KISSFAN1

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Feel Like My Body is Betraying Me

Saturday, April 04, 2015

I don't blog much anymore due to lack of energy and time. For the longest time I was so proud of my progress over the years with a healthier lifestyle and feeling like after my surgery that life was looking up and I'd be free to do the things that held me back for so long (health issues, emotional issues from my past that I have worked on, etc.). I lost 50 pounds, started working out at the gym, and ate the healthiest I ever have in my life. I have maintained and kept up with the healthy lifestyle instead of losing the weight and rebounding back to an unhealthy diet as I have done in the past.

I couldn't understand why it was taking me so long to recover from my surgery although I realized that it took up to a year, so I was patient and paced myself and continued my healthy lifestyle. I talked with other ladies who had the same surgery and they seemed to be improving much faster than I was and didn't have the issues I did (back spasms, extreme fatigue, etc.). Still, I realized that every one is different and we all recover at a different pace than others and I was just one that recovered slowly.

Fast forward to my daughter complaining of back/neck/shoulder pain and after taking her to our regular doctor, we got a referral to a juvenile rheumatologist. After looking at her medical records and performing different tests and examinations of her, she was diagnosed with a chronic condition that immediately confirmed that I also had the same condition (it is inherited) as did my son. Once I started diligent research on this syndrome (and still continuing that process) the more I realize how so many strange issues I've had over the years with my body were most probably due to this syndrome, Ehlers-Danlos Syndrome (hypermobility syndrome).

It completely explains why with as little as cleaning my house, shopping for groceries, etc., have caused me to feel like I have ran a marathon and felt completely exhausted. It explains why I have so many muscle spasms, pain, etc. I thought it was strange that my daughter and I had the same exact pains and thought perhaps it was due to heavy breasts (I had a breast reduction years ago because I thought all my pain was due to that, but it didn't change and I still suffered from the same pain although there was no longer the indentions on my shoulders from my bra straps afterwards).

I have had a very bad run recently as my family had to call 911 and rush me to the ER due to a very scary episode that unfortunately happened twice since I had a barium swallow done. It happened during that procedure and then a week later (this past Monday) that wouldn't end until I was sedated. I had no control of my arms or legs and they moved non-stop back and forth, up and down, etc.

Because my joints easily sublux, I was so afraid because of the lack of body control and also because I have very loose shoulders due to this syndrome. I can feel them move just by reaching for objects, drying my hair, putting a shirt on over my head, etc. My breathing was involved as well to the point I was fighting to not pass out.

This event lasted non-stop for an hour until I was given sedatives in the ER. My nerves feel like they are firing constantly and I'm afraid of it happening again. I've had numerous x-rays recently which is scary due to the radiation involved (no lead vest used since they were taken on my spine and chest) and because this syndrome involves connective tissue (80% of our bodies is made up of connective tissue) my entire body is pretty much involved.

I have had episodes recently of my legs almost giving out from under me, my muscles spasm, my joints sublux (had no clue that it was abnormal as I had it all my life and thought every one was like that, LOL) and now my nerves are involved since my muscles have to work much harder to support my lax joints/tendons and tend to spasm and get stiff. This muscle stiffness then causes my nerves to be compressed and I end up with nerve pain, tingling, etc.

I'm trying to get help and am waiting for an appt. with a rheumatologist, my regular doctor (who is out of town) and hopefully a referral to a neurologist. I have had moments of guilt that this is passed on to my children and after contacting my father and sister (whom I've been estranged with for many years) discovered that they also have the same syndrome.

My son's knees have dislocated several times just by simple running or walking (as has my father's), my sister has dislocated her hips and knees, so we definitely have a family history.

Some people don't experience pain, but unfortunately, our particular type does.

I'm especially afraid that I could possibly be experiencing craniocervical instability, although I have no medical proof of that yet. My neck, skull, and throat muscles hurt constantly and with these weird involuntary, violent arm and leg flapping happening twice within a week's time, after talking with several people online, all said they experienced this and it was due to that. This is common with people who have Ehler's Danlos Syndrome since our ligaments/joints are very loose, which also occurs in the spine.

I have some of these symptoms, and that's scaring me to death.









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