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

Tuesday, December 27, 2011

A new normal or a just big chicken?

For those of you who have been reading my blog for awhile, you already know about my neck pain and headaches, which started a little over two years ago.  Somedays I'm in bed all day with ice packs on my neck, but the last couple of weeks I haven't had to.  I was given an appointment with a neurosurgeon by my rheumy, but I don't want to see a surgeon until I have seen another doctor.  I am afraid his answer would be surgery.  I have absolutely no interest in going under the knife.  (Just so I'm clear, I'm not saying that people who have surgery want to, unless it is elective, such as a breast augmentation.)  Besides, I just don't think the place to start is a neurosurgeon, or surgeon of any kind.

I was going to make an appointment with another specialist, whose specialty I can't remember at the moment (is it called an orthopedist maybe?).  Instead I decided not to call.  I think perhaps my neck pain may be fibro pain and that there isn't anything the doctor could do.  It is really hard on me to ride in the car all the way to University Hospital, so I try and trim my doctor appointments down to only the ones I really, really need.  Read more about fibro and neck pain here.

Of course there is always the chance with EDS it is something more serious.  I hope not, though, and I have a lucky feeling.  Read more about EDS and neck pain here.

So, my idea is that my neck pain is a "new normal" for me and I'd better just get used to it.  I think I already am becoming used to it because I don't have to think about not turning my head anymore, I just don't do it on instinct.  It's been a long time since I've been able to to turn my head all the way, and I do miss it.  My neck pops, clunks, and grinds, but I think that happens with fibro, too.  I'm not one hundred percent sure on that one, though.  My collarbone popped three times in the last three days when I was coughing.  It is very disconcerting!  I think that this is also, normal, though, for anyone, not just for spoonies.

If it is fibro, there is no reason to go to see another specialist.  I do need to see my cardiologist again, now that I know I have POTS (Postural Othrostatic Tachycardia Syndrome).  I have a lot of POTS symptoms still, but rarely actually faint.  The other symptoms are bad enough for me to definitely need treatment.  They really interfere with my life.  I think I definitely need to talk to my cardiologist.  I need to go see the people that make foot orthodics, too.  I have to have some made, and I already have the script for it.  I think Medicare will pay for it.  I hope it gets rid of some of my foot pain and helps align my ankles, knees, and hips, thus taking weight off it it.

I had a nice Christmas.  DH and I spent most of the day snuggling each other and the kitties.  I couldn't have asked for a better present!  This Christmas it was just our family; DH, me, and our three furbabies Sterling, Niki, and Katya.  I can't believe how lucky I am to have DH and our babies.  I also got some gifts from my pen pals, Laura, Rhonda, and Jo.  I made some small gifts for my friends and will be sending them out along with their late Christmas cards, in January.  

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