Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Sunday, September 19, 2010

Shoulder Problems and Questions for Myself

I've been offline for awhile and probably will be again.  I just wanted to mention that.

Okay, so I've noticed that I have now trained my mind to subconsciously limit the range of motion in my shoulders.  Is that a good thing or a bad thing?  The way I look at it, I am not injuring or subluxating my shoulders all the time anymore (now it's just daily, not 7 times a day!) but I might eventually lose muscle in my shoulders.  DH and I discussed it and he thinks I should use full range of motion every couple of days.  The problem I have with his solution is that once every couple days will be enough to keep my shoulders inflamed and in really bad pain all of the time.  It takes three days for my shoulders to feel better again after using full range of motion once.  It isn't that simple, though, because once I subluxate it the pain increases and the subluxations increase.  More subluxations will eventually lead to shoulder dislocations.

I need a guidebook to this EDS thing!

Sunday, September 5, 2010

Another day, another day...always another day spent in pain

I woke up early this morning at 4:00 am.  I immediately realized from my pain levels that I forgot to take my nighttime meds.  I fell back asleep and then Jim and I both woke up around 8:00 am.  We were discussing the day ahead of us and theorizing about how Niki could have gotten out last night, when I stood up to straighten out the sheets.  (Yup, I sometimes even make the bed while Jim is laying in it.)  When I stood up my right hip subluxated.  It felt closer to dislocating than it ever has before.  I haven't the slightest idea what to do when it finally does dislocate.  I still can't get my subluxated ankles back in by myself.

So my start to the day wasn't that great.  I'm in a whole lot of pain today and can't even hobble a few feet without my cane.  Because we still have company (it's been a month!) I am suffering an increase in my anxiety levels.  Higher anxiety levels and increased pain levels lead  to depression.  Most of yesterday I stayed in the bedroom.  The bedroom is my safe place; no one is allowed in but myself and my DH.  It hurts sitting on the bed rather than in a chair or on the couch.  My back has been really acting up lately, too.

Poor Sterling!  I just had to jump up and go to him because in his sleep he rolled off the dresser and onto the floor.  He didn't land on his feet, either.  Contrary to what most people believe cats don't always land on their feet.  A cat has to be a certain height up before he can relax his muscles and do his cat-landing-on-feet thing he does.

Well I guess I'll end this up here.  Hope everyone is enjoying their weekend.

Saturday, September 4, 2010

My head is spinning with questions

I'm frustrated.  My neurologist told me he thought I had a mini-stroke (TIA) but ran no tests.  He just told me to take an aspirin a day and asked me to show him my EDS.  Actually he didn't ask he grabbed my hand and tried putting it backwards.  I don't like people touching me so I took my hand away and bent it backwards.  It was a painful day anyway and that caused even more pain.  I was kinda pissed that he didn't seem to believe me.  He'd never heard of EDS, either.  How could he not believe me when he didn't even know what EDS is?

Because he never ran any tests I have no idea whether or not I really had a mini-stroke or not.  So I have to live on the assumption that I did.  That's scary!  I don't have high cholesterol and I don't have high blood pressure.  I don't know whether a mini-stroke can happen as a vascular part of EDS or not.  I know that all types of EDS can have vascular complications, though.  Doctor what's-his-face said I have H-EDS, while Dr. K. said he thought I have V-EDS.  Of course Dr. K is a rheumy not a geneticist.  I do know that he's seen people with V-EDS, because I was referred by a girl on Facebook with V-EDS that he diagnosed.  He still sent both that girl and myself to see a geneticist who specializes in connective tissue disorders.  He said that just because I haven't had vascular complications yet I could still have V-EDS.  Or I guess it is always possible to have a mixture of different types, many of my EDS friends do.  Of course our car is broke down so I missed the EDS specialist's appointment four or five hours away.  I just took a really long sigh!

I thought stroke was a symptom of vascular components of EDS but when I asked my EDS friends they didn't think so.  I know that my friends aren't doctors but most of us know more about EDS than our doctors do.  Then when I read Dani's story she said that she's had strokes as a complication of EDS.  So I'm confused!  Plus, like I said for all I know I may not have had a mini-stroke because he did no testing.  Then again I've also read that you sometimes can't test for a mini-stroke, especially if it did not permanent damage.

I don't know what to believe.  I think another long sigh is in order.

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