Love Hurts...

I had sex on the weekend.

Five times!

It was really good sex, too... Until it was over, and I rolled over, and felt that I had somehow managed to dislocate SEVEN ribs. Seriously... Ow. So I have to be really careful about stairs (because any slightest bounce, and my boobs pull on my ribs). And I have no position that's comfortable to sleep in; my ribs are either being pulled apart (on my front or back) or they're being squished together (on either side). Coughing and laughing are also painful.

But, I didn't dislocate my hips! Yay!

And the only other injury sustained was a really bad foot cramp, and I had to manipulate the crap out of my foot before the tendon snapped back into place.

As usual though, with these types of injuries, TOTALLY worth it!

Recovery, and Praise

I've had all of my most problematic joints injected. This includes my left shoulder, left scapula, 3 left ribs, entire spine, left and right SI joints, and both hips. This was done over the course of 4 separate 30 minute appointments. My next appointment, to have everything injected for the second time is on October 3rd, when I have booked a 2 hour appointment to have everything done in one go.

There are 2 reasons for this. First, the two days of really tight, swollen, tendons and ligaments is quite painful. I would rather have the 2 days of pain done and over with, instead of having 2 days for each joint, for a total of 8 days in pain, like I've just had. Second, the immediate tightness causes things to pull on each other, like my shoulder pulling on my neck and back, which caused a great amount of discomfort. I don't want that to happen again.

My Doctor was surprised that I needed to have injections into my scapula, at the bottom, where it connects to the muscle that connects to the spine. This was necessary, since when I bent forward, even with my shoulder being tightly bound to itself, it would still dislocate forward, because there was nothing holding it back. Now, when I bend forward, and let my arms dangle, they're the same length! My left one isn't 3 inches longer anymore! And it doesn't go *slip, thunk* anymore either.

My pain levels in my shoulder have decreased significantly. And this is after only one treatment! My shoulder has only dislocated from being slept on since the injections, and even then, not nearly as bad as it used to.

When I had my spine and neck done, there was a "war of the tissues" going on between the muscles wanting to pull my neck and shoulder toward each other, and the ligaments trying to pull my neck more upright. Because of that, I had a 2 day migraine, which made me feel pretty crappy, more sensitive to light, with the wonderful sensation of having forks in my eye sockets, and an ice pick to the back of my skull. It has since subsided.

I want to shout from the rooftops "Ehlers-Danlos sufferers! Get Prolotherapy!" Sure, it's unpleasant, and sure, it's lots of needles, and sure, your doctor may not think it's even worth sending you for a consult, because they have no idea what our lives are like. BUT... WHAT WE HAVE IS A CONNECTIVE TISSUE DISORDER, WHICH CAUSES OUR CONNECTIVE TISSUES TO STRETCH, AND BECOME LAX. PROLOTHERAPY CAUSES THE TISSUES TO TIGHTEN, AND BECOME STRONGER. Surgeries cause scar tissue, prolotherapy doesn't. Steroid injections may temporarily block pain, but they also cause joint degradation; prolotherapy causes some short-term pain, but actually causes tissues to grow better, stronger, and thicker, alleviating the pain. Physical therapy may strengthen muscles, and allow some people relief, but many physical therapists do not know enough about us not to hurt us in the process. Prolotherapy gives you your tendons and ligaments back, which in turn allows your muscles to do their own job, instead of doing double-duty, and being tense all the time.

More people need to know about this. More people need to be made aware. This is THE TREATMENT. This is our hope. This is the light in the darkness we've been searching for.


Is it a miracle? No. Will it solve everything that's wrong with us? No. But as far as our joints-that-are-hypermobile-to-the-point-of-constant-pain-and-dislocation issues go, this is what we've been waiting for.


The silver lining is looking ever brighter. I am still waiting for an appointment with a cardiologist to have me tested for POTS. That seems to be the biggest issue I've got right now. The constant nausea, dizziness, and incredibly low blood pressure, and the exhaustion. Once I find treatment for those, I think I'll be able to live again.

So Many Needles...

Okay, so the whole waiting thing didn't work.

Once I'd had the doctor stab my shoulder, after a couple of days I could feel that my shoulder was tight enough that it was pulling on other, looser, bits of my anatomy. So I called his office and booked 2 more appointments, for Tuesday, and Thursday this week. During those appointments, I had my entire spine done, as well as my left scapula, and 3 left ribs where they attach to the sternum. And my S.I. joints. I still need to have my hips done, and I'm on the cancellation list for the next available appointment.

I had my neck and lumbar spine done yesterday, and today they are quite sore. The doctor bruised me at one injection point (left S.I.) but it's not causing any extra pain, it's just an ugly bruise. My neck is feeling very tight today, and I had problems finding a position to sleep in last night. But I am sitting straighter, and holding my head in a more natural position than I usually do. I usually crack my neck several times a day to relieve the pressure that I feel, which also allows me to maintain range of motion. Since the injections, that pressure has built and built, and I can't turn my head to the right, as it pulls on some very tender bits on the left side of my neck.

Looking at the injection points on my spine, my mom exclaimed "holy crap your spine is crooked" as it seems to curve about an inch and  half to the right, right before it meets my hips. This is a new curve that wasn't there the last time I had someone look at the curvature of my spine, and I'm assuming it's like that from all the limping I do onto my right leg, causing really asymmetrical pressure.

My wonderfully stabby doctor has informed me that I'm responding well to the injections so far, and that I'm tolerating them better than he had expected. He's also surprised by my ability to spew out medical research, terminology, and "big words" like proprioception without getting tongue-tied. He seems to be quite impressed with my knowledge of how prolotherapy works on the body, and how those effects affect other things.

It's nice to have a doctor that realizes I'm not like some people that Google medical-related things for a few minutes, and proclaim themselves to be educated. He can tell that I actually do know what I'm talking about, and he treats me with more respect than I've ever had from a doctor. He also explains things to me as -not quite an equal- but as though he were talking to someone whose opinions and knowledge were beneficial to him.

So to sum up: I feel like crap, but I also -and more importantly- feel like I'm benefiting from the injections.

Prolotherapy Appointment

I had my first round of prolotherapy injections into my left shoulder this morning.

Turns out, all my fears about the local anesthetic were unfounded, as this one didn't cause searing pain, and amazingly offered some relief during the injection process - enough that it froze the skin, and some soft tissue, but the lovely *poke* into the bone wasn't comfy, and the fluids going in were unpleasant as hell. The doctor did listen to all of my concerns before the injections, and he answered all of my questions afterward. I think he might have been having an off day last time I saw him, because he was nothing but nice today.

On my way to the appointment, my resting pain level was about a 6... So I wasn't feeling all that great to begin with. During the injections, the highest pain spike was a 9, but it only lasted 2-3 minutes, before settling down to an 8 for the rest of the injections. About 15-20 minutes after all the injections were done, all of the local anesthetic had worn off, and my shoulder pain was down to about a 7.

We're now at 2 hours post-injections, and the resting pain is about a 6 again, but when I move it too much, or in certain directions, it'll spike to an 8 or so for a few minutes.

The next step is (for me) the hardest... Waiting...

Waiting to see if this offers any lasting effects...

Waiting to see if this makes me more functional...

Waiting to see if this will decrease my pain...

Waiting for all of that before I can start on any other joint...

Apparently I did well though. He expected me to cry or something from the needles, and the pressure of all the fluids. But I didn't, because it didn't really hurt any more than my "normal" shoulder pain lately. I did wince a few times, and I think I Grrrrr'd once or twice, but that's about it.

I'll try to update frequently-ish, so you can all see the healing/recovery/regeneration process.

G.I. Appointment

I finally had my G.I. appointment on Tuesday.

Diagnosis: IBS.

Okay, fine, I looked at the symptoms of IBS, and yes, I have many of them. But, I also have symptoms of other things, like delayed gastric emptying, and gastroparesis, as well as extreme problems with choking on everything I put in my mouth unless I'm REALLY concentrating on it.

The G.I. doc listened to my concerns as far as "otherwise healthy person with some digestion problems," but he told me flat out that "Ehlers Danlos Syndrome has no effect on the digestive tract." When I attempted to inform him that, yes, in fact, EDS DOES have an effect on the digestive tract, he completely ignored me.

He also said that EDS is such a rare disorder that even though I'm the first person he's ever seen with it, I'm sure to be the last, and because of that he wasn't really interested in learning any more about it; because, you see, he remembers it from med school... The whole paragraph they taught him how many years ago? He's in his late forties or fifties, and the information he learned is SO out of date as to be practically useless to the current body of knowledge.

I was so furious with him at the end of the appointment, that I must have had a burst of adrenaline, because I had angry, restless energy I needed to expel. So I went home, and started packing up some boxes (because we're in the middle of moving) and I moved them myself to the new house. All the boxes I packed - five in total - were packed as full as I could manage (contents of the fridge and freezer, as well as our canned goods, and non-perishable foods), and I had to take them down a flight of stairs to my car, then up a flight of stairs at the new house. By the time I got all the boxes inside, my adrenaline wore off, and my blood pressure tanked. So I spent 15 minutes laying on the living room floor, watching the ceiling dance, and drinking a bottle of water.

I've also got a really bad cold, which is preventing me from taking the medication I take to increase my appetite, and decrease my pain. Because of this, I'm too nauseous from the pain to eat anything, and I've lost 20 pounds... in a week and a half.

To top it all off, everyone at work has the same cold, and my co-worker (the one whose job is similar enough to mine that we share each others work-load) has been off most of the week, putting a lot of extra pressure on me to get things done. This, right now, is the first time I've had all week where I haven't had at least 5 files on my desk with urgent problems to address, as well as a phone attached to my ear, dealing with another file. She isn't sicker than anyone else here, and it really pisses me off that she feels she can just leave me hanging like that, knowing full well that I'm not the healthiest person to begin with. (Sorry, but I really had to rant about that, and now that I have, I feel better)

Next week is my first Prolotherapy appointment, and I'm really hoping I'll be able to let him know that I don't want to have local anaesthetics injected into my body, without having to resort to the "mom voice." I'm going to try once again to explain the part about paradoxical reactions to drugs. Not just that they are less effective, or ineffective, but that they have a tendency to cause the exact opposite reaction in some people (including myself) with EDS. I'm going to suggest an alternative, if he insists that the solution will be too strong, and that it needs to be "cut" with something. Because, really, it's my body, and I don't want local anaesthetics in it. Simple as that.

Vacation, and Recovery...

I went on vacation for a week. All the way to Vancouver. And it was AWESOME!

Firstly, on the drive there, we'd stop the car every hour or so to get out and stretch, so we wouldn't be too stiff when we got there. About halfway there, I stretched my hips and back to the point where for the first time in FIFTEEN YEARS I was able to touch my toes. I know that's one of the nine possible points on the Beighton scale, and I used to be able to do it easily, but after years of "pain avoidance" and tight muscles, I lost the flexibility in my lower back. Apparently 5 minutes of stretching repeated throughout the day is all I needed to touch my toes... Yay me!

Next, there was the concert. Also AWESOME!!! I saw Rammstein! And they blew up EVERYTHING. Seriously, fire, fire everywhere, and I'm glad our seats were as far back as they were, or else I don't think I could have handled the heat.

After that, there was walking. Lots of walking. I walked until I got a blister, then I walked some more, and kept walking until my hip suddenly decided it'd had enough... Then it was bed rest for the next day and a half, and walking with my cane on the one trip we had to take.

After that, we went to Osoyoos, and attempted a swim in the lake... Which was stupid, because it's way too early in the season, and the water is incredibly frigid... But our hotel had a pool, and we took full advantage of it. Which brings up an odd point... During everyday activities, my left shoulder is mostly useless, and my right shoulder is mostly fine. In water, my right shoulder is almost useless, and my left is mostly fine... I found it odd... Swimming around, and it's the pain in my right shoulder which makes me stop.

Through all of this, I found that being at sea level, with all the extra oxygen makes it so much easier for me to breathe while I'm exerting myself (and when I'm not). I didn't have any problems catching my breath walking up hills, or over long distances, like I usually do. And something else about Vancouver, whether it's the weather, or being at sea level, or the humidity, my pain levels were so low. Practically non-existent. And when things did hurt, they healed a lot faster too. The hip pain from over-exertion took a day and a half to heal, and I've had similar injuries before which have taken weeks to even start to feel better.

Now on to the recovery portion... Made it back to Calgary in one piece, but I fell asleep in the car, and really tweaked my neck. It's been six full days of agonizing neck pain, with really stiff muscles. And my left shoulder is seriously annoying the crap out of me right now. Oh, and inexplicably, my twitching and falling have made a comeback.

And the best part? We're moving over the next couple of weeks.

Awareness Month

May is EDS awareness month.

I would like to make you all aware of some hard truths about EDS.

EDS causes its sufferers to be in pain. But that doesn't say much, does it? If you stub your toe on a coffee table, you are in pain. This is nothing like that. The pain caused by EDS is comparable to getting hit by a car. Every day. For the majority of your life.

The pain of EDS is also comparable to what was experienced by those unfortunate enough to have been chained to a medieval torture device, the Rack.

The pain of EDS is often misdiagnosed as Fibromyalgia (FM/FMS) - which is all-over muscle and connective tissue pain. In many places, FMS is a recognized disability, whereas EDS is usually not.

The pain of EDS, for some, is so great, and so poorly managed, that they feel their only choice is to end their life.

I know of one person who has committed suicide as a direct result of the pain caused by EDS. She was diagnosed, and her pain was being "treated" by doctors.

I have been suicidal myself, due to the pain from dislocated joints, overworked muscles, worn out joints, and the endless fatigue caused by the pain. The pain I am in caused me to become depressed to the point where I honestly couldn't care if I lived or died. I didn't see myself as having a life worth living, if I was to be in that much pain, every day, for the rest of my life. Thankfully, I met a nice person who had worked through similar issues, and he was able to talk me down (literally) from my ledge.

I read a letter today, written by a lady with EDS. In it, she expressed her lack of caring. She isn't to the point where she will actively take her own life (I hope), but she is passively allowing herself to die. She can no longer swallow liquids, so she will dehydrate to the point of death in a few days. Do you know why? The ER doc she saw didn't prescribe her pain meds. Medication she has been dependant on for years to have even the slightest semblance of a normal life. Medications which could kill you if stopped abruptly.

If we had more awareness, this could have been avoided. If we had more awareness, we would have more compassion.

If we had more awareness, we wouldn't need to suffer this life-sucking pain, or be called drug-seekers, just because we need more  medication for our chronic, unrelenting pain, than other people of a similar age/weight/sex would need for their "stubbed toe" pain.

So please, PLEASE, spread some awareness, so those that come after may be treated better than we have been.

Hugs, and I hope you all are as well as you can be.