mom i also have tmj and have the same thing i was told that when there is swellin in the jaw joints that is press on the ear canal and that what the hearin loss comes from i also get the feeling like somethings in my ear tickiling it almost or feel like i have an ear infection . my mediciade wont pay for tmj they only thing i get is steriod inj for the jaw at pm becuase i get lock jaw so bad that only general anesthia reverse it ]
this possible the cause

Hi Carrie,
My TMJD has been a thorn in my side for 4 years now. I have not missed a day during that time having to take Advil constantly for the pain (yes, to all....have had a liver and kidney screen that showed no damage....yet). I wore the custom mouthpiece made for me by a TMJ specialist for 10 months. My symptoms got worse. I was referred to a surgeon. He did the arthroscopic lavage (under brief general sedation) and an injection with steroid that locked my jaw shut for 2 months. I was on a liquid diet twice that long until my teeth started feeling loose and I gave it up.

There is NO cure or reliable treatment for TMJD. You're not missing anything but a lot of extra tests and expense. Thank goodness a tomogram showed that I was not a surgical candidate because I was one step away from having a condylar repositioning (where they go in and file down the bone to fit differently in the joint). That was just last September.....three months before my RSD started.......I feel certain I would have gotten full blown RSD in my face.

I am CONVINCED that there is a link between my TMJ pain and my CRPS. My ear hurts CONSTANTLY and I have always described it as a burning, searing pain......like someone has stuck a hot poker in my joint (LONG before I knew anything about CRPS). It happens to be on the same side of my body as my CRPS (in my left ankle). I can take my temperature with an ear thermometer and the temperature is several degrees warmer in that ear than the other in the absense of an infection. I just can't "prove" it or get anyone to pay attention to the possible connection. Other people on the forum have posted articles suggesting there is one, however.

I am so sorry for your suffering. I TOTALLY understand your pain.....and the chronic pain that you endure.....not just from the TMJD but from the CRPS as well. Are there any more acronyms we need to include in here???

Best wishes to you!!!

Hi Mom, hi Carrie,

Mom, I think it is quite interesting that you have the TMJ on the same side as your RSD because I do too. My rsd is in my left foot. I've never had the TMJ quite as bad as you have described it but I was told that I have arthritis in the jaw after my tomogram. I have lots of crepitus noise and it is hard for me to hear people talking at the dinner table when I'm chewing. I have trouble opening my jaw wide, I have to cut my food into small pieces and avoid anything too chewy. I was told long ago that surgery would never be an option so I've just lived with it as best as I can. I where the custom mouth guard and find that warm moist heat works best to relieve the pain when it gets severe. Carrie, what side of your body is your RSD and TMJ on? I never thought about having steroid injections for TMJ, I think I'll try to get one if my TMJ flares up badly.

Right after I had the surgery (bunion) on my left foot I developed rsd. My foot went ice cold, burning cold and the pain was relentless, a big purple shinny burning foot. Also at the same time I developed a large boil type cyst on my face right where my ear and jaw are located, at the base of the earlobe. At the time I was quite disturbed by it as it really hurt and ultimately needed to be drained. Thinking back on it now perhaps my body was fighting an infection following the surgery? Because my TMJ was pre-existing to the RSD no doctors seem to pay it much attention either.

My physio therapist will often work on my neck and shoulders for me which is a big help. She taught me to keep my tongue on the roof of my mouth, just behind my teeth, this seems to keep my jaw in a relaxed unclenched position. It does help.

Some days I feel like my whole left side of my body is flared with RSD as the pain ping pongs from joint to joint including my jaw up and down my body. I do not have any of this on my right side. My doctor doesn't say much about this other than I should keep warm and keep moving. It's frustrating isn't it?

Wishing you all much peace and joy today.

MsL

Hi MsL,
Wow.....that is TOO ironic about your RSD/TMJD on the same side. Even after MY ankle surgery (when I had RSD but the docs hadn't diagnosed me) I was in SO much burning pain in my ankle I was on 2 Vicodin every 4 hours (on the dot.....I would sit and cry until I could take my next dose), I STILL had to take Advil in addition to the Vicodin for the TMJD pain. It is constant and more intense than my RSD pain most of the time. It comes on in a matter of minutes (like 2-3) and I race to take 3 Advil and sometimes just sit and drool into a tissue (sorry, I know that's gross) because it hurts too badly to even move my mouth to swallow. I get awful muscle spasms in my neck, too......sometimes for days on end and can hardly hold my head upright to walk.

I take a muscle relaxant at night to keep me from tooth grinding, Klonopin to relax me, an antidepressant, and a strong sleep aid. I just went back on the Lyrica last night because my foot/ankle/leg have started hurting SO badly. Yes.....it seems to move right up the left side of my body but not in my arms or midsection. My RSD has already spread to my other foot, so my right leg aches and hurts too.

Talk to me before you break down and have the injection. It is FAR more serious a procedure than I expected. They didn't tell me until afterwards that I had to be on a strict liquid diet for a month. I didn't eat anything harder than soft cheese for many months. It might break up adhesions in there if you have any......but I would be REALLY, REALLY careful before having the injection with RSD during a flair or while you're having symptoms. Also, it didn't help me at all. Not at all. I had mine a year ago in January.

Thank you SO much for sharing your similarity with me!! Yes, warmth does seem to soothe a bit. I put my cup of coffee against my ear sometimes!!! Massage has proven helpful (and relaxing!!) as has accupuncture and chiropractics. I cannot afford any of the above treatments at the time, but hope to get further treatment ASAP!! And yes, I've heard the same thing about keeping the tongue on the roof of the mouth. I don't tend to clench (during the day) so it's a pain to remember to do it. I'll try to make it more of a habit and see if it won't help. I am desperate!!!

Do you think it could have been an RSD lesion on your face after your bunion surgery??? I know that typically doesn't happen until later "stages" but NOTHING about RSD surprises me. I STILL think there is a connection between the two conditions......even more so now.

Best wishes to you that you get BOTH conditions under control!!! Talk to you later!!! Keep in touch!!!

OMG I'm so sorry to hear that your pain is so bad right now. I believe you said you have had rsd for the past 2 months. That being the case I'd like to caution you against drinking coffee. I know it is a hard habit to break but caffeine and RSD do not make good friends.

I know it is very difficult when we can't afford the treatments that we need. I lost my extended medical/dental coverage when I lost my job 3 years ago. Fortunately we have some relief with our medical care system here in Canada but it is certainly not the cats meow. Waiting lists are long, most Canadian allopathic doctors are somewhat arrogant and the medical system does not support functional wellness medicine in practice. At least I'm able to get my Lidocaine infusions and for that I am very grateful. They have helped me to get back up on my feet again. I hope to be able to return to working again in the near future.

I'm concerned for you and I hope you are able to get some help in this early stage of RSD. Are you able to get any blocks? In the meantime try to follow the 4 F's diet. Perhaps you have seen it already but here is a link just in case you haven't here it is.
http://rsdrx.com/four_f's_diet.htm

I am following an anti inflammatory diet outlined in Dr Leo Gallands book the "Fat resistance diet" I think it has been very helpful in my recovery of recent surgery that was to remove the metal screws from my rsd foot.

I have learned not to take all the pharmaceuticals that get thrown my way by doctors using the shot gun approach. Don't get me wrong there are certainly many drugs that are sent from heaven to help us with our pain. But I found in the first stages of my rsd I was given so many drugs that I didn't know if I was coming or going and I was desperate for relief. I had some serious repercussions due to allergies as a result of that approach, my tinnitus being one.

It is very nice to meet you here even though it is under these circumstances. You have a very warm and caring personality.

I gotta run because my cats are making to much noise begging me to feed them. They are too funny, one actually sits on his hind legs and begs me like a dog.

Be good to yourself, moms often forget to care for themselves being busy taking care of others.

MsL

You are so sweet!!! I have two kitties too. One begs like crazy to be fed (and meows constantly.....we try to "train" her to sit her butt down and be quiet by shaking a can with coins in it.....she's trained US to feed her before she causes any permanent damage to us!!!). She will wake us up by JUMPING ON OUR HEAD in the middle of the night if she is hungry. She is lucky we don't eat CAT here in this country!!!

I am bad about my diet, I admit it. I am thin and enjoy eating (a paradox, I know). I am hit and miss about healthy.....I eat salmon and steamed veggies for dinner and then have a big piece of cake before I go to bed (she cringes....admitting the ugly truth). I don't drink much coffee (all things considered) and I do drink half caf (and only Starbucks.....does that help any???).

I have four kids, no life, no friends, hubby has no job (lost it a year ago).....I can't give up much more than I have already right now!! I'm hoping my life will settle down soon and I can get back to living and taking better care of myself. It is all I can do to get through each day without losing my mind right now.

I had the series of nerve blocks (5 or 6) last month. They got the swelling down, got the pain under control, I was doing REALLY well (other than the spread to the other foot) until a few days ago. It is back with a VENGEANCE. I just tried to walk down the stairs and NEITHER ankle wants to work tonight. I sit with my meds beside me as I type ready to fill up my med container (and myself) and hopefully go to sleep ASAP to escape. The nights are ALWAYS more painful than the days. I am actually not taking anything extra for the RSD except the Lyrica than I was beforehand (maybe a few more vitamins and minerals and grapeseed extract).

I have heard about the problems you have in Canada getting into see doctors in a reasonable time frame. I can tell you that we have had COBRA since hubby lost his job a year ago (that is where you can get an extension on your medical benefits, you just have to pay for them out of pocket) and it is $1300 a month for family coverage. Can you believe that??? Who can afford that??? That is a mortgage payment!!! So....it is all we can do to stay covered in case of catastrophe (which would be considered something WORSE than RSD apparently) and we cannot afford for me to actually get any more treatment. Ridiculous.....

Thank you so much for your kind words and support!! I am happy to get to know you too!!! I learn so much from everyone here every day and am SO grateful to be involved with such a caring group of people!!! Best wishes to you!!! Give your kitties a pat for me!!! Talk soon!!!

my insurance wont barely pay for anything regarding my tmj. mine in the last 2 yrs hasnt been that bad thank god . like you i used to get lock jaw i was on liquid diet 3 mths before i could get some one to open it back up i was mad to say the leaset. but i do get the ear pain all the time . had the mouth piece made and liek you made it worse. my biggest problem with having full body rsd is that not many other docs want to mess with me on many things they just blame my rsd which is bull.but i get that throbbing and burning in my ear
what else have you done for treatments that have helped

I have had NO treatment that has helped.....other than the acupuncture and chiropractic adjustment (once). I was able to go 24 hours without pain after that. That was the only time in 4 years. NONE of the more invasive treatments helped at ALL. I live with this pain all the time. It hurts now, and it's too soon to take more Advil. I try to just push as hard as I can into that joint and hold it for as long as I can. It doesn't help long-term but it numbs it a little while I'm doing it. I'm telling you.....it is horrible. I wish my docs WOULD consider it being RSD. I think it is now that I have it and know what it feels like. My tomogram showed some bone abnormality but not requiring surgery and they said the degree of pain I am in does not match the clinical findings. Hello??? RSD????? My ear is not red, though.....nor is my face or neck or anywhere else above my waist (or knees for that matter). It has been a disheartening, frustrating, endless journey. I have given up on being treated for it now. I just live with the pain. I'm sorry you are having to as well!!!

I can hear but have a lot of ear pain on the one side. I thought it was from the severe eye pain I have but now not sure. I have been to ear specialist,gp,pain docs etc. It feels like a lot of pressure,burning sometimes,and like someone stuck something in my ear. I don't have a lot of advice other then I too need to go back for another mri of my brain.

Actually, my hearing has improved since I stopped taking a muscle relaxant during the day (I suspect now it was a combination of blood pressure and a sinus infection getting started). I still get that fluid feeling and sound in there (I just started antibiotics for the infection last night).

The eye pain could be caused from the TMJD as well. Also, the trigeminal nerve runs from your ear to your eye, nose, and mouth (approximately) so if anything is pressing on that along that nerve, the pain can be felt on that whole side of your face.

I had a detailed Tomogram, which is basically a bunch of specialized and detailed xrays.......like, 50 of them. It took over an hour. All it did was show degeneration in the bone but that I am not a surgical candidate. There is nothing else they can do for me.

I think we should consider a strong connection in the TMJD and the RSD. The pain is so similar in both and I have proven bone degeneration. I cannot afford to follow up with anyone at this point to confirm, but will as soon as I can. I cannot live with this pain for the rest of my life.

I could be wrong, but I think MRI's are useful in looking closely at soft tissue and contrast, while xrays (or the equivalent) are best in viewing bony changes.

Which came first for you?? Your RSD or your TMJD??? How long have you had each??? I am very interested in the possible connection.

I am SO sorry for your pain.....I totally understand it. It makes eating, talking, even flossing your teeth painful. I pay dearly the next day if I eat anything crunchy. Please take care and I really appreciate your input!!!