Hi all. I've been dealing with these symptoms for a year and a half now and am at my wits end. I am really hoping someone can give me some insight as to what may be going on.
Very early in December 2020 I started to not feel well. Run down, sleeping more than usual, and loss of appetite. I then started to have to run to the bathroom shortly after eating anything at all. I could eat the most plain food and I would have INTENSE stomach pain - unlike anything I had experienced before. Even pushing slightly on my lower right abdomen area hurt. My stools were still often solid though - it was just accompanied by extreme pain while going. Over time I started eating less and less as the only thing that alleviated my symptoms was to barely eat. Between December 2020 and March 2020 I lost about 30lbs. I felt SO sick during this time that I barely left the bed. Often too sick feeling to even lift my head from the pillow.
Going back to December 2020/early January 2021. I was lying in bed one night and again my lower right abdomen area was really bothering me - it felt painful and "tight" in a way I had not experienced before. Suddenly it felt like something touched my lower spine. I don't know how to explain it except for that it felt like a million nerves at the very bottom of my spine were touched at once. I shot out of bed screaming for my husband and all I could say was "my spine! my spine!" over and over. It felt like whatever touched my spine shot pain from the very bottom of it all the way up through the top. My entire spine throbbed in a way that is not normal or like anything I have ever experienced before. I have had:
MRI of spine: Which came back ok
Multiple CT scans and ultrasounds of my abdomen which show nothing
Colonoscopy due to my initial symptoms causing me to go to the bathroom a lot - this showed nothing
Endoscopy because one of my symptoms is almost like a gagging/horrible coughing fit that happens here and there. This also showed nothing unusual.
Over time my appetite resumed/no bathroom issues but the pain in my spine is horrific. One of the biggest symptoms was that I could not even sit down for MONTHS. If I tried I would have the most searing pain that sort of wrapped from my spine around to the front of my body. It is still incredibly painful and affecting me every single day. At one point I had a large bulge come out on the back of my left leg which I believe was a lymph node. It eventually went back down though. I've also had a bulge come out on the right side of my face - sort of right in front of my ear area. This has come up and gone back down several times. My head tingles like crazy (I also had a MRI done of my head that did not show anything unusual) and lately the tingling went from mostly the right side of my head to often my entire scalp, mouth, and even tongue often tingling or going numb. It is extremely scary. At one of my doctors appointments I'm sitting there with the bulge on the side of my face and she says, "well sometimes the lymph nodes react to things but it's not staying up so maybe try physical therapy." I am at my wits end with this. I feel incredibly unwell and have spent most of the last year and a half lying in bed. I have no upcoming doctors appointments because they all keep writing me off. "Things look ok. Try physical therapy." I did not hurt myself and this all started when I was more sick than I had EVER been and I still don't feel like myself.
What could have touched or came into contact with my spine? It almost felt like something got "into" my spine if that makes sense.
Why couldn't I sit down for months and still feel such intense spine pain?
I am sure the head tingling is related to my spine but from what? What is the bulge that comes and goes?
I am so tired of feeling unwell and feeling such intense pain. I want to get better and feel like me again.
Thanks in advance.