Amy's 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

Friday, May 13, 2011

Nightmares and neck pain

I had a dream last night I was at my rheumatologist's office crying.  I was in intense pain and begging my doctor to help me.  I asked her to do anything to stop the pain.  I told her she could knock me out, crank my neck, cut me open, I didn't care, just make the pain stop.  She said she couldn't do anything.  I begged her to send me to a doctor who could.  I asked her if I needed to see a doctor about possible Chiari or if I have a neck problem [that my physical therapist couldn't feel].  I told her to send me anywhere, do anything, please make the pain stop.  She just kept repeating over and over that she couldn't do anything.

Nah, the doctor in my dream wasn't a zombie, but I thought this picture was more awesome than regular  doctor clipart :-)
It's amazing how sometimes our dreams parallel our lives.  Obviously during that dream my neck was in severe pain.  I have been going to bed between 8:00 pm and 10:00 pm most nights because I can't hold my head up any longer, my neck just hurts too darn bad.  I used to go to bed between midnight and 2:00 am, unless DH had a seizure, then I go to bed and read next to him while he sleeps afterwards.  This intense neck pain reappeared a week to ten days ago.  My physical therapist, over many appointments, had reduced the number of myofascial trigger points in my neck and thus a lot of neck pain.  I've been out of physical therapy for only two weeks, so it didn't take long for the neck pain to come back.  Each day it's been getting a little worse, and today, because it's a rainy day, severe neck pain started after being up only a few hours.  I wonder, is the neck pain stemming from fibromyalgia, Ehlers-Danlos, or possible Chiari?  I think it matters on what the pain is from.  If it's fibro pain then, okay, I have to just deal with it.  If it's EDS pain, do I have something out of place? If it's possible Chiari, well...I'd like to know.  Would myofascial trigger points develop from Chiari symptoms?  I know they do on EDS from the way our loose joints fit, and don't fit, together.  Myofascial trigger points are also a common with fibromyalgia.  So it does matter what causes the severe neck pain, a lot.

Fresh ginger root tea my DH made me

This week DH and I have had no appointments to go to.  It's been great not going to so many doctor visits.  DH brought up a good point on something.  We are both disabled and cannot work full-time, so why are we expected to be able to go to doctor visits almost daily?  It's just a rhetorical question, I don't need an answer.  I know that we have to go to doctors, I just wish I didn't have to, especially so often.  I'm envious of the women who do the type of work I'd like to do, but not insanely jealous.  I have a purpose, and right now that is to be a wife of my wonderful, awesome DH, an advocate for myself, a kitty mommy, an advocate for awareness for fibromyalgia, epilepsy, and Ehlers-Danlos Syndrome, a caretaker to my DH [and he is my caretaker], a friend, a sister-in-law, a pen pal, as well as having a spiritual purpose.  My biological clock and I are hoping DH and I became a Mommy and Daddy soon, but we aren't trying for that (yet!).  We have to wait until my health is under control and our finances are better.  I doubt we'd be able to adopt (because we are both on disability) and we both are in fuzzy areas on whether we are even going to be able to make a baby, but I know in my hear and soul that we will be a Mommy and Daddy.   I've known that since the second week DH and I were together.  We haven't spent a night apart since our first kiss, but that's another story for another time.  I'd like to tell you the story of us first meeting sometime.  

I think I've mentioned that I had to miss my cardiology appointment.  It's a long story, but the important thing is that I was genuinely trying to make it to the appointment and had no intention of canceling.  I rescheduled for the beginning of next month when we will have some money but I decided I can't keep putting off checking out about Chiari forever.  I did have a discussion with DH about it and we argued, him worried and seemingly angry at the time, and me in tears and feeling unheard.  We worked things out, though, but I'm not sure where we really stand on this.  He said he was never angry, but he's so worried about my many medical problems and is so anxious because he can't "fix" any of them.  I understand that because that is the way I feel about his epilepsy.  I'm not sure what the next step is.  I had to see my quack neuro for meds for my epilepsy, as did DH, but he told me not to mention Chiari to him...well, because he's a quack!  I doubt he even knows what Chiari is.  When I told him that I had EDS he didn't seem to believe me and wanted me to prove it to him.  It hurts my joints and does damage to them to keep "proving it" to doctors.  He doesn't even no anything about EDS and he'd never heard of it before, but still wanted me to "perform circus tricks."

I'm only up now temporarily, I've been in bed part of the day with ice on my neck, unable to move without severe neck pain.  I finally fell asleep after reading for awhile, but I don't know how long I slept.  It felt like about 20 minutes, but I could be wrong.  DH is making me some more ginger tea to drink.  I am out of Aspercreme and generic Bio Freeze so I was so thankful when I found an envelope of a sample of real Biofreeze for myself.  It was the first time I'd used the real thing, instead of the generic, though they cost the same.  (Biofreeze brand isn't at Wal-Mart.)  It pays off spending time ordering free samples.  The Biofreeze helped some, but not too much.  Unfortunately I had to wait for quite awhile after putting it on until I could put my ice packs on my neck.  I had a heating blanket on every thing else to help relax my muscles which are really stiff and hurt from the rain.  My joints hurt, too, but not that much worse than normal.  The neck pain is extremely painful, though.  Did I mention that already? 


  1. I found your Blog really interesting. Fatigue can be caused by many reasons, however, there are some basic things that you can do to try to get rid of chronic fatigue.

  2. Thanx for ur post. but plzz tell me, which 1 is the best equipment for Cervical Pain nd which type of Cervical Support we can use for Cervical pain ??

  3. This is a great post about neck pain. Thank for share here! my neck pain pillow review


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