Chronic Pain members - Welcome, please introduce yourself

I developed earaches in September 2016. My primary care found no ear or sinus infection and sent me to an ENT, who diagnosed TMJ pain. I went to my dentist for help. He gave me weekly anesthesia shots into trigger points (OUCH!) and exercises to do, including massaging the trigger points and opening my mouth as wide as I could numerous times in the shower while my face was warm and wet. (I have been wearing a night guard made by my dentist for over 20 years; he replaces them as they wear out.) The pain continued and only got worse; it was at the top of my head, in my ears, in my jaw, above my palate (as though I'd eaten hot food). My dentist sent me to an oral surgeon, who did 360-degree x-rays and found no joint damage. He told me I was therefore not a candidate for surgery (YAY!) and prescribed Flexeril, a muscle relaxer. The pain only got worse, and I continued to wake up in the night with horrific pain. Ibuprofen didn't even touch it.

My dentist then sent me to a physical therapist, who didn't listen to a word I said. I came in on a "good" pain day: my pain level was about a 5 out of 10 (10 being the worst). After his examination and showing me how to do various exercises, he triumphantly told me that my pain level was now reduced. I said "No. My pain level is now about 7.5." He said he didn't believe me. He attempted to push me to go to his outside clinic to get "magnet therapy," and he tried to push me to see a friend of his who is a naturopath. Two days after this session, I was still in excruciating pain and doubt I'd ever return to this physical therapist, although he had me schedule 4 more 1-hour sessions with him.

I called my dentist again, and he called in a prescription for Tylenol plus codeine, which I can take every 4 to 6 hours. My dentist seems to have no further solutions for me.

My primary care is currently out of town, but I will see her when she gets back (in August); she may be referring me to a pain management specialist, which my dentist recommended--however, my dentist refuses to give me a referral to such a specialist, even though the specialist will take referrals from dentists or doctors.

I have been treated for many years for clinical depression and panic/anxiety disorder by my psychiatrist, and the meds have helped me immensely. On Monday I see my psychiatrist for my usual 6-month med check, and I'm going to ask him for help with the terrible TMJ pain. I have also had fibromyalgia and chronic fatigue syndrome for a long time. The fibro pain has greatly lessened over time and hardly bothers me, but the CFS continues.

The TMJ pain makes it difficult to concentrate. I'm self-employed, and I enjoy my work. But pain gets in the way, as it does in every single situation: work or pastimes. My dentist mentioned massage therapy, but I'm in too much pain right now to try it. Another friend mentioned using a TENS unit. I feel as though I'm not living; to be in constant pain is hardly living, at least to me.

Any other suggestions? Would a TENS unit help? I'm more than willing to purchase one. I'll try just about anything to be pain free. Sometimes I am pain free. But I spend about 2 weeks out of every month in serious pain. I am feeling very discouraged.

I developed earaches in September 2016. My primary care found no ear or sinus infection and sent me to an ENT, who diagnosed TMJ pain. I went to my dentist for help. He gave me weekly anesthesia shots into trigger points (OUCH!) and exercises to do, including massaging the trigger points and opening my mouth as wide as I could numerous times in the shower while my face was warm and wet. (I have been wearing a night guard made by my dentist for over 20 years; he replaces them as they wear out.) The pain continued and only got worse; it was at the top of my head, in my ears, in my jaw, above my palate (as though I'd eaten hot food). My dentist sent me to an oral surgeon, who did 360-degree x-rays and found no joint damage. He told me I was therefore not a candidate for surgery (YAY!) and prescribed Flexeril, a muscle relaxer. The pain only got worse, and I continued to wake up in the night with horrific pain. Ibuprofen didn't even touch it.

My dentist then sent me to a physical therapist, who didn't listen to a word I said. I came in on a "good" pain day: my pain level was about a 5 out of 10 (10 being the worst). After his examination and showing me how to do various exercises, he triumphantly told me that my pain level was now reduced. I said "No. My pain level is now about 7.5." He said he didn't believe me. He attempted to push me to go to his outside clinic to get "magnet therapy," and he tried to push me to see a friend of his who is a naturopath. Two days after this session, I was still in excruciating pain and doubt I'd ever return to this physical therapist, although he had me schedule 4 more 1-hour sessions with him.

I called my dentist again, and he called in a prescription for Tylenol plus codeine, which I can take every 4 to 6 hours. My dentist seems to have no further solutions for me.

My primary care is currently out of town, but I will see her when she gets back (in August); she may be referring me to a pain management specialist, which my dentist recommended--however, my dentist refuses to give me a referral to such a specialist, even though the specialist will take referrals from dentists or doctors.

I have been treated for many years for clinical depression and panic/anxiety disorder by my psychiatrist, and the meds have helped me immensely. On Monday I see my psychiatrist for my usual 6-month med check, and I'm going to ask him for help with the terrible TMJ pain. I have also had fibromyalgia and chronic fatigue syndrome for a long time. The fibro pain has greatly lessened over time and hardly bothers me, but the CFS continues.

The TMJ pain makes it difficult to concentrate. I'm self-employed, and I enjoy my work. But pain gets in the way, as it does in every single situation: work or pastimes. My dentist mentioned massage therapy, but I'm in too much pain right now to try it. Another friend mentioned using a TENS unit. I feel as though I'm not living; to be in constant pain is hardly living, at least to me.

Any other suggestions? Would a TENS unit help? I'm more than willing to purchase one. I'll try just about anything to be pain free. Sometimes I am pain free. But I spend about 2 weeks out of every month in serious pain. I am feeling very discouraged.

My name is Marilee.and I have lived with chronic pain for 11 years somewhat successfully but now.I have breast cancer and developed.arthritis on top of my chronic pain from neck surgery in 2006. Any tips for.bone on bone arthritis in knees?

My name is Marilee.and I have lived with chronic pain for 11 years somewhat successfully but now.I have breast cancer and developed.arthritis on top of my chronic pain from neck surgery in 2006. Any tips for.bone on bone arthritis in knees?

Hello Judy, @jujubbb Welcome to Mayo Connect. We appreciate your post about this rare condition. I'm sure that you must feel some relief to at least have a label to put on this chronic pain condition, especially given the fact that it is so rare. While I don't know if any of our Mayo Connect Members have this specific condition, we have a lot of people who deal with chronic pain. I'm inviting @johnbishop, a volunteer mentor, who also deals with chronic pain.

Has your doctor offered you any other treatment plans other than meds? Is physical therapy an option for you? We look forward to getting to know you better.

Teresa

Judy, @jujubbb I'm sure the chronic pain is more that enough - not having the neurological deficits is certainly a plus, though. Does this disorder often result in cognitive deficits or problems using your limbs?

Teresa