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Eagle Syndrome - Online Support Group

New here....fatigue and stiffness vs Pain?

Hey there, new here. 51m diagnosed with ES and Fibromyalgia 18 mos ago.

Had neck pain and swallowing pain that was finally diagnosed after a CT showed telltale eagles…

I’ve had a history of mild TMJ although a year ago I started getting major painful “first bite” painful clicking shocks.

That all faded away and I was pretty good for over a year.

About a month ago I started feeling jaw fatigue/stiffness and it has slowly ramped up. I now have bothersome jaw fatigue along w base of tongue “fatigue”. I can’t tell what it is…since it also makes me nervous I know I’m clenching in to a day and night Bruxism situation that could also be causing or exacerbating this (thanks covid 19 and my hypochondria!)

I also have a history of cluster headaches.

Anyway I’m wondering if anyone else has symptoms more along the Fatigue lines vs pain?

Thanks!

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I’m sorry to hear about your diagnosis. I have fibromyalgia, tmjd and also Trigeminal Neuralgia. The clicking is annoying and painful primarily on my right side. The cluster headaches I can identify with. Mine sometimes radiate above my eyebrows or behind the base of my skull.

Also, I do have fatigue and pain. Finding out about the ES last year really upset me because of the fact that there isn’t much that can be done about it. Do you get coughing fits from ES?

Hi shel,

The pain you describe that radiates above your eyebrows or behind your skull base is most likely coming from ES & will probably stop once you have your styloid process(es) &/or stylohyoid ligament(s) removed. The trigeminal nerve is likely causing the forehead pain & there are several nerves that could be causing the pain at your skull base. Trigeminal neuralgia & even the symptoms of fibromyalgia have been known to decrease or be cured after ES surgery.

The symptoms of ES are caused by irritation of up to 6 cranial nerves that “live” in your neck in the same area as the styloid processes & stylohyoid ligaments. These are the trigeminal, facial, hypoglossal, glossopharyngeal, accessory & vagus nerves. Elongation of the styloid(s) &/or calcification of the stylohyoid ligaments can cause irritation of these nerves. Alone each nerve when “upset” can create painful & sometimes scary symptoms. When more than one is irritated the symptoms caused can be downright debilitating. Additionally, vascular compression of the internal carotid artery &/or jugular vein can occur which creates other miserable & concerning symptoms. Obviously, the solution for recovery is to remove the offending bones/ligaments so the nerves &/or vascular tissues can recover.

I must say that I beg to differ with your comment that there isn’t much that can be done about ES. As noted above, surgery to remove the styloid process(es) &/or stylohyoid ligament(s) is basically the cure for ES. There are dozens of testimonies on this forum regarding recovery from the type of pain & symptoms you’re experiencing once a person has recovered ES surgery. The success of the surgery does depend somewhat on the competence of the doctor doing the surgery & the type of surgery you have i.e. external surgeries are often more successful w/ quicker recovery than intraoral surgeries. That said, we do have a number of members who have had successful intraoral surgeries. Also, ES surgery done by an experienced ES surgeon can provide better results than if surgery is done by someone inexperienced. This is why we often encourage people to travel to the more experienced doctors on our list if it is possible.

There are a series of videos on YouTube called Two Minute Neuroscience. There is one video for each of the cranial nerves. In two minutes, each video covers the location, function & symptoms of dysfunction of a given nerve. You might be interested to watch these as they will better help you understand the cause of your symptoms.

If you need a referral to an experienced ES doctor, please let us know & we’ll be glad to give you some names.

Hi MlpsFulton,

Fatigue is a common symptom of ES. From jaw/tongue fatigue to complete physical “washout”. Jaw stiffness is also a common symptom. Please read my reply to shel above as it explains the cause of the symptoms of ES & provides info about where to learn more to help you understand what’s going on in your neck & body.

Eagle Syndrome is indeed a “strange bird”. To get a better idea of the multitudinous symptoms that ES can cause, click on the gray magnifying glass icon in the upper right & type in “symptoms”. Many posts regarding ES symptoms will come up. Additionally, our moderator Jules, wrote a fairly extensive post in 2016 regarding ES symptoms. You can read it here:

Please feel free to keep asking questions. We’re here for you.

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Sorry that you’re dealing with this as well as Fibro…it’s hard when you have more than one condition to know what’s causing what, & which symptoms could be helped. As well as pain- Isaiah’s explanation of the nerves affected covers it well- the nerves affected also have motor functions too, innervating the muscles controlling spoech, swallowing etc so if these are compressed or irritated then muscles won’t work as well or could get tired.
Obviously at the moment it’s hard to get treatment, but hopefully at some point soon things will settle down & you can look at treatment.

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HI mpls,
You find many of us here have some or all of the same or similar symptoms. I have a long history of TMJ, neck instability, cluster headaches and for many years was told I had fibromyalgia. I have clenching and bruxism as well. Definately feel the jaw fatigue. As it turns out I have Ehlers Danlos Syndrome, a connective tissue disorder - also associated with fatigue, not fibromyalgia. My pain flairs (shooting nerve pain from throat up neck to ear) started in 2015 and occurred about once a year slowly worsening the past 2 years. When getting nerve blocks and botox for the pain with a new neurologist in Nov, he mentioned another “syndrome”…eagles. I think the description of feeling “like a bone in my throat” signaled the possibility to this doc and thankful for him listening carefully and putting me on the right track. That’s when I found this blog, educated myself and found the right doctors which is key. You are in the right place to lean more about ES. I had my worst pain flair at xmas and had CT scan that confirmed diagnosis around New years. I saw doctor in Feb and have surgery on the 27th for the first side. Ultimately, I wont know what will improve until after surgery (s) and some recovery time. I am hopeful as well as desperate to get out of pain.

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Thanks for the information! I appreciate this forum so much. I’ll keep you updated. Stay well and safe.
“Faith”

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