Tingling in Extremities

Does anyone else get tingling in their fingers that’s positively linked to ES? Or vibrating (almost like a cellphone) in their feet? It’s one of many things that I’ve had off and on most of my life and I want to know the connection, if any.

I’ve had terrible tingling and shivers almost in my left leg for the past few days.
I wasn’t sure if it was related either

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Some members have had this, but there’s not really a reason for it to be caused by ES. The accessory nerve exits near the styloid process & goes to the shoulders, so has caused pain & weakness for some members. Tingling in your hands could be nerves pinched by Thoracic Outlet Syndrome, which some members have had. Logically the tingling feet can’t be caused by ES as the nerves to the feet exit much lower down the spine, but lots of us have had weird & wacky symptoms which can’t be logically explained! Nerves can also be trapped by tight muscles, which could be through the inflammation & tension caused by pain…a bit of a vicious circle! Autoimmune diseases seem to be common with us with ES also, for example Sjogren’s Syndrome can also cause small fibre neuropathy.
I do get quite a bit of tingling, & shivers too, goosebumps as well in arms & legs, but for me I think it is more likely muscles trapping nerves rather than neuropathy etc.

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I experience this tremendously before my second surgery, never before my first. I believe mine was mostly caused by stress (?) as my heart rate would elevate. It was frightening and I certainly brought it to my doctors attention. (also contributed it to stress)
I have not experienced it since my second surgery and looking back, it only got extreme when I would work myself into a worry about ES and all the other stresses one experiences.

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I had tingling and spasms in my face/ head and legs/feet which started with eagles. Everyone tells me the legs/feet couldnt be related. But it all started at the same time. Im 3 eagles surgeries in it calmed down a little bit. :disappointed:

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I have tingling, numbness and pain in my face ,neck shoulders, arms and hands. My jaw gets stiff to where I cant open my mouth fully. I have a swollen tongue and it feels like I have just come from the dentist. I feel like I am going to swallow my tongue. Because my mouth is numb, I end up biting the inside of my cheeks. I also have many other issues with tinnitis, dizziness, balance, eye pressure, eyer floaters, blurriness, severe pain when turing my head to the side. I also have tingling and numbness in my legs and feet. I got a diagnosis this spring of Ankylosing Spondylitis after my diagnosis of Eagles Syndrome last year. My doctors feel that there is a connection as both have soft tissue/ligaments that calcify and become bone. I was diagnosed with Fibromyalgia about 20 years ago and now the doctors think maybe alot of what we blamed on Fibromyalgia was really a side affect of the Eagles and Ankylosing Spondylitis. My doctors said that because of the angle of my ligaments and how close they were to my artery and nerves that surgery was very risky and to see if I can live with the symptoms. My Rheumatologist is starting me on a biologic to help with the Ankylosing. Hopefully it will relieve most of my symptoms. I know it won’t relieve all.

That sounds really difficult Milly, so sending you a hug :hugs: Doubly hard when there’s overlapping conditions… I would just say that if your styloids or calcified ligaments are very close to the carotids, then this is all the more reason to get them out! Dizziness, eye pressure & balance issues can be vascular ES symptoms. More experienced ES doctors will still do surgery to relieve vascular symptoms, so it might be worth getting a second opinion, especially if you’re able to travel. Dr Hepworth on Colarado is very experienced, & I know it’s a long way, but Dr Samji in California will do phone consults too, so you could send your scans there. There’s info you can look for in past discussions, & I’ll attach the Doctors List here:
US Doctors Familiar With ES, 2019 - Symptoms and Treatments / Doctor Information - Living with Eagle
The only doctor we have on the list in your area is Dr Conyer- have you seen him?
Hope that you are able to get some treatment, & that the medication for the spondylitis helps…