New Diognosis: EDS/Hypermobility

At the beginning of last week I was diagnosed with Hypermobile Ehlers-Danlos (HEDS). I had already been told I didn’t have it by two other doctors, plus the doctor I was seeing at the time was supposed to be helping me with my fibro, so I was really surprised when I received the diagnosis. I had spent several months thinking I had hypermobility (even after the two doctors told me I didn’t), so I wasn’t shocked. It’s nice when a doctor confirms what you know in your heart. This doctor was phenomenal! He and his staff made me feel like a VIP by treating me in such a way that I knew they were there to help me. All doctors should be there to help their patients, but I have rarely felt like more than just another appointment to hurry through. Anyway. The doctor gave me the HEDS diagnosis (he told me I was “stretchy person”), made it my primary issue (instead of fibromyalgia), and filled my schedule with new tests and appointments. I had blood work done, started physical therapy, am scheduled for an echo-cardiogram (to make sure my heart valves aren’t stretching), and am waiting to get custom orthotic insoles made. Eesh! 

So, what does this new diagnosis mean?  I have a more solid diagnosis than fibromyalgia and will possibly be taken more seriously from now on – yay! I now understand all the weird issues I’ve had since I was a child and have a better understanding of why I feel like I do these days. I have a better idea of what to expect in the future and have a solid plan for improving my quality of life. It also means that I now know that every child I give birth to will have a 50-70% chance of having HEDS as well. 😦 The doctor gave me a referral to genetic counseling; it took me awhile to understand the full gravity of what that meant. The thought of passing on pain and problems to my children is very troubling and it had me in tears for awhile after the appointment was over. But then I realized that, despite all the pain and confusion in my own life, I am very happy to be alive and have no regrets. It’s true! At least one mother with HEDS I’ve spoken with feels very strongly about NOT passing it on to more children (she already has one, a daughter who did get the HEDS) and is getting her tubes tied. But 90% of the other mothers with HEDS I’ve spoken to have no regrets, even though the way was fraught with pain, loss, and the discoveries that their children will have this disease as well.

HEDS is painful and weird, but it’s not life-threatening. The vascular form of EDS is very scary and very dangerous, but I do not have that form. I will only be able to pass on the form that I currently have according to this: “It is worthwhile to emphasize to affected individuals and family members that EDS, hypermobility type does not evolve into any of the other types, either in the affected individual or in their offspring, and that the hypermobility type does not confer increased risk for early mortality.” I sincerely believe that I will be doing the right thing by having children. I am very at peace with this decision and so is Honey. In regards to how the news of the HEDS will impact my body’s ability to carry a baby… I already knew any pregnancies would be very hard and painful, now I have a better idea of what to expect. Again, I’m completely at peace with the thought of bringing a baby into the world, although at the moment I’m a bit concerned about picking the right timing. I’m gonna need a lot of help during the pregnancy and then even more once a baby is born, so Honey and I need to be in a place (financially and literally) where we can make that happen. But… I had a beautiful spiritual experience the other evening (before I received the new diagnosis) while taking a much-needed soak in the tub. I felt loved, comforted, and blessed for wanting to conceive. So… who knows? Maybe there will be little people in the near future, and I’ll be their stretchy Momma. 🙂

The doctor did express concern about a potential heart problem associated with HEDS and had me get an ultrasound of my heart (echo-cardiogram). I had that done on Monday and am nervously awaiting the results. A heart issue could potentially impact my ability to carry a child (more than the rest of my condition)… so that has me worried. Will let you know when I have an update.

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Tips for Understanding People with Chronic Pain

Excellent advice. Those of us with chronic pain need understanding and love!

Link

I Will Prevail

This past week was an interesting mix of pain, research, and productivity. I felt pretty crummy for most of the week, perhaps due to a weather system passing through. I got a few things done during the beginning of the week, like baking up two loaves of gluten free bread, but I spent most of my time on the couch. Researched a lot about sourdough bread-making. I also did some reading in one of my favorite cookbooks, Nourishing Traditions. By the end of the week I was feeling better and was able to make a loaf of GF sourdough bread that didn’t taste very sour, but was still very yummy.

Today I was superwoman! More

Free Write: Pain

I often turn to writing when I’m upset. I don’t like using this blog as a platform for heralding my woes, so I try to keep the negative stuff in check. Tonight, though, I’m just going to write.

Tonight I am in pain. I wasn’t sure I’d even be able to type this out because my arms and hands were hurting so badly a few minutes ago. I have an icky headache. I’m used to having headaches, always seem to have one in fact, but sometimes they are really bothersome. I’m nauseated for unknown reasons. I feel like someone beat me up and left me for dead. One of my favorite books, Elantris by Brandon Sanderson, features a state of living in which you the characters become un-dead, for lack of a better phrase. One morning they wake up, only to discover that their hair has fallen out and their skin is blotchy and sick looking. While in this state, any damage done to their bodies remains, unhealed, indefinitely. They feel the pain from every cut, bruise, or break – it never goes away, just drives them insane. I think Brandon Sanderson was describing fibromyalgia (he just didn’t realize it), because that’s how I feel so often. More

Chronic Pain Harms the Brain

Chronic Pain Harms the Brain.

via Chronic Pain Harms the Brain.

An Experiment

I’m currently experimenting with the medicine I take for fibro. (metaxalone). Normally I would take it twice a day, but I’m on my second day of not taking any at all. I want to see how far I can go without taking any (but with the help of Tylenol), and then see if taking it once a day will be enough to keep me on my feet. Why? Because I hate feeling drugged up, and lately that’s what the medicine has been doing to me. This afternoon I was able to work in the kitchen for a little bit. I felt awake and alive, even though I was in pain. I’m really hoping I can find some sort of balance between alertness and controlling the pain, because I really want to live my life.

P.S. Lest you worry, my medicine isn’t one of those that stopping cold turkey will kill you or anything. I’ve done similar things before (usually because I forget my medicine and then went on a trip or the pharmacy couldn’t refill my prescription in time), and I know enough about what I’m doing that this isn’t reckless. I am not suggesting other people go out and do the same, or anything like that. Gotta add that disclaimer to cover my own back, I guess, in this day and age.

Medicine

Since my diagnosis of fibromyalgia in January of 2011, I’ve tried a multitude of medicines and supplements. The prescription that finally worked was Metaxalone, the generic form of a pain reliever and muscle relaxer called Skelaxin. Without it, my body turns into a knotted ball of pain. The side effect of taking a muscle relaxer is that it can make me drowsy. It didn’t use to be as much of a problem, but now I’ve really began noticing how much the medicine slows me up once it really kicks in. It’s been my dream to go prescription free and use all natural methods to treat my fibro., but seeing an herbalist is at least $100, plus whatever treatments they prescribe, all without the help of insurance. For someone who’s living paycheck to paycheck (totally relying on my partner to support me), that’s just not in budget. Perhaps if I receive disability aid, then I’ll be able to afford an herbalist’s help.

This all came to mind because of how things worked out today. I was feeling pretty good, was busy cleaning up the kitchen, and then my medicine kicked in and I had to go sit down because I felt so out of it. I really think the side effect is getting stronger with time, and perhaps the medicine is becoming less effective at treating my pain.

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