RSD/CRPS is a disease that has many personalities and therefore, a doctor with little experience in treating these symptoms usually has a difficult time diagnosing the problem correctly. The behavior of the disease can vary from patient to patient and from symptom to symptom on any given day. It is an autoimmune disease, and affects the immune system response. This may make the patient more susceptible to common illnesses, like colds or flu, and recovery time may become longer than for a non-RSD/CRPS patient. In other words, it appears that the immune system is adversely affected by changes caused by this illness. Lack of stamina is a prevailing problem to the individual who has this disease. Often patients who have never had problems with asthma or allergies will develop these additional problems due to RSD/CRPS.

RSD/CRPS is a multi-symptomatic disease that is disabling in nature, and usually develops after the occurrence of some trauma, be it simple or complex. It is one of the chronic pain ‘diseases’ in CRPS. The ‘illness’ is non-terminal but may be life-long despite medical or other interventions.

Physical alterations brought by the disease may challenge body image and use. The intense pain imposed by RSD/CRPS leads to inactivity, withdrawal from family and friends, and discontinuance of cherished vocational and leisure pursuits. Although, the disease itself is not terminal, secondary effects of the disease may in fact cause death. Suicide is the largest destroyer of life for those with this disease. Other secondary effects may be on the heart, osteoporosis, and various other internal illnesses.

The largest percent of known RSD/CRPS patients contracted the disease after a fracture, but other factors such as a sprain, muscle or ligament injury, heart problems, infections, surgery, spinal injuries/disorders or major trauma can precede the development of RSD/CRPS symptoms. The list is unending. It occurs after minor trauma such as injections, having blood drawn or stubbing a toe. One young child was diagnosed with the illness after having her finger stick to a freezer compartment in a local grocery store. In approximately 30% of patients, there appears to be no definitive injury or trauma.

The onset of symptoms may appear as an intense and unrelenting burning, aching, sharp, tingling, and/or crushing pain. In fact, the pain that is associated with this disease is beyond what one would normally expect for the type of injury or trauma incurred. This is usually the most telling symptom of all and should not be ignored. There is pain and then there is excruciating, unbearable, and indescribable pain. The second can be RSD.

Other symptoms that can be present include swelling, stiffness, and discoloration of the skin. These problems can appear between the time of the original trauma to a few hours after the initial injury to several days or weeks and the disease progresses in ‘stages.’ Not all of these symptoms need to be present for the problem to be RSD/CRPS.

As stated earlier, this disease is very individualistic. RSD/CRPS can affect any part of the body, but usually begins in one or more of the extremities. It spreads in up to 70% of cases and in some cases; it becomes systemic or whole-body.

Originally it was thought that RSD/CRPS involved the sympathetic nervous system (hence RSD). Now in 2017, research is showing that RSD/CRPS actually involves the entire nervous system as well, including the central nervous system and the Limbic portion of your brain. However, it is still not understood, there is no rhyme or reason why this person gets it and this person gets it and that one does not. There can be remission for however long it lasts, but there is no cure. Still, if one goes into remission it might not be total remission and there may be some symptomology present.

It appears that a person who has RSD/CRPS goes into the fright and flight mode, Sympathetic Nervous System, and it never turns off, Parasympathetic Nervous System. The switch is broken. Because of this our hormones become unbalanced and that causes even more problems.

For more information, read RSD/CRPS from a Patient’s Perspective by Deb Lundquist and edited by Dr. Philip Getson, DO. It can be found on Amazon.com. There is a Kindle form as well. 

If you have questions, go to the Contact Page, and let me know.

Deb Lundquist

September 19, 2018