Now there is no physical house, but a connected community for information and support So many people have not heard of CRPS/RSD and ask about its nature. If it can be simply described it is the pain that does not heal. Remember the last time you sprained your ankle or a wrist or broke your arm? After a few weeks your body heals and the pain becomes a faint memory. With CRPS (or aka RSD) this disea
se the pain NEVER goes away though your bones or tissues have healed. Then the worst begins to happen, the pain begins spreading, first from where you were first injured then to other areas of your body. CRPS once began in a foot or leg and then spreads to the other leg or an arm. Then it is detected in other parts of your body until eventually it spreads to your entire body. Image deep body aches similar to the flu, your muscles feel as if on fire yet like ice at the same time. Your skin changes colors as if from the cold with bright red to deep purple hues and covering with blankets is painfully sensitive to your skin. Sudden swelling as if an injury has occurred, but has not. Your hands and feet are numb, most if not all the time. Electric like shooting pains throughout you at first in parts and eventually your whole body. Many experience stabbing pains which feel like a knife. Uncontrolled spasms in localized parts of your body, but spread over time, to their entire body seen like seizures. Your arms and legs may start to contract into permanent ill-flexed positions. Eventually you may loose the ability to walk, hold a glass of water or even talk. And many feel isolated when they can no longer be held or receive a warm loving hug. CPRS/RSD is known as an “invisible disease”. People who are living with this pain all day, every day experience pain levels as common as 9 on a scale of 10. There is no permenant relief. Initially there are no visible signs or symptoms, most doctors are not aware of this disease therefore misdiagnos them. It takes an average of 4 doctors and 2-3 years for them to receive the correct diagnosis. Even then, there has been little that could be done for them. Narcotic pain meds help for a few hours but then it comes back even worse. Nerve blocks may provide some relief, but only for a few days or weeks. Nothing really works. No relief ever lasts, until now…
We have finally found something that is progressively effective: intravenous (IV) infusions of a low-dose nerve blocker (not a narcotic and not chemotherapy). Patients receive one every day for 10 days, then twice a week for a month, every other week for 2 or 3 months, once a month as needed, then spacing out to 3 or 4 times a year eventually. We have seen patients come in in wheelchairs, and 2 months later walk out. Every day our patients say “if I could only get this pain down to 5 or 6 instead of 8 or 9 it would be a miracle”- we usually achieve 2 or 3, and sometimes even 0. It is not a cure, but it is a treatment that works. DeBruin Medical Center is one of only a few places in the entire country doing this treatment under this proven protocol. Our goal is to help as many people as we possibly can. Most insurance companies will not cover it. Even those that will reimburse do so only partially. On top of that, most of our patients come from out of town, as far away as Alaska, Chicago, Hawaii… imagine the hotel bills for 4-6 weeks, then flying back and forth every other week or every other month… it is increasingly cost prohibitive so even those we could help cannot get here. For this reason, we have the privilege and pleasure of introducing you to the “CRPS/RSD Clubhouse”! This house near the clinic becomes their “home away from home” during therapy. Similar to a Ronald McDonald type environment for them to be able to stay in while they are here, it at least limits the cost of hotel and makes obtaining treatment a lot more possible. We have a licensed staff member living on-site, (in a separate but attached apartment), which allows those who can come only by themselves to still be able to do so. Up until now, a family member has been required to come with them (who had to take time off of work, family responsibilities, etc. thus increasing further the financial burden) or they have had to hire a caregiver to stay with them. In other words, this is something that will make as big a difference in people’s lives unlike anything we ever come across. We have made it happen, but we need all the help and support and teamwork we can get to keep it going. We want to raise enough to pay rent/utilities every month so the patients can stay for free. If you feel you'd like to contribute, here's the link: www.gofundme.com/CRPSClubhouse
We also need a reliable minivan or other appropriate form of transportation between the house and the clinic, airport, grocery stores, etc. Local donations of consumables such as cleaning supplies, laundry detergent, toilet paper, etc. are always welcome. (Treatment is at DeBruin Medical Center in Orangevale, California, under the care of Dr. Mark DeBruin. See debruinmedicalcenter.com for more information).
