Mouth and throat problems

After a long struggle with laryngeal silent reflux, I found myself with nerve damages affecting my throat and salivary flow in the mouth. THough this may sound trivial, it is unbearable. I need support from people with similar problems especially if they are caused by nerve damage - it is not important that the mouth and throat be affected - just the discomforts caused by nerve damage.

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Joan
I just read ur condition. Awful. With lupus
And sjogrens sometimes I get swollen
Salivary glands that are painful. Not nerve
Though! I know nerve pain can be excruciating!
Hang in there! Hugs Linda

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I'm so so sorry. I've had infections in the salivary tubes, and those are painful and awkward. I can only imagine. I've got nerve damage in my abdomen from some surgeries that didn't heal well. Surgery to fix the problem were as likely to make it worse as better. Putting on socks was agonizing. Shoes had to be slip on, pants were tricky too. Having my third child helped rearrange things which helped. Since then the pain has continued to fade to mostly numbness.

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No it is not trivial, unless one has experienced such they can never really understand how hard it is for us. I have Scleroderma, Sjournes, Raynauds, Peripheral Neuropathy....and so on and so forth...what ever my body decides to throw me next. Try to joke about it sometimes but it is far from funny.

Have you had a Swallowing Study? Mine showed spillage from when I swallow, the slowness of my chewing and swallowing difficulty. Although I have nodules in my thyroid, the doctor believes the scleroderma & neuropathy are affecting the muscles and sensory nerves. Could there be something with your sensory nerves? Have you seen a Neurologist? I had a Seral Nerve Biopsy to see if my sjournes caused the neuropathy since it cannot be pin pointed by anything else. There is only a 50% chance it will show whether the sjournes is the cause but it was a chance I felt worth trying. Unfortunately in my case it will inconclusive BUT my Rheum. Scleroderma Dr. believes its a definate AS my Scleroderma has entered a Progessive State.

I don't come on here often, like I used to. But I'll look to see if you reply or want to talk further.

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Thanks butterfly. I have had many tests including swallowing. I guess it does help to realize I'm not alone! Thanks for responding. It helps

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Hi Butterfly,

I undersatnd you doc's do not feel the nodules are relevant but they may well be . If its possible another opinion may be wise ;-) i see the complexity of your situation and absolutely undersatnd . I feel like you , that whatever the next thing will be , just add it to the pile . Smiling remains my expression of choice ;-)

josie

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Hi Joan ,

I have nerve pain from swelling , and anaphylaxis . I undertand . Are you on any medication for the pain as there are a good mix of options available ;-) many hugs , Josie

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Hi Josie,

Honestly, I have no pain. I just have extreme discomfort, for which there seems to be no meds!

Hugs
Joan xx

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Hi Joan ;-)

I understand . I do wander if you have a high discomfort threshold ;-) As you describe what many would call pain . It is very hard to describe I know . If you could scale it on 1 -10 from no discomfort to the worst you ahve ever experiened what number would you give it with 1 being none . It soulds like a swelling problem which may be pressing on other nerves or organs . causing problems with function ( not a functional probem which is doctor speak for psycosomatic ) . It may also be your nerves in the area are damaged and not giving you pain signals ;-) but the nerves set off by pressing are being noted by your brain .;-) Do you get any itching in the areas of discomfort ?? AS this can be that swelling is about to is is happening

hugs
Josie

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Hi Josie
I definitely dont have a high pain tolerance level.... I'm a real wimp! my discomfort is so difficult to describe, yet its driving me crazy. I've seen many specialists, and there is apparently no swelling.
One specialist told me it was all psychosomatic. I don't buy that, as I have documented nerve damage. So I keep hoping that things will fall back into place. 3 years ago i would have scored my discomfort as 12/10 .....now, i would put it at 5-6/10. Its better than it was but still a way to go.

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