Chronic Pain

Hi all.

I'm still pretty new to TMJ friends, not TMJ though. Like many of you, I've gone to loads of docs. But I'm in so much pain the past week, and am so dizzy that I can hardly drive, my head feels like it is in a vice and I nearly throw up after I eat (I think from the motion of my jaw). I have NEVER been this bad. Went to my general doc and he said there's no one he can send me to - that he has sent me to all the specialists and he just doesn't "get" what is wrong with me (and none of the specialists figured out it was probably my jaw). New dentist (seems great) is making an NM splint Thursday, but must wait two weeks after that to get it back. In the meantime, how can I work? And, I'm so worried that my jaw joints are falling apart, but no one has done an MRI. Should I show up at the ER and just camp out until someone takes some images of my jaw? My general doc wouldn't order an MRI b/c he says my insurance won't pay (and probably wouldn't). But, if I go to emergency room don't they have to help? I really feel like I'm losing my mind, and hubby seems to be losing his patience watching me in pain.

Any advice is so appreciated.

Alorcoy,

All my opinion... If you are not getting the attention you feel you deserve (and YOU DO DESERVE IT), then I personally would go to the ER...

Not to scare you, but my first 3 months w/ TMJ diagnosis (over 10 years ago) I went to the ER every other week.. I was in SO much pain.. My neck was in constant spasms and I had endless headaches... This was 10 years ago, so the attention to TMJ was VERY limited... But now, I'd hope if you went in and explained the situation they'd take you more serious than your general doc.

Thinking about you and hoping you can get some relief and attention !!!

Tami

Alorcoy_

Welcome… Glad to see you made it over without any problems.

I am so sorry that you are going through this. I know how awful it can be. I am going to ask a few questions, if you don’t mind…

1. Have you considered seeing a neurologist?
2. How are you treating the pain?
3. Did you NMD do any imaging?
4. What types of doctors have you seen to treat your TMJ?
5. When will your splint be ready?

I know it’s hard to imagine, but often times there are many things triggered by the TMJ and it usually requires a multi-discipline approach. Personally, I see an OMS, naturopath, immunologist, pain specialist, neurologist, gastroenterologist… you see my point. The team approach seems to provide the best relief for those of us who suffer from this.

You asked if camping out in the ER will get you the appropriate testing you feel you need. I am not sure that’s a yes or no answer. I think it would depend on the facility having an OMS on call to order the correct views, and be available to read the films. Additionally, most radiologists are not trained heavily in TMJ. None of the OMS’s I have seen use the radiology report as a guide, as they are looking for different things within the joint space. If you really feel this is necessary, I would seek another opinion with a discipline you know will order one for you.

In the mean time, moist heat really helps (Make a rice bag using a tube sock and filling it with rice. Knot off the top and microwave it for 45-60 seconds… until it’s hot, but not too hot. 20 minutes on, then brush over the area with an ice-cube… and repeat until you start to feel some relief).

Do you have access to a gym with a sauna available? Far-Infrared heat therapy really helps!!!!!!!!

Do you feel better after you get sick? Does your headache calm down a bit?

Why don’t you journal your pain for the next few days.
Where the pain is
Type of pain (describe it)
Environmental Trigger
Temperature
Symptoms that radiate (neck is tight, arm cold, tingling, hot sensations…)
Other symptoms (sensitivity to light, nausea, smells…)
Time of day

Another thing you may want to try is putting an old-fashioned round candy in your cheek to help you from clenching. It helped me a lot, especially at night.

I understand how hard all of this is, and how frustrating it is for you to watch your husband so frustrated!!! I have been there. There are just times when we need to take a step back from it and assess the situation from a different angle. That’s not always easy… especially when you are in the throws of it.

Breathe…the answers will come. Please keep us posted………….

Hi there,
The key here, is that if you do not think you are being taken care of, you have EVERY right to go to the ER. If you live in a large city, chances are that an oral surgeon will be on call at the hospital you go to.. however, I would not expect on them calling him or her unless your images show a break or other trauma. Usually, their concerns include making sure your pain is under control and making sure nothing is really broken or wrong. The might do an MRI... You can ask the doctor if he would do one.
The bottom line though, is that if your pain is out of control, you deserve help.
One of the hardest things we all face is when to go to the emergency room and when to just wait it out.
Tomorrow is Monday, do you think you could call your doctor tomorrow morning and tell him what is going on?
Stacy

Thank you all.

I think I needed to hear that I deserve to get the care no matter what. I am calling the pain management doc tomorrow, since he is, after all, supposed to be managing my pain, and insist that he see me. I had an RF procedure (C3-C7) done about five weeks ago and the pain management doc said he didn't want to see me for eight weeks after. Obviously the RF didn't work and I need more attention, right now. Thanks for giving me enough attention/advice to hang on until tomorrow. Now, if I can just get through for three weeks until NM splint arrives (with prayers that will really help).

Thanks again - this weekend was so rough - good to know others understand.

I certainly understand. It's a frustrating thing to go through.

My OMFS made an interesting point about his view of TMJ pain. He told me early on that he can't tell how much pain someone is going through. Take two patients with what look like identical problems, one might be able to tolerate the condition indefinitely while the other might be in unbearable pain. He made it clear that I had to tell him what I was going through.

Hopefully, if you lay it out for your pain management doctor, they'll understand and come up with something that will help.

Good luck.

Hi there,
I'm so so sorry to hear what you are going through!! I really hope that your appt with your PMC doctor will help him/her to see the light and help you to get the relief that you deserve. NO ONE should have to suffer like that just because the doctors don't understand what exactly is wrong. IMO, if they don't understand what is wrong then send you to someone who will understand and then treat you for it. I wish you the best of luck with the docs and hope you find the relief you need SOON!
In My Prayers,

We all understand and we are all here for you !!!! Keep us posted pls !

Tami

quote:

Originally posted by alorcoy:
Thank you all.

I think I needed to hear that I deserve to get the care no matter what. I am calling the pain management doc tomorrow, since he is, after all, supposed to be managing my pain, and insist that he see me. I had an RF procedure (C3-C7) done about five weeks ago and the pain management doc said he didn't want to see me for eight weeks after. Obviously the RF didn't work and I need more attention, right now. Thanks for giving me enough attention/advice to hang on until tomorrow. Now, if I can just get through for three weeks until NM splint arrives (with prayers that will really help).

Thanks again - this weekend was so rough - good to know others understand.

An update:

Pain doctor refuses to see me, his office says he doesn't "do" jaw issues.

I called the new dentist who is getting me in a day earlier (Wednesday) to do all the imaging and fit me for the NM splint. They were very kind and gave kind of a "hold on there" pep talk. They told me to go to the ER if I just can't get through the pain.

Told my bosses that I will be out quite a bit over the next couple of weeks and they seemed OK with it, but not real pleased. That was so difficult to do, especially while in pain. I felt like I was going to start bawling, which would have been bad, bad, bad in my biz (I'm a reporter - gotta be tough, right?)

Thanks again for listening. I'll update after Wednesday.

That's fabulous... I'm thrilled to see that you are getting the attention you rightfully deserve !!! Good luck on Wednesday.

Tami

They don’t ‘DO” jaw issues… isn’t chronic pain what they treat regardless of where it originates?

I am so sorry… Is there another pain doctor in the area that you can see? Can your GP help you? I know they don’t like to get involved with opiates, but you do NOT deserve to be left out in the cold to try and manage this by yourself. No one does.

If the pain is out of hand, you should go to the ER. I misunderstood your original post. I though you were asking if they would do the appropriate testing for diagnosis. Pain is pain… and needs to be managed. If going to the ER is what you have to do… I would do it in a heartbeat!

I am glad to hear that your dentist is fitting you in a little early. Maybe they will have a few tricks up their sleeve that will help while you are waiting for your splint to arrive.

Please keep us posted……………..

My God! They don't do jaw issues??? I for once am just thunderstruck! Yes guys and gals mark it down I am at a loss for words. I just don't quite know what to say without blistering everybody's ears with uh hum "bad words". Isn't pain, pain regardless of where it comes from? What's the difference between a bad disc in a knee or back than in the jaw? I for one don't understand what the difference is and why TMJ should be such a stigma. CHRONIC PAIN IS CHRONIC PAIN! I am so sorry to hear that they said that to you. I can't imagine what you must have felt when you were told that. I am absolutely furious for you. I'm really happy for you that your dentist is trying to help and I hope they can find you some relief very very soon. I do hope though that you do try to find you a new PM doc.
Best Wishes,

You explained my anger and disappointment well Chrissy. You can imagine some serious tears were shed after that call. Thankfully, whatever was flaring up has calmed down some (I'm not throwing up with pain anymore) and I get fitted for a neuromuscular splint today. I have prescriptions for muscle relaxants and painkillers, but I was trying to work so wasn't taking them much. Now, I've just decided to use up some of my short-term disability until more answers come.

Also, what do you think of this: I plan to buy copies of the TMJ survival guide and send it to some of the doctors I've gone to (one even took out my tonsils and then wanted to move on to my septum - telling me those were the problem --ahhhh!). No harsh words, just a bit of extra education for them. Is that too much? I just hate to think of anyone else spending years and going on wild goose chases like I have -- I'm sure like so many of you have.

While it's disappointing that a pain doctor would say no to treating TMJ pain, I don't think it's shocking. I know I'd rather not have a doctor treating me that doesn't feel comfortable treating my condition.

I don't know how other pain centers work, but the one I go to specializes in TMJ. They don't write pain med scripts and send people on their way. They use splints, muscle relaxers, suggest exercises, prescribe PT, do EMG and so on. I don't think it's fair to their profession to say pain is pain.

There's several OMFS doctors in my town, but only one treats TMJ patients. Again, it's surprising, but I wouldn't want to see one that isn't experienced with it.

Alex,
What sort of doctor are you seeing? Are you seeing an OMS that specializes in TMJ? From my understanding with Alorcoy, she is/was seeing a pain management clinic. A pain management clinic is there to treat ppl medically with chronic pain. Their job is to help ppl with chronic pain learn to live a better quality of life with medications that GP's can't prescribe. One other thing, why was the doc treating her in the first place, when they do a whole medical history when you go and why you are referred to them, so in other words why take her money all this time and then turn around and then say "they" don't do jaw problems when that's why she was going in the first place. If they're not qualified to treat you that's one thing but at least be up front about it, before you dish out all the cash.