Numbness & Compression Neuropathy

So, I want to tell you about the onset of a new problem I was dealing with this year. It was eventually diagnosed as compression neuropathy (in my hips). Basically, my ligaments in their looseness cause some sort of problem in my hips and impinge nerves from the base of the spine. I now lose feeling in my upper legs and up into the bum when I walk ‘long distances’ and then sit in a normal upright position.

The only relief I’ve found to prevent it from happening is to sit minimally and to spend more time slightly reclined or standing or laying down. Not cool. Whenever I think, “no, I’m sure it’s fine and I’m going to vacuum and then cook and then walk the dog…” it comes back, and despite knowing what it is, I’ll admit, it disturbs me.

My neurologist at UW explained the compression, diagnosed a little vaguely as compression neuropathy, is caused by the hypermobility in my hips and repeated stretching of the ligaments followed possibly by responding muscle spasms. She did research on case studies with EDS patients with these symptoms prior to even seeing me, and she was able to narrow down the diagnosis. What?! It’s what we all hope for in a doctor, that they’ll do their ‘due diligence.’  I almost cried when she came in and knew what Ehlers-Danlos was and familiarized herself with the secondary complications we can develop.

Anyway, I don’t notice a lot of this going on in my hips, because it’s normal for me and muscle spasms elsewhere feel more troublesome day-to-day. Plus, as I’m sure you’ll understand I start to tune-out sensations that interfere with ‘living life.’ You learn to survive this, and more than surviving, you eventually learn to live more often than  survive. Or, always strive for it… every situation is different.

This troublesome, embarrassing, and potentially serious problem started in May of this year. I ignored it! (Don’t do that… 😊). In June, very ironically after a visit to the first doctor I could find after we needed to move to Washington for my husband’s job, I ended up in the ER. :sigh: My doctor was a whopping 2 hour situation to get to that morning. I drove to Bremerton from our rental in Gig Harbor, rode on a ferry for 45 minutes, sat upright in a chair for an hour waiting for said appointment at a coffee shop, then walked a mile to the doctor’s office to then repeat this going back home. Sometimes my stubborn nature startles me looking back.

On the ferry, of all places is when my legs up the inner thighs all the way into my lower back, and in-between, went completely numb. No feeling at all.

I called my doctor who told me to go straight to the ER. My husband was riding back on the ferry with me from his work in Seattle watching as I laid there unable to 1. panic, because there was nowhere to go or 2. talk, because I was shocked thinking it was the onset of something called cauda equina, an emergency that requires spinal surgery.

After many hours at the ER and imaging and a slightly freaked out looking doctor (that’s never a good sign), I was told they didn’t see evidence of cauda equina at this time. I was immensely relieved and simultaneously reserved and sad not knowing what was causing this to happen.  That was that.

A sad fact, I started experiencing this problem over a year and a half ago off and on. I’d previously been admitted to an ER in Oregon with the same symptoms. This is how I knew about the possibility of cauda equina. But, then, I had been summarily dismissed after the physician couldn’t see the problem on imaging, as if that doctor’s job was confined to diagnosis by MRI lacking any clinical insight.

I’m happy I have such an intelligent and discerning doctor now. I know it will still be difficult because of the lack of awareness about EDS. I’ve continued to experience weakness in my legs and numbness, but I was told to expect it.

So, the point of my story is to illustrate you’re not alone in dealing with ‘mysterious symptoms,’ that eventually (hopefully) are figured out or perhaps work their way out through our own diligence and trial and error. Some things I deal with remain a mystery, and I’m okay with that right now, because I will keep pushing for a good team on my side when I can in-between living.

We fight too hard for good care. But, it’s important to keep fighting for good care.





On Changing with the Course of Life

“Imagine that you are brought to a time when illness has caused the energy in your body no longer to be sufficient for you to participate in the world in the ways you have become used to. The ways that have nurtured your self-image. The ways you have cultivated to reaffirm this imagined self that you keep building and rebuilding like an armour about you. What happens when you can no longer keep up the kind of employment that brought money into your home and created your self-image as a good provider? What happens when you are no longer able to keep up your image of yourself as a valuable member of society? When you can no longer maintain your identity as a teacher or plumber or poet or parent? What happens when you can no longer be someone with “responsibilities” to the family or community? … And you ask yourself, “Who was that … person?” Can you sense how your resistance, your desire for things to be other than they are, would be like a vice closing in on you? … The resistance is so painful, the pushing away of the present so isolating and fearful, that a feeling of helplessness arises. The more we resist, the more we contract, and the less space we have in which to live our life. … The confusion and suffering arise from our attachments to how it used to be and how we thought it always would be.”

Another voice – ‘The Injustice of Living with a Chronic Invisible Illness’ Reblog

I so want to create a page listing helpful blogs, websites, and articles. Since I haven’t yet, I have to reblog this post by an amazing young lady with Ehlers-Danlos Syndrome. Give this blog a good look; there is genuineness and wisdom. I have a shot below of the post for you to take a glance at, but click here to read the full article. Peace.

“Being told ‘you look well and you would never know you are sick’ has always felt like a back handed compliment to me. I know people mean well however it makes me feel like because my illness is rare and misunderstood, it’s also maybe slightly irrelevant to others. Those commenting on your looks don’t see that everyday is usually a bad day, low mood, the effort it takes to complete the smallest tasks and the amount of medication you possibly take during your day to day life. They just see the present you, who is usually vacant from all the pain you are trying to comprehend and cope with. Pain that can often force you to live a life with limitations, yet there is no obvious sign of this to others…”

Screenshot of Blog Excerpt
Blog of a Chronically Ill Adolescent… Click to read more.

No Entry Today, Just Some Therapy

I’ve been a little more effected by symptoms since around the time I had stopped writing as much. It’s both increased difficulty with my autonomic system working (diagnosed with postural orthostatic tachycardia syndrome some years ago) and my hip area seizing up causing pain. I cannot tell if it’s dislocating or if the muscles on my left side just are being grumps.

Regardless, hence my hiatus. My doctors through an HMO would not address these problems, and I lost insurance in December also. Now, it’s a long story, and it’s pretty unfair… but, I don’t think it’s helpful to write about until I have more distance and things start to look up more.

So, I am posting this video as therapy. I’m too emotionally exhausted right now, but I can share this cuteness. Take some time for yourself to step back when you need to; the battles AND the joys still go on.

Lara Bloom’s Documentary is Here!

I was so inspired by this documentary. I know I haven’t been writing, but the ideas are there. Too many hard days lately. I hope to see Dr. Franconamo this year… I just need to fill out the paperwork. 😉 …then there is a long wait during which I’ll update on what has been going on.


“Published on Jan 19, 2015…

Issues with my Tissues follows the epic emotional journey of Lara Bloom, an Ehlers-Danlos Syndrome sufferer, as she attempts to complete the London Marathon.”

Lost in the System and Fighting Back

I’m very tired lately, and I’m trying to figure out an increasingly painful (out-of-control) problem with my hips and lower back. They’ve become so bad that my left leg gave out, just stopped working, a couple weeks ago. I don’t have any answers yet but will write about it when I do. All that’s been found so far by my non-specialist doctors is narrowing of the spinal canal (moderate). Now, I didn’t have that last year…

I think it is actually related to hip dysplasia, but I cannot get my doctors here in Portland through the insurance I have to understand the secondary complications of connective tissue disease. They focus on typical explanations, which is good and also bad. It’s bad because there is no consideration of the primary condition I have. It’s good because they don’t assume it is related to a connective tissue disease. Both of these scenarios should be considered. My clinicians are just not educated on connective tissue disease, so the other obvious consideration is negligently overlooked. In fact, I think there are only a few specialists on Ehlers-Danlos Syndrome and related disorders in the country, usually the doctors you see at the EDNF national conference every year.

My doctor put in a request to have my insurance pay for me to go see Dr. Franconamo, but I honestly do not feel much faith for my insurance company, a huge corporation that provides its own care. They are insurance, and they are the healthcare provider. It is wonderful for the general population probably, but I am getting lost in the system.

It’s a hard story, and I’ll tell what has gone on with my experiences in this system one day.

Until then, I’m still working on a resources section. I want o write more often, but it is very hard lately with increased pain and decreased medication. I am also struggling with feeling hopeless; the hurtles to getting as well as I can be feel insurmountable. Luckily, I have some good friends, and they’ve been a great comfort to me.

I got this video from a friend that gave me a big smile, and I thought I’d share it with you. Take comfort in this little “video hug” and keep fighting for fair treatment when you can. And, if you’re tired like me, find a medical advocate through a loved one, friend or local medical advocacy groups to speak up even louder for you. We do not have to fight this hard for healthcare, and if  doctors are held accountable for not referring to a specialist in the condition when dealing with a complicated and less-understood condition, then I think that is a good first step. How many cases of tethered cord and acquIred Chiari and vascular complications could have been spotted earlier? How many become disabled or die each year before doctors are accountable for referring for rare diseases? Prevent complications; don’t wait for them.

Cosmo Article on an Ehlers-Danlos Patient

A friend shared with me an article from November’s Cosmo, and it is a story on a person who learns they have EDS (referred to as joint hypermobility syndrome in the article).

I don’t know about you guys, but any media attention, especially in a magazine a lot of people enjoy like Cosmo, gives me hope.

It gives me hope that one day I won’t have to explain so much when someone asks, “What exactly is it you’re dealing with?” Honestly, I think the explanations can make me feel like I’m focusing more on an illness I have and less on all the good things I have. Thoughts can get stuck in the discussing of the very thing I’m coping with.

Lately, I have taken to giving the short answer to friends. I figure if someone wants to know more, and they care to know more, then they will look up information on what it is I’m dealing with. If it comes up for some reason with a passerby, I may say a little more to help spread the word. I know for me, it becomes a juggling act of how much emotional energy to invest in talking about it when it may not be necessary, when living with it is hard enough.

I know it is different for everyone though, from people who struggle to be heard by their own family, for who I feel greatly, to those who need to talk about it to process living with a chronic illness. I would think that for everyone, it is a good idea to stop and think when deciding whether to talk about… or to not talk about the complexity of a genetic condition. I say this as I think about the times I blurted out to a stranger when feeling too fatigued in an effort to educate, and I ended up more emotionally drained and sad later than was necessary.

So, like I said, articles like this give me hope. This blog is a way to reach out to try to help others in the only way I know how, through being honest and thinking about what is lacking in support for people with illnesses like this. However, it is also my own type of therapy… a way to get out what is on my mind, work through it, and sometimes come to conclusions I may not have come to if not thinking of others who may read.

As an example, when I was depressed over an awful doctor’s appointment, I may have very well sat around all day in a stupor feeling down and unmotivated from that experience that happens too often. However, hopping on the blog to talk about it… I turn into my own sounding board in a way. I find myself working out the situation as I talk or write the way I would with a friend, and in the end, things are better than they would have been had I not done that. It was not my intention when starting the blog, but it is a serendipity for me.

This serendipity is something we can all experience. In thinking about hope and then contemplating educating others on illness and the emotions it has brought up, I am speaking to myself as a friend, as well.

I’ve often put others needs above my own needs in a lot of areas of life, but when illness came into my life, it became increasingly clearer how important it is in everyday life to be a friend to myself, as well. So, anyone else out there who struggles (which are ALL people in our own ways), it’s just a thought to chew on and maybe spit out if it doesn’t apply or take a bigger bite out of on a different day… are you being as good of a friend to yourself as you’d be to someone you care about? We’ve all heard some variation of it since childhood, but I don’t know how many people are actually GOOD at being a friend to themselves…

Here is the article from Cosmo. I hope when empathizing, you are reminded how important you are as a person with value and worth.

EXCERPT: “…Though she’d “learned to function” with the pain, a new general internist whom she visited last year insisted on digging further. Kristina had already had a standard MRI of her brain in the past that was normal. But once her hypermobility syndrome was diagnosed, her internist realized that she needed an upright MRI rather than the regular lying down, closed tube.

“There should be almost no movement at all where head meets spine,” says Dr. Harold Rekate, professor of neurosurgery at Hofstra. “When a patient has a connective tissue disorder, the upright MRI will show you that movement spontaneously, while you would have to make it happen if the patient is supine.”

Kristina’s symptoms were always better lying down, but in an upright position, the MRI could easily capture the natural — and painful — positions of her brain and neck…”

Picture of Lost Lake
Copyright Stephanie McManus, 2014