Funding for Trigeminal Neuralgia / full Body CRPS
A little bit over 5 years ago I had been diagnosed with CRPS and several months Later- Trigeminal Neuralgia. Many people are not aware of what CRPS is nor do they understand and that every single day the struggle is both painful, emotional and excruciating at times . The pain is like no other and at times is beyond any description — it never ends . It is often referred to as “the suicide disease” as pain and symptoms are excruciating and 24/7. It is the highest ranking pain on the McGill pain index, surpassing phantom limb, cancer and even childbirth. I have had the misfortune of not only having a rare disease like CRPS as well as TN but it has unfortunately spread far beyond its original origin and us fully global and systemic in my body. Meaning not only am I in pain and exhausted physically and emotionally daily that new things keep happening to me : bone density loss, crippling migraines, Allydonia, Dystonia, and constant insomnia... I am often unable to handle at times, touch/sounds/lights and also am dealing with brain stem ( and frontal lobes) and cognitive issues since CRPS affects the Lymbic, , CNS, and Autonomic NS. Recently the Trigeminal Neuralgia which used to be on par with my daily CRPS pain has escalated and has caused unbelievable dental and face and mouth pain . I have endured over the past 6 weeks a TN issue in my mouth and have experienced burning, painful and excruciating pain and electricity like jolts and compressions especially on my left side of face and my left lower jaw — as a result my pain has caused me to visit the ER after an infection has taken root in my lower jaw, even started to go into sepsis but was caught in time. I have a giant abscess- like protrusion under a tooth that can normally be diagnosed as a need for a root canal but in reality is not . The Trigeminal nerve extends through the jawline area and at times mimics the pain and need for a root canal but in my instance it often travels to several areas but has created an infection in the entire left jaw area and my left side of face extending painfully upward and shooting towards all areas of my head and often created unbearable flares. For this reason, I must see a specialist that deals with dental work for CRPS and TN patients. Unfortunately they do not take My insurance and I am beyond means to pay for such a procedure which usually involves a neural surgery . The cost I cannot contribute is $3000 and is what I am asking for in donations for my personal and agonizing pain.
I have given up so much in the span of 5 years but am also not allowing my diseases to take my life away from me. I have somehow learned to understand and educate my brain again and was able to graduate with a BS in Biomedical sciences. nutrition and am working towards a PhD in functional nutrition as a nutrition biochemist which may indeed help others from diseases such as above at the nutritional levels . I also am a health coach dealing directly with chronic pain sufferers and am currently looking to start a support group for living a better quality of life with CRPS/ TN / fibromyalgia and chronic pain sufferers.
However, I do struggle financially as every doctor must be a specialist of some sort and as a recurring on/off MS student I am uninsured and often underinsured to receive the help I need.
In fact, with your help in this matter I would be grateful and plan to pay if foreword to others with TNand CRPS sufferers who can also not make ends meet .
