My daughter Sierra lives with a rare condition called CRPS - Chronic Regional Pain Syndrome, and we need help raising funds for a high success rate procedure only available in Italy. Unfortunately this procedure will be fully up front and completely out of pocket. She has tried every option available here in the United States. This procedure, neridronate infusions, is our last hope for any pain relief and for her to even somewhat live a normal life.

CRPS is the most painful, incurable condition known to man and is also nicknamed the “suicide disease” due to the high amount of people who tragically end their lives to put a stop to their pain and suffering. The McGill Pain Index, is a 50 point rigorously tested scientific scale in which the overall score is determined by compiling various numerics and cross referenced descriptive words allowing direct comparison across conditions. According to this pain scale, CRPS ranks the highest at 46 points, ranking 4 points higher than passing a kidney stone, 10 points higher than natural childbirth (without any medication), 18 points higher than chronic back pain, and 7 points higher than traumatic amputation of a digit. To put that last one into perspective, imagine your finger laying on a cutting board and being chopped clean off, what my daughter endures on a daily basis is much more painful.

Sierra’s Battle with CRPS

It has been beyond difficult watching my thriving child just starting her adult life go in for a shoulder surgery that has completely turned her life upside down, and has caused 2 years of suffering. The severity of her condition and her pain continues to worsen the longer time goes on. Seeing my child in such pain, and watching her have intense flareups that bring her to tears and make her scream, throw up, and even pass out at times, knowing there’s nothing I can do to ease her pain is absolutely heartbreaking. She has to live with many triggers that can cause excruciating flare ups, such as cold, heat, the wind hitting her neck, arm or hand, even moving a blanket near her too fast, causing a breeze. Car rides have become extremely difficult for her, with every pothole or little bump causing her extreme pain. Showering causes her the most pain out of anything else, bringing her to tears or worse every single time. She has days where she is unable to wear a shirt, because just the touch of a shirt on her arm can cause a horrible flare up. She tries so hard to stay optimistic, but I have been watching her suffer and slowly lose hope over the past 2 years. Hearing my daughter say, “I wish I had chloroform to knock myself out so I wouldn’t have to feel this pain” and “I don’t know what to do anymore, I just want this pain to stop” and “I can’t live like this for the rest of my life” and so much more, has been absolutely devastating and crushing, to say the very least.

Sierra’s downhill battle with CRPS all began with a failed shoulder surgery on July 25th 2022 for a rare condition called “snapping scapula”, where her shoulder blade was grinding against her ribs. About two months after surgery, she felt as if something was not right with her arm, month after month, she complained to her surgeon telling him how her arm and hand would get swollen and she would feel a shooting pain down her arm, and he kept telling her that it was normal after surgery. Then finally in February of 2023, her surgeon ordered a nerve test in her right arm, only after her and I both insisted he do so. The doctor who performed the nerve test then had told her that he believes she has CRPS. We had no idea what CRPS was, no medical professional Sierra was working with at that time wanted to be the one to explain it to her either. What was played off as “not a big deal” of a condition, soon became as what Sierra describes as “torturous hell”. We have exhausted all options in the United States, many medications throughout, and physical therapy early on. After neither of those worked, we tried nerve blocks, but that treatment was cut short because the second one almost killed my daughter, and the physical strain on her body that day made her condition even worse. Next, we tried the spinal cord stimulator trial, again unsuccessful, and even caused the right side of her face and neck to swell up, and she was unable to move her neck, they still to this day don’t know why that happened, but clearly this also worsened her condition. After that, our last hope inside of the United States, and what we originally thought was her last option overall, were ketamine infusions done at the Cleveland Clinic in Ohio. During the last of her 5 infusions, she had a flare up bad enough to bring her to tears. This didn’t work either, and ended up having rare adverse effects on Sierra, including putting her into a depressive state for a little over two months. Neridronate infusions in Italy are her last option and last hope for a life in less pain and even the possibility of full remission.

What is CRPS (Complex Regional Pain Syndrome)?

CRPS is a neurological condition that causes pain and other symptoms in your extremities. Experts believe that CRPS occurs as a result of dysfunction in your central or peripheral nervous systems. The abnormal functioning results in an overreaction to pain signals that your nervous system can’t shut off. The most common symptoms are: extreme pain, swelling, decreased function, changes in skin temperature, color and texture all to the affected limb. The exact cause of CRPS is unknown however, it can be caused by surgery, fractures, sprains, strains or even bruises burns or cuts, in cases where trauma is caused to nerves.

Please feel free to reach out with any questions.