Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Rae, Hi, I too have been told I have Sjogrens. It is lovely little bonus pack that comes with RA. I have had puntum plugs put in my eyes to help with the dryness - the Opthamalagist did it for me - they work great - so I don't have to use quite so many eye drops. The real problem is the mouth - I drink water constantly. The Dr. I saw last night said that part of the reason my tongue did not heal is because of the dryness of my mouth. Tonight I am talking a sleep test because they believe the dryness is causing sleep apnea _#$%#$@I_ (mailto:#$#$@I) wake up in the middle of the night with my tongue stuck to the top of my mouth and no way to breath - gasping for air - it is pretty scarey. We need to get together sometime when you are in Stockton or I am in Napa, etc. Who is your Rheumy??? I got to Stanford Med Ctr in Palo Alto. You are right - the fog here has been real painful. Take care, Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Rae, Hi, I too have been told I have Sjogrens. It is lovely little bonus pack that comes with RA. I have had puntum plugs put in my eyes to help with the dryness - the Opthamalagist did it for me - they work great - so I don't have to use quite so many eye drops. The real problem is the mouth - I drink water constantly. The Dr. I saw last night said that part of the reason my tongue did not heal is because of the dryness of my mouth. Tonight I am talking a sleep test because they believe the dryness is causing sleep apnea _#$%#$@I_ (mailto:#$#$@I) wake up in the middle of the night with my tongue stuck to the top of my mouth and no way to breath - gasping for air - it is pretty scarey. We need to get together sometime when you are in Stockton or I am in Napa, etc. Who is your Rheumy??? I got to Stanford Med Ctr in Palo Alto. You are right - the fog here has been real painful. Take care, Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 hi carla... the shogrens is terrible... i have to have water all the time.. sometimes jsut to breathe... my air way sticks togethrer... it is frightful... and i see the dentist to make sure my teeth and crowns stay put!.. ha ha ha yes, my tongue get raw and i have sore spots in mouth that jump around from place to place...( sometimes i get thrush and have to take those terrible longes (sp) and i hate the taste of them.... yes, we need to get together on day for lunch... we will keep in touch... thanks, rae Re: [ ] Monday evening... Rae, Hi, I too have been told I have Sjogrens. It is lovely little bonus pack that comes with RA. I have had puntum plugs put in my eyes to help with the dryness - the Opthamalagist did it for me - they work great - so I don't have to use quite so many eye drops. The real problem is the mouth - I drink water constantly. The Dr. I saw last night said that part of the reason my tongue did not heal is because of the dryness of my mouth. Tonight I am talking a sleep test because they believe the dryness is causing sleep apnea _#$%#$@I_ (mailto:#$#$@I) wake up in the middle of the night with my tongue stuck to the top of my mouth and no way to breath - gasping for air - it is pretty scarey. We need to get together sometime when you are in Stockton or I am in Napa, etc. Who is your Rheumy??? I got to Stanford Med Ctr in Palo Alto. You are right - the fog here has been real painful. Take care, Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 hi carla... the shogrens is terrible... i have to have water all the time.. sometimes jsut to breathe... my air way sticks togethrer... it is frightful... and i see the dentist to make sure my teeth and crowns stay put!.. ha ha ha yes, my tongue get raw and i have sore spots in mouth that jump around from place to place...( sometimes i get thrush and have to take those terrible longes (sp) and i hate the taste of them.... yes, we need to get together on day for lunch... we will keep in touch... thanks, rae Re: [ ] Monday evening... Rae, Hi, I too have been told I have Sjogrens. It is lovely little bonus pack that comes with RA. I have had puntum plugs put in my eyes to help with the dryness - the Opthamalagist did it for me - they work great - so I don't have to use quite so many eye drops. The real problem is the mouth - I drink water constantly. The Dr. I saw last night said that part of the reason my tongue did not heal is because of the dryness of my mouth. Tonight I am talking a sleep test because they believe the dryness is causing sleep apnea _#$%#$@I_ (mailto:#$#$@I) wake up in the middle of the night with my tongue stuck to the top of my mouth and no way to breath - gasping for air - it is pretty scarey. We need to get together sometime when you are in Stockton or I am in Napa, etc. Who is your Rheumy??? I got to Stanford Med Ctr in Palo Alto. You are right - the fog here has been real painful. Take care, Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Cary, Thanks for the thought. I have tried Biotene, and I do use the toothpaste, it is the only kind I can tolerate. I actually saw the surgeon last Thursday, and he made a second referral to the hyperbaric Dr, and I have an appointment on Monsday for consultation!!!!I have to stop my prednisone, and am down to 1/2 the dosage I normally take. Problem is that Friday I got real sick, chills, fever, etc. I know I should have gone to the hospital- my fever was 103 in the middle of the night but it seemed to break by 10:00 am the next morning so I have been dragging around with a very sore neck and headache. BUT either my tongue is infected - because it looks swollen or it is starting to grow back together. I am afraid it is infected - I will see the Dr. tomorrow - so we shall see. \ Thank you for the suggestion. Gentle Hugs, Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Cary, Thanks for the thought. I have tried Biotene, and I do use the toothpaste, it is the only kind I can tolerate. I actually saw the surgeon last Thursday, and he made a second referral to the hyperbaric Dr, and I have an appointment on Monsday for consultation!!!!I have to stop my prednisone, and am down to 1/2 the dosage I normally take. Problem is that Friday I got real sick, chills, fever, etc. I know I should have gone to the hospital- my fever was 103 in the middle of the night but it seemed to break by 10:00 am the next morning so I have been dragging around with a very sore neck and headache. BUT either my tongue is infected - because it looks swollen or it is starting to grow back together. I am afraid it is infected - I will see the Dr. tomorrow - so we shall see. \ Thank you for the suggestion. Gentle Hugs, Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Carol Have you tried using Biotene mouthwash before bed? It is specifically made for dry mouth and you can get it at any drug or grocery store. I find it helps some before bed so I don't have to drink water and pee all night!!! heehee Just a thought-you sound so miserable, I thought it might be worth trying to at least ease the dryness a bit. Cary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Carol Have you tried using Biotene mouthwash before bed? It is specifically made for dry mouth and you can get it at any drug or grocery store. I find it helps some before bed so I don't have to drink water and pee all night!!! heehee Just a thought-you sound so miserable, I thought it might be worth trying to at least ease the dryness a bit. Cary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Sorry to hear this, Carol. I hope you don't have an infection. Sounds like you very well could. Please keep us posted. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] Monday evening... > > Cary, > Thanks for the thought. I have tried Biotene, and I do use the toothpaste, > it is the only kind I can tolerate. I actually saw the surgeon last > Thursday, and he made a second referral to the hyperbaric Dr, and I have an > appointment on Monsday for consultation!!!!I have to stop my prednisone, and am down > to 1/2 the dosage I normally take. Problem is that Friday I got real sick, > chills, fever, etc. I know I should have gone to the hospital- my fever was 103 > in the middle of the night but it seemed to break by 10:00 am the next > morning so I have been dragging around with a very sore neck and headache. BUT > either my tongue is infected - because it looks swollen or it is starting to > grow back together. I am afraid it is infected - I will see the Dr. tomorrow - > so we shall see. > \ > Thank you for the suggestion. > Gentle Hugs, > Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Sorry to hear this, Carol. I hope you don't have an infection. Sounds like you very well could. Please keep us posted. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] Monday evening... > > Cary, > Thanks for the thought. I have tried Biotene, and I do use the toothpaste, > it is the only kind I can tolerate. I actually saw the surgeon last > Thursday, and he made a second referral to the hyperbaric Dr, and I have an > appointment on Monsday for consultation!!!!I have to stop my prednisone, and am down > to 1/2 the dosage I normally take. Problem is that Friday I got real sick, > chills, fever, etc. I know I should have gone to the hospital- my fever was 103 > in the middle of the night but it seemed to break by 10:00 am the next > morning so I have been dragging around with a very sore neck and headache. BUT > either my tongue is infected - because it looks swollen or it is starting to > grow back together. I am afraid it is infected - I will see the Dr. tomorrow - > so we shall see. > \ > Thank you for the suggestion. > Gentle Hugs, > Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 i use biotene tooth past and the mouth wash, it is great... but still have to drink tons of water all day long, so i can breath or talk... rae Re: [ ] Monday evening... Carol Have you tried using Biotene mouthwash before bed? It is specifically made for dry mouth and you can get it at any drug or grocery store. I find it helps some before bed so I don't have to drink water and pee all night!!! heehee Just a thought-you sound so miserable, I thought it might be worth trying to at least ease the dryness a bit. Cary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 i use biotene tooth past and the mouth wash, it is great... but still have to drink tons of water all day long, so i can breath or talk... rae Re: [ ] Monday evening... Carol Have you tried using Biotene mouthwash before bed? It is specifically made for dry mouth and you can get it at any drug or grocery store. I find it helps some before bed so I don't have to drink water and pee all night!!! heehee Just a thought-you sound so miserable, I thought it might be worth trying to at least ease the dryness a bit. Cary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Carol, how did your tongue get separated? that must hurt like heck! i am sorry to hear that you have been sick... sounds like the flue? did you get the flue shot?? hope you feel better real soon.. and make it to your appointment.. rae Re: [ ] Monday evening... Cary, Thanks for the thought. I have tried Biotene, and I do use the toothpaste, it is the only kind I can tolerate. I actually saw the surgeon last Thursday, and he made a second referral to the hyperbaric Dr, and I have an appointment on Monsday for consultation!!!!I have to stop my prednisone, and am down to 1/2 the dosage I normally take. Problem is that Friday I got real sick, chills, fever, etc. I know I should have gone to the hospital- my fever was 103 in the middle of the night but it seemed to break by 10:00 am the next morning so I have been dragging around with a very sore neck and headache. BUT either my tongue is infected - because it looks swollen or it is starting to grow back together. I am afraid it is infected - I will see the Dr. tomorrow - so we shall see. \ Thank you for the suggestion. Gentle Hugs, Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Carol, how did your tongue get separated? that must hurt like heck! i am sorry to hear that you have been sick... sounds like the flue? did you get the flue shot?? hope you feel better real soon.. and make it to your appointment.. rae Re: [ ] Monday evening... Cary, Thanks for the thought. I have tried Biotene, and I do use the toothpaste, it is the only kind I can tolerate. I actually saw the surgeon last Thursday, and he made a second referral to the hyperbaric Dr, and I have an appointment on Monsday for consultation!!!!I have to stop my prednisone, and am down to 1/2 the dosage I normally take. Problem is that Friday I got real sick, chills, fever, etc. I know I should have gone to the hospital- my fever was 103 in the middle of the night but it seemed to break by 10:00 am the next morning so I have been dragging around with a very sore neck and headache. BUT either my tongue is infected - because it looks swollen or it is starting to grow back together. I am afraid it is infected - I will see the Dr. tomorrow - so we shall see. \ Thank you for the suggestion. Gentle Hugs, Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Carol Good luck-please let us know what happens, esp. as far as the hyperbaric thing goes. I've read wonderful success stories re: wound healing with hyperbaric chambers, but not wounds that are more " internal " , like yours. Cary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Carol Good luck-please let us know what happens, esp. as far as the hyperbaric thing goes. I've read wonderful success stories re: wound healing with hyperbaric chambers, but not wounds that are more " internal " , like yours. Cary Quote Link to comment Share on other sites More sharing options...
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