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, May 29, 2012

Will there ever be some relief?

I'm going to turn 31 on June 12th, but getting older doesn't bother me.  I have 31 years of wisdom, and I'm proud of that.  However, I've also suffered pain for the majority of those 31 years and there is no relief in sight. My rheumatologist told me that she will not send me to a pain doctor because my pain is too bad and too spread out for a pain doctor to help me.  The internist I saw said the same thing, but about EDS--that I have too much pain and in too many places for a pain doctor to be able to treat.  Does that make any freakin' sense at all?  No, it doesn't.  My rheumy also still thinks that fibromyalgia is my biggest problem, not the EDS.  She's nice enough, but she is an idiot.  She also thinks that it is impossible for the same person to have fibromyalgia and ME/CFS (chronic fatigue syndrome).  That is just crazy, as many, many people have both.  I have never been evaluated for ME/CFS though I suspect I have it.  Doctors refuse to evaluate me for it, but since there aren't any treatments for it, I don't think it matters much if I have a diagnosis or not.

Swallowed in intense and fiery pain

I have been depressed lately, and each day is worse than the day before.  I know that I am going to spend my whole life in pain, until it eventually cripples me.  Lately there have been days I can't type at all because of hand/fingers and wrist pain.  My daily headaches make it hard to do my cross-stitching, and my dizziness from POTS makes it hard to focus on the tiny holes in the Aida cloth (cross-stitch cloth).  It is very depressing.

I saw an internist recently, to try to find a Primary Care Pysician (PCP).  The doctor was extremely rude and in so many words told me I was stupid and selfish for wanting a baby when I have EDS.  I talked with my gyno the week before (he is actually a ob/gyn), and while he told me the risks associated with an EDS pregnancy, he wanted to assure me I can have a baby if I choose to.  The internist was so rude and said so many hurtful things I left the office just in time before I burst into tears.  I cried for half an hour afterwards.  People said I should report him, but I just want the experience over and to forget it.

It just really depresses me that my quality of life is sliding further and further downhill as my pain levels continue to increase.  At what point do I go into a wheelchair?  I haven't found a doctor who understands, or even cares how bad my pain is.

The pain is constant, constant, constant.  The pain is overwhelming, and I feel swallowed alive in it.  

1 comment:

  1. Amy,
    I don't understand why they won't send you to a pain specialist, due to you being in too much pain. That's like saying you shouldn't send someone with an extra finger to a hand specialist. Nonsense. It's their job, what they've been trained for. You're exactly who they should be treating.

    I really hope you find something beneficial for your pain soon. Nobody should have to suffer so much.

    Sending happy thoughts your way. And spoons. Sounds like you need some of them, too.



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