I am having daily ear aches with pain behind my ear going down the side of my neck. Is this the pain everyone else is having? I am also experiencing pain in my tongue. Does anyone else have this? The Drs. cannot figure out what the problem is. I also have Fibromyalgia. I feel like a mess! I'm always hurting! Thanks for listening.
Hi Judy, I also have pain behind my ear going down side of my neck. You wrote to me earlier about your fibro - does anything help that? Perhaps you have an inflammatory condition like me.
Yes I get pain in those areas too, plus under my jaw, down my neck, toothache... I was told that the tongue pain is because the tongue is attached by ligaments to the styloid process so if that's hurting, your tongue moving about can hurt too. Depending on the angle of the styloids and what they press on- nerves etc.- varies what pain we all have. I sympathise with you if you have fibromyalgia too, and know what it feels like to be always hurting. You will get plently of support for that on here!
I feel your pain, I do also suffer from Fibromyalgia for about 12 yrs when it still wasn't cleared what was causing my constant pains. I do have ear aches on my left ear, like ear infection and behind the area going down my neck on the same side. Tongue is ok, so far I can still scream in the cafeteria to call out my students attention, lol.
Tomorrow I'll be having a CSCAN for my neck area, doctor wants to confirm how long is the styloid, cause he trust It's not elongated styloid but more calcified stylohyoid ligament, concentrating on the left side, with/without contrast. I do hope they find something, cause it's nerve racking when pain is there and you know you have the pain, but doctors can't find nada.
Feeling like a mess is usual for us with Fibro, but we need to make our day count. Keep moving, it's vital, eat well, walk and get plenty of rest, even if you only lay down and catch up with the sleep later. Hope this helps you, I will confirm my diagnose by next week once I get the results.
Enjoy your day by making someone else's a positive one.
I have constant pain in my throat, ear, neck and sometimes my tongue. The tongue more often tingles than hurts though. April, how long have you been having this pain?
Hi Christian, and also Judy
I haven't had this pain for that long, I have many, many others. Like Judy and Ronnie I have pain in many places, the facial pain I have had for a long time has been diagnosed as burning mouth syndrome and also possible nerve pain from sinuses and other issues I have stenosis in my neck so and lower back and have gotten pressure point injections a lot, but now I need something more radical. I haven't worked in years, we are broke and old and I am really depressed now, feel like the person who wrote the other day he wants to give up. My life consists of going to one doctor after the other.
The eagles is super frustrating as it is a sharp pain, NO ONE but my ent knows what it is and he refuses to do anything about it, no CT scan, he just feels around and I jump off the chair in pain and he says find a pain doc and I will tell him where to inject, It is all so depressing,
Thanks for asking and Judy I am sorry if I wasn't more supportive about the fibro, I think they often misdiagnose people, I have seen people with very different symptoms told they have fibro, my pain doc keeps saying I have it but the other docs say it is an inflammatory/autoimmune even though bloods are normal, because the neuropathy is evidence of that. Look up small fiber neuropathy. Anyway, they are trying to get me IVIG which I think will not happen because insurance already said no once, and I am refusing steroids because of other issues which has really p/oed my rheum to the point I need a new one.
I take percoset and advil and also benzies and I don't know my name. The drugs help somewhat but I think I am newer at this then the rest of you.
Best to all of you, would love to hear more about your experiences.
Hi Judy! I have ES on the right side and it has been playing a fierce tug of war with the left side of my neck, jaw and ear, down into my shoulder/clavical area. It has caused tmj and inflammation in the connective tissues of my neck, around my ear and into my temple. I too felt like a mess! Like an alian! I wanted to share that I have been feeling relief the last two weeks since starting Craniosacral and Mayofascial Release therapy. I tried several different practitioners and found one that really works for me. She even does mayofascial release of the hyoid bone which is soooo helpful. I have found that these two forms of therapy are really helping relax the muscles, tendons, tissues, and makes them more supple, increased blood flow, etc. My muscles/tissues don't feel stuck any more! I've tried other forms of therapy, PT, accupuncture, etc and have not had any positive results. But this is working to provide much needed relief! I have had 4 sessions so far and Im planning to go 2x per week to see just how much improvement is possible! I believe that these two forms of therapy are also good for Fibromyalgia. Have you considered Craniosacral and Mayofascial Release? Best of luck to you! ;-)
What is the difference between craniosacral and myofascial? I have had the first, which just relaxed my whole body, but not the second. Thank you
I have the same issues. Anticipating a long, miserable winter because cold weather makes it worse. Oral surgeon says it is glossopharyngeal neuralgia. I believe I also have trigeminal neuralgia. He says the cause is most likely MS, but I ruled this out once many years ago. Also believes it could be some other autoimmune issue. Going to a neurologist Monday 11/3. Will keep you posted.
Thank you all so so much for your replies! I greatly appreciate hearing from you all. I have been having PT consisting of Myofascial Release for my Fibro and my spine. I told her about the Eagle Syndrome and so she started working on that, too. I hope it brings relief. I have Bilateral ES, but, fortunately, only the right side is hurting. I just can't figure out what's going on with my tongue (and neither can the drs.) I didn't even know your tongue could hurt! I'm going to look up some of the things you all are talking about....trigeminal neuralgia and glossopharyngeal neuralgia.
I am on many medications for my Fibro.......Savella, Nabumetone, Paroxetine, and also high cholesterol and BP meds. And I just received a pain med from my rheumatologist. I think it is Percocet. He was very nasty about giving it to me and made me sign a paper saying I would not get pain meds anywhere else! He made me feel like a criminal! I said I'm trying to recover my life, not make it worse!
Thanks for listening, Judy
Judy, could you have burning mouth syndrome?
The past 2 days Ive had joltz of pain on the right side of my neck...which is also the side of the calc in my throat. Do you get those type of pains. Lil pricks of pain down the side of your neck?
It is how they diagnosed me with small fiber neuropathy - well, actually they biopsied nerves in my leg because I had burning mouth syndrome. My mouth sometimes literally burns and it is super painful and I know for some people it affects the tongue. I have had salivary gland issues too and dry mouth and they should check you for sjogrens as well, my tests were negative but they say it is possible I still have it. You can look up on internet. Klonopin helps with burning and I take stuff for dry mouth as well. But maybe yours is all from ES? I hope you feel way better soon, Judy I really do.
Thanks, April. My problem is each Dr. says something different. One said I have Sjogrens, then my new rheumatologist said no, I had a good amount of moisture in my mouth. The thing is.....I'm on medication for the dryness, and yes it works, so now, the dry mouth is limited. Is he not smart enough to figure this out? I swear they only hear what they want to hear! The painful tongue is very disturbing. I have an appointment Monday with a physicians ass't at my ENT's office, so we'll what they do.
Jules.....I don't think that's it. Mine doesn't really burn, it's more pain. Thanks, tho! I have an appointment on Monday, so we'll see what happens then.
Judy, could you have burning mouth syndrome?
What is burning mouth syndrome? I get a lot of problems from dry mouth, and my tongue burns. I have a lot of pain and at time a swollen sub-mandibular salivary gland, same side as the ES is worse, so don't know if that's connected or if there's something else....so many of us seem to have multiple things going on!
Hi Judy, I also have ear, neck pain and numbness around my lips.
Plz check out ernest syndrome. Fibro may be a different issue. I thought i had eagle for many yrs. turned out to be ernest syndrome that caused nerve damage bc it went undiagnosed so long
Yes, I have this kind of pain and sometimes (especailly in the beginning) would slur when I talked because my tounge wouldn’t work right!! I have a deep pain in my ear that goes around my jaw, down my neck into my throat down my neck down my arm. At times when the pain goes down my arm, I can’t hold a pen. I too feel like a mess. I have been diagnosed with ES, tonselitis, TMJ, migraines, and it has messed up my thyroid so bad that I have a pretty nasty case of hypothyroidism, which causes its on set of problems!!). Everyone that I go to says NO, it’s not ES it’s…(one of the symptoms ES has caused). They all want to treat the issues, not the problem! Hang in there! This group of people are AMAZING and have given me the help and the stregnth I need to keep going in my surch for help!! xxxxoooo