I have spells when my ears hurt and feel really full. the underside of my jaw hurts and it hurts behind my ears. Even the tops of my ears ache like crazy. The doc never sees anything when I complain of this. It is not sinus. Does anyone else have this?
I have a chronic earache in my left ear. I've even been to an ear, nose and throat doctor and they can't figure out what it is. And it can really hurt at times.
My 1st “suggested dx” in '92, after 1st visit w/ my now Retired but “famous Lupus Rheumy” Dr. Raphael DeHoratius, in Philly (he served as President of American College of Rheumatology in 90s, only accepted Lupus patients , etc., etc., just to illustrate that we believe he was Great!!) was Relapsing Polychondritis and Sjogrens: those symptoms re your ears are similar to a lot of what RP can do when inflaming cartilage, anywhere in ear or nose,but also in esophagus or as in costochondritis, the rib cage. If you look into that and all that Sjogrens involves, you can see if or that (hubby and I believe!!) your symptoms, even w/ a Lupus dx (one of my dx, w/ Sjogrens Type II and RA) you might get those
(Cont., sorry!!) and have them because of a Mixed Connective Tissue Disease or because of Sjogrens and Lupus symptoms being so similar or in an overlap situation. Dr. DeHoratius was so intelligent and full of “foresight,” predicted correctly about me, other systems and future problems: he drew a Venn Diagram (overlapping circles representing different Rheumatological diseases) and told us on first visit that many patients would present with a combination of things “wrong,” and that watching, treating, doing the blood tests, biopsies etc., etc., would ultimately settle or turn into the disease you (I) ultimately have as a full diagnosis. In 92, age 36, I had already had a decade earlier Raynauds and a seizure disorder (now gone or minor) migraines, serious sun sensitivity, and much of what turned into in my ultimately “big” dx’s: SLE and Sjogren’s Type II. I thought I had escaped the RA in my Family, but when my Hubby was dx’d w/ early onset Parkinson’s (H.S. Sweethearts, I was the one who got sick much earlier, but Hubby getting sick was a shock to all, even, esp. me, and so in 2005,6 I started showing presence of RFactor and CCP, an indicator of RA. Then the already awful pain started to really concentrate itself in symmetrical joint fashion, starting in my thumb, wrist area, like carpal tunnel, except I never typed! Then it went up and down my body , shown as symmetrical inflammation on a bone scan (I was at Dana Farber due to a soft tissue tumor we were making sure was benign, which it was, but I was really hurting even w/ my pain meds, so the docs did the scan, sent me over to Brigham Women’s to a Rheumatologist.
Please forgive this length: I just want to help, but never know what part of my Rheumatological history might help! So wishing you no pain, a solution to this, and lots of gentle hugs.
Love to All, Lizzie Burtiebee
I appreciate your info Lizzie! I wonder if that's what I have going on with my ear too, I never heard of polychondritis, my mom has polymyositis. I have not been officially diagnosed with lupus but my rheumy has me on a trial of plaquenil to see if that helps me. I have been sick for 20 yrs now with chronic fatigue syndrome, was bedridden for a while and I have many symptoms of lupus. I have frequent problems with severe shortness of breath but inside of my lungs are working great. Antinflamatories and prednisone help. The Drs have said It is pluerisi and or pericarditis. I was also told it could be mixed connective tissue disease. I will look more into polychondritis now. Thanks again, Alley
Lizzie, your post helped me too. I have been trying to find out why my ribs are so tender! Now I think I know. Thank you.
Thanks so much Lizzie and everyone else. I have the rib (and chest wall) pain too- especially on my left side. And I am talking knock me to my knees pain. All of my docs just look at me like I am crazy when I complain. The pain management doc I went to a couple of days ago ordered a detailed study (X-ray) of my ribs. I have had seizures in the past but not in ten years. And I just had a lemon sized tumor removed from my esophagus. I have all this history typed out in chronological order that I take to each new doc but I don’t think any of them has ever taken The time to read it. I keep hoping for a doc who will actually care enough to read it and to go over all my records. All of this to say that The tentative MCTD diagnosis is starting to make sense.
I say tentative because I got a phone call from my rheumys office saying that that was my diagnosis and that I needed to go to the ophthalmologist to get an eye exam for planned plaquenil use. So I went and then I Called the rheumys office to let them know that report was coming and I asked the nurse to make sure That the prescription was called in to my pharmacy. (They had the wrong one on file,) so then the nurse tells me that she is not sure if the doc is going to prescribe it and that she would discuss all this with me on my next visit, which is not for four months! I asked the nurse why I had to go get an eye exam (which is no hardship because he is a cutie) if I was going to have to wait to take a medication that might help me. She then said that the doc had made a note that my smoking would interfere with the test results (make them positive) and that it would interfere with the effectiveness of the medication. I quit smoking a year ago but did admit to her that I had smoked in the two weeks prior to seeing her. (I stopped the day after I saw her.) I decided to give it a couple of days to see if she called in the medication and she hasn’t so I am calling on Monday for an appointment.
I have a hard time believing that smoking for two weeks would give me positive ANA and CCP tests. Before I quit smoking, I had the same blood work and it was negative. And I had been smoking for 15 years. So if smoking just a little for two weeks can cause positive tests, why didn’t 15 years of a pack of day smoking cause positive tests results? It doesn’t make sense to me. Maybe someone else knows more about this than me?
That’s my rant for the day. Thanks to you all for listening and for all the good info.
Check for TMJ. I had earaches for weeks and was finally diagnosed with severe TMJ.
Was checked for TMJ (3 different times). I’ve been told all three times that is not it.
I’ve been complaining about left ear pain for about 2 years. It feels like a severe ear infection or something. One day it’s there and the next it could be fine. Funny that the cartilage was mentioned because that’s recently become an issue as well. I just had an ENT and an mri of the internal auditory canals to look for lesions. They found nothing. I have hearing loss also. I have also been told that I have tmj.
Elizabeth…you sound like you have a fabulous doctor. You are extremely fortunate in that regard.
So shouldn't a rheumatologist know to check for these things? I mean if we say we have these ear problems and a lot of the other autoimmune symptoms, you would think that it would ring a bell in their heads....Isn't this what they learned in school???
I love reading these because it so much more helpful than talking to the doctors. I had an earache off an one for several months. It was a pulsing pain that was excruciating. The doctors looked in my ears and said there was nothing wrong. Now I'm wondering if it is polychondritis. Thanks so much for all of your wisdom. What would we do without each other?
Haha Alley! Yes, you would think they would. But mine is always in such a damn hurry. I am making an appointment with mine and I am going to hand her my list of questions and sit there until she goes through all of them with me. I was given my diagnosis of MCTD by phone (by the nurse) and then was told by te nurse that the doc would talk to me at my next appt in four months. Seriously? Why should I wait four months to get questions answered and why am I being treated like this, like I am a pain in her backside? I am freaking paying her to do a job and she should do it! If I have to get my mother in law to go with me to the doc to make sure I get all the answers, I will. After being told it was all in my head for so long, it is a relief to finally get a diagnosis (other than a psychiatric one) and I want answers. Hope you all have a great day. Hugs, MB
I just wanted to post quickly a BIG “I am sorry,” and a big thank you for (I hope!) forgiving me my lack of return replies here; I will try to just say very little so this will be posted! And then when I wake up I will see you all heard from me like you deserve! I really felt I should answer the possibly Polychondritis question because it was so close to my experiences; but I have been slow to “show up,” and slower still, to respond here (I didn’t open ip fire until last night!!), because I am in bed (and up too!) w/ bad case of MRSA pneumonia, which is another story in itself. I should post so much more, but more, I should be sleeping!! You all just said such nice things: Thank You !! OR You all asked me Impt. Questions. I promise to answer everything after I have had s chance to sleep and recuperate more! I apparently was sick w/ this previously in curable infection for a year and a half; but they finally did hear me that something bigger than they were considering was going on. And thank Goodness because there is only one antibiotic that touches this pneumonia that I have, Zyvox. And I didn’t get to start it until 3 days ago due to it requiring my stopping other medications I take, having them out of my system 2 weeks, etc. “it’s been a wild tide!!” I will return I PROMISE!! And I thank you, and Apologize again!! Love and Good Health to All, and I am sorry again, especially if I posted this several times!! Elizabeth oxox <3
Ohhh Elizabeth, sending you healing prayers and lots of hugs and love....we understand you XOXOX!!!
MBPP, you made me laugh out loud when I read the part about bringing your mother-in-law along. My husband goes with me to all my important appointments, but on the occasions when he is out of town, my mommy-in-law goes with me. She is a retired nurse, less than 5 feet tall, very sharp and quite spunky. Her friends nicknamed her "Slugger". I usually get way more answers with one of them with me.
MBPP said:
Haha Alley! Yes, you would think they would. But mine is always in such a damn hurry. I am making an appointment with mine and I am going to hand her my list of questions and sit there until she goes through all of them with me. I was given my diagnosis of MCTD by phone (by the nurse) and then was told by te nurse that the doc would talk to me at my next appt in four months. Seriously? Why should I wait four months to get questions answered and why am I being treated like this, like I am a pain in her backside? I am freaking paying her to do a job and she should do it! If I have to get my mother in law to go with me to the doc to make sure I get all the answers, I will. After being told it was all in my head for so long, it is a relief to finally get a diagnosis (other than a psychiatric one) and I want answers. Hope you all have a great day. Hugs, MB
Well, Artchick, your mom in law sounds as spunky as mine. I hate to bother her with my stuff but sometimes I have to, especially when i cNt drive because i am too dizzy or too weak or both. My husband is useless so even if he weren’t busy sleeping or drinking, it’s better to go alone than have him along. I am so grateful that I have mom #2 to help though. I am not sure where I would be without her.
Is it on one side of your face normally then maybe switch to the other side? I recently went to the GP swearing I had the worse ear infection/eye infection, sinus infection ..... nothing was there. pain all in my face on one side and down jaw and neck. She said shingles ... lol ... was not shingles. Therefore, it seems to be some type of neuropathy where the nerves send signals to one side, then the other so you feel extreme pain but it is just the nerves. hopes this helps.
Thanks Tootles,
It is generally on one side and just as you described. Even my teeth will hurt when it happens. But, as you said, there is never anything there- no sinus infection, no problems with my teeth, etc. So frustrating. One doc called it Trigeminal Neuralgia. I guess it could be that. Have a wonderful day.
MBPP - You are not alone; I have been experiencing it again the last couple of days; really have to hold back going to the doctor for it .. Yes, that is the name she used, as well.