- CASE FILE
My sis suffers with swelling, inflammation, tremendous pressure build up, arthritic like pain on brain, fogginess, constant horrific pain.
ABOUT THIS CASE FILE
I’m desperate to find answers for my sister who is 55. She has suffered since 1995 and is getting worse with every passing year. She has been given various diagnoses through the years such as Fibromyalgia, Epstein Barr Virus, Lyme Disease & Lupus. Recently she was told she has some kind of arthritis. At one point they even ruled out MS. It is agonizing to see how completely debilitated she can become due to this illness and she’s getting worse.
In 2014 she moved away from her home in the Hudson River Valley, NY area where she had family to try the climate in San Diego. She knew that her body was highly sensitive to cloud cover, barometric pressure changes, rain, snow, etc. and we had so much of that where we lived. Her body swells / inflammation sets in (especially in her joints) and she feels tremendous pressure all over her body. She often says she wishes someone could just prick her so the pressure could be released like a balloon. She experiences what she would often call deep bone pain all over. She also experiences foggy brain. In addition, on occasion, she has described having the sensation of feeling like bugs are inside her, but knowing full well they are not. All of these symptoms leave her completely disabled. Sometimes she cannot even lift a coffee mug without excruciating pain while symptoms are at their worst. She has had some seizures which scare us and no one seems to know why. At one point she was on prednisone and we felt that it could have brought them on, but we have no way of really knowing. She will no longer take that. She has wheelchairs, walkers and canes. Sometimes when she walks with a walker you can see her dragging one side of her body like there’s greater weakness on that side. Sometimes she holds her hands in an odd way and she cannot control it.
She was so desperate and sick of being sick that she did a brave thing and moved out west alone to see if a change in weather would help her. Sadly, she found out that her body could not handle the marine layer in San Diego and the symptoms continued. Two years ago she moved to a town near Tucson in the hopes that the dry heat would help her, but she cannot handle the monsoon season and the heavy cloud cover that comes with it. They seem to be triggers for her which set off the worst symptoms! She has recently decided she needs to be closer to my husband and I who now live in south eastern NC. I fear moving her may make her symptoms even worse because of the amount of rain we get here, but I understand the need for her to be closer to family.
She’s been put on various medications through the years and none have helped. Her body also seems to have developed more and more sensitivity to some drugs and they end up putting her on something and having to take her off due to hives, etc. She has taken herself off of dangerous pain meds because of fear of ever becoming addicted to them. She’s been trying THC gummy bears and CBD oil, but that doesn’t take away all her pain so she literally lives with pain a good portion of the time. Pain meds seem to be their only answer at this point and it’s heartbreaking! One of her doctor’s once told me that she had the worst lupus symptoms of all her patients.
Many years ago she lived in the Hudson River Valley in Hopewell Junction, NY. Sadly, the area she lived in had toxic chemicals spilled into the soil by a local company and drinking wells in the area were contaminated. We found out about it after she’d moved out of the area. Her symptoms began sometime after she lived there and she’s never been tested for potential impacts from the chemicals / toxins she was exposed while living in that area. There have been many people (of all ages) diagnosed with various illnesses in that region and some children born with diseases.
As many people with chronic illness can attest to she’s also been told it’s in her head on occasion. We know better, we know the person and have watched the decline that she still fights against every day! This is someone who loved her job as a dental assistant and who would hike, ski, scuba dive and wasn’t afraid to drive thousands of miles to see a national park. She is someone who still embraces life when she has a good day and you cannot keep her down, but the good days seem to be fewer and far between. She has lost her marriage, her job and her financial stability because of whatever this is.
We are heartbroken for her and desperate for answers. I’m wondering if there is anyone out there with similar symptoms which seem to be furiously triggered by weather (clouds, rain, etc)? We find it hard to believe that she’s the only one and I also find it hard to believe that this is simply lupus. It just doesn’t add up to me. You can be sitting with her and she goes from feeling OK to being completely incapacitated in a matter of hours and in a wheelchair, having to use a walker or a cane depending on the severity of the symptoms on that given day and with off the charts pain. I’m begging you to please, please help my sister. Consider her case. She deserves so much more in life and watching her like this is heart wrenching. We are scared for her since she seems to be getting worse. I feel a team of doctors with fresh eyes could be an answer to our prayers for her. I would take her wherever you ask. Thank you for your time and consideration of her case.