New to Sjorgens, a few questions
Posted , 12 users are following.
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.
2 likes, 45 replies
deidra40034 shari10176
Posted
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!!
diane03050 deidra40034
Posted
It is weird you do know your body. I know mine and I am telling Dr's what is happening to me and 4 aren't listening. I can't keep doing this. When are they going to listen I have bad pain in right hip when I put pressure on my right leg going upstairs is painful. Dr's. aren't listening to me to do a CT an. My pain management Dr doing a shot in hip this week That will help he says I want to know why it is painful. I am going to Gp today a 5pm I an going to tell him everything and say something is wrong find out!
lily65668 diane03050
Posted
Hi Diane,
I think you're right in not accepting treatment for the symptoms before you've found out what's really wrong. This can be useful once you have a diagnosis, but just treating the symptoms piecemeal can mask some of the picture if you haven't yet been diagnosed.
morelia100 shari10176
Posted
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.
shari10176 morelia100
Posted
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!
shari10176 morelia100
Posted
I can't figure out how to send a private message!
shari10176
Posted
Megheart shari10176
Posted
lily65668 Megheart
Posted
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.
shari10176 Megheart
Posted
lily65668 shari10176
Posted
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!
shari10176 lily65668
Posted
I should be getting my results tomorrow, it's all very new and complicated for me and unfortunately since I live in Japan I don't understand everything the doctor is saying. But I'll try and make sense of the results when I see then myself! Did your eyes stop being puffy once you were put on the correct medicine?
lily65668 shari10176
Posted
Hi Shari,
Yes, a bit. I have to clarify that I've had naturally puffy eyes, ever since childhood. No one ever found a reason for this. Looking at photos of my paternal grandmother, I can see I inherited it from her. However, the additional puffiness associated with hypothyroidism did subside once my thyroid output was regulated by L-thyroxine tablets.
The current additional puffiness under the inner corner of my left eye is clearly associated with the pain and dryness I've been having in that eye, and I'm still awaiting my appointment with a (hopefully) competent ophthalmologist in three weeks' time, as opposed to the incompetent one I saw three weeks ago.
It must be difficult getting accurate information from your doctors when you're not fluent in the language. I sympathise.
shari10176 lily65668
Posted
Hi Lily, thanks for your reply. I've never had puffy eyes before this, it seemed to happen pretty much overnight. Have you found anything that helps with the puffiness other than medicine? eg. creams, hot/cold compresses, etc.
lily65668 shari10176
Posted
No shari, sadly not. Hot compresses are supposed to be good, but they make my eyes even more sore. But they might be worth a try for you. As most of it is genetic in my case, I've just had to learn to live with it!
I'm still quite concerned about the additional swelling under the inner corner of my left eye though. That's something new, and clearly associated with the pain, dryness and increasingly blurred vision in that eye. My ophthalmologist appointment is three weeks tomorrow, so I'll have to wait and see what he says.
shari10176 lily65668
Posted
Good luck with your appointment! Please let us know if they tell you any useful information.