Monday, November 7, 2011

November 7th, 2011 Vacation with my hubby

My husband and I spent three days away together for a long weekend.  Every aspect of our little get away was affected by my RSD.  Two days before we left, I ran my good foot into an open glass door .  For a normal person, this would have hurt for a few hours.  For me, it has caused a flare in my RSD that has affected me for the past 6 days.

I have had an off and on again headache since last Tueday.  My right foot has been swollen and painful since and my full body burning.  It impacted our vacation because I really couldn't enjoy myself.  Like many of us with RSD, I didn't want to spoil this get away with my husband, so I did my best to carry on. 

I continue to fight my health insurance company over medications to help with my pain.  I went on vacation with my husband without pain medicatons since the insurance company has decided to fight me on the medications that my doctor has prescribed.  This is also an issue for so many of us.  The doctor sets a plan of treatment and then the insurance company shuts it down.  Never mind that in many instances the treatment is actually cost effective because it decreases hospitalizations.  The insurance companies don't want to set a president by approving a treatment.  They hope that we won't fight for our treatments.  We battle pain, misinformation and so many other things, why should we have to fight for our treatments as well?

Right now, I am trying to decide if I should set up another Ketamine treatment.  I haven't had one in two years. I have tried to find a local doctor to administer it so that I don't have to travel to PA for the treatments, but there is no one locally who will accept insurance.  Many people with RSD have to pay for their treatments out of pocket.  Many of us are on SSD or WC and paying out of pocket for these treatments is impossible or at best a strain on our families' finances.

It is 4:15 am and I haven't been able to fall asleep yet.  Due to pain and sleep disorders, many people with RSD don't get the restorative sleep that we need.  Today's information for RSD awareness month is about sleep:

RSD And Sleep Disorders

Are Sleep Disorders Common In People Who Have RSD?
--By R. Norman Harden, MD, Director, Center for Pain Studies, Addison Chair
Rehabilitation Institute of Chicago, Chicago, Illinois

Yes, I would say that at least 75% of people with RSD/CRPS, possibly as many as 90%,
have some sort of sleep disorder. Pain is, of course, the main culprit for those who have
difficulty falling asleep and for those who have difficulty staying asleep. At bedtime, the
mind starts to relax, and since there are no distractions the mind naturally focuses on pain.
Early morning awakening may occur if a person rolls onto the affected limb and is
awakened by pain.

Treating the sleep disorder is critical, not only because people who sleep well feel better,
have more energy, and are in a better mood, but sleep is critical to the body's
recuperation, repair and healing, especially with chronic disease. Repair and some parts of
the recuperation process occur only during sleep; for instance, 90% of Somatamedin C, a
hormone that is critical in maintaining nerve and muscle health, is produced in deepest
stages of sleep. If you don't make Somatamedin C, you are not going to repair tissues
from normal wear and tear, which in turn causes more pain. It is a vicious circle. People
in chronic pain don't get into these deep stages of sleep so essential to healing, and
Somatomedin C is only one example of critical neuroendocrine products produced during

We treat sleep disorders very aggressively. and try to use agents that hit "2 or 3 birds with
one stone." For example, some of the antidepressant drugs (such as nortriptaline or
doxepine) are actually great analgesics. The brain stem (where you produce several
critical neurochemicals such as serotonin and norepinephrine. coordinates pain, sleep, and
mood. These "antidepresseant agents" modulate serotonin and norepinephrine, critically
important for quality and quantity of sleep, normal mood and pain modulation. Since you
only have to take these agents once a day you can use them as anti-insomnia agents as
well as analgesics to help initiate sleep, prolong it, improve the quality of sleep, and relieve
the pain.
--The Stages Of Sleep--
There are five stages of sleep that cycle over and over again during a single night: stages
1, 2, 3, 4 and REM (rapid eye movement).Stages 1 through 4 are also known as non-rapid
eye movement sleep (NREM). Approximately 50% of our sleeping time is spent in stage 2
and 20% in REM. A complete sleep cycle, from the beginning of stage 1 to the end of
REM, usually takes about 90 minutes. An adult normally sleeps more than 2 hours a night
in REM.
Stage 1: a light sleep during which the muscles begin to relax and a person can be easily
Stage 2: brain activity slows down and eye movement stops.
Stages 3 and 4: deep sleep, during which all eye and muscle movement ceases. It can be
difficult to wake a person during deep sleep. Stage 3 is characterized by very slow brain
waves (delta waves), interspersed with small, quick waves. In stage 4, the brain waves
are all delta waves.
REM: It is during REM sleep that people dream. The muscles of the body stiffen, the eyes
move, the heart rate increases, breathing becomes more rapid and irregular, and the blood
pressure rises.

More Information On Sleep Disorders Available At:


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