#crps #houstoncrps #crpsorangeday #obamacare My name is Amy V and I have CRPS aka complex regional pain syndrome. I fight daily to bring awareness to this one rare illness that is over 100 years old from the civil war (causalgia) and still very, very few Drs, nurses are aware of CRPS and we have very few treatment options, and now people that cant drive have to find a way to pay for a dr visit to get medication. We need Awareness for CRPS, we need training for the medical field, we need this as its own specialty which encompasses the entire nervous system. They need to know about Mast cell activation disorder, fibromyalgia etc... I believe we can do more to understand CRPS. I was once a Vice President of Risk Operations and a Fraud operations and Strategy Manager. I was a go getter, fast paced and career minded individual. One day I was walking in my cute shoes (loafer high heels) and I stepped off a curved sidewalk and my foot went side to side and I stumbled back onto the sidewalk and stomped around till I got to a post to lean on and I had to ask someone to get my car and drove home with my left foot. I elevated my foot and rested for 4 days. It still wasnt better so I went to get an X-ray and I was then referred to a podiatrist who casted my foot for four months even though the 6-week X-ray showed that the talus bone fracture was healed. I kept saying something is wrong. I took upon myself at month five to go to an orthopedic before getting another cast. The Dr saw my foot and he diagnosed me immediately and used the old name RSD and explained it was now referred as CRPS COMPLEX regional pain syndrome. He got me into the Pain Clinic but the damage was done and too late for remission. I am now after 1 year maxed out on the original meds given to me and the FDA hasnt approved anything else for CRPS and in new Bills they are leaving out CRPS. Please help STOP the BURN!! People ask me how do you feel? What hurts? I have come to dislike those questions! How much time do you have? (Never enough) Are you listening? And most of all WHERE DO I BEGIN? I have no idea what pain goes to what condition so I start with the original CRPS right foot and work my way up. At a static elevated position my foot feels broken, like Ive cut open the right outside of my foot. It also feels like acid has been poured on top of the cut my toes curl from the pain. I prefer NOTHING touching it however my foot at the same time feels like I have frostbite so I have to put a blanket (certain soft fuzzy texture) till I cant take it anymore and I elevate and repeat. Any walking on my foot increases the acid, fire, cut open foot and it spreads to my toes and bottoms of my feet to my shin. My entire body hurts even my fingers. Im so swollen I feel like Im going to pop at any moment. My joints feel like bone against bone and on fire. My ribs cant stand anything tight against them. Deep breaths are painful. My tailbone on fire on up my spine. I feel like a fiery stake from my tailbone to my brain. The lobes of my head feels like they are in a vice. My head has gunshot electrical pain as well as vice crushing pain. My muscles feel like they are being ripped from my body and never loose. My neck feels broken, crushed, and on fire. All this and unable to control my body temperature. My head can sweat to look like I just got out of a shower. I also get sick at the blink of an eye. Strep, bronchitis and pneumonia. I also have finger skin blisters that itch and my hands can burn and turn red. My organs are having random issues, infection but no bladder infection? Stomach/gallbladder/kidney/liver pain. Stomach ulcers. Intestinal issues, tmj, blurry vision randomly and FATIGUE! Im sure Ive missed a lot but Drs need to treat ALL the pain, work together with other drs. The pain # can be different but overall a 10 doesnt even begin to tell my real pain Im in. The faces dont work either because I have no choice but to continuing smiling regardless of the pain. But ask me with sincerity, understanding, compassion and I will break down! It hurts me to show my pain so I wait till they arent around to cry but what good is that going to do? The pain remains day in and day out unless in a medicated sleep only to wake up in excruciating pain throughout the night. I talk to my Lord and savior Jesus Christ every morning and start a new day trying to live life to the fullest even if that means never leaving the house or sucking it up and going somewhere whether it be on foot or in a transport wheelchair. I just ask each person that reads this. What would you do if you were in this much pain everyday and people treat your invisible illness like your making it all up. Keep in mind this is a progressive illness. We need more awareness, more treatments, better care in the medical community and not to be treated like a druggie in the ER! The ER is our last resort to get a muscle relaxer and be discharged without a consult to a CRPS trained Pain Dr. Please think of a loved one and what if they had CRPS Help stop the burn cuz CRPS gets on our nerves!!!!
Posted on: Tue, 04 Nov 2014 02:06:12 +0000
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