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Nannato11

Sjogrens Syndrome

14 posts in this topic

Hi,

So far I have found one other person with sjogrens. I'm just so interested in everyones life. I am very limited to what medications I can take. Some raise my blood sugar. And others my stomach can't tolerate. And I'm also allergic to so many meds.

Last night we attended our gr. daughters concert at school. Whenever I go to places where there are large groups or even small groups, I get so sick from any odors. (perfumes, hair sprays, etc.) Thank goodness our state has made almost everywhere smoke free. I am so allergic to any type of smoke. I didn't use to be. Just wondering if anyone has had such changes in their lives.

The skin on my feet is so tight. And I'm getting shiny bumps on several toes. I also have neuropathy in my feet and affecting some organs. But my neuropathy has changed from the burning to the tightness. I'm still reading and learning so much from this site.

I agree with so many. This IS a wonderful site filled with such nice people.

Thank you,

Nanna

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Nanna,

I don't have Sjogrens but ever since I got sclero I have become extremely sensitive to smoke, perfumes or any heavy scent. With smoke and some perfumes I find it hard to breathe and most of it sends me into an uncontrollable cough. Thank goodness for the new smoking laws!

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello! I was diagnosis with Sjogrens almost two years ago. I take Evoxac for it. You were talking about smells, I to can't stand any that smells. Cigarrett smoke or any kind of smoke makes it hard to breath. The smells have been like that for a long time. As for the smoke I use to smoke and I had quit about 8 years ago. But if I wasn't smoking the smoke from others would just bother me. Doesn't make since.


Sam

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Hello Nanna,

My mother has Sjogren's. She has had it for a long time and I have watched her deal with different issues. So far she has chosen not to take any medicactions that might help or curb her Sjogren's symptoms. Instead she sees a nutritionist.

 

She is allergic to all "night shade" foods such as tomatoes, eggplant, etc. She is allergic to all perfumes and has very sensitive skin. She also has the deep burning in her arms and legs, very dry eyes and has extensive work done on her teeth in order to save them.

 

Despite her Sjogren's she does as much as her body will allow her to do each and every day and she is able to live a full life.

 

I am sure that others here will share their experience with Sjogren's.

 

Here is a link from the ISN that explains different aspects of Sjogren's in relation to Scleroderma:

http://www.sclero.org/scleroderma/symptoms/sjogrens/a-to-z.html


*WestCoast*

 

********

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Hi Nanna,

I have scleroderma and sjogrens. I take salagen and carry lots of moisturizer, chapstick, gum, eye drops and bottled water. I am also very sensitive to smells and smoke, but I also have lung complications so I avoid anything that makes it hard for me to breathe. I have found omega-3 and flax seed to be helpful especially with my dry eyes. I was putting drops in 3-4x a day. Now, maybe once a month.

 

I highly recommend a specific brand of drymouth toothpaste. You can PM me for more info.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Nanna,

I too can't tolerate perfume. One Sunday in church I had to move to another pew. I also can't tolerate smoke. Many places still allow smoking here in Richmond, Virginia. I have horrible food allergies and environmental allergies. I have had Sjogren's since 1998.

Nan

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Hi Nanna,

 

My rheumatologist told it it looked like I was in early Sjogrens about 8 months ago. I live in denial and pretend I don't have it until he tells me for sure. :D However, he did send me to an eye doctor and dentist to see how it had affected those areas. I am now on eye drops several times a day to help moisten my eyes and I'm also using a special toothpaste the dentist gave me. The dentist stated decay can happen very very fast with Sjogrens. Anyway, those are the only symptoms I'm experiencing with it thus far. Hope it stays that way.

 

I don't seem to have any problem with smells other than smoke, but I've always hated that smell, long before my CTD.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hey Nanna,

You can add me to the list of those with Sjorens. I just turned 49 this month. I was misdiagnosed for 4 years until early 2002 when I got the diagnosis of CREST. I had been having touble with my teeth while I was misdiagnosed. My teeth rapidly began to dissolve and crumble. I used special mouthwash , toothpaste, etc and it didn't really help me. I have a cup that goes with me EVERYWHERE!! I have such a dry mouth Unfortuneately I lost the battle to save my teeth. I finally had the ones I had left surgically removed last year and have full dentures. They took some getting use to but I finally did. I am so dry , I sometimes wonder if I'm just going to crumble into a pile of dust instantly :P .I, too, am super sensitive to smoke and other strong odors. I deal with each day the best I can and I quit apologizing for not being able to keep up or tolerate things that bother me (like odors, smoke, etc) I do my best to live each day I am given. I refuse to let this disease get the best of me. Of course I have my down times when I throw myself a pity party, but who doesn't? Hang in there !!!We are all in this boat together and we won't let it sink!! :)


Peace :)

Barbara aka relicmom1

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I've had Sjogren's for about 8 years - CREST (CRST) scleroderma for 30 years. I'm not unusually sensitive to odors - though I prefer plain fresh air to all of the fragrances with which people seem to pollute the air.

 

I also use the special toothpaste for dry mouth, as well as the mouthwash. If I get up during the night, I frequently swish around some of the mouthwash. It seems to help with some of the soreness. I was taking Evoxac (which only seemed to help a little), but it seemed to cause itching, so I stopped.

 

Also have some neuropathy in my feet - but that came from cancer treatment. I take some pain killers for it.

 

Craig

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Though I feel I've had Sjogrens for quite some time, I just recently got diagnosed with it. Just curious...do you or others of you who have Sjogrens... also have trouble with your senses?... Smell, taste, hearing? The reason I ask is because I'm really plagued with all 3 areas... I always loved to cook, but of late, I've had problems with it... you know... pinch of this dash of that taste this, etc... frustrating :unsure:

My nose works if something is really potent, but... My hearing isn't as good, either... Can't all of these issues be connected to Sjogrens? I haven't seen an ENT, but I'm sure it's something I need to do :(

As for smoke... I've become very sensitive to it, as I've been around it less and less, for which I'm thankful.

Thank you in advance, for any thing you can tell me about the above.

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I have some trouble with smell - sometimes I mistake odors, like there's confusion. Definitely have hearing problems - tinnitus along with a high frequency hearing loss. I've sometimes thought it might have had something to do with the use of Plaquenil. I haven't been exposed to loud sounds, which is the usual cause.

 

Oddly, my hearing loss makes it difficult to discern words, often even when spoken loudly - Example, I might confuse "health" with "house", even when spoken quite loudly. A voice that enunciates strongly is easy to hear, even when spoken softly. Conversely, a slurred or nasal voice is difficult to make out, even when spoken loudly. Sometimes I think of it as dyslexia of the ears.

 

Craig

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Susie,

Now there's a thought... I've never had a great sense of smell and thus my sense of taste is lacking. I pretty much love bland food. My husband says I have hearing problems or maybe that I have selective hearing or maybe I don't like to hear when he tells me not to buy things. hahahha. No really, seriously my hearing has been in question over the last year but I never made the connection to sjogrens.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Peanut,

I have heard of a ringing in the ear associated with autoimmune disorders. That could interfere with hearing. I know that my mother (who has Sjogren's) has off and on pain in the ear, but she is not sure why.

 

That is an interesting thought though, I wonder what a doctor would say to that?


*WestCoast*

 

********

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