Hello everyone,
This is new for me & difficult as I have been taking care of myself since a very young age. My name is Amy and I am 43 yrs. old & have severe Complex Regional Pain Syndrome (CRPS) formerly was Reflex Sympathetic Dystrophy (RSD). CRPS is a rare invisible disease, but considered the worst of chronic pain diseases. My CRPS was sustained from a severe ankle injury. Nicknamed the “Suicide disease”, with a 25% rate. I have developed tremors & have uncontrollable shaking that comes & goes.
I am in this battle ALONE, I do not have the support needed for this disease. The CRPS has spread throughout areas in my body other than the initial injury I sustained which was the cause of this debilitating disease. I have joined online groups but that goes only so far. I lost my home, unable to go back to work (21 year Bartender/Mixologist), which in itself has been extremely difficult for me. There is more than just bartending, I assist or completely create seasonal cocktail menus from my wildcrafting, and manage bars. I had started to put together a cocktail recipe book that customers had said they would purchase. That has been put on the back burner for the moment. Since I have not been able to pay bills the repo people are after my only way of transportation. I only have $2,300 left of payments after 4 years & $14,000 later. I cannot let them reposses my Jeep. I have paid for everything myself towards that Jeep, means a lot to me. I lost all income, I am trying to get an Etsy shop going but some days I am unable to get out of bed. Also trying to sell any valuable belongings. I am staying with friends on their couch with my cat, but that can last only so long, my time is limited. I have tried for loans, any help I can get & so far I have not gotten the help I need. This is causing the depression from my CRPS to sky rocket & become unmanageable. I feel I am out of options, and becoming hopeless. My faith in people has dwindled as I am bewildered/broken-hearted at a few of the people I always believed I could count on to only be turned away. I am going to be going to a specialist in Seattle asap. I live in a small rural town far from specialists. People around me do not understand my disease. So I seclude myself as much as possible, not wanting to be seen in the condition I am as to how people used to see me. I will explain a bit of CRPS to you:
Complex regional pain syndrome (CRPS) is a broad term describing excess and prolonged pain and inflammation that follows an injury to an arm or leg. CRPS has acute (recent, short-term) and chronic (lasting greater than six months) forms. CRPS used to be known as reflex sympathetic dystrophy (RSD) and causalgia. People with CRPS have changing combinations of spontaneous pain or excess pain that is much greater than normal following something as mild as a touch. Other symptoms include changes in skin color, temperature, and/or swelling on the arm or leg below the site of injury. The rare severe or prolonged cases are profoundly disabling.
Most CRPS illnesses are caused by improper function of the peripheral C-fiber nerve fibers that carry pain messages to the brain. Their excess firing also triggers inflammation designed to promote healing and rest after injury. In some people the nerve injury is obvious but in others a specialist may be needed to locate and treat the injury.
Because of the varied symptoms, the fact that symptoms may change over time, and the difficulty finding a positive cause in some cases, CRPS is hard to treat. There is no treatment that cures CRPS.
Like all chronic pain conditions, living with CRPS is not easy. The physical stress of living with pain can place an enormous stress on your emotional and mental health. For some people, this may lead to problems with depression or anxiety.
If not recognized and addressed, these mental health effects can further increase your perception of pain.
CRPS may be heightened by emotional stress.
The effects of complex regional pain syndrome can grow more serious with time. So the sooner you find out if you have it, the better.
The symptoms of CRPS vary in their severity and length. One symptom of CRPS is continuous, intense pain that gets worse rather than better over time. If CRPS happens after an injury, it may seem out of proportion to the seriousness of the injury. Even in cases involving an injury only to a finger or toe, pain can spread to include the entire arm or leg. In some cases, pain can even travel to the opposite extremity. Other symptoms of CRPS include:
• “Burning” pain
• Sensitivity to touch or cold
• Swelling and stiffness in affected joints
• Motor disability, with decreased ability to move the affected body part
• Changes in nail and hair growth pattern; there may be rapid hair growth or no hair growth.
• Skin changes. CRPS can involve changes in skin temperature — skin on one extremity can feel warmer or cooler compared to the opposite extremity. Skin color may become blotchy, pale, purple or red. The texture of skin also can change, becoming shiny and thin. People with CRPS may have skin that sometimes is excessively sweaty.
• Despite its mysterious attributes, few physicians doubt that CRPS is a real and difficult condition. As a chronic pain syndrome, physicians are increasingly aware of and educated about ongoing research that continues to highlight the important role of the brain in processing sensations like pain and changes in the brain that can lead to an abnormal perception of pain.
Unlike in the past when some chronic pain conditions were dismissed as psychological, the newer understanding of the brain’s involvement in processing pain has shed light and helped to destigmatize conditions like CRPS that have been difficult to understand.
The main symptom of CRPS is continuous and intense pain in the feet, legs, arms, or hands. The pain gets worse over time, and frequently spreads to another extremity or area of the body.
Overall, CRPS is not a common condition. Studies show an incidence rate of 6.28 per 100,000 person-years when combining types 1 and 2. This means that, on average, six people will be expected to be diagnosed with CRPS out of 100,000 people observed annually in the United States. If CRPS isn’t diagnosed and treated early, the disease may progress to more-disabling signs and symptoms.
• Tissue wasting (atrophy). The skin, bones and muscles may begin to deteriorate and weaken if you avoid or have trouble moving an arm or a leg because of pain or stiffness.
• Muscle tightening (contracture). You also may experience tightening of the muscles. This may lead to a condition in which the hand and fingers or the foot and toes contract into a fixed position.
• Also causes memory loss
So as you have read, CRPS is a debilitating horrific disease that I would give anything to not have. I am doing all I can to get through each day & it is a struggle. I do not know what else to do or where else to turn. Please I ask you, if you are able to help me with some financial support, such as for gas as I am tired if running out in the side of the road all the time, and food for my cat & I, it would greatly take some stress off. Again this is difficult for me to even ask this of total strangers, but I am at my end & not sure where to go from here. If you have any questions please do not hesitate to email me, notesontheritval@yahoo.com , I thank you for reading this and your consideration. Bless you everyone.
My Paypal is:
paypal.me/renegadegypsy
P.S. the photo of me is an older photo before CRPS