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Invisible Illness: CRPS we need awareness

Organized by: Danielle Wilson

Danielle's Photo
Danielle's Photo

THE STORY:

My Name is Danielle Wilson and I am a CRPS type 2 WARRIOR in almost all of my body by now . It's really difficult for me to share my vulnerability with tons of friends, strangers, colleagues and it's really difficult to read it myself without crying.... I was diagnosed 16 mos ago to an injury on my left foot my orthopedic MD examined as pain worsened and wasn't healing and had another dr colleague do some simple nerve testing and BAM diagnosed with a disease I had never heard of which also perplexed me as I am a Health & Wellness Coach , a graduate of IIN . I was immediately sent to a sports medicine and pain management Drs. The most insulting part was the sports Management DR claimed to be an expert and had me wait ing while he didn't realize I was waiting for 45 minutes declared I didn't have CRPS but needed psychiatric help . I was referred to a pain management dr where tests were run I had a great eval with a caring dr and staff who affirmed I had CRPS I refused to start on meds being a health coach I investigated and tried several homeopathic remedies and started nutritional healing he referred me for sympathetic nerve blocks and some helped but would wear off I then had a stellate ganglion block and a 1:2000000 chance the florcosoy would have the needle make contact and split open like a star the ganglion . Now with CRPS the pain is everywhere every moment of the day I am now taking 6 meds to help me with the pain and to keep me without dress as stress activates pain flares . The ganglion reaction damn near killed me all I remember was feeling white lightning burning and zapping my entire body and I blanked and was calmed down so the meds were in me . I've never been the same since . I seriously believe it stopped one major symptom yer started anew in my brain . I am physically, fiscally and psychologically drained the pain is relentless and is ever there . I have been wanting to bring my story up to you as this rare disease is now becoming a larger problem . The problems are many ... My goal is to raise awareness for people as anyone can get it to raise acknowledgement and trading for all ER Drs and staff as I have been to the ER twice and have to bring a folder about the disease and how I am able to be treated. This outrages me as DRs need the education because I've noted CRPS on the rise . More studies and research is absolutely essential and this disease is worse than cancer at a pain level the highest used by the Magil pain scale . I've attached a link to learn more about this disease as unfortunately it is possibly in my brain and definitely riddled throughout the entire body . Please help get the awareness about this disease so we can help many of the others who haven't let people know they have it and know that they are not alone. The protocol is big pharma meds some patients are on 18-22 a day this creates an even bigger problem in your weakened CRPS state I choose to holistically treat my self and use 6 meds but so many new parts of my body are affected daily I feel like it's everywhere and the pain never ceases but increases Its been a vulnerable and soulful experience tellimg my story and I'm terrified at my future as I , like few people have built a business with hard work , blood, sweat and tears for 14 years and I'm treated like a criminal for simply getting hurt and trying to appeal to others who may be suffering silently and ate not quite ready to talk about it -- I wish to advocate for the silent crps pain warriors as I am self -advocating . Please check this link out to learn how to help . It's with much love, faith and hope that we can unite and have our disease recognized and researched for a cure This link will provide with much information about CRPS . If you'd like to learn more please contact me at Daniwilson@mac.com http://www.rsdhope.org/what-is-crps.html

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Danielle Wilson

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