Hello all. Its been a while since I’ve posted. I haven’t been to the site in quite awhile but I see the emails in my inbox all the time and never open them. Today I decided to and the first blog that come up was this one about plaguing flare ups. That’s me. @Snapple2020 - I am sorry to hear that you are suffering. I can certainly relate.
December will be 2 years since my second surgery. I am in the middle of a flare up with all the same symptoms I had pre-surgery for #2. The first surgery on the left side relieved most the symptoms (except my tinnitus is back louder then ever,) but when I had severe symptoms flare up on the right side after my first surgery, it seemed only logical I have the second surgery. I will say it never helped.
My symptoms - almost all on the right side:
tightness in jawline
pain under jaw
numbness in jaw
tinnitus (left side so loud it wakes me up. Noise machine is plugged back in and it does help)
constant headaches, sometimes with severe pain in eye, face, teeth, neck, (I had one yesterday)
burning in shoulder
food sensitivities (gluten and dairy intolerances)
crunching, grinding sounds in neck and up into head.
my sinuses get clogged in an instant then moments later I can breathe again
nose clogs every time I bend over
dizziness when standing (mostly at the end of the day - I think caused by inner ear
weakness in both arms
anxiety - of course
I also have thyroid nodules right side (followed with yearly sonograms). Painful only during flare ups.
Since I have had flare ups for years now, my doctor is now saying its possible I have an autoimmune disease. I have heard it said many times, if surgery for ES doesn’t help, then it wasn’t ES. I would say its like fibromyalgia but its mostly localized to right side of head, neck and shoulder, though joint pain in both knees. I’ve been doing PT with some success on the headaches.
Scheduled doc appointments -
Endocrine thyroid specialist (Not sure if the flare up pain is a flare up of the thyroid and nodule or pain from the neck flare up.) Hoshimoto’s ? All my past thyroid tests show my thyroid working fine. I just had test Wednesday and waiting for the results. Hoshimoto’s is a possibility because of my food sensitivities. I am gluten intolerant and usually avoid, but sometimes fall off the wagon. Just restarted my clean, not much on the list of foods to eat diet - no sugar, gluten, dairy, legumes, most fruits . . .
Rheumatologist to check for bone, muscle and related autoimmune diseases.
I recently saw my ENT - unless tinnitus is cause by a blockage or wax, there is no cure I am scheduled for a hearing test, though I suspect my hearing is ok for my age (61)
As for possible TMJ, I used to clench my teeth and wake up with horrible pain in my cheeks and jaw. I always hyperaware of never letting my teeth touch except to chew and wear a night guard. I haven’t woken with the clenching pain in a few years now. Fibromyalgia can supposedly mimic TMJ.