Musings of a Medical Zebra

Archive for the ‘EDS Stuff’ Category

Suggestions: They’re a Good Thing

When people hear about my various ailments, often they try to help by offering suggestions that have worked for a similar problem they’ve had or someone they know has had. I think Martha Stewart would agree with me when I say that suggestions are “a good thing. ” (Yay! I’ve mentioned Martha on here twice now.)

I welcome suggestions — to me they show that people care — and I also see them as an opportunity to educate people about Ehlers-Danlos syndrome (EDS).  I do my best to explain EDS in a concise, easy to understand way. I like to teach, and I like to think that I’m good at it, but sometimes I wonder. It seems as though people just don’t get that their simple suggestions won’t alleviate a complex problem, even after I explain why their suggestions won’t work.

Just because going to the chiropractor fixed Aunt Ida’s subluxed ribs, it doesn’t mean it will help mine. If I went to a chiropractor every time I had a subluxed or dislocated joint — actually I wouldn’t go to a chiropractor  — I’d be there every day, several times a day. I might as well set up a cot in the waiting area so I could be there as each event occurs. Maybe if I did that, I could get a deal on the “natural remedies” and the other miscellaneous,  non-FDA approved stuff  they sell.

On the same note — not chiropractors, I’m talking about suggestions again — I love hearing about how Uncle Herbert once used St. Ives Collagen Elastin to soften his 60 year-old skin. Just because the product has “collagen” in the name and my collagen is fragile (and I often feel 60 years old), it doesn’t mean that using a product made of collagen will make my skin less fragile.

Like I said before, I get that people are trying to help. It’s only natural to want to help someone solve a problem  — it’s human.  If something worked for you or someone you know, it feels good to share it. Maybe someday someone will suggest something that isn’t contraindicated with my condition — chiropractors — or something that might actually work.  Until that time, I’ll leave the suggestions up to my doctors and I’ll continue my attempts at educating  people about EDS.

Clues Continued

Physical therapy eventually helped me to become almost pain free in my left hip. I felt pretty good for several months — through the Spring or Summer of 2004.  My relief turned out to be short-lived.

Once Fall rolled around, my knees started to hurt. Since the pain was in both of my knees, my doctor decided to test me for rheumatoid arthritis. The test came back negative, and I was sent to physical therapy again.  The therapist diagnosed me with Iliotibial Band syndrome.  Therapy was beneficial, but I wasn’t anywhere near pain free at the time of my release.  I simply accepted that I was just going to have to live with knee pain. I relied on Ibuprofen a few times a day, several days out of the week.

Not long after my release from therapy, I experienced significant pain in my wrists and hands. It was late November and I decided to make some gingerbread cookies.  I didn’t have a stand mixer at the time, so I stirred the dough by hand. If you’ve ever made gingerbread cookies, you already know the dough is very thick. If you haven’t, well now you know.

Two days after stirring and rolling the dough,  my fingers hurt so much that I could barely bend them, and my wrists felt broken.  I knew the pain was caused by stirring the gingerbread. I could see having a little bit of soreness, but not the degree of pain I was experiencing. As the days passed, my pain improved. It never completely went away, though.

I decided against calling my doctor this time around.  I  did some research instead. I had a hunch that all my pain was related somehow. I did various google searches in attempt to find a name for my condition with no luck. A week  or two passed, and I thought back to what the physical therapist said — the hypermobility comment.  I put that term into google, along with joint pain, and it came up with a condition called “hypermoblity syndrome.” It sounded close, but didn’t explain everything. I wasn’t sure if that meant I had one condition, or two conditions — hypermobility syndrome and something else. I did more searching and managed to come across some articles about Ehlers-Danlos syndrome (EDS). The more I read about EDS, the more I identified with it.

It took at least a month to muster the courage to print off some info about EDS and approach my doctor with it. I was a little hesitant about suggesting the condition because I didn’t want my doctor to feel insulted. I know that some doctors don’t appreciate it when a patient brings in information about a condition they think they have.

After figuring out the best way to approach her, I made an appointment. The discussion went much better than I expected.  She made an appointment with a geneticist. A month or two later, I was offically diagnosed with EDS.

The First Clues

I mentioned in my second post that I was diagnosed with Ehlers-Danlos syndrome (EDS) in March of 2005.  My symptoms, however, began many years prior. My first experiences with EDS occurred as a teenager. My left hip would occasionally dislocate when I’d bend over to pick something up and my shoulders would pop out when doing large arm circles in PE. At the time, I didn’t think anything of it. The dislocations weren’t painful, so they didn’t seem worth mentioning. Actually, I do recall one of the dislocations being painful. It occurred during my junior year of high school. I was lying on the couch studying, as I often did. My right arm was propped up and my head was resting on my right hand. All of a sudden, I felt my jaw slip. Realizing that something had just gone horribly wrong, I sat up and wiggled my jaw around. I couldn’t open it very far and the right side hung farther down than the left. I decided not to tell anyone about this experience for quite some time — actually it turned out to be a year — because I was more concerned about how my doctor would get my jaw back into place than I was about the pain. I kept picturing a large man yanking violently on my chin until I heard and felt a loud popping noise (and immense pain). It seemed like a better idea just to keep quiet for awhile.

That was the worst dislocation I suffered until Oct. of 2003. At some point during that month, I remember falling asleep on the couch. Normally, I sleep with a pillow between my knees. That night I forgot about the pillow and woke up with a dislocated hip. In retrospect, I know it was a dislocated hip. At the time, I wasn’t sure what happened. I just knew it was very painful. There was a constant burning sensation in my hip that lasted for several days. When the intensity of the burning decreased, I thought my hip was going to be okay. I didn’t see a need to visit my doctor. As the weeks went by, the pain lingered. I developed a noticeable limp, and my husband insisted that I buy and use a cane. I bought a cane that weekend and called my doctor a couple days later. I was diagnosed with trochanteric bursitis. I was given a prednisone injection and sent home with some pain killers/anti-inflammatories, Relafen. My doctor said that I’d need to get another injection if the pain in my hip didn’t go away in three weeks.

I left the doctor’s office and headed home. An hour or so later, it became difficult to walk on my left leg – the leg where I had been given the injection. My left knee didn’t seem to want to bend, and the pain in my hip had increased significantly. I relied on my cane heavily for about a week. I continued to take the Relafen for three weeks. I called my doctor because the pain wasn’t getting any better and because I had developed a new problem – I was able to eat less and I was nauseous most of the time. After looking around online, I was convinced I had gastritis –- stomach lining inflammation.

At my second doctor’s visit, I was supposed to get another prednisone injection. When I told my doctor about my new symptoms, she decided against the injection. She thought I had an ulcer and didn’t want to make it worse by giving me another prednisone injection. She sent me to the hospital for an upper GI and I found out that I had gastritis. Six months later and 25+ pounds lighter –- I was in so much pain that I could eat very little — my stomach had finally healed.

During the healing process, I was sent to physical therapy for my hip. My first visit with the physical therapist made quite an impression on me. As the therapist was evaluating me, she noticed that my joints were extremely flexible. This was something I had always known. The interesting thing to me was the term she used: hypermobility. I kept the term in the back of my mind, thinking it might useful somehow. Several months later, my instincts turned out to be correct.

To be continued…

Medical Zebra and EDS Defined

If you’ve read my previous posts, you may have a couple questions:

What is a medical zebra?

What is Ehlers-Danlos syndrome?

I think I’ll start by answering the first question. Here goes…

In medical school, students are taught to diagnose patients based on the condition that’s most likely.  This makes sense.  Why attempt to diagnose something rare when the answer is right under your nose? This idea goes along with the saying: When you hear hoof beats, think horses, not zebras. The horses are the likely explanation, and the zebras are less likely. A medical zebra, then, is a person with a rare medical condition. As you may have guessed, Ehlers-Danlos syndrome is considered rare.

The second question has a longer answer.  Well, it does if you’re like me.  By that I mean you enjoy reading as much you can about topics that interest you.  While I  could go to the trouble of  comparing the types of EDS and explaining their various manifestations, it’s a waste of time. There are several sites that have prepared this information already.  My plan is to just give a brief explanation of EDS and provide links for you to investigate at your leisure.

So what is Ehlers-Danlos syndrome? Ehlers-Danlos syndrome (EDS) is a group of genetic connective tissue disorders that cause collagen to be weak. Collagen can be thought of as the glue that holds our bodies together.  It’s found in organs, blood vessels, bone, ligaments, etc. Collagen in EDS is sort of like old glue — overly stretchy and weak.  Knowing this will make it a little easier to understand some of the manifestations of EDS in the links provided.

For instance, if your organs are stretchy and weak, one of complications that can occur is a ruptured organ. Hollow organs, such as the intestines and blood vessels such as the aorta, are more prone to rupture.

Here’s another example: hypermobility. This simply means  flexibility. Individuals with EDS are hypermobile because their ligaments are overly stretchy. (Ligaments are responsible for holding joints in place.) The degree of hypermobility varies from person to person. In my case, I was born with the flexibility of a contortionist. Over the years,  I’ve lost a fair amount of this flexibility due to another manifestation of the condition:  spontaneous joint dislocations.

Why do dislocations occur in EDS? Again, ligaments in EDS are overly stretchy. Overly stretchy ligaments can’t hold joints in place. This can lead to dislocations, and eventually osteoarthritis.

Rather than proceed with more examples — I could go on and on — I’m going to stop here.  As promised, more in depth information can be found below. Enjoy!

Generic info

EDS info by type

March 17th, 2005

March 17th, 2005 is a day I remember quite vividly.  Yes, it was St. Patrick’s Day, but that isn’t why I am able to recall it so well. March 17th, 2005 holds significance to me because it was the day I was officially diagnosed with Ehlers-Danlos syndrome (EDS). With the diagnosis came many changes in my life. Well, that’s an understatement.  The life I planned for and the life I am actually living are very different.

If you were to ask me ten years ago what I’d be doing now, I would have told you practicing medicine.  Whether or not I made others aware of it, I wanted to attend medical school from the time I was in 3rd grade.  With my interest in health and science,  it just seemed like the career I was destined for.  As it turns out, I wasn’t actually supposed to be a doctor.  Instead, I’m supposed to spend a lot of time with doctors — as a patient.

This didn’t occur to me until recently.  I was doing career counseling with a psychologist.  My goal was to find something  I’d both like to do and can physically do — not an easy feat. One of the first questions the psychologist asked me was where I expected to be career-wise. I told her in medical school, or finishing up medical school.  It was at that point — when I said it out loud — that I realized I was never meant to be a doctor.  It’s still sinking in even now. I think that’s understandable. Afterall,  I didn’t miss out on the opportunity because of things I had control over – taking the right classes and getting good grades.  Nope. I missed out on the opportunity because of something I have no control over — something many people take for granted. I missed out on the opportunity because of my health.

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