Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 the ENT said that because it is constantly swollen that it could eventually absess. When he felt it he said that it felt " grainy-gritty " . Whatever that means. My PMS is sometimes worse then other times. Guess it depends on how my stress level is. Sometimes before my period my lupus symptoms are very amplified. My body hurts so bad. This month my legs just ached so bad that I could never get comfortable. When I get the sore throats and hoarseness I also feel feverish. I took some motin tonight because I just felt feverish. I mostly feel it in my face, it feels like my cheeks are sunburned. Also when I get this, a light flushness appears on my face in the outline of a butterfly rash. I think that this is one of the reasons my internists feels that it is lupus related. This all started around last July. It would occur maybe once every couple of months. Now I get about 20-24 days in between. Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Hi Pennie, I'm not convinced it's related to your lupus, especially since you have a clear pattern of this occurring around your cycle. Hormonal fluctuations can cause all the symptoms you mention....swollen lymph nodes, sore throat and hoarseness. If this is not too personal, can you share if you experience PMS symptoms? Stress can increase cortisol production and this can block progesterone and lead to more pronounced PMS symptoms. I think you should have you progesterone levels checked and if deficient you could consider natural progesterone such as Pro-Gest cream or another natural supplement. There are also many herbal teas and supplements that can help balance your hormones, such as chaste tree, dong quai and maca root. Did your ENT offer any reason why your submandibular salivary gland is chronically swollen? Is there a blocked duct? Why does he want to remove it? > I have yet another question for you. For several months now I have > been > getting sore throats, swollen glands and hoarseness in my voice. It > comes and > goes, but it is always around the time of my period. My internist > feels it is > caused by my lupus. He did send me to an ENT who wants to remove my > submandibular gland due to swelling that never really goes down. My > internist is still > not sure that it's the best choice to do right now. I have tried > about 3 > reflux medications to see of that was the cause. They made no > difference. So Dr. > , what is your diagnosis? You are the smart one in the group, > you know > that right? > > Pennie > Abby's Mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Pennie I to get of this too and had no clue it can be of related to the lupus but yes get that and feel as if getting ill and fevery slightly and the glands hurt to swollow at times or to touch I to get of a much thirsty throat but have learend that the feeling I to associate as thirsty is of actually the scratch sore dry throat and the voice of me gets hoarse too. often my ear drums were of inflammed and buldging too at the same time and they felt it was of back then my allergies but I to not feel it was because it also maked of me flu like feeling as far as achey and much exhausted tires sedated feelings during that spell. My muscles during that time also feel extremely exhausted and as if they were of over worked for a long time even though they were of not and so it took so much effort to even climb a flight of stairs in the home and if got up around 10 AM would be so sedated feeling that would have to be to back to bed for a nap time. But around my monthly all things are more aggrevated and or get more pronounced as far as pains and inflamations. Such as lately I to know my legs have been swelling up which looks like a person when pregnant so I to know my body is of retaining water weight, the veins, nerves, muscles, skin all hurts much so in my legs and from the shoulder to the elbow on the outside of arm on its outer side. it is of a strong muscle ache. I to also fear of having blood clots as i to get of very painful spots on the legs and they hurt of ever so much and then later they will hurt in a different spot above the areas where it was hurting before as if it were of traveling but I to not been of dx with blood clots. But fear of maybe have of them. What medications have they been to give of you for the lupus as this is of what is of suspect for me too. I to wonder if you can be to share of things to me of how it affects of you. and what medications they be to use. I to be of so much want to learn from another who has of it to know what to expect and what things to be to associate as part of the over all lupus process and what things are just normal things as a whole? Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Pennie I to just readed of this post after I to sended of my post and it was if we both described of much the same issues. Around of my monthly which will be to come in this week, but the pains in my body are so intensified and it actually hurts everywhere even all my inner organs feel inflammed and the moods of tears often come most around this time because of not just hormones but the constant proplonged pains and no real sleep or no place to find any real comfortable place as standing hurts, sitting hurts and laying down hurts. I to not wish of this disease on anyones. do you have of other autoimmune issues I to wonder if you have of sjogrens too as it actually causes all the mucus membranes to dry out excessively causing much dry eyes, mouth , nose and such and even insides can be not as moist or lubricated or whatever the term but it is like being somewhat in a constant state of dehydrations. I to wondered of this due to the gland issues you were of haing. Also do you have of the combination of lupus and fibromyalgia? this is what the specialist expressed to me as hims suspect of me but did not give the official dx yet. I to think that is why he is of trying the plaquenil on me to see what it does to my body? Sondra In Autism_in_Girls , Ploveabby@... wrote: > > the ENT said that because it is constantly swollen that it could > eventually absess. When he felt it he said that it felt " grainy- gritty " . Whatever > that means. My PMS is sometimes worse then other times. Guess it depends on > how my stress level is. Sometimes before my period my lupus symptoms are very > amplified. My body hurts so bad. This month my legs just ached so bad that I > could never get comfortable. When I get the sore throats and hoarseness I > also feel feverish. I took some motin tonight because I just felt feverish. I > mostly feel it in my face, it feels like my cheeks are sunburned. Also when I > get this, a light flushness appears on my face in the outline of a butterfly > rash. I think that this is one of the reasons my internists feels that it is > lupus related. This all started around last July. It would occur maybe once > every couple of months. Now I get about 20-24 days in between. > > Pennie > Abby's Mom > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer? video=15 & ncid=aolhom00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Pennie, I'm sure the salivary gland is lupus related. Lupus can affect almost any area of the body. And the hormones can exacerbate all your lupus symptoms as well, so everything is all interrelated. I do think think that the throat, fever, etc. can be ameliorated by getting your hormones into better balance. Every little bit helps. Hope you get some relief soon :-) > the ENT said that because it is constantly swollen that it could > eventually absess. When he felt it he said that it felt " grainy- > gritty " . Whatever > that means. My PMS is sometimes worse then other times. Guess it > depends on > how my stress level is. Sometimes before my period my lupus > symptoms are very > amplified. My body hurts so bad. This month my legs just ached so > bad that I > could never get comfortable. When I get the sore throats and > hoarseness I > also feel feverish. I took some motin tonight because I just felt > feverish. I > mostly feel it in my face, it feels like my cheeks are sunburned. > Also when I > get this, a light flushness appears on my face in the outline of a > butterfly > rash. I think that this is one of the reasons my internists feels > that it is > lupus related. This all started around last July. It would occur > maybe once > every couple of months. Now I get about 20-24 days in between. > > Pennie > Abby's Mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Pennie, I'm sure the salivary gland is lupus related. Lupus can affect almost any area of the body. And the hormones can exacerbate all your lupus symptoms as well, so everything is all interrelated. I do think think that the throat, fever, etc. can be ameliorated by getting your hormones into better balance. Every little bit helps. Hope you get some relief soon :-) > the ENT said that because it is constantly swollen that it could > eventually absess. When he felt it he said that it felt " grainy- > gritty " . Whatever > that means. My PMS is sometimes worse then other times. Guess it > depends on > how my stress level is. Sometimes before my period my lupus > symptoms are very > amplified. My body hurts so bad. This month my legs just ached so > bad that I > could never get comfortable. When I get the sore throats and > hoarseness I > also feel feverish. I took some motin tonight because I just felt > feverish. I > mostly feel it in my face, it feels like my cheeks are sunburned. > Also when I > get this, a light flushness appears on my face in the outline of a > butterfly > rash. I think that this is one of the reasons my internists feels > that it is > lupus related. This all started around last July. It would occur > maybe once > every couple of months. Now I get about 20-24 days in between. > > Pennie > Abby's Mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Pennie, if it makes you feel better, my SIL had her parotid gland partially/totally removed (can't remember) because she had a benign tumor in one of them. But, it was obvious in her case. You ever tried anti-inflammatory natural remedies? Like CLO, etc? Don't know if it would help, figured I'd throw it out there. I'm sure can recommend a plethora. (Don't I sound smart with that word, lol?) <g> Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Pennie, if it makes you feel better, my SIL had her parotid gland partially/totally removed (can't remember) because she had a benign tumor in one of them. But, it was obvious in her case. You ever tried anti-inflammatory natural remedies? Like CLO, etc? Don't know if it would help, figured I'd throw it out there. I'm sure can recommend a plethora. (Don't I sound smart with that word, lol?) <g> Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Debi, Yeah, this is a bit different, but the treatment is often the same. Pennie has developed an obstruction due to stones in her submandibular gland, which is why it feels " gritty and grainy " . It's sometimes possible to treat without surgically removing the gland, but it's frequently easier to just take it out. > Pennie, if it makes you feel better, my SIL had her parotid gland > partially/totally removed (can't remember) because she had a benign > tumor in one of them. But, it was obvious in her case. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Sondra, I have been told that I have lupus and fibromyalgia. My internist has suspected sjograns, but the blood test always come back negative. But as he pointed out, you can still have it even if the blood work is not showing that you do. I know exactly what you mean about feeling like you have the flu and the fatigue with it. It is a horrible feeling. When I cant get out of a flare up on my own then I have to take Prednisone for a few days, it helps me. Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 do you think that I would get much relief by having the submandibular gland removed? I am concerned about the risk of nerve damage. Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 LOL Debi @ plethora. Sometimes I use that word to sound smart. LOL I have not tried any natural anti-inflammatory. Definitely something I would be willing to do. Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 LOL Debi @ plethora. Sometimes I use that word to sound smart. LOL I have not tried any natural anti-inflammatory. Definitely something I would be willing to do. Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Thanks ! Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Sondra I do feel like everything gets inflamed. It is a hard feeling to describe, nice to know that someone else understands. Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Sondra I do feel like everything gets inflamed. It is a hard feeling to describe, nice to know that someone else understands. Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Sondra I do feel like everything gets inflamed. It is a hard feeling to describe, nice to know that someone else understands. Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 It might be the best thing in your case, since it's just the one gland. You shouldn't suffer any ill effects. There are always risks, but hopefully you have a good surgeon! :-) > do you think that I would get much relief by having the > submandibular > gland removed? I am concerned about the risk of nerve damage. > > Pennie > Abby's Mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 prednisone helps of me greatly too but fearful of all teh negative and bad things taking that drug can cause such as diabetes and such things as this and it causes the system to be somewhat shocked into being good but it also triggers things. so for me like you only take it when a flare is of too hard. when you flare do you feel that everythings is of inflammed and hurts even the inside organs and such. YOu and me sound much alike in health issues and it feels good to me to have a person can relate to on this level that is of already a safe person to me. this is often to me so fearful and overloading to me because there is of so much to learn. but want of it to be of to stop and wish I to understood what triggered it to begin in me anyways. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Thanks Shanna. What does your neighbor do when it gets blocked? Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Pennie, My neighbor with Sjrogrens and I went to a funeral 2 weeks ago. While we were in the car I noticed her face was swollen on the right side. I asked her " what is going on " and she said that her " Saliva ducts " are stopped up and infected. She says that it happens a lot with Sjrogrens. I dont know anything about this but wanted to chime in here to say what I saw. Good luck! Shanna ('s mom) -- In Autism_in_Girls , cathylynn2 wrote: > > Pennie, > > I'm sure the salivary gland is lupus related. Lupus can affect > almost any area of the body. And the hormones can exacerbate all > your lupus symptoms as well, so everything is all interrelated. I do > think think that the throat, fever, etc. can be ameliorated by > getting your hormones into better balance. Every little bit helps. > > Hope you get some relief soon :-) > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Pennie, I want to say anitbiotics but I have put in a call to her and when she contacts me, I will post to confirm. Shanna > > Thanks Shanna. What does your neighbor do when it gets blocked? > > Pennie > Abby's Mom > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer? video=15 & ncid=aolhom00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Thanks Shanna! Let me know what she says. Pennie Abby's Mom **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Dear Sondra and Pennie: I take cortef or hydrocortisone which is part of the cortisone family. It is much safer than prednisone yet many doctors do not know about this older drug. It helps with aches and pains and giving my immune system a boost. I have one adrenal and have also been said to have chronic fatigue so I ache too etc. The thing about hydrocortisone is that you can take it for life everyday and you don't get the side effects like prednisone. I take 10mg 3x a day. My doctor says that there was a scare with cortisone when it first came out because doctors gave too high of doses but taking moderate doses gives you the same effect and less scary side effects. He has given me articles explaining this. Dr. Trethart is a medical doctor who also prescribes vitamins and alternative therapies for health so he has training in both areas. take care, Darby's mom Canada sondra wrote: prednisone helps of me greatly too but fearful of all teh negative and bad things taking that drug can cause such as diabetes and such things as this and it causes the system to be somewhat shocked into being good but it also triggers things. so for me like you only take it when a flare is of too hard. when you flare do you feel that everythings is of inflammed and hurts even the inside organs and such. YOu and me sound much alike in health issues and it feels good to me to have a person can relate to on this level that is of already a safe person to me. this is often to me so fearful and overloading to me because there is of so much to learn. but want of it to be of to stop and wish I to understood what triggered it to begin in me anyways. Sondra --------------------------------- You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Dear Sondra and Pennie: I take cortef or hydrocortisone which is part of the cortisone family. It is much safer than prednisone yet many doctors do not know about this older drug. It helps with aches and pains and giving my immune system a boost. I have one adrenal and have also been said to have chronic fatigue so I ache too etc. The thing about hydrocortisone is that you can take it for life everyday and you don't get the side effects like prednisone. I take 10mg 3x a day. My doctor says that there was a scare with cortisone when it first came out because doctors gave too high of doses but taking moderate doses gives you the same effect and less scary side effects. He has given me articles explaining this. Dr. Trethart is a medical doctor who also prescribes vitamins and alternative therapies for health so he has training in both areas. take care, Darby's mom Canada sondra wrote: prednisone helps of me greatly too but fearful of all teh negative and bad things taking that drug can cause such as diabetes and such things as this and it causes the system to be somewhat shocked into being good but it also triggers things. so for me like you only take it when a flare is of too hard. when you flare do you feel that everythings is of inflammed and hurts even the inside organs and such. YOu and me sound much alike in health issues and it feels good to me to have a person can relate to on this level that is of already a safe person to me. this is often to me so fearful and overloading to me because there is of so much to learn. but want of it to be of to stop and wish I to understood what triggered it to begin in me anyways. Sondra --------------------------------- You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
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