Ehlers-Danlos, Hypermobility, and Finally Finding Answers to Chronic Illness (Subtitle: Where I’m At)

I have been quiet lately. I have a lot on my plate. I am behind in life and everything I have promised to others. I am sick and tired constantly. This is a flare. The pain is always looming on the edge of my bodily perception. The bermuda grass is taking over my garden outside, and as I continue to find myself sick feeling if outside in the sun too long I’m beginning to pack away the dreams of a farm. Maybe next life.

We’ve traveled a lot in the last couple months. My husband’s mother was diagnosed with a rare form of cancer, so we have been traveling back and forth to see her as she goes through radiation and chemo. We went and visited my father in Iowa for the first time in 4 years. Travel makes me sick. I’m finding as I get older (because 33 feels ancient in this body), it’s getting harder and harder to recover from the pain and fatigue from a long car ride.

After nearly 20 years of trying to find an answer to my chronic fatigue and pain, I was diagnosed last month with benign joint hypermobility disorder. That’s an outdated term for joint hypermobility disorder, which is also likely a full-blown case of Ehlers-Danlos Syndrome Hypermobility Type.

We’d worried I had Lupus. We looked at the criteria for Fibromyalgia and nodded slowly. We found that I was genetically at-risk for Celiac Disease, and considering how we discovered my bipolar disorder was actually a severe case of gluten-intolerance we suspected that I did, in fact, have Celiac Disease. It was just that I’ll never be able to confirm it, because after being off wheat for my daughter’s food problems as an infant taught me that I can no longer eat gluten without getting violently ill. There’s also an egg allergy/intolerance thrown into the mix.

But even with the food issues worked out for myself, I was still in constant pain. I was still sick. I was finally sent to a rheumatologist with a full lab work up saying I was slightly insufficient in vitamin D and had inflammation… And a history saying that my liver freaks out any time I get put on a new medication and starts eating itself.

At the end of 4 hours split between 2 appointments and 5 rheumatologists (at a teaching clinic), I came home angry that all of my problems could be blamed on being double jointed. They might not have spent enough time explaining things to me. When I started googling, though, the final puzzle piece fell into place and I realized that they were, in fact, correct.

I have Joint Hypermobility Disorder, which depending on what expert you talk to is also Ehlers-Danlos Hypermobility Type. This means that I am incredibly flexible, which I could have sworn was supposed to be a good thing. What it really means, though, is that my muscles are weak and fatigued constantly, because they are working overtime to keep my joints from dislocating…

Because my joints dislocate or subluxate (slip in and out of place), or they do anything in between those two things. It’s painful. I’ve dislocated a hip in my sleep. I’ve dislocated my back bending over to pet my cat. My neck is so weak that I recently cut my hair, because long hair was giving me severe headaches due to the weight it was putting on my neck. I am tired all the time, because my spine compresses and causes severe, burning nerve pain up my back down to my toes.

I fall sometimes. My ankle rolls, and suddenly I’m on the ground.

EDS is a genetic callogen defect. Collagen is the glue of the body, and it’s in most of your body. Mine doesn’t work right, and because of that some days I feel like I’m falling apart. This has been going on since I was a teenager, at 14 my knees started going out. I had a doctor tell me at 16 that my sciatica was simply due to being obese and having poor posture, because, you know, sciatica is really common in 16-year-olds.

My pregnancy was a nightmare, but I couldn’t get my OB to listen to me, because she’d had a bit of back pain while pregnant and it was normal…  Except many women end up in wheel chairs and destroying their backs with pregnancy when they have this, and, oh right, epidurals?  They don’t work, because local anesthetic doesn’t work.

The funny thing is that beyond the pain and fatigue, I thought all of this was normal. Despite it being a rare disease, both of my parents have these problems to varying degrees. My grandmothers on both side had problems

With this I most likely have an autonomic nervous system problem, which causes my heart and blood pressure to do crazy things throughout the day making me feel weak, dizzy, ill, and anxious. My heart races. I find myself having a hard time breathing. Apparently this isn’t normal? Apparently it’s not just anxiety.

Apparently it’s normal for a person with EDS/JHS to be diagnosed with a million things, including mental illnesses, because doctors learn this is a rare disease they will probably never see. It took me nearly 20 years to get a diagnosis, more if you count my stomach problems that started at 9.

My husband is now working on getting his own diagnosis for EDS (I would have preferred the odds be used towards winning the lottery instead of us both having the same rare disease, thanks). Our GP looked shocked and said, “I’ve never actually seen this before. I’m going to have to research more,” when he pulled his skin away from his arm and neck to show how it stretches…  Well, after she cringed and gave a very professional “Ew.”

I don’t plan on this becoming a blog about my chronic illness, but I probably will vent from time-to-time about it. This is a personal blog, after all, and I talk about my life here. This is a huge part of my life. Now my life is filled with physical therapy appointments and starting next week cognitive behavioral therapy to help me manage the pain and anxiety that has developed due to pain and what we thought were panic attacks.

Mainly I just wanted everyone to know I’m still here. I’m still alive. I’m working on stuff for the blog this afternoon, including videos! I’m working on getting thank you notes written, but truth be told I’m slow because lately my hands haven’t been wanting to hold pens much… Which doesn’t bode well for my art. Little bit at a time. I will get things done.

More on EDS: http://www.ednf.org/
More on Hypermobility Disorder: http://www.hypermobility.org

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6 thoughts on “Ehlers-Danlos, Hypermobility, and Finally Finding Answers to Chronic Illness (Subtitle: Where I’m At)

  1. ~Love and Blessings~ May they shower over you and give you what you need to navigate this difficult time (life).

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  2. Reblogged this on Taigh Brighde and commented:
    As someone with a partner who suffers from cronic pain and has been struggling for over a year and a half to find out what’s going on with her body with limited results so far, my heart goes out to anyone who suffers from any sort of cronic pain induced problems, conditions, disorders, etc.

    But at the same time I am constantly awed by the strength and resolve many of them, my wife included, struggle through whatever hinders their life and fight the neverending battle of finding a balanced place in their life where they can live as healthy and happy as possible in concern of their condition.

    May Brigid guide and guard all of the people struggling through conditions like this and may She bring them some healing or at least some much needed rest and peace along the way.

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  3. Ugh. My knee *used* to slip out of place frequently, when I was younger, and the one particular knee has always been more than happy to bend the wrong way . .. but that’s only one joint, and it’s more and more rare the older I get (that particular knee is getting less and less happy to bend too far in either direction, at this point!) and I cannot, cannot imagine having to deal with all my joints being all ambivalent about being joints at best. (((gentle hugs)))

    Chronic illnesses suck. When I think of those that those I care about have to deal with, and I think about my own (yay migraines!) I decide I’d rather have migraines. (Handy, that, since that’s what I’ve got).

    “Ew”? *sigh* In all her doctoring and schooling, attached skin that simply stretches away way more than “normal” constitutes an ‘ew’? That’s . . . .funny and sad.

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    1. A lot of times people lose their hypermobility as they get older. For me that’s bitter sweet, because I’ll likely lose the mobility due to osteoarthritis from the damage that’s been done to my joints. My knees have gotten better with time, but they still slip every once in a while. I don’t wish it on anyone.

      I have migraines, too. It’s another part of it for me, and probably part of my autonomic nervous system issues. Personally I’d rather have my knee go out.

      I thought that, too. I guess we all have those things that gross us out no matter what. For me it’s people spitting. For her I guess it’s rubber man skin. 🙂

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