. Thanks. I am now convinced that there is a fleet of mis or un diagnosed folks out there. Not sure how to reach them or make this all make sense to the medical professionals. I need someone to fund me to go around and educate doctors and nurses…

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