Chronic Pain Patients Organize The Reflex Sympathetic Dystrophy Syndrome Association’s Second Annual Long Island CRPS/RSD Awareness Walk

Chronic Pain Patients Organize The Reflex Sympathetic Dystrophy Syndrome Association’s Second Annual Long Island CRPS/RSD Awareness Walk

By Jordan Lusby.

Taking a shower is typically a soothing time that people use to reflect on the day. However, what if those little drops of water caused you to feel extreme pain? Each drop feels like you’re getting repeatedly stabbed with sharp needles, and you receive electric shocks as the temperature changes. You aren’t even able to finish washing the conditioner out of your hair because the pain is unbearable. The shower comes to resemble a torture chamber. You jump out the shower as quickly as possible seeking relief, but as soon as you rub the towel over your body to dry off, you immediately become tense and you gasp in agony because it feels like a cat is scratching your skin off.  Tears are forming in your eyes as you attempt to get dressed, but what was once a relaxing daily regimen has become a losing battle filled with dread and utter despair.

This constant and persistent pain, and the accompanying sensory and motor dysfunction, is the reality for people living with Complex Regional Pain Syndrome (aka Reflex Sympathetic Dystrophy), a disease that occurs when the nervous and immune systems malfunction in response to tissue damage from a trauma (such as nerve or musculoskeletal injury, surgery, or immobilization).  CRPS starts in one part of the body that’s injured, and often migrates to other areas.  CRPS/RSD causes nerves to misfire and generate constant pain, discoloration, temperature changes, and other disabling symptoms. Upon diagnosis of any serious medical condition, individuals typically go through a stage of denial where they wonder, “why me?”  These thoughts make it difficult not to be overcome by their diagnosis. Maintaining a positive outlook and finding support from other individuals diagnosed with the same problem can help those affected avoid spiraling into depression and isolation. One solution is to join a group of other patients who are battling the same condition.  It becomes imperative to share feelings, treatment options, medical resources, medication issues, etc … and most important of all, learn that you are not alone in this battle for pain relief, for which there is no cure and limited treatments.

The warriors attending the Reflex Sympathetic Dystrophy Syndrome Association’s Second Annual Long Island CRPS/RSD Awareness Walk on September 9, 2017, have decided that they will not let this condition hold them back. Rather, they will unite and fight back. They are choosing to push through the extreme chronic pain and disabilities in order to raise awareness of the condition that plagues their daily lives and which can ultimately destroy their quality of life; a condition that is rated more severe and more painful than childbirth, amputation, and even cancer. The goal of RSDSA’s Long Island CRPS/RSD Awareness Walk is to raise awareness, fund better treatments, and find a cure for the disabling and painful neuro-inflammatory disorder

“Our second annual walk on Long Island promises to be one of the most significant fundraisers for RSDSA in the metro-NY region, recapturing the community’s enthusiasm and hope to improve resources for patients suffering with CRPS,” says Jim Broatch, RSDSA’s executive vice president and director.

RSDSA Awareness Walk / 2

“The generosity, time, and dedication of our volunteers, many of whom have CRPS themselves, makes this event possible. We could not be more grateful for their contributions and the participation of registered walkers throughout Long Island, metro New York, Connecticut, and beyond, as patients form teams, join together in solidarity, and even register as virtual walkers.”

This day, filled with hope and fun, is the perfect time for CRPS patients, their families, friends, and caregivers, to meet others with this condition and to learn more about it. The RSDSA’s walk will feature educational and medical resources, sponsors who support chronic pain, and CRPS, disease-specific health professionals, activities for children, quality raffle prizes and gift bags, as well as a barbeque lunch. For more information about RSDSA and this year’s walk, visit or call RSDSA at 877-662-7737.  Registration is happening now and sponsorships are still available.

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Authored by: Jordan Lusby

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I want to ditto what William Dorn said. CRPS is horrible enough without having the constant stress of worrying if or when our meds will be taken away. All chronic pain is, and we are not the abusers.

Angelica Heavner

Boy did you describe the shower exactly. Also did you take a pic of my hand? That is what mine looks like on what I consider good days, bad days you can’t see the lines from the swelling.
I would also have to agree with William Dorn, please make sure something is said about medication. I know entirely to many being cut off, cold turkey, because of the new guidelines and doctors being scared. I am so tired of seeing candles from another death because of this. The suicide rate has tripled in less than a year not counting the amount that couldn’t survive the withdrawal effects.
I hope I can join this yr but life has a way of interfering. But plan on it around home.

William Dorn

Please use this walk to make the press aware of the need of chronic pain patients legitiment need for pain medicines that the goverment are trying to take away.We need these medicines to be able to live untill new medicines can be developed.Make them understand that you dont take away medicines with nothing to replace them with.