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Eagle Syndrome - Online Support Group

ES and Fibromyalgia anyone?

Hi all,

Just wondering if anyone has ES and Fibromyalgia?

The Fibro was diagnosed years ago and the ES 10 days ago, I am on a lot of pain meds already as my Fibro is fairly active and my ENT / GP are at a loss as to what to do with me - apart from continue as I am.

I am under a pain consultant also for complex regional pain syndrome following an accident and on pain meds for that too - so basically shouldn’t feel anything!

This is what makes me most anxious as my neck/jaw/throat is so painful at times whst would it be like if I wasn’t on meds???

I am due to see my pain consultant mid Dec but doubtful of a good outcome :disappointed_relieved: I am just totally exhausted by it all.

Thanks for reading x

1 Like

Hi Sarah,

I am very sorry to read that you’re in so much pain. Controlling that certainly becomes life’s focus, doesn’t it. :cry:

There are others on this forum who’ve been diagnosed w/ fibromyalgia & ES. Some of those have had their FM symptoms reduce after ES surgery. Surgery is the only way to get rid of the pain & other symptoms ES can cause as removing the elongated styloid(s) &/or calcified stylohyoid ligament(s) is the only way to stop irritation to the cranial nerves which cause the symptoms. Additionally, there can be compression of the internal carotid artery &/or the jugular vein which causes other challenging symptoms. I will include the link to the ES Doctors’ List which has the names of doctors familiar w/ ES in your country. Mr. Axon in Cambridge area is the most experienced ES doctor in the UK, & some members have traveled a distance to see him. There are other competent ES doctors in the UK though.

Hopefully someone w/ a similar health combo will chime in as well.

:blush:

Yes. I have fibromyalgia ( taking Celebrex for it), Hashimoto’s thyroiditis (no meds), and ankylosing spondylitis (on humira for that). Recent hysterectomy last December too.

I’ve had ES intra oral surgery (8/20/19) that failed. Second surgery will be 11/19 and external. Each surgery I’ve had has made the fibromyalgia pain flare for months.

So sorry that you’re in so much pain from so many angles…ES pain is quite a stubborn one to treat, lots of members don’t find anything that helps, which is why people opt for surgery, as Isaiah says it’s the only way to cure ES. Lignocaine/ steroid injections into the tonsil area can sometimes help, although it doesn’t always & is only a temporary fix. & one US member had good results with lidocaine patches on her neck, I’m not suee if we can get them in the UK? What medications are you on for the regional pain syndrome? I would’ve thought that it would be nerve pain medications, which do help sometimes, obviously you’re very unlucky that it’s not helping you. The pain from ES pain can also be caused by pressure on blood vessels too, I don’t know if you have any vascular symptoms?
I agree with what Isaiah says, that it would be an idea for you to try to see Mr Axon, as he has alot of ES experience, or has your doctor done surgery before for ES?

I’m so sorry that you’re still in pain after your ES surgery; are you having external surgery on the same side again, or the other side done?

Hi Sarah,
I was diagnosed with Fibro about 25 years ago…I think mostly because I had all this widespread pain and nothing showing up on the tests they were doing. Now I wonder if I ever had Fibro and maybe it’s been the Eagle all this time! I hope you are able to find some way to get relief.

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premedmom,

I, too, hope this second surgery makes a HUGE difference that you didn’t see w/ the first surgery. Are you seeing a different doctor this time or is the first doctor trying a different approach?

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Thank you all for your replies, painkillers wise I am on Matrifen patches (fentanyl), celecoxib, pregabalin, duloxetine, and ropinirole so should float around really :woozy_face:. I’m going to get a disc of my ct scan ask for a referral to Mr Axon. Thanks again

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Hi, my specialist has referred me to Mr Axon in Cambridge, I see him in January.I have seen 5 other Specialists but no one will operate as the bone has grown back at an angle and is pressing on the carotid artery.It has pushed into my throat and I’m getting to an urgent situation as it was before my first emergency ops in 2002.I think Mr Axon is my last resort in England as I [quote=“Isaiah_40_31, post:2, topic:6208, full:true”]
Hi Sarah,

I am very sorry to read that you’re in so much pain. Controlling that certainly becomes life’s focus, doesn’t it. :cry:

There are others on this forum who’ve been diagnosed w/ fibromyalgia & ES. Some of those have had their FM symptoms reduce after ES surgery. Surgery is the only way to get rid of the pain & other symptoms ES can cause as removing the elongated styloid(s) &/or calcified stylohyoid ligament(s) is the only way to stop irritation to the cranial nerves which cause the symptoms. Additionally, there can be compression of the internal carotid artery &/or the jugular vein which causes other challenging symptoms. I will include the link to the ES Doctors’ List which has the names of doctors familiar w/ ES in your country. Mr. Axon in Cambridge area is the most experienced ES doctor in the UK, & some members have traveled a distance to see him. There are other competent ES doctors in the UK though.

Hopefully someone w/ a similar health combo will chime in as well.

:blush:

Jan - Thank you for your response. I’m so glad you were able to get an appointment w/ Mr. Axon. I think he will be able to help you where others have fallen short. I’m sorry it’s a bit of a wait, but at least you have an appointment & something to look forward to. Try to keep your head & neck in positions that help prevent your vascular impingement if you know what those positions are. I know this can be very difficult & might have you walking around w/ your head in a strange position. Do what you can to protect that precious carotid artery while you wait.

I will pray for you as you count the days till your appointment.
:hugs:

Sarah -

WOW! That’s quite a list of painkillers & I agree! You must feel like you’re floating around. I hope all those things are helping keep your pain at a tolerable level.

You’re on the right path for help. I hope you get your CT disc & the referral ASAP!

Sending prayers & hug your way.

:pray: :hugs:

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Thanks for responding. I’ll be having it on the same side. Orally failed… well… I’m in worse pain, sadly. I have a worse stick in the throat feeling than ever. Something isn’t right. :frowning: edited to add : I just made a new post about being confused about my 1st surgery.