Hey all, I am 26 years old and 4 years ago I got Lyme Disease. Ever since then my life has been one HUGE downward spiral. After being treated long term for the Lyme I was diagnosed with Fibromyalgia, Rheumatoid Arthritis, Chronic Sciatica, Chronic Fatigue Syndrome and many other things like chronic ear and sinus infections.
For about 6 months now I have been having what I have been referring to as episodes of horrific pain in my face.The first time it happened I had a pretty bad ear infection and although I had never had pain like this with any of my previous infections, I figured maybe it was just worse than usual this time. But it was unlike anything I have ever felt before and being very familiar with ear and sinus infection pain I knew this wasn't right. But soon after the ear infection cleared, the pain in my face left too. So I kind of just put it in the back of my head. Then maybe 2 weeks later it happened again, no infections present this time, my doctor told me it is TMJ and gave me Diclofenac. It wasn't helping at all, in fact my pain was getting worse. So back to the doctor I went, and was told that maybe I had an abscess tooth and should see a dentist. No abscess and a few days later, pain was gone again. Fast forward to this monday, again, I had a mild ear infection. I had ear pain, whatever. Until about 10pm, thats when the horrific pain returned yet again this has been my 7th episode. Went to the doctor on Tuesday and was told it is either TMJ or TN and was told see a neurologist and in the mean time was given Meloxicam (this does nothing for my face but makes my knees feel great.)
I am trying not to get frustrated with my Doctor, but it is hard to keep a level head when the pain is this bad. She seems to be playing a guessing game at this point and it's pissing me off. I am on a 6 month waiting list to see the neurologist...I can't deal with this much longer...I have a 6 year old daughter to care for, I want to enjoy the few things that I have left to enjoy, I want to get this figured out. I don't know what my next step should be, maybe someone here can give me some guidance.
When I have these episodes, they start as a constant burning/throbbing pain. The pain is on the side of my head, my cheek bone, my ear (front, back and what feels like inside), my eye, my jaw, my neck, my teeth and gums and sometimes where my neck meets my shoulders. I also sometimes feel what feels like a lot of pressure, like my face is going to explode. And at random I will get these jolts of the worst pain I have ever felt in my life, so bad that it instantly brings tears to my eyes (a few times I have fallen over if it happens when I am walking.) They happen without warning and I haven't noticed anything that triggers the jolts, they seem completely random. They last maybe 10-20 seconds in which time I clutch my face and cry (I don't know why, this is just my reaction.) Talking hurts, moving my eyes hurts, eating hurts, hell just being awake hurts. I have found that alternating hot and cold compress helps a tiny bit, ibuprofen takes the edge off for maybe a half hour-45 minutes, applying pressure to the side of my face that hurts (left side) helps sometimes but sometimes it makes it worse. I absolutely CANNOT brush my teeth, the last time I tried the pain was literally blinding and I ended up falling and hitting my head on the sink...it is totally gross, but I would rather have nasty teeth (my teeth are all bad anyway) than to feel pain like that.
So my questions are:
1. What can I do to get some help now? Is going to the ER an option?
2. Does this sound like TN or TMJ? I don't know a whole lot about either.
3. Does anything help the constant burning pain?
4. How do I explain to my daughter (and others) that talking, laughing, smiling...basically and expression, hurts?
5. With this current episode I have had a constant low grade fever 99.8-100.6 that just won't go away despite the large amounts of ibuprofen. Is this normal?
Sorry this is soooooooooo long. But thank you ahead of time for reading it!