So many symptoms, what's going on?
Posted , 6 users are following.
I'm still in the process of being fully diagnosed. I've always been someone so actively involved in my family's life and now I feel so weak most of the time. I have a severe dry throat which drys out my mouth and nasal passages. I have joint pain on my knuckles, shoulders and ankles. I've started to see pitted fingertips which is alarming. My Rheumotologist put me on Placqunil a mouth ago but still feel loozy. I have lost my appetite because I struggle so much with the production of saliva. I try to eat healthy when I can. I did notice that when I overdo meals or eat sweets like ice cream, my throat drys up even more. Does anyone else have this issue? Does anyone else suffer from.not only dry mouth but dry throat? So confused. With the help of God, I know I can managed this but have million questions right now.Any support groups in Pennsylvania?
Hanging strong, God bless us all,
Nu2this
1 like, 7 replies
Ccfbarb Nu2this
Posted
I was just taken off Plaquenil due to toxicity to my retinas. Plaquenil really helped my dry mouth symptoms. Even on it I find it hard to eat and swallow. I'm always biting my cheek or tongue when chewing and because my saliva production is poor, food does seem to go down, but slowly. I always have some fluid with me, or I get so dry I have a hard time talking.
jennifer09136 Nu2this
Posted
SS is a very individual scenario - what affect one does not affect the other, and solutions for some are not the solutions for others. I have extremely dry mouth and throat and swallowing difficulties, but ice-cream is probably my favourite and best food. It soothes and requires no swallowing effort. Just deal with 1 issue at a time, surround yourself with good Drs, don't get overwhelmed, and with God's help you will mange.
Nu2this jennifer09136
Posted
Thanks Jennifer09136. This is 2 month old for me and I have yet to manage my symptoms. Everyday is different. I try to read up on what can make symptoms worse and I am beginning to realize that no two cases are the same. I've been looking up Sjogren's Diet as there are days I can't take anything in but water. I lost 15 pounds not even wanting too. When I can eat I do but notice I have a hard time the following day because of the dry throat. Example I had soft chocolate ice cream and a soft drink yesterday after months and today is a challenge. I am beginning to notice that certain foods trigger it and the meds have not kicked in yet. I am starting to make myself tumeric and ginger tea. I hope it will help.
morelia100 Nu2this
Posted
Hi Nu2this, I thought I would share my experience in case it can help you. When I was first diagnosed I was quite depressed that several of my doctors could only recommend medications. I was ecstatic the day I discovered that there was hope in healing naturally. In fact, it was this very same support forum that I found a clue about diets. So I started researching and found some great resources. It's true that we are all different with symptoms and reactions, however, many people with autoimmune problems also share some similarities. A naturopath can be great help in guiding you through the jungle of information. I would say that it is important to heal the lining of your stomach which can be done by avoiding foods that can harm the lining and eating foods that are easy on the stomach or help aid. You can figure this out with a little time and patience though a process of elimination or you can have your blood tested for sensitivities too many foods (this can be expensive $250-$800 depending on the test). You could also just avoid eating the 5 most common problematic foods groups which include all forms of: white sugar, corn, soy, dairy, and wheat. I did this for 3 months and I felt great with many of my symptoms diminishing or vanishing. I wish I would have done it for longer, but I have somewhat poor discipline. But it still was enough to help me in so many ways. Check out the internet for some good literature on autoimmune disease. I hope this helps. There is much more, but this note is already too long
aitarg35939 Nu2this
Posted
Contact the Sjogren's Foundation in Baltimore, at Johns Hopkins, and they'll put you in touch with the folks who run the support group closest to you. They definitely won't answer on the weekend, and I'd not be surprised if it takes a bit longer between the eclipse (people off work) and universities gearing up for fall semester.
I use evoxac/civemeline so things aren't the same for me. Before I went on it and to this day, I keep some unsweetened applesauce in my fridge, preferably organic & either with cinnamon or some other fruit but plain is fine. When my mouth is really dry, I get some applesauce. Swallow some, then hold some in my mouth as long as possible.
Sugar and artificial sweeteners may seem pleasant at the time. Real white sugar is a substance that's only been available to most of the world for a few hundred years. Our bodies weren't designed to be processing the stuff. Artificial sweeteners -- even more foreign substance than white sugar.
Stevia and erythritol have been around much longer, used in Asia and they don't raise blood sugar until consumed in vast quantities, versus the instant effect of sugar, agave, honey, etc. S & E are aften used together, partly to counter the bitter aftertaste of stevia.
Other fruit in natural juices help too, and the chewing motion helps stimulate whatever salivary function you may have left. Refrigeration helps because cold liquids are more quickly bioavailable to mucus membrane. Sports drinks are more quickly bioavailable than water but one needs to read carefully to avoid all the oils in them, which coat mucus membrane and slow down that bioavailability. Moi, I keep these around for the worst of times and am apt to dilute them with water because the taste is !!!
I hope that your symotoms settle & the plaquenil starts helping, soon.
Nu2this aitarg35939
Posted
aitarg35939 Nu2this
Posted
Oops, my bad. Moi = me, in French. I didn't think when I used it, and i especially didn't think how it would seem in the context of names of odd ingredients.
IMHO, try some products that use stevia and erythritol. Erythritol is a sticky mess to use, especially if you work with it in humid weather. Go online and search for foods that use these, then try some out. There was a line of great ice cream bars which aren't sold in my store any more, but now there's Halo Top in pints, using erythritol, sugar ("cane sugar"
and stevia. Follow the instructions to let it soften a bit. My fave is salted caramel but I haven't tried them all. Don't expect it to be the same as your favorite ice cream, because it's not: at 220 - 350 cals PER PINT!, with 20g protein per pint, it will be different but is still quite good.
Monk fruit is another good healthier sweetener. I've bought that in regular groceries in boxes of individual packets -- on cutout because it was so expensive.
I still eat some sugar & carbs but had to make changes a few years ago. I had become pre-diabetic. I'm not saying that you are in that condition, but even for healthy people sugar has a hangover effect. Most of us Americans consume so much of it that we could never notice, being constantly in the hair of the dog situation: cake or ice cream at night then sugar in tea or coffee, plus sweet cereal, yogurt, etc., in the morning. Your system seems extra sensitive now.
These are just suggestions. Morelia knows more about diet than I do. Many folks here cut out dairy which I cannot do as it is an irreplaceable source of 30-80% of my protein on a daily basis. Others cut out gluten. I don't consume much of it. I did notice something during a stressful time this year when I couldn't get home for meals. If I stopped for a burger or something like that 2 days in a row, my whole body felt heavy & sluggish the next day. No problem if I stop at a local chain that uses really good beef and much smaller portions so less bread. The other nation-wide chains often add gluten into their meats, and the buns are so huge that one gets at least 2 days serving of bread in one meal. It's not surprising that I felt so much worse eating that stuff!
Happy shopping.