Author Topic: Face swelling and Sjogrens  (Read 1030 times)

Izabelle

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Face swelling and Sjogrens
« on: November 09, 2012, 12:47:51 AM »
Hi All,
I am a 22 year old female with Sjogrens (diagnosed when i was 13). Lately it's been extremely active, and i've been quite ill for the past 4/5 months.
The face swelling i'm talking about is not glad related-  more eye related. About 6-7 years ago i woke up with a swollen eye. Doctor gave me a needle, and that was that. My family and i assumed something had bitten me.
This hasn't happened again until recently. 3 months ago i woke up with a swollen eye again. Of course i assumed something had bitten me. It was early hours of the morning and the hospital didn't really know either - was is a bite or an allergic reaction to anti biotics i was on? I was given a phenergen and it just went down over the course of the day.
However more recently, over the past few weeks, i've had mildly puffy eyes that improve by lunchtime - but last week i woke up with my right eye extremely swollen - along with most of my forehead and spanning across over my nose to the corner of my other eye.
I live in a regional town in Australia and it is extremely hard to get into a decent doctor. I went to a doctor that day who didn't help me at all. I just let the eye go down by itself. It took about 2-3 days to be completely back to normal. During the end of the swelling i had sort of a 'cat' look to my face. The inner corners of each eye and the bridge of my nose remained puffy.
Currently i am waiting a few more weeks until Nov 30th when a rheumatoid specialist from the city visits my area. It has been a 3 month wait to see him.
Have any other Sjogrens sufferers had problems with eye swelling? This is something i do not want to become a common occurrence - my job requires me to be out and about, meeting new people and a swollen face obviously really affects my appearance.
I have 4 photos taken i've taken of the swelling - the first being the worst, the last showing improvement. If i need to post these i will.
Any help is appreciated.

gurs

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Re: Face swelling and Sjogrens
« Reply #1 on: November 09, 2012, 06:39:24 AM »
I have the facial swelling/eyes..lids too.

I think its part of the Sjogrens, but Im also on 20mg of steriods daily, but I think most seems to be from allergies.

I guess thyroid and other hormone issues can contribute to this as well.

Gursie
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Joe S.

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  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD
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Re: Face swelling and Sjogrens
« Reply #2 on: November 09, 2012, 06:54:31 AM »
Welcome Izabelle. I feel sad every time I learn of someone as young as you getting this illness. But then I had symptoms that went back to my youth and I will soon be in my 60's. The mumps scarf may help with your face swelling. Here is my list of tips for dealing with this health challenge.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve
Reiki, reflexology, meditation, electro-herbalism

Friedbrain

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Re: Face swelling and Sjogrens
« Reply #3 on: November 09, 2012, 06:58:38 AM »
http://en.wikipedia.org/wiki/Angioedema

I don't know if that's what it is, but when I experienced face swelling a few years ago, this is what sounded most like it.  I woke up with it several times, most obviously around my mouth; but at its worst, it also spread out from there and was around my eyes, too.  I tried getting in to see the doctor that time but couldn't get in until the afternoon and by then it had resolved.  May have simply been a food allergy (I was eating peanuts at the time, but had been for a while with no problem, so...) or it may have been something more. I was under a lot of stress at the time, and weird symptoms always crop up when I'm under stress, as well as ongoing symptoms worsening. 

Sorry that I can't offer any helpful advice though.  I don't know anything more about this.  {{hugs}}