New to Sjorgens, a few questions

Allergies, blood and immune system
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Hello all, 32 year old female who's new to this forum. I was recently diagnosed with Sjorgens syndrome, though I think I've had the symptoms for about 8 months. I live in Japan, so it's difficult for me to get information from local doctors. If any of my questions have been answered elsewhere, I'd be really grateful if someone could point me in the right direction!

Has anyone else experienced swollen/puffy dry under eye skin? My facial skin in general has been dry recently, but I've noticed the skin under my eyes has been looking particularly terrible, and doesn't seem to be responding to moisturizers etc. I'm finding it quite distressing as it's really aging my face.

I've been trying to find out about lifestyle changes I can make, does anyone have experience of symptoms being alleviated by diet changes or supplements?

Thanks in advance for any information you can give me.

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I am new too I have been diagnosis with Sicca Syndrome I was shocked I know something has been happening for months. My bloodwork neg no matter what I am tested for. I went to Oncologist yesterday. They were going to order a Bone Marrow. The Rheumo Dr wanted it.  The Oncologist  said no It is Sicca you have It is also that I have POLYMYOSITIS Which equal Sjogren's Syndrome I am suffering with really dry bad throat and mouth, eyes and ears no wax. Plus I use moisturizer all the time y whole body doesn't work.  Red rash on face for awhile.I am new but got made something wasn't showing up anywhere no matter ENT Rheumo. and GP Dr's

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Hi Diane,

Sorry to hear you're having a bad time. Just out of interest, was the rash all over your face or in specific areas?

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It looked like  butterfly plus my face was swollen

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That is Lupus, a autoimmune disorder, with butterfly rash on face.

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Oh that is very distressing Shari and you are only 32. It's quite amazing the variety of symptoms which patients get and although I haven't heard of the 'bags under the eyes' in relation to Sjögrens it's entirely possible. I would like to say that it may improve but have no evidence to suggest that it will or won't. Cheerful aren't I?

At the outset of my Sjögrens my hands became very thin, bony and old looking beyond my years. Unfortunately they haven't changed, however the thing in your favour is that you have been diagnosed very quickly compared to myself (8 years) and most other SS people. 

Please keep in touch as this is a great site for asking any related SS questions.

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 Hi Megheart,

​just was reading your response to Shari...about your hands becoming very thin and bony.  So far you are the only other one that I have noticed say that.  Mine too have done the same thing!  As a matter of fact all of my rings just fall off my fingers, even rings that I could barely get on or off for years!  I now have to have made smaller, even my wedding ring that has been snug for 40 years .  I have been wondering what the heck has been happening to my hands!  I was just thinking it was the prednisone making the skin so thin looking.         

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Hi Shari,

 

​I am sorry you are going through this!  Very frustrating not getting answers for sure!  But not at all unusual for those of us with auto immune issues!!  Can be very difficult to pin down, as so many have similar symptoms and such, as well as not showing up in our blood work for a long time, sometimes years.  But this rash of yours, like a butterfly is concerning as it is one of the signs of lupus.  My mother has lupus, as well as a friend of mine, both have the butterfly rash on their faces.  It has taken them a very long time to be diagnosed, my mom a year, and my friend 3 years.  You need a really good rheumy that has good knowledge of lupus and SS.  I was diagnosed with RA, SS first, then lupus, often times if you have one, you will or can have the other at some point.  Mine arrived fairly close together.  Within a year or so of each other.  Remember, you know your body, what feels right and what doesn't, at first we don't always get the diagnosis but our doctors will often go by our symptoms, and treat those.  So keep after those doctors there!  Change or get a second opinion if you can.  We wish you good luck!!  Please keep us posted, and keep visiting here, as there are a lot of well informed people as well as nurses and others with a lot of very good information on here!!

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I agree, Shelia. That's why I asked the question. Diane, did a doctor see the rash? This is indeed one of the classic signs of SLE. It's another AI condition in the same group as Sjogren's, and the two conditions sometimes overlap.

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Hi Shari,  I was diagnosed about 5 years ago with SS and went in because of symptoms of RA.  I have had symptoms of puffy eyes and patches of dry skin -- and still sometimes from time to time, I will get puffy eyes depending on what I eat.  I have been quite successful at managing my symptoms by changes my lifestyle.  I tackled 5 areas including:  sleep, diet, exercise, stress and reducing chemicals in my environment.  When I first heard that there was a possibility that I could actually possibly heal through these changes, I really thought it was a miracle -- like I was given a second chance, because three doctors I saw told me there was no cure and that they would prescribe medication as my symptoms became worse.  However, making the changes did help and most days I feel just fine, with my energy restored, and no pain in my joints and my residual symptoms are minimal most days depending on how I'm doing in my 5 areas.  There is so much information on the internet.  Please feel free to send me a private note if you have questions about specific literature because I don't think we can post it here.  But a healthy diet is soooo important!  When I start eating some of my trigger foods (sugar is a big one), then my symptoms with begin to reappear, so now I can see what I need to do.  It has taken me years, and I'm still working on it -- not easy to make big changes -- but definitely worth it. Some key words you can google are dysbiosis, which many people who have autoimmune diseases are likely to have.  You mentioned that you are in Japan -- and I'm in Asia too.  During the summer, when I am in my home country I see my Naturopath and she has been helping me on this journey of healing.  I am able to go get blood labs done here and then I email her the reports. Then she makes suggestions based on those reports.   I try to get most of what I need from a varied diet consisting mostly of fresh foods (fruits and veggies, fish and only little meat -- per my preference) -- I avoid processed foods about 95% of the time, dairy and especially sugars.  Beware the "hidden" sugars which can be found in breads, sauces, salad dressings, granola, dried fruit, juices, etc.    And if you need to take medications to alleviate current symptoms -- that is not a problem as you switch to a healthy lifestyle, because there are no side effects to eating healthy or getting rid of chemicals in your environment.  Typically, as you continue to make healthy changes, with the help of your doctor, you will likely be able to drop the medications altogether (unless you have thyroid problems -- only your doctor could know that).  Good luck!  And just know that there is hope.

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Thanks for your reply. I'm really hoping the swelling goes down but it's already been 5 months with no change, it's actually the most upsetting symptom for me right now.

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Thanks for your reply. I have been trying to make some changes to my diet, I'm not eating gluten, I've reduced sugar and I've increased my fruit and veg intake. I haven't noticed any difference so far. I think my main trigger is probably stress, but it's hard to get out of the cycle of stress.

I'll send you a PM if that's ok!

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I can't figure out how to send a private message!

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Never mind, got it

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Just a thought. have you had your kidney function checked?

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Good thinking, Megheart! I was about to post the same. That being said, I've been suffering extreme puffiness under my left eye only ever since the problems of extreme dryness in that eye started last year.

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I asked the doctor to check my thyroid levels when they did the blood test, she said everything was in normal levels. Although my blood test also came back negative for Sjorgrens, she diagnosed it on the basis of my symptoms only.

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Hi shari, I was in hypothyroidism for four years before my former GP reacted. I had a lot of the symptoms - hair loss (permanently lost my eyebrows), tiredness, constipation, puffy eyes - but she kept telling me my bloods were OK.

It was only when I asked for copies of my results that I could see what was going on.

I know this sounds a bit complicated, but there are two elements in thyroid blood tests: thyroid hormones T3 & T4, and thyroid stimulating hormone (TSH). TSH is secreted by the pituitary gland in the base of the brain, and does what it says on the tin - it stimulates the thyroid to produce T3 & T4. Therefore an abnormally high TSH means the pituitary is having to work overtime to gun the thyroid into producing its own hormones, and vice versa.

There are two schools of thought among doctors about the thyroid. One - which my doctor subscribed to - is that as long as T3/T4 levels are OK, it doesn't matter how hard the pituitary is having to work to keep it that way. The other says that if TSH levels are very high, it's a sign of covert hypothyroidism that needs treating, even if T3 & T4 are OK.

The latter turned out to be the case for me. Although TSH levels aren't supposed to be more than 4.5mU/L (on the European scale) mine were consistently around 14 throughout that period, even though T3/T4 were low-side normal.

I eventually put pressure on her and she sent me to an endocrinologist, who did all the thyroid tests and prescribed a daily top-up of thyroid hormone. That was six years ago, and I've been feeling a lot better ever since.

There are valid reasons why some doctors are reluctant to treat minor hypothyroidism in older women. One is that giving a thyroid hormone supplement can further reduce bone density, and another is that it theoretically increases the risk of breast cancer. However, the former is treatable, and the latter risk is actually so small it's scarcely worth taking into consideration. In any case, I feel it's the patient who should make an informed decision as to which risks she's prepared to take.

Sometimes we need to ask polite questions of our doctors!

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Today my vibrating of my whole body is worse it use to be just in my legs. I feel weird my body whole body feels numb and like it is vibrating from head to toe. My tongue is burning now and my mucus thick  I feel  so weird. I have no idea what is happening to me.  I also twitch I have no idea where or when my body will twich

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Diane, how much water do you drink every day? My only suggestion on that burning tongue is unsweetened applesauce, cold from the fridge, and hold a spoonful on your tongue as l9ng as you can stand it.

I went through a period of several years after my accident with a lot of twitching here and there. Started gabapentin a year or 2 later for other reasons & don't have so much trouble. Things still jerk occasionally, even in my abdomen, and I'll get short vibrations here and there, but nothing like before. Gabapentin to some extent acts as a neuro-muscular blocker.