My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Wednesday, April 6, 2011

Another stressful, pain filled day

Today has been a really achy day, with heaviness in my legs (more so than usual) and the sensation of swelling, though they don't look swollen.  The dull ache ranges from "I really, really hurt!" to "I'm biting my lip to try to not scream I hurt so bad."  I hate days like these, but my legs have been giving me problems for the last three months.  It started gradually, so I didn't really notice it until it was already giving me a lot of pain and heaviness in my legs.  I am losing weight (eight pounds lost so far) and I hope that will help my leg pain/heaviness.  It's slow going, though.  I've been working on it since January.  I haven't been weighed in a few weeks because my scale needs a battery.  I've been going by doctor's scales because of that, but I'd like to be able to weigh myself at home more often.

Today was an especially stressful day, and tomorrow's forecast is more of the same.  I have to be up early tomorrow for my physical therapist. I am going to try to remember to ask her about the heaviness in my legs.

I talked to a friend, a fellow EDSer, on facebook last night.  We decided to be each other's cheerleaders to get to the doctor.  When you have to spend what seems like half your life at the doctor's office you start really hating going to the doctor, if you didn't hate it enough before.  My first goal is to call my cardiologist and actually get my butt to University Hospital so that I can get the results of my TTT (Tilt Table Test) and my electrocardiograph.  I drew a string around my finger once, but forgot why it was there.  I hope that if I blog tomorrow and look back at today's blog I can remember to call my cardiologist.  Hopefully nothing is wrong that I didn't already know about.  I have a good feeling, I think everything is normal.  I don't think I have Dysautonomia, though Dr. W seems to think that from my symptoms I do.  I just have a feeling everything is okay.

I joined a site called Chiari - Online Support Group for Patients Affected with Chiari the other day.  Everyone on the site has been so nice and supportive.  I would like an MRI to be tested for Chiari but first I have to find a competent neurologist, because my current one certainly isn't in my opinion.  He's a nice guy until he runs out of patience, but I don't feel that he knows very much--and his patience is pretty short.

It's past one o'clock in the morning, so I think I'm going to go to bed, especially since I have PT tomorrow morning.  Yawn!

1 comment:

  1. It's good to hear you are losing weight... If it is taking a long time that is actually a good thing, too fast and you'll just put it straight back on! It will definitely help your legs to have less weight on them, I find that it makes my hips fall out so much more when I am heavier, when I'm sitting or lying. Which in turn makes my knees fall out, etc. You know how it goes.
    Good luck with PT! Don't overdo it, even though it is so tempting, you don't want to go backwards!
    Di King
    (my fb account is different to my google obviously ;p )


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