*** jlh ***

Discussion in 'Fibromyalgia Main Forum' started by SherylD, Apr 3, 2006.

  1. SherylD

    SherylD Guest

    Hi there...

    I was doing some searching on here about Sjrogren's Syndrome...And I came across you quiet a bit..

    Sorry that you suffer with this...and everything else...

    THe reason I wanted to talk to you was because my Dad was just tested for this today..

    He has had a terrible time with his mouth burning and dry...and his lips are so dry...

    But now his saliva glands are all swollen...So he went to the ENT and he is the one doing the testing...Not sure when he will find anything out...

    Also you had talked about in the past having pain in your teeth and ears...He has a heck of a time with both of these..In fact he has had several teeth pulled cuz they hurt so bad...and he always says he feel like he has swimmers ear...like there is fluid in there and it hurts..

    But my concern is...and maybe you won't know the answer..but he gave him Nuerotin(sp)...(I hope I am spelling it right)...for this...Just to try for a while...

    Is this really a type of drug they give for this syndrome???..Do you know..

    And they realated it to the arthritis in his neck...

    Sorry to ask you all kinds of questions...I am just worried about this..

    Thanks so much for listening..

    [This Message was Edited on 04/03/2006]
  2. JLH

    JLH New Member

    Hi, Sheryl!

    Unfortunately, I have this and a great many other things! Ugh! Ugh! Ugh!

    I'm sorry to hear that your father is having a lot of medical problems as well.

    Is it the ENT who is doing his testing re the Sjogren's? After he gets all of his testing done from the ENT, if it is the ENT who is ordering the tests, if it were me, I would go to a good Rheumatologist for a second opinion.

    Sjogren's is in the autoimmune-type and other diseases that Rheumy's specialize in. A Rheumy may be more beneficial in treating your father rather than an ENT. Or, maybe, between the two of them, they can work out a good treatment plan for him.

    My mouth never burns, but is SO DRY that I sometimes feel like my tongue is stuck to the roof of my mouth--like peeling two pieces of scotch tape apart! My Rheumy told me to keep sugar-free lemon drops around and suck on. Sugar-free so that they won't cause dental problems, and lemon because lemon will stimulate the saliva glands to produce saliva!

    My lips are also that dry. All I can do for that is to keep water handy and drink frequently, as well as some good quality lip balm in every room in the house!! I never wear anything with pockets, but you father could always keep some in in trouser's pants pockets!

    I really don't think there is much to do for Sjogren's except treat the symptoms. You might do some research here on the internet and see what you can discover.

    It also causes my eyes to be dry. He needs to have a yearly checkup with his eye doctor and see if he recommends any special eye drops. I just keep saline eye drops for when my eyes get dry--but nobody should take a chance with their eyes and should get what his doc wants.

    I have never had swollen salvia glands--because I don't know where they are at!!! LOL

    But my parotdid (? sp.) glands swell all of the time. They are the glands right beneath your ear (towards the front of the jaw) and under the jawline. They swell and put pressure on your teeth and cause you to have what you think is a toothache. Before I was diagnosed, I didn't know what was wrong with my jaw teeth and went back and forth between my dentist and medical doctor--each saying it had to do with the other's specialty--until the dentist said maybe I had a nerve problem with the jaw teeth that he was unaware of. He sent me 90 miles away to a specialist who did not see anything but said root canals would solve the problem of them hurting. So, even though he saw no nerve problems, I requested that he do root canals!! Well, that solved that problem!! Now they swell, but I don't have any teeth pain!

    Ocassionally, I will still have other teeth that will hurt, but not often. The pressure from the swelling will also cause my ears to hurt--like an earache.

    I just put warm compresses, or the heating pad on them until the swelling goes down.

    There is some type of med that one doc gave me that had to do with the parotdid glands--making them do something, but I can't remember what it was now.

    Since I had the dental work done (which was expensive!!) I don't have as much pain when these glands swell now.

    That's about the extent of my problems with Sjogren's, but I do know that it causes other problems, but I am not quite sure what they are. I don't know if any of them overlap or not with my arthritis, lupus, fibro, etc.

    Regarding the Neurotin. This med is used to help nerve pain. It helps diabetics with their neuropathy (nerve pain) in their feet, etc. It has also been proven to help with fibro pain--which is why I am on it--well, I also have a little bit of neuropathy, too.

    The only reason that I can think of on why they put him on it would be to help with the nerve pain in his face/ears. I really don't know if the Neurotin would do anything for the arthritis in his neck, though. He should be on a NSAID for that--a daily anti-inflammatory to keep the inflammation of the arthritis down in his body. (I also have a great deal of arthritis in my neck, as well as spinal stenosis, and a bunch of other neck problems!)

    Has he had a CT scan or MRI of his neck? If not, he should get one and ask the Rheumy how the results could affect the Sjogren's, or the ENT on how it affects his jaws and ears, etc.

    You might be surprised, it all may be stimming from his neck.

    I don't know how much medicine that your father is willing to try, but people who are in pain from various problems like his, and ours!, will benefit from a mild dose of an anti-depressant. What we take for fibro would help him -- which is Cymbalta. I also take it. It has been proven to help diabetics with their neuropathy pain. So it might help his nerve pain as well, along with relaxing him a bit so that his teeth, etc. do not hurt as much.

    However, I don't know how old he is, but the older you get, the meds will react on you differently. On the Cymbalta, he should definitely start out with the 30 mg and if the doc wants to increase it to the 60, he should split the dose with 30 in the morning and 30 in the evening as to not get too sleepy during the day--that is what I do, too.

    Just remember, I am not a doctor or health professional, so these are just MY COMMENTS AND THOUGHTS!!! LOL

    But maybe something that I have said will help you help him.

    I know you are worried about your father's health. I helped care for my father when I retired. He started having many health problems and I would do anything in the world to help him.

    You are a lovely daughter, and I am sure he feels really blessed to have you want to help him.

    If you have any other questions, feel free to ask. It might take me a day or two to get back to you--just keep bumping your post until I see it--it's going to be my grandsons' spring break soon and they will be spending a lot of time with me probably, and then I don't get as much computer time!!! LOL

    Big hugs,
  3. SherylD

    SherylD Guest

    Thanks so much for all the info...

    I sometimes wonder if he does have more things wrong with him...He complains alot of the same things we have...

    He is a person that does not listen...he does all the talking...so it would take a lot for me to get through to him..

    I was doing some reading on the computer and I do believe he would benefit from a anti-inflamatory drug too...

    He did have a MRI a couple years ago...And he does have a lot of problems with his neck..

    As for his eyes...He says they are not dry...but he says he wakes up with goop in the corners of his eyes..I read somewhere that that is one of the symptoms too...

    I am going to see what his test says when it comes back and go from there...THen I just might have more questions for you...LOL...Plus then we will know if he need to go see a Rhumy and the eye dr...

    Thanks for helping me with this...It sure is nice to have someone to talk to about stuff...

    Have fun with your family..
  4. SherylD

    SherylD Guest


    Well my Dads results came back neg. for the Sjrogren's Syndrome...The ENT now had him schedule a cat scan with that die they inject...He goes for that on Wed...

    I just don't know what is going on with him...Kinda scary..

    Thanks SherylD
  5. JLH

    JLH New Member

    Well, I'm glad that the test results were negative on the Sjogren's, but ..... what is it? Yeah, it's kind of scary when they keep doing all of the testing and you really don't know what they are testing about!

    Keep me posted on his results.

    Make sure YOU get plenty of rest, too!!!

    Big Hugs,
  6. SherylD

    SherylD Guest

    Thanks for responding...I'll keep you posted...

    I think the not knowing is something that just drives us all crazy..
  7. SherylD

    SherylD Guest

    Well my Dad had a catscan done on the glands...They found nothing..

    The ENT dr. said there is nothing else he can do..So I guess back to his reg. dr...

    His mouth is so dry and his saliva glands are so swollen that he can't hardly swollow when he gets up in the morning..