HELP!!!!!
Posted , 6 users are following.
I don't know if I have Sjogren's or not but my ENT thinks so. I have been sick for years. Just had my 5th sinus surgery in May and thought that would do the trick as it usually helped for about 2 years. Since Dec I have had swelling on my face and neck by mt ears when I would get what I thought was a sinus infection and my Dr said it was fluid due to my sinuses. Well after my surgery the swelling keeps coming back. The first time, a week and a half post op, I had been ecposed to strep and got really swollen glands and went to my GP and he said ear infection and prescribed antibiotics. I have to take levequin or augmentin because I have been on so many antibiotics over the years nothing else helps. The swelling would go away and I would feel better for about a week and then it came back My GP said to go to my ENT to see about tubes in my ears. So I do that 2 weeks ago during a flare up of the swelling and ear pain. He says there is no infection, my ears look fine. He sends me for all kinds of blood tests and his nurse calls me and says me tests came back ok but he wants to send me for a saliva test to test for sjogrens. Several years ago I gad sligtly elevated ana and Ra test results but just had another sinus infection I have slightly dry mouth and eyes, have had really bad acid reflux, arthritus, some difficulty swallowing, but when I have this swelling my whole head feels like it is full of something My ears pop and I feel totally exhausted and just sick, can't work!! I an so frustrated and thinking I may have had this for years and never known it. I also get allergy shots. My thing is now I have to wait to get into this oral pathologist to get this test and when I have these flare ups I feel so awful I can't work and I live alone. I am a 54 year old very active woman. Also the antibiotics were working for this and now they aren't at all. I don't know what to do.
1 like, 27 replies
katalin59838 donna13544
Posted
donna13544 katalin59838
Posted
katalin59838 donna13544
Posted
I don't think is sjorgens, you would have a dry mouth every morning when your toung stick to the top...
Lots of problem with teeth, and lots of eye drops....
But you need to check it out , blood test for autoimmune diseases,
Sorry you have to deal with it, but keep going to doctors and find out list what you have,
lily65668 katalin59838
Posted
Not necessarily Katalin. Although my Sjogren's started >20 years ago with an extremely dry mouth and later went on to dry eyes, neither of those symptoms bother me too much these days. However, I still have anti-salivary gland antibodies in my blood!
It does sound as if Donna might be suffering from blocked parotid and/or submandibular salivary glands, but the whole inner surface of the mouth, as well as the tongue, is covered with much smaller salivary glands. These might well be taking up some of the slack, and she does say her mouth feels a bit dry.
Also, some people perceive mouth dryness differently. When I first started getting it, I experienced it as an unpleasant taste in my mouth, and my lips constantly getting stuck to my gums. Strangely enough, it took me a couple of months to figure out that this was down to a dry mouth!
morelia100 donna13544
Posted
Hi Donna,
My dry mouth has never been too severe and i have only experienced the dry tongue a few times, but I have suffered from dry lips too and dry eyes. I have been positively diagnosed with Sjogrens and have experienced skin problems, such as dry skin, and break outs triggered by lotions that contain cortisones and regular toothpaste. Also initially I had symptoms of rheumatoid arthritis.
I wanted to write because although I have been a part of the forum for years, I don't see too much talk about the option of eating the right foods in order to heal yourself. Changing the way I eat has helped me immensely. Most of my symptoms are gone or much less bothersome. Maybe you already know about this but I am writing on the chance that you haven't. Just want you to be aware that there is much you can do for autoimmune diseases through your diet. Traditional doctors are not educated in nutrition or how it affects our health, so you would need to seek out a naturopath or do your own research online. But if you had have an autoimmune disease, there is indeed hope through simply eating the right foods and avoiding the harmful ones. This option can be a difficult one as many choose the medicated route instead, but there are no side effects, and you can do it while you are on meds and then with the help of your doctor, taper off the meds when you are ready. Hope this helps because it sounds like you are really suffering right now and frustrated about what to do. So sorry.
lily65668 morelia100
Posted
Hi Morelia, Good to hear that! I've actually seen quite a lot of dietary advice on these boards. The thing that intrigues me is that people follow very different diets, but they all report good results! Some of them are diametrically opposed too - we've had a few people doing very well on vegan diets while others go onto full-blown paleo.
I'm guessing a lot of this will depend on individual metabolisms, but I suspect there's another explanation as well. SS is an autoimmune condition - i.e. the body attacking itself. There's quite a lot of evidence that simply taking charge of one's own health, in whatever manner, can help with conditions of this kind - and indeed other conditions, including cancer. This was one of the tenets of the old Bristol Cancer Help Centre (which was discredited by a study around 1990, then rehabilitated when it was discovered that the study was at best flawed, at worst deliberately fraudulent).
I firmly believe that anything we can do to manage our own conditions - with or without medication, as you rightly state - can make a huge difference. I don't think it matters which diet you choose. What's helped me most is monitoring my body's response to different foods. Those which exacerbate my symptoms are cut out or severely restricted, while those that make me feel better are increased.
In practice, and for me, this means: a daily intake of four or five portions of vegetables (especially the green, leafy kind) plus two portions of fruit (three in the summer fruit season) and a reasonable amount of high-fat dairy; a weekly intake of at least one portion of oily fish and a few slices of wholegrain bread; and a monthly intake of five or six portions of meat (red or white) or chicken. The rest is made up of eggs (about four a week) and vegetarian or vegan meals. I drink tea and wine, but very little coffee, and avoid refined carbs and sugar as far as possible. I've also taken daily cod-liver oil and vitamin D3 supplements for years. The only food in the fruit/veg department I don't eat at all is rhubarb, as the high level of oxalic acid mimics uric acid in my body.
Not a Diet-with-a-capital-D but it works very well for me. I believe this is partly because I'm listening to my body's requirements, but also because I'm letting my immune system know who's in charge!
morelia100 lily65668
Posted
Agreed Lily,
I don't think there is a one-diet-fits-all, but for a beginner there are definitely some good suggestions out there about what is best avoided. I had blood work done to help me determine what foods I was sensitive to. My naturopath also told me that it was entirely possible that as I became healthier, I would be able to reintroduce many foods back into my diet, which has been the case. I believe there is much validity to the theory of healing your stomach lining, by eating the foods that are best for you. Always safe with veggies, and for a time I considered the vegan route, but discovered that you cannot get all the nutrients you need through a natural vegan diet. There is something that you can only get through animal products--can't recall exactly what, but I could look it up. So now, I eat a variety of meats, in general I avoid most wheat products and white sugar, dairy, caffeine, alcohol, but I do eat plenty of vegetables and fruits and I love nuts and dried fruits as a treat. I'm pretty strict at home with what I eat, but since I believe that my stomach lining in much better based on the fact that I don't bloat or get upset stomach much anymore, I have reintroduced some foods back into my diet in moderation when I am out. I now drink primarily water, coconut water, herbal teas (no milk or sugar). I love fresh fruit smoothies. Overall, I feel more energetic, healthier and for the most part symptom free. I have noticed when I eat more sweets, my joint pain will begin to emerge, so I usually stop at that point, but I do love sweets. Dairy still does a number on me, so I avoid that most of the timex although this summer I have had a good share of ice cream. I am currently taking vitamins as well which include vitamin B, and vitamin D, and Ferrynl. I have my blood tested about every 3-4 months to make sure everything is moving in the right direction. So far, much, much better. I'm planning to try a 6-month completely clean eating routine to see if my symptoms go away completely. Kind of an experiment. I will be starting next week.
deidra40034 donna13544
Posted
Hello Donna,
Are you being seen by a Rheumatologist? Because it sounds like you do have Sjogren's to me. I have dry mouth and eyes, but not as bad as in the beginning, and I do chew gum all the time, as my saliva is so very thick. My symptoms are totally different than a lot of others. I have more issues than there is room to type here, but with glands, and internal organ issues, and skin issues. I'm kind of a mess. But you really do need to keep on those doctors, until you get an answer! These auto immune issues are so hard to determine, as they can mimick each other. Have you had the lip biopsy? That is another way to determine one way or the other. I sure wish you luck, sound like you have been through the ringer so far!!! My thoughts and prayers are with you!!
donna13544
Posted
Thank you everyone that replied to me! The blood tests that I have had so far were negative and I'm waiting on the saliva test. Actually waiting on a referral to get that test. My lips are SUPER dry and my glands are super swollen and I'm exhausted. I had never even hear of this syndrome until 2 weeks ago. I thought all of my problems have always been my sinuses, allergies, and acid reflux. The glands swelling is new since December. I'm pretty overwhelmed right now but I appreciate everyone so much!!!
lily65668 donna13544
Posted
Hi Donna, Don't forget to get back to us when you get your results. Or sooner if you feel like it!
donna13544 lily65668
Posted
Hi Lily, I sure will! This has all been so frustrating as I'm sure all of you know. I don't even know if this is what I have. Wouldn't my blood tests have shown something? Do your ears hurt? My Dr said mine bother me because of the swelling in my paratid gland, pushing on the eustachian tube, causing the pressure in my ears. They are contantly popping and my head feels like it weighs 1000 pounds.Thank you, and everyone else for listening to me. I've spent a lot of time crying lately. I know it could be lots worse but I expected to be well after my sinus surgery in May and when I wasn't...well it's been really depressing..Especially when you have to work to pay to live and you feel to bad to even get off of the sofa. Just been feeling sorry for myself the last few days which is not a good thing I know!!! Thanks again!!!
gayle19455 donna13544
Posted
Hi Donna. Im new to this as well. My ears give me lots of problems. I cannot hear well because of ringing and my hearing will get better if i pop my ears. I'm going to get a hearing test and they will test the pressure in my ears. I have terrible burning mouth syndrome and my food tasts like cardboard so i hate to eat anything. Im on meds for fibromyalgia but nothing for the Sjogrens. I have to have a tablet for pain daily or i cannot function. ..feel sick all the time. I knowthis doesnt help you but it does help to know you are not alone . Hopefully your doctors can help you soon. Take an antidepressant if you need to..this helps me to get by.
donna13544 gayle19455
Posted
I'm so sorry Gayle!!! I already take antideppressants, have for years...Just left my GP and he thinks it's Sjogrens too. I have an appointment Sept 29 for a saliva test with an oral pathologist but my GP thinks I need a biopsy.I called the oral pathologist back and she said they don't do biopsies but that would be good to have. Called the gp back and he says well the saliva test should be ok!!!!!! WHAT???? I feel like I'm on a treadmill getting nowhere. I don't know what to do anymore...
lily65668 donna13544
Posted
Donna, go for the saliva test first. A lip biopsy isn't without side-effects (nerve damage in some cases) and sometimes comes back negative anyway, even when Sjogren's has been proven via blood tests. Depending on the results of the saliva test, you can start thinking about the lip biopsy.
donna13544 lily65668
Posted
Ugh, my Dr just told me he was sending me for one now.. This is all so frustrating and overwhelming....I don't know what to do. Thank you everyone!
lily65668 donna13544
Posted
Well just get the lip biopsy done. But prepared to be even more confused if it comes back negative! That doesn't mean you don't have SS. I'm afraid this is a very complex, devious kind of condition.
deidra40034 gayle19455
Posted
Hello Gayle,
May I ask why you are not on meds for Sjogren's? It sounds like you would sure benifit from it. I do have SS, and mine is not just the dry mouth and eyes. I am a real mess, as my organs are involved, muscles, glands and so on...too much to type. The one med that is so helpful, I can not take, as it damaged my eyes in the first 3 months, it is rare, as it is one of the meds with the least side effects. I just happen to be one of the un-lucky ones that can't take it. My Mom takes it, and is fine with it. It's Plaquenil, and it does really help with the discomfort! And of course Prednesone. They have me on Imuran now, with Pred. I am in the middle of a big flare, and nothing is helping at all. But I am in pain all thet time from it. It's just worse right now. I too have the Fibro, Lupus, and RA. Like I said...I'm a mess. I envy those that only have the dry mouth and eyes, as they have no idea how lucky they are!!
gayle19455 deidra40034
Posted
Hi Deidra,
It's hard for doctors to know just which problem is causing which symptom I guess. My rheumatologist put me on Azathioprine but just one pill landed me in the ER. My doctor said "Im sorry I poisoned you" but seems to be reluctant to try anything else now. I've read about Plaquenil and have asked him to try me on it. I'm so sorry to hear that you couldn't take it -I've read of the problems with the eyes. I took Prednisone and that did help, but my Neurologist took me off it - and it gave me very thin skin - lots of bruising. I couldn't live without being on Norco or Hyerocodone-Acetaminophen 1/2 a tablet each day. It not only helps with pain but keeps me from feeling sick. Of course it wears off by evening. My neurologist has also given me IV's he calls IVIG and that has helped me for a while. What I'm experiencing right now is the Burning Mouth Syndrome. I found a site that said to mix 50/50 Children's Benadryl and Milk of Magnesia and that causes my mouth to swell, but then it helps a little later. I wish I could be of more help, but I don't know what to do for myself. I used to take classes in Hypnosis and I think that would help, but I've gotten away from it and now find it hard to get into. I do believe in it however. If one can get into that space it takes away all the pain and misery. I wish you the best and hope your flare-up doesn't last long.
deidra40034 gayle19455
Posted
Oh Dear, What are we going to do with you? I've not heard of that med. I too have a real problem with so many meds, and being allergic to them. They have to be really careful with me. I don't react well to so many, so they start me on 1/4 strength at first, to see how I react, and then I take so many different ones, they have to be careful with interactions. I can't take Norco at all, or Hydrocodone. Both make me extremely sick, and feel like I can't breath. Thank you...I really hope they can do something for you, and very soon! Pleasae keep us posted! There has to be something they can do for you!!
gayle19455 deidra40034
Posted
I'm so sorry Deidra. You must really be having a very hard time. I do think if you could get some way to explore relaxation techniques it may help...i live in Seattle and now im going to try medical marijuna. ..the kind low.in the compound that makes you high but helps. With pain. I'll keep you posted
deidra40034 gayle19455
Posted
Yes, Please do...I don't take any pain meds at all. Just my regular meds. Let me know how that works! I do put my ear phones on, listen to music, and read to try to relax. Music sooths the soul. I also have a very bad back, and have to use a cane to walk, so I use a type of tense (sp) unit for that at times. My big problem right now is I have peripheral neuropathy in both of my feet and lower legs...from the Sjogren's...so when I walk, I often don't feel where I place my feet...so I am wobbly! LOL I told you I'm a mess! I think that tense unit does something odd, like it interfears with something, and I really don't like it. Something I have to talk to my doctor about this week! But, we have to keep a stiff upper lip, and just deal with it! I figure, God does not give is things we can't handle, so I guess He figures I can handle it. I am a pretty strong person, but it does get to a person some time! LOL Just can't help it, we are human after all! Shoot...You are in Seattle...you should know about the D3 Vit.!! I'm in Idaho!! LOL We are almost neighbors! But, I'm in southern Idaho. Let me know how you do with the medical marijuna! I have mentioned it to my hubby in the past, I know there are people that swear by it! We should move to Colorado! LOL
gayle19455 deidra40034
Posted
deidra40034 gayle19455
Posted