Just an update on my health.

And it's yucky. I know I started that sentence with a conjunction, but right now I'm not the Annoying Grammar Lady. I'm just Mere. And I'm in pain. All the time. So I'm going to start sentences with conjunctions and maybe even stick some fragments in here. Deal, people.

A few months ago, I befriended someone who frequented the same blog as I did. In case you're interested, it's called imbringingbloggingback.com, and it's hysterically funny. The guy who writes it recaps reality shows and is a wonderful writer. Anyway, I met Linda Li in the comments section, and we began talking to each other. Then we befriended each other on Facebook.

If you don't know who Linda is, she was on an episode of the television show Intervention. The show made her look really bad, and I was glad I hadn't seen her episode before I met her because I think it would have colored my opinion of her. At first, we just discussed trivial things, like Grey's Anatomy (we're both huge fans) and ice cream (also, both huge fans), but I began to see her posting about her EDS support group. I had no idea at the time what EDS was. I knew Linda was in pain much of the time because I saw her posts to her group, which was an open group at the time. If a group is open, it means everyone can see the interaction going on within it. She was saying how much her fingers hurt all the time.

At some point, I grew curious and asked her what EDS was. She told me EDS stood for Ehlers-Danlos Syndrome, and it was a connective tissue disorder that caused severe pain. It also caused dislocations of joints and subluxations of joints. I'd had tons of subluxations my whole life, but I'm including a definition in case you don't know what it is.



From echiropractic.net: In simplest terms, a subluxation (a.k.a. Vertebral Subluxation) is when one or more of the bones of your spine (vertebrae) move out of position and create pressure on, or irritate spinal nerves. Subluxations are really a combination of changes going on at the same time. These changes occur both in your spine and throughout your body.



So, essentially, it's the things that get out of whack that your chiropractor shoves back into place. My chiropractor told me years ago I was fixing my own subluxations, that were happening at an alarmingly fast rate, on my own and there wasn't much she could provide for me that I wasn't providing for myself.

Okay, back to the story. I told Linda I understood what she was going through with the pain because I, myself, had an undiagnosed pain condition. She asked what my symptoms were. I told her, and she said, "Dude, you have EDS." 




I was blown away. I began to research the condition, thinking it could be a possibility but not wanting to put all my diagnostic eggs in one basket. Out of the many, many symptoms of this disease that I found, there was only ONE symptom I could find that I didn't have: stretchy, velvety skin all over my body. I did have this kind of skin on my torso, but only on my torso. 




One of the main symptoms of EDS is dislocations. Because of the lack of collagen in your body, your joints are held into place more by your muscles than your ligaments. I thought back as far as my teenage years. When I was 18, I remembered my hip dislocating and my mom taking me to the chiropractor she used. I was in so much pain and when they shoved it back in, I had instant relief but was still left sore for days. It happened a number of times over the years, but I just kind of shoved it back in. 


After Mitchell was born, it got worse. My hip didn't really hurt, but my shoulder began to hurt like nothing I've ever felt before. It was, like, so much pain it put me out of commission, and nothing made it feel better. I tried ice. I tried heat. I tried alternating ice and heat. By the time we were living here in San Antonio, I was ready to drive off a bridge I was in so much pain with my shoulder. I was still having problems with my hip, but I was dealing with that pain. 


And then I got pregnant with twins. That took the pain from the level where I wanted to die from it to the level where I wanted to die 10 times over from it. Both of my hips and pelvis were jumping around all over the place. My shoulder dislocated around six months into my pregnancy. It was the first time that happened. I didn't tell anyone because I felt like I was already complaining enough. I thought maybe it had to do with being pregnant with multiples, so I didn't even ask about it. I did, however, ask about my pelvic and hip area. The OB said many women had problems with their pelvises during a twin pregnancy but he'd never seen dislocations from it, so he gave me Darvocet. 


I didn't want my body or the babies' bodies to become chemically dependent on the drug, so I only took it when a hip dislocated. That generally only happened when I walked further than the bed to the bathroom, so I tried to stay in bed as much as possible. 


After they were born, I decided I needed to find out what was causing my shoulder pain. I had MRI after MRI and they found nothing wrong. I was sent to a neurosurgeon who was very offensive and told me I needed to see a psychiatrist and get on Wellbutrin. If you ever have to see a neurosurgeon and want to know who NOT to see, contact me. I'll tell you.


From there, we went to a pain management doctor upon the advice of my psychiatrist. She immediately saw how much pain I was in and wrote me a prescription for pain meds. She then devised a plan, starting with physical therapy.


Physical therapy tore me up. The exercises they had me do had my shoulder dislocating and subluxating all the time. It was hell. But I stuck it out and did it because they said it might get better. The PT told me I was "hypermobile," a term with which I would later become very familiar.


After three months of PT, I wasn't better. I was worse. She sent me to a shoulder guy. An ortho who specialized in shoulders. He saw nothing wrong with my shoulder. I popped it in and out for him. It hurt like hell, but I did it. he said, oh, that's weird. You should have that looked at. IDIOT. That's what I was doing. He said he couldn't help me because it wasn't surgical and he didn't know how to fix it.


So I went back to my doc, and she said, that's all I can do. You just may have to live in pain forever. I told her I was undermedicated for the kind of pain I had. She said since nothing was wrong with me, like she didn't have proof that anything was wrong with me, she couldn't give me stronger meds.


This is where Linda comes in. She pointed me in the right direction to get the literature to bring to my doctor. I highlighted all the symptoms I had, again, all of them except the stretchy skin, and I even charted dates and names of chiropractors where dislocations were fixed. I took it to her. She looked straight at me and said, "You don't have this because you don't have stretchy skin."


Here's the deal with the stretchy skin. Two decades ago, that was the indicator for this disease. In the last decade, new research has been conducted showing you don't have to have stretchy skin to have this disease. I had that research with me and she wouldn't look at it.

 - I broke here on 2/15/2012 at 9 p.m. to go to sleep -
 - I started writing again on 2/16/2012 at 8:45 a.m. -

She wouldn't look at it because, as I've found, there are a lot of doctors out there who think they know it all. They refuse to take the patient seriously because the patient is not a doctor and has not been to medical school.

There's a saying they're taught in medical school: When you hear hoofbeats behind you, do you expect to see a horse or a zebra? They're trained to look for the most obvious solution to the problem. We, as EDSers, call ourselves zebras.

While my doctor's point was valid, the patient has a lot more time to act on her own behalf, and what she finds should be taken seriously. What she told me was this, "You could take all of those symptoms and put them together and find any number of diseases they would fit." What I wanted to tell her was, "No. No you can't. I tried. I scoured the Internet for other diseases that fit my 20-30 symptoms, and there were no other diseases that fit them all perfectly. This is the only one." But I couldn't because at that poinit, I was in tears. That's the way I left her office. In tears.

Now, I don't want to paint her as all bad. Like I said before, she at least gives me hydrocodone for my pain. I'm learning to work through it with things like meditation (when I can do that with two toddlers) and deep breathing. I'm also learning to turn the pain around and use it for fuel. I've done a lot of research into that, and, believe it or not, it's possible. My neighbor, who is also a friend and someone I look up to as a total inspiration, has rheumatoid arthritis, and she runs every day. She says the first part of her runs are hell because they hurt so bad, but ultimately, it helps her. I'm finding the things that help me. Some of them hurt at first but by the end, I know they've helped. Yoga helps because I know my body so well now that I know how to modify the programs in a way where I won't dislocate or subluxate. Walking helps. Walking helps so much. Just getting into the fresh air, stretching my legs and standing up straight helps a lot. It's more mental than physical. Scoliosis is also part of this disease, and my spine is already showing scoliosis curvature. So trying to stay upright is good for me.

So I'm learning to get by on just a couple of pills a day and substitute regular Tylenol or Naproxen for the rest of the day. That way I'm kind of hoarding the rest of my meds for when I have a dislocation or particularly bad subluxation. Because I'm undermedicated, that's the only way I can do it.

Even though I wasn't supposed to, I'd seen a second pain doctor months ago for a second opinion. He was an injection specialist. He gave me several injections and they didn't work. He said my muscles were extremely stressed because they were all being pulled, and he didn't know why. He couldn't see anything in my MRIs that would cause them to be so stressed and he couldn't see anything in the way my body worked that would make them be constantly pulled. He told me to do lots of stretches and exercise more (this could be very dangerous for someone with EDS, but at the time I didn't know about the disease), so I tried, but it hurt and the subluxations were coming on more and more. He even sent me back to PT, and two PTs there told me I was hypermobile. I never knew what that meant, just that all the PTs kept telling me I was hypermobile.
Let's backtrack a bit to when I met Linda. When I was telling her my symptoms, it was more conversational, but these were the ones I told her I had (and I by no means listed them all):

Random dislocations
Constant subluxations
A spine that wouldn't stay aligned even right after the chiropractor aligned it
A high heart rate that wouldn't stay in the normal range
Lower GI problems (Some say Crohn's, some say IBS, mostly a clinical diagnosis and doctors disagree)
Upper GI problems (Gastroparesis)
Extreme pain all over my body, mostly in my joints
Joints that popped over and over again, and when they popped, it relieved my pain

These were just a few, and, like I mentioned before, she said, "Dude, you have EDS." Now that I look back on it, it would have been very obvious to anyone who has Type 3 EDS (there are six types of the disease, mine is type 3, hypermobility), and now I can see signs of it in my kids and wonder if I'll ever get a diagnosis so I can help them.

After Linda told me she thought I had EDS, and after I was shot down by my doctor, I felt a great sense of depression. I kind of wanted to give up on chasing a diagnosis. I was ashamed of myself for trying ot self-diagnose. How dare I? At this point I had joined Linda's EDS group on Facebook. The people's stories in this group, well, they all could have been my own when they were my age. It was all so similar.

They introduced me to things like the Beighton scale, which measures flexibility. It scores on a scale of 9. You get one point for each "thing" you can do. The reason it measures flexibility is because if your body is lacking collagen, you'll be naturally more flexible. I scored an 8 out of 9 on the Beighton Scale. That put me right smack dab into the EDS 3 category.

Here's the thing that irks me: you can be tested for the gene for this disease in addition to being clinically diagnosed. Any EDS specialist would clinically diagnose me from all of the symptoms I have, but if a doctor doubted me, all he'd have to do would be give me a genetic test.

The thing is, there's no cure or even treatment for this disease. The only "treatment" is to treat for pain. There are multiple ways to do this, but many EDS patients are treated with opiods, which are pills that are a combination of an opiate and an analgesic. I've been on Vicodin (also called Norco or Loritab) since the twins were born.

Because of the fact that they are pain pills and commonly abused, there are a lot of people in my life that became worried I was an addict. At a couple of different points, my body became chemically dependent on the pills, but I was by no means an addict. There is a huge difference, and people don't know that.

I later learned that many people with chronic pain conditions face the same kind of accusations from their friends and family. What people don't know is when you have a legitimate pain condition, you don't get high from prescription pain pills. The pain is too strong for the high to come through.

In addition, I have the tolerance of an ox. A big ox. Like a monster ox. A prehistoric ox from the past that would make a modern ox look like an ant. I don't know why I have it. My former psychiatrist theorized I have a metabolic condition that causes me to metabolize medication faster than other people. She says it's genetic and wondered if anyone else in my family had the same high tolerance to sedatives and pain medications. I told her I had no idea. So even though the doc was giving me the maximum dosage she could give me, I still had to hoard medication to save for the days when the pain was too bad to manage on my own because the amount she gave me wasn't enough to handle the pain every day.

I went through several periods where I had withdrawal symptoms because I foolishly didn't give myself time to wean myself off the pills if I knew I was going to run out before my next refill was allowed. It was horrible. I've learned since then to take myself down slowly. I've also learned to reset my tolerance with either complete breaks from the medication for four to six weeks or taking a very small amount of it for four to six weeks. I know a lot more about pills than I used to. I've ended up taking a lot of pills in the last two years. I now know that my life will be different forever. I'll likely have to have these pills in order to make it through some days for the rest of my life. That's so disconcerting to me.

I've asked a few other doctors for referrals to a specialist and two of the docs told me they didn't even believe the disease existed and the others said the same bit about the stretchy skin. The people in my online support group said they got that a lot, too, while they were trying to get a diagnosis. For some of them, it took up to 30 years to get a diagnosis. I'm so blown away by that. It's such a little known disease that it actually takes that long to get diagnosed. I just don't understand why doctor's have this rationale: It's incredibly rare, so you don't have it. Maybe it's incredibly rare because people who have it can't get a freaking diagnosis. And just because something is incredibly rare doesn't mean NO ONE has it. It means a few people have it. Why am I not one of those people?

My gastrointerologist said he'd heard of the disease because a lot of people who have it have the same GI issues I have. He said it's definitely possible, but, again, no referral. He said he didn't know enough about it to give me one.

So that's where I am. This one disease explains all of my symptoms, right down to the exhaustion and pain. I'm not sure where to go next. I'm taking a break from chasing an official diagnosis. I'm going to give it a couple of months and then get back on it. One woman in one of my support groups has a good list of specialists in the area, so I'm going to call the offices and see what I can do. I'm just so worn out from all this. It's been a hard couple of years since the twins were born, and the implant I just had put in to stop all the vomiting is causing painful gas bubbles. I have to get some testing done for that tomorrow morning. I hope to find out why this is happening soon. It's really painful.