New Here and Have A Lot of Questions

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 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!

Hi there,

Sorry you're in so much pain.I haven't been officially diagnosed yet, but your symptoms do sound like TN. There are lots of people on this site with similar pain as you have. I'm sure you will get some helpful responses soon. In the meantime, check out the tabs such as "Face Pain Info" on this site.

I hope you start feeling better soon.

6 months wait to see a neurologist is ridiculous in the extreme! Call around. You must be able to get in to see someone sooner. If not, the by all means try the ER. Living with that much pain is not reasonable. Very possible. I Had Lyme many years ago and in researching it found it causes many things including nerve damage, and your pain mirrors TN closely. Please get in to see a good neurologist as soon as possible. The sooner TN is treated the better the results if you do have it. Good Luck.


I'm sorry you are in so much pain..I too, was diagnosed with lyme disease. I have read that lyme disease creates alot of conditions in the body. And alot of pain..I have the pain in my ear, jaw, gums and tooth (canine) ..mostly just aching and pressure, some sharp pains in the tooth but only occasionally..I was pain free for awhile but now am back on my meds. I'm not sure if the symptoms I have are from the lyme disease or from a type of facial pain..I was diagnosed with atypical odontalgia and prescribed Amitriptriptyline. It helps..I have read that alot of people who suffer from lyme disease often take baths in epsom salt and hydrogen peroxide. I guess the mixture of the two draws out toxins in the body and the hydrogen peroxide adds oxygen to the cells in your body which apparently lyme disease doesn t like..I'm not much help but I hope you keep trying to get in to see a neurologist..Dont give up..You have people who love and need you..I hope you find the help you need and begin to feel better...