Where and How CRPS Spreads
Skin is the largest organ of the body and it is severely depleted by CRPS. Whether it’s skin blisters, burning breakout rashes, pustules, dermatitis, etc. the answer is YES, CRPS has the ability to damage every organ in the body. Skin damage appears in various areas on the body and is the result of further encroachment of CRPS attacking nerves, organs, blood, tissue, bones, and the entire immune system by altering every cell in the body. Other parts of the human dura organ system that are damaged by CRPS are your hair, nails and exocrine glands. CRPS can cause hearing and vision loss as well as loss of balance.
I began having burning skin blisters in year four of living with spreading CRPS-II. My hair began falling out in year five and my nails became hyper-ridged in year six. I was diagnosed by 11 experts with surgical onset diagnoses CRPS-II 23 years ago and several times since, yet not one “medical expert” ever shared these issues with me or ever provided any educational or research literature to help me help myself. When CRPS spread from my blood stream to my liver, that caused 1-2 autoimmune diseases each year I began chasing an incurable, orphan and systemic disease in a big hurry. My problem wasn’t finding a doctor or expert, the problem then and now is that there are very few “experts” focused on this neuroinflammatory, autoimmune, horribly debilitating and all-consuming disease of CRPS. These are the facts of our American society where 99% of Western Medicine is “specialized” and slivered at best. Each “expert” only has 10-12 minutes to address one issue. That’s done through the band-aiding of one or some symptoms and usually it’s with a prescription of sorts. Traumatized/agitated nerves throw off toxins that alter your cells and when left untreated or improperly treated with “aggressive P.T.”, those cells can become hyper-inflamed. When the spread occurs the hyper-inflamed cells then inflame your blood creating a hyper-coagulative (clotting) state. In my body CRPS caused an autoimmune disease known as Anti-Phospholipid Syndrome aka APS. APS causes DVT’s (blood clots in the limbs legs/arms) and pulmonary embolisms. In my case CRPS rapidly attacked my immune system following foot surgeries and three years later I was fighting to keep not only my foot but my colon too. I lost the colon battle three years in a row. CRPS has the power to decay bones, tissues, other nerves and organs throughout the entire body. So for those who have nerve lesions/blister's you can find Dr. Hooshmand & Dr. Schwartzman's and other global CRPS research at NIH, Mayo Clinic, WHO, PARC Canada and on my page @ www.thecrpspuzzle.com. I hope this information helps. If you're interested in further research PM me if it's not on any site listed here and we’ll get it to you.
As a 23 year veteran of systemic CRPS-II, both my husband and I have chosen to give our journey a much bigger purpose through sharing all that we've learned, unearthed and experienced along the way. We’ve spent more than 23 years getting educated, educating others, fighting, hunting, researching, calling around the world to find a cure. Because every person’s DNA and immune system is different every person’s solution for “whatever works” to relieve intractable pain and the spread of CRPS must be individually designed. My “whatever works” coping/mind & spirit, medical/physical=body has been through research/medical expert and self-research/education and actual trial and error. YOU ARE YOUR OWN BEST ADVOCATE!!! Educating yourself with the right tools to combat CRPS will get you ahead of most M.D.’s and help you to help yourself. No one knows your body or feels the pain but you. This is the part you really didn’t want to hear but is 100% true in all of life, information is power. It’s up to you to do the research and find the trials that have and are taking place in order to obtain the best care and help everyone with CRPS to move toward a cure. We want to give others what we didn’t have, all that we’ve learned in hopes of shortening the cycle of suffering for all people living with this terrible disease.