As day one of the program indicates, I should share my journey, so here goes.
I have always been a person to hyper fixate on health issues. If it wasn't about my own health issues, it was things with my children. I would consider myself to be someone with health anxiety and OCD tendencies, though I am not officially diagnosed with OCD.
In 2024, I was convinced I had breast cancer and no amount of testing and doctor visits could tell my brain otherwise. I had testing (mammo & US) every 6 months for 18 months and finally was told just to come every year, because nothing was wrong. Yet, my mind could never accept it. I put myself through terrible mental anguish and truly think I experienced a nervous breakdown.
Once I finally had the all clear, within a few weeks I started to experience numbness in my face. I was in the midst of a sinus infection, and took antibiotics, as well as steroids, but the numbness persisted. In the middle of the antibiotics, I then got COVID and that's when the numbness moved to tingling up my forehead, and into my scalp. Then my feet started going numb and the numbness was working it's way up my calf. I was having feelings of bugs crawling in my skin and pin pokes in random places also. I went to the ER, had a ton of blood work done, as well as a CT scan and an MRI of my brain and spinal cord. They found absolutely nothing, other than a bad sinus infection.
After I got over COVID, the feet numbness went away, but the numbness in my face and altered sensations in my scalp persisted.
I then saw ENT, who wanted to do an invasive sinus surgery to clear the infection and create new drainage passages in my sinuses. I opted for a second opinion and had a smaller, less invasive procedure to just expand my existing passageways. Yet still, the face and scalp sensations continued, as well as some body sensations here and there.
I then saw a neurologist who did a nerve conduction study and just found mild carpel tunnel in one wrist. I saw a second neurologist who suggested it was SFN from long covid. The thing is, this all started before covid, when I was in the midst of my psychological breakdown over my fear of the breast cancer that I didn't have. He wanted to do a punch biopsy to confirm SFN, but I declined, because they can't do it on my scalp or face and I have no symptoms on my legs where he wanted to complete the test. He said it would likely come back negative, but that wouldn't change his diagnosis. The neurologist also ran a ton more blood work and found nothing of note.
Now it's been a year since all my symptoms have started. Many things are better, but my facial numbness and scalp itching/tingling persist. The thing is, when I have a busy day and I'm distracted, I have virtually no symptoms. If I have a very low key, low stress day of relaxing, I have virtually no symptoms. But when I'm at my high stress job, my symptoms are through the roof. If i go on vacation, no symptoms. So, I've started to see the correlation and have recognized that I likely can't have a serious medical issue, when my symptoms are solely dependent on my mental health that day.
I've been seeing a therapist for several months now, but that isn't helping much. I stumbled on this website, and I thought, while I'm not in "pain" it is still a consistent sensation in my body that I believe my mind is causing. So, I'm giving the 6 week program a try.
And if anyone reads this and has recommendations on which book to start with, I am all ears! There is so much overwhelming information out there.
I have always been a person to hyper fixate on health issues. If it wasn't about my own health issues, it was things with my children. I would consider myself to be someone with health anxiety and OCD tendencies, though I am not officially diagnosed with OCD.
In 2024, I was convinced I had breast cancer and no amount of testing and doctor visits could tell my brain otherwise. I had testing (mammo & US) every 6 months for 18 months and finally was told just to come every year, because nothing was wrong. Yet, my mind could never accept it. I put myself through terrible mental anguish and truly think I experienced a nervous breakdown.
Once I finally had the all clear, within a few weeks I started to experience numbness in my face. I was in the midst of a sinus infection, and took antibiotics, as well as steroids, but the numbness persisted. In the middle of the antibiotics, I then got COVID and that's when the numbness moved to tingling up my forehead, and into my scalp. Then my feet started going numb and the numbness was working it's way up my calf. I was having feelings of bugs crawling in my skin and pin pokes in random places also. I went to the ER, had a ton of blood work done, as well as a CT scan and an MRI of my brain and spinal cord. They found absolutely nothing, other than a bad sinus infection.
After I got over COVID, the feet numbness went away, but the numbness in my face and altered sensations in my scalp persisted.
I then saw ENT, who wanted to do an invasive sinus surgery to clear the infection and create new drainage passages in my sinuses. I opted for a second opinion and had a smaller, less invasive procedure to just expand my existing passageways. Yet still, the face and scalp sensations continued, as well as some body sensations here and there.
I then saw a neurologist who did a nerve conduction study and just found mild carpel tunnel in one wrist. I saw a second neurologist who suggested it was SFN from long covid. The thing is, this all started before covid, when I was in the midst of my psychological breakdown over my fear of the breast cancer that I didn't have. He wanted to do a punch biopsy to confirm SFN, but I declined, because they can't do it on my scalp or face and I have no symptoms on my legs where he wanted to complete the test. He said it would likely come back negative, but that wouldn't change his diagnosis. The neurologist also ran a ton more blood work and found nothing of note.
Now it's been a year since all my symptoms have started. Many things are better, but my facial numbness and scalp itching/tingling persist. The thing is, when I have a busy day and I'm distracted, I have virtually no symptoms. If I have a very low key, low stress day of relaxing, I have virtually no symptoms. But when I'm at my high stress job, my symptoms are through the roof. If i go on vacation, no symptoms. So, I've started to see the correlation and have recognized that I likely can't have a serious medical issue, when my symptoms are solely dependent on my mental health that day.
I've been seeing a therapist for several months now, but that isn't helping much. I stumbled on this website, and I thought, while I'm not in "pain" it is still a consistent sensation in my body that I believe my mind is causing. So, I'm giving the 6 week program a try.
And if anyone reads this and has recommendations on which book to start with, I am all ears! There is so much overwhelming information out there.
