Ehlers-Danlos Support UK
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Facial swelling with EDS?

Hi all!

I am 28 and have EDS3, endometriosis, anemia, underactive thyroid, migranes with aura, fibromyalgia, Raynaud’s, IBS and what not... i have been getting more and more severe facial bloating during the past years. At first it came and subsided after a couple of days, then it subsided with water pills. Now it does not subside. It is not very extreme so doctors do not listen, but makes me look very puffy and restricts me from using mascara (upper eyelids are the worst and hang on my eyes). Once in a while it goes down for a day, but is always back the next morning.

What on earth can cause this? Does anyone have the same issue? My thyroid is medicated, my anemia is medicated, is it EDS? It is very depressing and feels heavy, and is making wrinkles when the skin stretches and shrinks all the time :(

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I experience a puffy face, eyes and neck, especially on the left neck where it meets the shoulder but I have a lot more going on than just my EDS, so cant really say what it's caused by unfortunately. 😕

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Have you had your thyroid levels checked recently? You should have bloods taken ideally first thing in the morning, 8.30, leaving 24hrs since your last dose of thyroid meds whilst fasting. Were your thyroid antibodies checked? Any sign of Hashimotos? Just that the puffy eyes and facial swelling is indicative of hypothyroidism. You may not be optimally medicated. The thyroid also needs support from optimal iron, ferritin and B12 levels. Have you had these checked? The thyroid support section of this forum is very helpful as is thyroiduk.

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Thanks for your reply! Yea i’ve had them taken in the early morning after fasting, last time my t4 was 16 (10-21) and ths 0.9 (0.5-4), antibodies were ok as well. (Finnish labs so values might differ?) Hashimoto’s should be ruled out. Ferritin was really low and i’m on iron supplements now, but the puffiness has only gotten worse. B12 was also checked and should be fine. I would love to give armour a go, but the docs in Finland are getting in trouble for giving it to patients so nobody will anymore. :( thanks for your thoughts!

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Hello Anri. I suffer too with autoimmune syndrome, a different one. The unpredictable day of certain effects of reactions has been such a hell to live with. My three daughters each have certain symptoms, too. I am sorry for this face predicament. My face swells in two reactions, shopping for clothes because of petroleum fabric finish and fall pollens. I hope you can trace a food or place that gives this reaction such consequences.

With care

Jane

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My eyelids swell up sometimes but I've always put it down to an allergic reaction as my allergies mostly affect my skin (having a lot of alcohol definitely seemed to cause my eyelids to swell the following morning)

I don't get severe facial swelling like you describe but I do feel like face looks a little puffy or swollen recently on some days although I assumed that might be to do with medication or coming off medication. Have never had thyroid checked. Is that something else linked to EDS?

Hope you get some answers

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Thanks for your reply :) alcohol definately triggers a big one for me as well. It seems to me that EDS affects systematically the whole body, making a lot of things function a little wrong - thyroid problems seem to be one thing that is quite common. I would def recommend you check your thyroid values since like many said, it could cause the swelling. I am looking into malfunctions in the lymphatic system related to EDS atm - since i would belive it could be compromised as the connective tissue is not perfect with us. Will report if i find anything interesting :)

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Sounds like a mast cell response, have you tried cetirizine? Good luck

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Yea antihistamines don’t make a difference. :(

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I had no discernible difference till I was prescribed ranitidine in conjunction with cetirizine. Ranitidine was first developed as an anti allergen.

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Really, ok i need to look into that! Thanks :)

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Anri,

I too deal with this pretty regularly, especially on the right side of my face, but have had two very distressing incidents which took upwards of 7 days to get back to my normal face. I wanted to post a pic to show the severity, but I cannot figure out how to do this on this site.

I take Zyrtec regularly and have had to add oral steroids when the swelling gets bad. My rheumatologist has helped me more than anyone.

Hang in there,

Dianne :)

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Looking into sodium cromlicate and loratadine- the combination of those stopped my eye lid swelling and facial flushing which was pretty bad for years. Also avoiding alcohol and crying (started having reactions to my own tears even if it was a tear from a yawn). That’s what has helped me the most with my EDS/MCAS

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Hi Anri 😊🌸🌿🦋

I had facial swelling with my Endometriosis and associated tumors. Once my total hysterectomy tumors removed the facial swelling subsided.

That was 20 years ago. I now suffer full body edema from painsomnia and inability to sleep in my bed. So swelling can be caused by other conditions too.

Are you salt sensitive??? Ever tried diuretics??

I’m sooo sorry about your dilemma. Hope it’s sorted soon.

😊🌸🌿🦋🙏🤗💗😘

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Hi there! i have the same diagnosis with you. December 2017 my eyes just started to be swollen for no reason. They have been swollen since then but like you say but one day they are swollen and the other day not so much. It is now october 2018 and my eyes are still swollen and in pain. The doctors been taking bloodtests and an xray but no sign of the cause why my eyes swollen.

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