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posted : Aug 23, 2018

S.O.S. My personal experiences. I am one among many millions, around the world.

chronic, irreversible autoimmune nerve disorder known by dual names as RSD (Reflex Sympathetic Dystrophy) and CRPS (Complex Regional Pain Syndrome)

 By: Marcia Wallace for Georgia Weekly Post.

 

  I suffer from a chronic, irreversible autoimmune nerve disorder known by dual names as RSD (Reflex Sympathetic Dystrophy) and CRPS (Complex Regional Pain Syndrome) which involves inflammation and a huge number of coexisting symptoms, many of which are incredibly difficult to deal with. 

 

This is a horribly painful and debilitating condition that has devastated and disrupted all areas of my life- physically, mentally, financially, and spiritually.  My family life, my church and social life, and daily routines have all been severely affected.  There is no cure and remission varies from person to person depending on how early a diagnosis is made. 

 

The origins of my case are unknown- but it is believed that the source is usually due to an injury to a limb- or surgeries- not confined to a limb (inflammation from a surgery of any kind can "travel" to a limb.) I did long ago have a foot injury, and I have had several surgeries- three on one foot, any several others for other conditions.  Unfortunately, due to ignorance, lack of awareness and research funding in the medical and political communities, I lived for years with the pain and wrong diagnoses until 2014 (a brilliant Neurologist immediately spotted what was wrong). 

 

By then the disease was too far advanced to expect a remission of any kind.  My condition is centered in both feet and legs.  Treatments are limited and highly expensive as insurance companies do not or will not recognize this disease in full.  Millions of people around the world are suffering needlessly.

 

My life on a daily basis consists of stabbing, burning pain (imagine having a horrible sunburn- having hot boiling water thrown in, and then set on fire), increased sensitivity to all stimuli, motor disturbances, sleep disruption, depression, exhaustion, memory loss, and all of the major body systems are directly affected as the disease progresses, including skin, bones, teeth, hair and nails. 

 

RSD/CRPS is known as "the Suicide Disease" and only those who suffer from its relentless assault can fully understand this.  It has been documented that pain levels can far exceed all others except childbirth and amputation.  A "good day" in my life is still filled with pain and with every step I take. 

 

When "flares" come, the pain is unbearable.  RSD sufferers like myself cannot be confined to just one doctor because of the complexity and the effects on the entire body. 

 

I have seen every type doctor and professional in most all fields of expertise from vascular, to neurology, gastroenterology, heart, bones, pulmonary, physical therapy, rheumatology, chiropractic, naturopaths, foot and ankle specialists, nutrition, pain management, and even acupuncture. 

 

I have all too often been met with "there is nothing I can do", "there is no cure", 'you do know it is only going to get worse", and even tears in their eyes when they see my feet and legs and the deformity- and the progression of swelling and discoloration right before their eyes.

 

Pain increases with sitting for more than 10 minutes, walking more than a few feet, and I cannot stand up (for more than a minute at most) without the aid of a wheelchair, cane or walker. 

 

In all these scenarios swelling is involved and this causes the pain to escalate.  The only sources of relief I have are to stay bed bound with feet propped, and the use of pain medications- "pain management" they call it.  I am now mostly housebound and can no longer do most activities that mean life and joy to me, even the simplest tasks can be exhausting. 

 

Once a vibrant person fully engaged with the world, I am a shell of my former self.  Because body temperature fluctuates wildly, heat or cold can set off swelling, and pain, and discoloration of skin- even wounds (two years ago, I underwent nearly 100 hyperbaric treatments due to wounds that would not heal any other way. 5 days a week, 2 hours a day, every week for months).  Because the bones in my feet are now virtually destroyed, wearing shoes or even socks always leads to pain.

 

This disease is a nightmare from which I cannot seem to awake.  The all too often wakening from burning, agonizing, intense pain never goes away long enough to give me a chance to rest.  Every day I awake, I know that the first step i take- the minute my feet hit the floor- I am going to hurt- and wonder- "is this the day that one of my feet snaps in two like a fragile twig?"  It remains a Trial by Fire.  I'm not asking for much- just the chance to live out my years with grace and dignity and as much joy as possible.  Only when the world of movers and shakers in the medical profession and the political world take note (it can happen to anyone- even them) and hear our pleas for attention, then will I know that people who come after I am gone will not suffer needlessly as I have.

 

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