A Perfect Storm : Life with Ehlers-Danlos Syndrome

Sometimes I get pretty smug about how well I live my life with a connective tissue disorder, Ehlers-Danlos Syndrome. See my post: Swim and Ehlers-Danlos Syndrome for an example. I am pretty proud of myself for regaining my health after a long six or seven years spent disabled by the condition.. it took a lot of research, and then a lot of grief, and then a lot of work and commitment to get to the place I’m in now, which is mainly healthy and pretty active. But every now and then I’m humbled by the power of this condition to take complete control of my life when I least expect it.

No matter how hard I try to remain healthy, now and again I get sidelined. Most usually it is stress, or a simple virus, that knocks me down and puts me out of the game of life for a while. I recently wrote about stress and how I manage it, after what was an incredibly emotionally exhausting saga in my life. I know how important it is to manage stress because this isn’t my first rodeo. I knew at the time I wrote that post that I would be paying for that stressful experience, and I was trying to be proactive to minimize the damage. And still, here I am, in severe pain, contemplating a long recovery from what began as a common cold.

As I feared might happen, extreme stress likely led to susceptibility to infection, and a simple annoying cold caused the perfect storm. I caught cold a week ago and it has been pretty nasty. I ended up laying around for several days (bad, bad, bad when you have EDS.) I violently sneezed a lot, which caused me to dislocate my shoulder and aggravate an old back injury. And so on top of a wicked cold all of the muscles in my shoulder and upper back are spasming. There are hot knives in my back and neck now, and it’s hard to sit, hard to stand, hard to sleep, hard to move. I know from experience that I should move anyway, but there’s nothing like severe pain to discourage that nonsense! If I don’t move, my recovery will be longer. If I do move, it’s agonizing and slow. I know from experience that I will not likely feel 100% again for days if not weeks. It’s frustrating.

Another complication of the common cold for me is a flare-up of my dysautonomia symptoms. Dysautonomia is the malfunction of the autonomic nervous system- which controls your “automatic” body functions like blood pressure, heart rate, digestion and temperature control. I nearly faint every time I stand, I’m freezing and my arms and legs are ice blocks. My heart races and palpitates. I can’t think clearly, I forget words and sometimes even slur. I’ve been “lucky” to find much relief from this common comorbidity of EDS through swim. But I haven’t been swimming lately, and for whatever reason these problematic symptoms always comes back with a vengeance when I get sick.

So here I am still sick with the remnants of a cold, hot knives in my back and neck- dizzy, cold and exhausted, wondering how long this flare-up is going to last. In the meantime I’m darned near useless as a human being and there’s nothing I hate more than doing nothing. Productivity is very important to me. If nothing else, when I’m down I like to knit- but looking down at my work is impossible when my neck is spasming… and so I read and watch Netflix, taking frequent breaks to stretch- and work hard at being nice to myself. Patience is what I must practice, in times like these.

One thing I have learned is that I will recover, even if it takes a while- I will wake up pain-free once more, I will be back in the pool in time, and I will be smug about my good health again. And then, when I least expect it, EDS will strike again.




Today’s Project: Family history research on Ancestry.com

Today’s Soundtrack: Coloring Book by Chance the Rapper

I’m Reading: The Stand by Stephen King. For the third time. It’s been a while.

Swim and Ehlers-Danlos Syndrome

If you met me today you might think it surprising that I once spent more than three years of my life disabled. I was walking with a cane, slurring my speech, weak and in excruciating pain, grossly overweight, taking pills all day, fainting often, unable to function in the real-world: disabled. But it happened, and the most important thing I ever did was get in a pool.

A photo posted by Phaedra (@phaeriedust) on

It all started when I was born, really. I have a genetic connective tissue disease called Ehlers-Danlos Syndrome that has been present since birth. On reflection it is clear that there were indications of this condition when I was a kid, but it wasn’t until I turned 30 before I began having serious health problems. I am lucky, many who have EDS are plagued by severe symptoms all their lives.

For me it started with fatigue, I remember. I felt exhausted all of the time. Pain soon followed. I had muscle spasms, nerve pain, arthritis in my joints, the whole thing, all the time. I was injured around this time; I fell and dislocated my collarbone which violently pulled my whole shoulder out of socket. The stretched ligaments in my shoulder stayed stretched and my shoulder began dislocating frequently, often every day, sometimes a few times a day. The muscles in my shoulder, neck and back would spasm in revolt and I would be stuck motionless until the spasm stopped- sometimes for days, sometimes for weeks. Life became hell.

I saw some doctors, and then some more doctors, and then some more. I spent more than six years at getting a diagnosis, and then only found success after a relative was diagnosed with the same condition. In the meantime I was falling apart.

It kills me to think of it now- how much of my life I missed during what I now refer to as the “dark years”. I never once stepped foot in my youngest child’s preschool. Not once. I quit cooking dinners for my family. I quit running my business, with which I made enough money to contribute financially to the household. I was just that sick. Everything came apart.

I took all the medications suggested to me by doctors. I tried various diets and took advice from anybody and everywhere. I saw all sorts of specialists. I even went to spiritual healers and sought help from alternative medicine gurus. I got all the help in the world and did everything I could think of to get better, but nothing worked. I researched endlessly. I became extremely frustrated and disillusioned with the medical system. I began to believe that I may be disabled for all of my life. Year after miserable year passed and yet I just couldn’t give up hope.

Then one day I walked into a new physical therapy office with a pool and everything changed. I mean, it wasn’t immediate or anything- it took some time and I worked for it. But when I was released from water therapy just one month later I was already a changed person, on a path that would lead me to wellness.

Prior to being put in a pool for therapy I wasn’t physically active almost at all because it hurt so bad, and because I was so exhausted. Exercise was near impossible for me. I was in a gloomy place, I was anxious, I was bored, I was weak. During water therapy I began to see improvements in all of those areas. My pain lessened, and with that some of my exhaustion. And it seemed pretty easy work, too! I remember being frustrated a little, I remember it hurting to work in the pool, I do. But mild exercise in the water was nothing near as painful as just trying to get down the stairs in my house. I handled it.

After one month in a pool, seemingly just floating around doing mild exercises, my shoulder was dislocating less frequently. The associated muscle spasms, which were horrendous, happened less. My nerve pain levels were somewhat better. I felt better both physically and mentally. I had even lost a few pounds. But I was still sick. It would take me the next three years to almost fully return to health. I did this primarily with swim.

One thing I want to note, which was a huge contributing factor at the time, I had recently been adequately treated for my pain. I was still in pain, but it was more manageable. Can you believe that I was not treated for pain for years and years of agony? It happened. Being in agony all the time left me without any energy at all. I believe now that had I not *finally* had my pain in some sort of control at the time of this therapy I may not have been successful. Pain is a powerful deterrent to exercise. It is horrible for a can-do attitude.

But back to my story. 😛

After I completed water therapy in the winter of that first year I decided to book lap swim time with a local city program that spring. I went 2-3 days a week for an hour each day. I was slow. I was rusty at lap swimming. The first day it took me an hour to swim just a few laps. I was so weak I couldn’t get out of the pool and was afraid to drive home. But I was determined and I stuck to it. Each day I could swim more laps in less time. Each day!

When that program ended I joined a local swim group for the summer. I went almost 5 days a week for one hour each day, and that is when I really began noticing big changes. Pain, what pain?! The only pain medication I needed by then was some over-the-counter anti-inflammatories, just once or twice a day. Nerve pain and tremors? 95% improved. Muscle spasms? Rare. Slurring/fatigue/swallowing issues/GI issues/sleep issues/anxiety/tremors/muscle weakness/fainting- GONE. GONE. Gone!!!! And you know what else was gone by this time? 35lbs of dead weight. And all that fear I was carrying around that I would never be a productive person again.

Since the local city and club groups operated out of an outdoor pool and I’m sensitive to cold weather I purchased a gym membership at a facility with a pool that fall. Ever since then, except for just a few brief periods of inactivity, I have swam just 3-4 times a week for about 30 minutes each day. That’s it, and I haven’t used a cane one day since that first spring! I’ve lost 50lbs. I go to all of my kids activities and events. I travel, I hike, I write, I do so many things I had given up in those dark years! I’m fully alive. People don’t believe me when I tell them that I know what it is like to be disabled for years at a time.

So let’s talk about those “brief periods of inactivity” for a second. I should have never done that. It was a mistake. First, I took a few months off swim for excuses not worth mentioning. Within weeks I began losing muscle tone and picking up weight, my pain increased, my GI issues returned, everything began to go down hill. Within a few short months I had to “begin again”. It wasn’t as hard as the first time, but it was still very hard to regain my health and strength and the will to try. The second time I slacked was during a year in which my daughters schedules were hectic and kept me far from the gym where I swim. At the time I felt that I had no choice but to give my gym time up, but I know now that I should have figured it out. I gained back 15lbs during that period and spent more than a fair share of days in a recliner with a heating pad. Each time I learned a lesson. Swim is life.

I think sometimes about how my life might have been different if the first doctor I had seen had put me in a pool. It would have been different too, if I had always been properly treated for pain, I’m sure.

I can’t know your situation, I can’t know what is best for you and your body. All I can tell you is what I know about my situation, and what has helped me. Swim may not be something you can do. I don’t know. But if you are in a bad spot of health, looking for something, anything to try- I suggest getting in the water. For best results I suggest starting with water therapy provided by a professional.

Swim works. Swim works because you utilize and activate every muscle group. Swim works because it whips your cardiovascular system into shape too. Swim works for some people with Ehlers-Danlos Syndrome because the lean muscle, the strength you gain from swim, helps keep your joints where they belong. Swim works because it releases feel-good hormones into your blood. Euphoria is awesome! Swim works for some people with connective tissue disorders because it is a low-impact sport. I can’t pound the pavement anymore- but you should see me sprint a lap! No pain. None. Ok, it makes me breathe hard and at first I was pretty achy. But just 6 years ago I could barely walk across my yard. Swim works because it is amazing how fast your body gains endurance and strength- if you push yourself even a little you will achieve success over time. And time is all we’ve got.

I wish so much I could tell sick-me what well-me knows now. Since I can’t, I hope my experience helps you to avoid your own dark years. Try it, tell me how you do.

And if swim is simply not something you can do- don’t give up. Keep looking for answers. Keep fighting. Don’t give up. I didn’t want to go to therapy that first day. I wanted to cancel the whole thing. I wanted to cancel my life. I didn’t, and it’s everything. <3