I'm wondering if anyone wakes up in the morning with severe facial swelling? This has been going on with me for about 6 months. This happens MOST mornings, but I do get some days "off", with just slight swelling and am able to hold my eyes open once i wake up. I haven't been able to figure out any pattern yet (is it the weather, something I ate, etc.) My face is so puffed up I don't even recognize myself. The swelling can be so bad that it blocks my ear, and my entire face is so TIGHT it feels like my head is going to explode. The swelling also causes pain in my parotid gland?it feels like everything in my head is being smashed together! The swelling around my eyes (eyelids especially) is the worst! The swelling, actually is so "heavy" it pushes my eyes shut! It's extremely hard to "wake up" when your eyes won't open!
I developed "droopy" eyelids a few months ago and just deal with that (disfigurement) all day every day, but in the morning, the eyelid swelling makes it extremely hard to "wake up". I can't describe the feeling of heaviness..my eyes feel as though they are being forced downward/ closed from all the swelling! I take my prednisone, plaque nil, and all my other morning meds and sit up in bed and just WAIT for the swelling to subside. Anyone else experience anything like this or any thoughts on what the heck could be causing this?
That sounds bloody miserable. Just out of curiosity, what happens when you sleep in a recliner and not lying so flat. It almost sounds like something is obstructing the flow of fluid return in your body when you lie flat. Could be pressure on the lymph system, etc. If it was related to the heart I would think that you would have tightness in your chest and wheezing in the morning. I am not a doctor but just the whole aspect of sitting up and the fluid draining out of the face during the day makes it sound like pressure from positioning, etc.
Might be time to get this checked out by your doc. Check for enlarged lymph nodes in deep places that can cause pressure also. Could be circulation or a probe with medicatioin also. It will be interesting to find out. Please keep us updated and hope it can be taken care of easily. Irish.
Oh this does sound "bloody miserable!" I'm so sorry. I've never experienced this before unless I've had some type of alergic reaction to a shampoo or hair product. Any chance of this?
I would go with what Irish our "house nurse" advised. I do hope you get some relief soon.
Grace and peace to you,
~Andrea
Hi K,
I'm so sorry for your misery.
Did you look up Myasthenia gravis? As this might also cause droopy eyelids.
Good luck!
Karen, I am with Irish. I say this as I have GERD. Not sure what laryngopharyngeal reflux is. Also, I don't note you are SjS positive. I have this problem as many do with goop (our compromised saliva/mucous) which travels up my Eustachian tube and I have my ears stopped up and clearing what is turning out to be practically chronically. I never pay attention if my neck is swollen. At my age, I am glad I waked up for the day!
Are we to understand you are more concerned about the look of your face or your discomfort? How long does it take to go down? Are you rested in the a.m.?
I dont get facial swelling never have, so cant say if that sjs or something else. Prednisone can cause face to swell up, but thats more continuous not just mornings. I would suggest you scheduled a very early appointment with your rheumy so they can see some of the swelling. When my fingers were puffy and tight in the morning my doc said we have to see you when this is happening..soo early morning.
Facial swelling can also be caused by hypothyroid. Have you had your thyroid levels checked recently. Perhaps you need a change in Levothyroxine dose or a different treatment. Some people don't do so well with the generic form and need a higher dose even though their levels are within the "normal
range". Something to discuss with your doctor.
Gail
High histamine levels can also cause this. Try reducing foods high in histamine. Some also swell up from foods high in salicylates.
Thank you all for your replies. I'm so new at actually posting, I'm not sure how to reply and make sure to let everyone that took the time to reply to me, know I've read and appreciated their response?so I hope this is the right way.
I have been diagnosed with "SICCA Syndrome and Diffuse Connective Tissue Disease by Rheumy. Due to all my symptoms and never-ending AutoImmune research, I believe I also have Lupus.
I thoroughly agree, that if I could sleep sitting up, the swelling would not be so bad. I also read about "lymphedema" and it pretty much explains my condition. It's mostly a reaction to chemo though and Thank God, I've not experienced that (yet). I believe too that this is related to a blockage in my lymph system. My rheumy, checks my lymph nodes around my swollen neck with this simple extremely gentle quick touch. I KNOW my DEEP lymph nodes are SWOLLEN. On a CT Scan and an MRI last winter, it was noted on the reports something about cervical lymph nodes 1cm or something. Just like EVERYTHING else with me, Dr's blew it off because it isn't REALLY that big. From what I've read, 1cm (not sure if that's the correct #) is on the border and could mean something. Articles suggested that if there are physical problems and symptoms in that particular area, further research is necessary. My Rheumy does not like me to "help" her out in any way with suggestions, etc. So I agree there's a blockage or something causing this horrible swelling.
I never heard of Laropharyngeal reflux myself but Otolaryngologist diagnosed me after he did that horrid scope that goes up the nose and down the throat. I'm sorry, that was last year and my memory is so bad anymore. I believe it's erosion, redness, irritation in the esophagus. I never suffered from heart burn or anything so I was very surprised to hear this and to have to take medication every day for it.
Lastly, in this situation and with all the other physical problems, ailments, my cosmetic appearance is the LAST thing I'm worried about. The swelling is so uncomfortable, even painful. It used to subside (almost disappear) a few hours after I woke up but it seems to be getting worse and hanging around all day?and much worse in the mornings. It's also kind of frightening?.Sometimes I think the swelling may cut off my air supply. It seems to be very abnormal, even here on the forum, but mostly, I am concerned due to the pain, discomfort and knowing there's something wrong. The unknown, no answers, invisible, chronic?.you would think I'd be used to it by now.
Thank you all for your feed back and assistance. It always makes me feel so much better. I so appreciate all the members of this forum, their knowledge, kindness and support. I hope I didn't miss anything.
Karen, the first thing you need to do is find a new rheumy who will listen to you. I hope you can find someone very soon.
Hugs, Sharon
I have this as well....the past 6 months have been bad. Im on steroids, so sure it has something to do with it, but I really think
its allergies..for sure. Started when I moved into a place with black mold. I bet its allergies..for sure.
I gained 5 pounds too..feels like water..even my bra's are tight...yucky!
Gurs