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.

EDS- what it means to me

Well, I finally got a diagnosis confirmed. (the story of how I figured it out in another post where I play House himself).  So now I have had some time to process a bit on Ehlers-Danlos Syndrome, what it means to me and the point of this blog will shift a bit ( thus, the name change). I have learned a lot, about the “disorder” and about myself in the last month or so, and I know that learning will continue over the next year. I hope by sharing the process others can learn as well.

First the baby basics- EDS is a genetic connective tissue disorder. It makes my connective tissue stretchier than normal (and sometimes weaker). This is not always a bad thing, but as I learned last fall, if you do not understand it, can become nearly catastrophic.  My blood has been sent to Baylor Medical  for genetic testing, but it will take several months for results to come back. Dr. Bader, the very wonderful  doctor in Ft Wayne who did the diagnosis and analysis says she most suspects it is a Classis EDS, but I have symptoms of  Hypermobility type as well.  More interestingly, she also told me that only 50% of people diagnosed as EDS come back with a known genetic marker. This is because we really do not understand EDS well, not because I do not have EDS. If I have a known marker, we will do blood tests on my two girls. If I do not, there is no point in the expense. However, we are working on getting them evaluated. I am pretty sure already how the results will come back.  I have also been lucky to find an EDS specialist here in Indiana and now have an Appointment (yay) at his EDS clinic at the beginning of June. I have been even luckier to make internet friends with someone who is already seeing him, and have been putting some of the basic advice he gives into practice in my life now. I have no intention of waiting until June to really feel better 😉  I also still have an appointment with a rheumatologist in April to work on pain and anti-inflammatory meds. I am still waiting to see if I need to make an appointment with a GI specialist, or if my family doctor will work with me on nexium prescriptions.

So, there is impact number one:  I suddenly have a medical team working with me, instead of a family doctor and the endocrinologist I see for my Hashimoto’s. Yikes. However, I hope that by the end of this year, I will be doing much much better, and many of those team members will become annual or even every other year  maintenance check ups.

 Impact number two? More pills. An annoyance. Luckily I am managing to keep it at a reasonable level. I have had Hashimoto’s Thyroiditis for about 10 years now, so I have been over the “I have to take pills every day” mental problem for a while.  But this makes the pile bigger. A headache, but it is seems to be helping. What’s new  in my pill pile? Naproxen ( has been a critical life saver, but I work towards scaling it back), VitaminC ( 3-4  1mg pills/day), B vitamin mix with D and zinc as well, and a Nexium once a day for GERD.  Not so bad, really. Annoying, but easily live-able.

Impact number three is a very positive one. It suddenly makes so much of my life make sense.  The clumsiness as a kid, the “growing pains”, odd aches, easy sprains and tendonitis. The horrible menstrual cramps as a teen, my NeuroCardiogenic Syncope, spastic GI track under stress. The herniation after a tubal that almost killed me, the loss of upper body strength in recent years. They are all dots that look very different, but assemble into a picture when you know what to look for.  Understanding what the strength and weaknesses of my body are now allows me to work with them and get better and stronger, instead of weaker and sicker.

The last impact is that regular non- joint stressing, non-hyperextending, no resistance band exercise is now a regular part of my daily life. No matter if I am tired, weak, achey, creaky, loose, popping and clicking, hurting, the exercise is now a form of medicine and I have to do it to maintain. The good news is that EDS folks tend to build muscle fast. The bad news is that we lose it almost as fast. Skipping more than 2 days means way too many backwards steps and pain for me at this point. For the last month, I have religiously been taking this medicine at least 5 days a week. It started small back at the end of january, 10 minutes a day that ended in tears. For the last 2 weeks it has been 45 minutes a day and no tears at all. Still ice packs after about half the time.  My goal is for 45 minutes of hard workout that is maintenance, with no need to ice or ache after.

Over all, the diagnosis has been Hugely positive- because the truth is, this is genetic and I have had it all of my life, the diagnosis did not change my connective tissue, it changed my understanding of it. More knowledge is always a good thing.

So what does all of this mean in my life?

Waiting

“Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering.” Paulo Coelho

Today is a phone call day. So I sit here, waiting for my neurologist to call and give me the results of the CT Scan I had on Monday.   This means that a phone goes with me everywhere (yep, even the bathroom) and I am not leaving the house. This is one of the big deal results- up for exploration was both if there are any issues with my thymus ( which would implicate Myasthenia Gravis) or if there are any signs of Lung Cancer, or other cancers (because some of my results indicate Lambert Eaton Syndrome).  I have given up trying to imagine what it will feel like if the Dr has to sit me down and tell me I have Small Cell Carcinoma. It is impossible, even this close to the possibility.

I will post and share some of the CT images ( they are very cool) once I know the official report. Out of self protection, I am not going to post them and have peeps second guessing how to read them. Trust me- I spent 2 hours of my Monday afternoon down that road already and it is both scary and frustrating. Finally you have to say ” I know enough to be dangerous and not enough to be trustworthy, so walk away from the monitor”. I left the CD with the data in the computer downstairs and have not gone back to that computer since.  My Dear Hubby ( MDH) was much wiser and declines looking at them at all until we have the report.

UPDATE: Call just came in, no thymoma, no tumors in lungs, CT Scan was clean. Doing a bit of a happy dance here. Will share beautiful CT images soon.