Complex Regional Pain Syndrome;

Reflex Sympathetic Dystrophy

 

Complex Regional Pain Syndrome (CRPS) and Reflex Sympathetic Dystrophy are often argued to be separate syndromes. The Mayo Clinic says CRPS was formerly known as Reflex Sympathetic Dystrophy while some doctors and patients insist they are separate. Name aside, millions of Americans suffer from CRPS/RSD.

 

Whatever name it is given, the effects on the body, mind, and soul of those stricken with it are undeniable.

 

Highly debated except by those who have it and the doctors who believe in and treat it, because of the lack of tests to confirm it, certain physicians deny its existence completely. Don't tell a patient with it that unless you want to out-run all their relatives.

 

It can involve any part of the body and the worst part is that it travels, horizontally or vertically to other parts of the body. In the final, still-debated Stage IV, it can affect the immune system. People have died from it, giving weight to the debate to the side that says Stage IV does exist.

 

Early Diagnosis Is Critical

 

Early diagnosis and treatment is critical. Unfortunately, the systems in place to help injured people -- workers compensation and social security -- do not move quickly. Physical therapy quickly begun might alleviate or stop the progression of the disease, but under those systems the initial treatment is often nothing and so the disease marches on to Stage II and III.

 

RSD usually starts with an injury or surgery. Pain disproportionate to the injury is one symptom. Others are: excessive burning as if the skin is on fire, sensitivity to cold, excessive sweating, changes of temperature in the skin, changes of color in the skin from bluish to multi-colored blotches as if recent severe bruising took place, swelling, blotching, skin ulcers in later stages, rash to the point of disfigurement, extreme tenderness to touch, muscle spasms, blurring of vision, impairment of hearing.

 

"The sympathetic nervous system is intermingled and connected through sympathetic ganglia which are on each side of the vertebrae from lower cervical spine region to the tail bone. This chain of sympathetic connections causes the spread of RSD to symptoms and signs both across the midline to the opposite side (from one hand or foot to the other) and vertically up and down the spine.

 

"As a result, the patient may have RSD as the result of a knee injury and yet may develop stimulation and abnormal function of the sympathetic system causing constriction of the blood vessels to the brain. When the blood vessels are constricted in the distribution of vertebral arteries in the cervical spine and in the distribution of the blood vessels providing circulation for the hearing center and brainstem, the patient develops attacks of dizziness, trouble focusing with the eyes and buzzing in the ears." H. Hooshman, M.D. P.A., Neurological Associates Pain Management Center.

 

The Mayo Clinic describes CRPS as formerly known as RSD, a regional, post-traumatic, neuropathic pain problem that most often affects one or more limbs. They, like most physicians knowledgeable about CRPS/RSD advise early diagnosis with physical therapy being the cornerstone and first-line treatment to CRPS and to which mild cases respond.

 

Mild to moderate cases may require anticonvulsants and antidepressants while opioids should be added if those medications to do not provide sufficient analgesia to allow the patient to participate in physical therapy.

 

Patients with moderate to severe pain and/or sympathetic dysfunction require regional anesthetic blockade to participate in physical therapy. Mayo Clinic further says some patients develop such severe pain that they develop refractory, chronic pain requiring multi-disciplinary treatment, including physical therapy, psychological support, and pain-relieving measures. Pain-relieving measures include medications, sympathetic/somatic blockade, spinal cord stimulation and spinal analgesia.

 

Stages according to the Mayo Clinic:

 

Stage I:

 

  • Burning or aching pain, tenderness and swelling.

 

  • Changes in skin temperature, color and texture. At times your skin may be sweaty, at other times it may be cold. Skin color can range from white and mottled to red or blue. Skin may become tender, thin or shiny in the affected area.

 

  • Increased hair and nail growth.

 

  • Joint stiffness and muscle spasms.

 

Stage II:

 

  • Intensified, spreading pain and swelling.

 

  • More pronounced changes in skin color and texture.

 

  • Slowing of hair growth and nail deterioration. Cracking, grooving and spotting may occur in your nails.

 

  • Worsening stiffness in the muscles and joints of the affected limb.

 

Stage III:

 

  • Debilitating pain that may now affect an entire limb.

 

  • Muscle wasting (atrophy) and advanced joint damage, causing reduced mobility in the affected part of your body.

 

  • Irreversible skin damage.

 

While attorneys and systems battle it out, patients are left to find physicians who first of all believe in CRPS/RSD and secondly will treat it. They often go from doctor to doctor, their pain and depression increasing while the months from the injury roll by. Specialists are few and hard to find and most patients are unable to work and do not have the money to travel to these specialists. The systems that should work for them instead work against them, denying treatment after treatment. Often the only help the patients find is among each other, in information from clinics, and their own strength and faith.

 

Clinics

 

The Mayo Clinic

Arizona

5777 East Mayo Boulevard

Phoenix, AZ 85054

480-515-6296

Website

 

The Mayo Clinic

Florida

4201 Belfort Road

Jacksonville, Florida 32216

Phone: (904) 296-3700

Website

 

The Mayo Clinic

Minnesota

Rochester Methodist Hospital

201 West Center Street

Rochester, Minnesota 55902

507) 266-7890

Website

 

Saint Marys Hospital

1216 Second Street SW

Rochester, Minnesota 55902

(507) 255-5123

Website

 

The Cleveland Clinic

Michael Stanton-Hicks, M.D.

Phone: (216) 445-9559

Mail Code: C25

Website

 

Neurological Associates Pain Management Center

1255 37th Street, Suite B

P.O. Box 7147

Vero Beach, Florida 32960

772-720-9339

FAX: 772-770-5660

Website

 

International Research Foundation for RSD/CRPS

c/o Anthony F. Kirkpatrick, M.D., Ph.D.

USF Medical Clinics

12901 Bruce B. Downs Blvd

MDC 33

Tampa, Florida USA 33612

Website

 

National Institute of Neurological Disorders and Stroke

P.O. Box 5801

Bethesda, MD 20824

800-352-9424 (Voice - Toll-free)

301-496-5751 (Voice)

Website

 

Support Groups

 

American RSD Hope

Established by the Orsini family, whose son Keith suffers with RSD, this is one of the most comprehensive authorities on RSD.

 

SCRSA

South Carolina RSD Association.

 

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