A 26 Year Old Spoonie Shares Her Story (Part 2)

A 26 Yr Old Spoonie Shares Her Story Part 2

To view the beginning of this Spoonie story click here.

20 years of failed allergy injections are also now behind me; new allergies were diagnosed, but I was able to stop my injections.

I actually feel better OFF the injections than I did when I had them.

Go figure! Despite increased medical costs in this state, moving to Florida was the best decision I have ever made.

As far as my diagnoses go, I have quite a few.

I have fairly substantial scoliosis, which despite all the doctors telling me should cause no pain, does. The discs in my spine at age 20 were so worn, my back was equal to that of a 50 year old. The scoliosis is now in my neck, too. Having scoliosis has gifted me muscle spasms in my back and neck. My lower left back muscle next to my worst curvature has been in constant strong spasm since January of 2014. No muscle relaxant, acupuncture, massage, device, etc. has managed to stop the spasm. A similar issue has been in my right shoulder, which has chronic bursitis and tendinitis, along with muscle spasms. Both spasm locations are extremely painful, and no doctor or specialist has been able to get me any relief.

By recommendation of my orthopedist who noticed my hypermobility and unique build, I saw a genetic counselor at age 17 or 19 (I never remember which) who told me the only explanation she could find for all my life-long problems was Ehlers Danlos Syndrome – Hypermobility (then called Type 3). I have, in the past year, realized through reading old paperwork, that it was not an official diagnosis and am still searching for answers. The counselor also said I seemingly had crossovers to Classical Type, because of my stretchy smooth skin that bruises easily. She noted many of my features, including my concave chest, long fingers and toes, too-long arms, and protruding eyes, were signs of Marfan’s Syndrome.

My current and past two primary doctors suspect I have Fibromyalgia, the only explanation they can come up with for why my body always feels like it’s on fire or being electrocuted. I’ve settled on taking Lyrica each day, and the nerve misfirings appear to have calmed down considerably. My right shoulder still gets “spidery”, with nerves along my shoulder blade making it feel like I have little spiders crawling up and down my bones.

In the past year, I got my thyroid tested (finally!), and discovered I have slight thyroid disease. So, now I am on medication for that, too.

I have hypoglycemia, and have passed out a couple times from having low blood sugar. It’s scary when I get hungry. It’s like that Snickers commercial where the person starts going crazy because they are hungry, but in addition to becoming cranky, I shake, get sweaty, get super dizzy, and then the room starts getting stars before it fades into black. There’s no treatment for this, so I have to ensure I have snacks with me at all times, and eat something sugary every 3 hours.

I don’t absorb vitamins properly, and am always very low in Vitamin D, though since moving to the Sunshine State, my levels are out of the “danger zone” and now in the deficient zone.

I have a slow tiny leak in my heart, which the cardiologist says is not a concern right now, and probably won’t be ever, but that’s also what the doctors said about the possibilities of developing pain from Ehlers Danlos Syndrome and scoliosis. I get an echocardiogram every year to monitor my heart. In addition to this, I may have Postural Orthostatic Tachycardia Syndrome (POTS). I saw a cardiologist who claimed every thin person could be diagnosed with POTS, so he refused to actually label my (and evidently all other thin patients of his) irregular heart rate, dizziness, and lightheadedness/heart racing when standing up as POTS.

Follow the rest of this Spoonie story here.

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  1. The Zippy Zebra A 26 Year Old Spoonie Shares Her Story — May 22, 2016 @ 4:31 pm

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