- J
- C
My name is Alice, I am 37 years old and have been suffering from chronic health issues for several years. Several of my diagnoses are ones of elimination, meaning it took several years to confirm them due to the need to rule out other causes. The most severe of these are fibromyalgia, myalgic encephalomyelitis, and neurogenic thoracic outlet syndrome which cause a variety of widespread symptoms that are more than a little challenging to manage. I was improving after the start of this year, but my symptoms not only came back, but worsened after I had a procedure on my neck at the end of April. My symptoms went from very mild to severe almost instantly after my procedure and I have struggled to regain any semblance of a normal life over the last several months. My pain has been far worse than ever before, I deal with severe post exertion malaise from even mild physical or mental activity (think of fatigue from the flu), I am frequently dizzy and lightheaded and have begun having vertigo attacks again, I experience frequent headaches and tinnitus, I have experienced new changes to my vision and hearing that came on suddenly, I experience frequent nausea and appetite loss, I have begun having severe muscle spasms, I have moderate to severe joint, tendon, and muscle pain, I am once again having severe night sweats, I am having severe brain fog and troubles with concentration and memory, I am having severe upper back and neck pain that makes daily chores and self care tasks challenging if not impossible, and my right arm has become extremely limited in how I can use it due to tendinosis, atrophy, joint contracture, and severe pain due to TOS. I am now also experiencing autonomic attacks, chronic lymphadenopathy, and venous insufficiency, all of which we are still investigating. These new symptoms have led my care team to order many new referrals and new tests to see if we can find the cause as my current diagnoses do not fully explain these new symptoms. These are not anywhere close to all of my symptoms or diagnoses, but they are the most constant ones I deal with. I have included info graphics with information about fibromyalgia and myalgic encephalomyelitis because these conditions are so complex and trying to explain all of the symptoms would be too challenging for me to do in my current state. Additionally, my mental health has been significantly impacted by the recent decline in my physical health and the new limitations I am facing. It is hard to put into words the struggles I have faced due to these health issues. It's more than just managing symptoms, it is constant grief and constant adjustment as each day brings new challenges and new obstacles to overcome. Most of my symptoms are extremely variable in their presentation as well, which makes learning how to manage them and pace myself all the more challenging. I have begun learning how to cut and chop foods left handed so that I can continue to prepare meals for myself and care for myself, but this is a slow transition and there is much I still cannot do and may not be able to for some time. I do not always feel that I have the best support system, which also adds to my mental health struggles as I continue to face one of the most challenging times of my life. I have many appointments coming up to address these issues and search for answers and treatment options, but I really need help reducing my stress around finances while I continue to pursue answers, treatment, and additional support options. I have recently had to move due to unstable living conditions that have been negatively impacting my health. Any support you can offer is very much appreciated and will allow me to afford some basic needs like gas, toiletries, medical supplies not covered by insurance, groceries every now and then, utility bills, rent, other minor bills and basic needs for the next several months.





