Hi All,
I am very new here but have had Sjoegren's, Relapsing Polychondritis and MS for years now. I was in remission for many years and now all is back but a little different this time.
My question is, have any of you experienced your lymph nodes (especially parotids and submandibualr) swelling each afternoon/evening? I am fine in the morning, but by afternoon or dinner time at the latest, they begin to swell and I become a chipmunk!
Does this have anything to do with eating and the glands trying to work and having issues?
I should add that I am on Plaquenil 200mg twice daily x 1.5 months now, and was joint pain free for several weeks but now also have a little joint pain again. Maybe it needs to be increased?
Thanks in advance for any info!
Flower
:D
Hi Flowerchild,
A few years before my diagnosis, I woukd have the afternoon parotid gland swelling and pain. I did not know at the time it was my parotids, I kept thinking it was might throat getting tight and neck pain from stress .
I now know that what I was eating at the time was causing it. My glands react quite quickly to certain foods, like wheat products, sweeteners, sodas ect. When I started keeping a food diary and noting and keeping track of my symptoms, that truly helped get my gland swelling under control.
I have been gluten free for almost two years now and saw an allergist who discovered some food allergies and knowing this has helped so much.
I hope you figure it out, parotid swelling is no fun at all. Good luck to you.
Thank you JellyB!
This does make sense. I always take Benadryl at bed time to help me sleep, so it probably also helps the glands go down by morning. I probably need to stop dairy (but oh how I love my cheese!!!) but keeping a food diary is a very good idea.
Have a lovely evening!
wow, YES!
I thought I was the only one.
I awake each morning with the swelling , heat and stinging gone.If its back by noon( even without food) I know it's is going to be a rough day!
Usually I will feel intense fatigue just as it starts and almost that I am running a slight fever.Sometimes a week or maybe even two will pass without daily swelling and stinging( for me this is mainly in my sub mandibles) and then it comes back for weeks or months each day.
If I am having a good day it won't happen until 4 or 5pm or later.Sometimes it will start as early as 10am. the busier i am physically the earlier it will start for the day.
So glad you brought this up!
Not glad you have it...but glad I am not the only one. Thought I was going nuts!
I do get fatigue and joint pain with it and some chills as well. So is this like a small flair up?
Are you on Plaquenil by any chance?
Wear your polar fleece mumps scarf to bed.
Sorry for all the trouble you have with your parotid glands. I have just about every thing one might have with SJS, but so far I am darn lucky not to have problems in that area. If I do have it later on, I will sure recognize it after hearing all the others with problems. Hope everyone feels better soon. Lucy
Quote from: Flowerchild on January 09, 2013, 02:25:10 PM
I always take Benadryl at bed time to help me sleep, so it probably also helps the glands go down by morning.
Hi Flowergirl,
Don't think the Benadryl is keeping the glands down, because mine are also down in the morning & I don't take Benadryl. I also get the feeling the swelling might be due to food allergies - 'cause when I'm on the fruit diet, I have no swelling at all... Now only to find out which foods to avoid ! :-\ (bah - cause I love cheese too).
It's not the worst symptom I've had....but a bit annoying. The joint pain and fatigue is the worst for me. I am on a farm and have ducks, chickens, and 2 pot belly pigs and it's hard to go to the barn and hang out with them when my joints are bad.
Going to keep a food diary now. Why is it one ends up being sensitive to the lovely things like cheese and bread? Why can't it be liver???? I'd have no problem avoiding that!
Thanks everyone for your help!
Sending y'all healing energy!
hey Flowerchild!
Nope- no plaquinel here.
And I do have to say Joe is onto something- it is worse through the colder months( I am Canadian) and wearing wool scarves or cowls helps.
I also live on a 150 acre farm and achy joints and fatigue cause more problems in my day to day world than the swelling and stinging but I am glad you mentioned it happening in a cyclical pattern for you as well-I had thought I was crazy!
I thought I was nuts to!
150 acres...how heavenly. We have 21.
Flowerchild, If you are having trouble with your joints. You can try Dark Cherry Extract. It has been used for at least 5 centuries.
I started using Bosweila and PQQ last March when my bone doctor suggested that I needed immediate knee replacement. Last week at my last visit with him he told me I have a mild case of arthritis in my knees. My reading in LEF magazine suggests that two years of supplements will remove most Arthritis from all joints. LEF.org Has a lot of good articles on supplements. It was originally a book on Life Extention written by two biochemistry researchers. I find their big book on diseases and treatments very good. The magazine articles are usually support with pages and pages of documenting papers and reports. Susan Somers now has a TV show that reports on their work.
Welcome,
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.
I will look into the dark cherry extract and Bosweila...What is PQQ?
Thanks!