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Posted 9/2/2008 1:10 AM (GMT 0)
I know all about the moon face from steroids but I was wondering if anyone ever noticed days when you face just looks really puffy? It comes and goes. My Brother and sil say they notice it a couple times a week. Of course they think it's because I need to be up moving around when I'm sick and the laying around is making it puffy. I think they are full of **** as far as the reason goes.. But I do notice that my face swells off and on with no difference in my pred. I'm thinking fluid retention??? Any ideas?

thanks

Posted 9/2/2008 1:23 AM (GMT 0)
Hi okie,

Well, your bro and sil are full of ****. Face swelling can be caused by different things, but just laying around is not one of them. It could be fluid retention. I had that problem when I was first diagnosed with lupus. It is definately something to bring up to your doctor.

I hope things improve for you soon. (((HUGS)))
Posted 9/2/2008 2:56 AM (GMT 0)

Hi Robin, thanks for responding. I have an appt with my pulm. on wednesday I'll mention it to him. Yes my family would rather just throw out their opinion with no research or anything. Just another case of denial. but 3 more months nd I'll be back in arizona. I'm diffinently thinking it has to do with water retention. I'm on lasix but it doesn't always work well.

thanks again

Posted 9/2/2008 1:25 PM (GMT 0)
Hi Okie,
Because of my many allergies, I often have face, neck and throat swelling. The first thing the doctors did was encourage a much lower sodium diet. When that helped but didn't completely eliminate the problem, we began eliminating certain foods and generic meds. That helped a lot!
Hope your doctor visit goes well and you are feeling better.
Posted 9/2/2008 3:12 PM (GMT 0)

Thanks fran, I guess it probably has somthing to do with how much pop I drink. I know it's loaded with sodium. It's just that I don't drink, smoke, cuss, or any of those others things I used to do. I was a wild child. Since I got sick I have sacrificed all my old ways. Somtimes I just wonder how much of me is left in there to get rid of and still be who I am? I guess in short I am sick of giving up everything I enjoy. Not that drinking smoking and cussing is all I enjoy LOL, but this disease sure does demand a lot. I'm sorry I guess I'm just ranting.

I'll let ya know how it goes tomorrow

hugs

Posted 9/2/2008 5:32 PM (GMT 0)
Hi Carol:

I have notice that I too have face swelling other than my moon face. I notice the swelling mostly in and around my eyes. Some days my eye lids all the way up to the eye brow is so swollen it looks like the skin will pop if you touch it. I'm not sure why I have this swelling but I guess I just ignore it.

As you know I'm having a huge problem with how I'm feeling. I'm so close to just giving up. I don't know if I can continue to do this anymore. So I've really not mentioned the swelling to my doctor.

I would suggest that you mention it to your Pulmonary doctor, I hope they can do something to help you with this. I want to say I'm so sorry about your COPD and the Dr's news of you only living 8 years. I know you know I understand how that makes you feel. As you know I'm currently waiting to be "sick enough" to get my bone marrow transplant. I get so so frustrated with Doctors. If they could only live in our shoes for a few days. I think they would change their attitude towards their patients.

You take care my friend and I hope you're having a fairly good day today.

Hugs,
Barb
Posted 9/2/2008 10:28 PM (GMT 0)
Hi! One of my first symptoms was awful facial swelling, mostly around my eyes, nose and cheeks. It was so bad that I would have to be awake for over an hour sitting upright until the swelling went down that I could open my eyes. I am NOT agreeing with your brother and sister, but there is slight truth behind what they are saying, although I'm sure they aren't conveying it in the nicest way. Swelling works with gravity, so if you are upright, you may notice that some of the puffiness goes down after awhile, if you lay down that extra fluid isn't going to drain. It's like a broken ankle that you keep elevated to keep the swelling down. That being said, with facial swelling, I would definitely inform you doc about it right away just for the concern of any airway involvement. Have you been worked up for dermatomyositis??

Take care

-MJ
Posted 9/2/2008 11:07 PM (GMT 0)
Hey Carol,

 

Hmmmmmm.  I have no idea what to tell ya!  LOL.  That is a conundrum.  I get swelling, but not in my face. 

 

You said it girl.... This disease sure does demand a lot.  I'm right there with you.  How exhausted and frustrated do you have to get before you seriously lose it?? smhair

 

Please seek out answers on this soon, okay?  Now I'm worried for you..... Are you drinking enough water?  Sometimes if you're dehydrated, swelling can occur.  I'm grasping at straws here....

 

love ya!

Ginny

Posted 9/3/2008 2:58 AM (GMT 0)

Thanks everyone, Barb sending you huge hugs.I tried to call you today but your cell was off. I know you are sick and tired of being sick and tired. We just got to make it through one more day at a time. I'll talkto my doctor in the morning. Love ya

Hi MJ it's odd you should ask about the derma stuff lol. I was doing some research the other day and it was the kin to dermamyasistis that kept popping up at me. I wish I could remember what it was now. It's the first I had ever heard of those two things. Maybe I could go back through my posts and see if I can find it. I was just curious as to why you asked me that. Do you have it?

thanks again hugs

Hi ya Ginny, Well this is another fine mess ya gotten me into Ollie! smhair Yeah I swell up in a lot of places. Unfortunately none of them where I would like to swell up. tongue The water here is so bad I really need to get it delivered in those containers. I love water but not this stuff. rolleyes

love ya

Posted 9/3/2008 3:33 AM (GMT 0)
Hi again! I came back deficient in C1 esterase inhibitor which is apparently one of the markers for dermatomyositis. I don't see the immunologist until next week, so Im wondering if I will get an "official" diagnosis. I'm also getting a skin biopsy at the end of the month to check for it. Usually polymyositis and dermatomyositis go hand in hand, but unfortunately, I don't know too much about them. I actually took care of a patient with dermato and realized that my face resembled theirs and talked to my doc about it. It gets pretty bad, and as soon as I start to taper down the pred the swelling starts again. Its a viscious cycle, the swelling seems to stay away only with dose of 10mg or higher. ugh! I will try and find some links on dermato/poly and post them
Posted 9/3/2008 3:38 AM (GMT 0)
here is a good link that discussed both polymyositis and dermatomyositis

http://www.medicinenet.com/polymyositis/article.htm
Posted 9/3/2008 6:31 AM (GMT 0)

Hey MJ, thanks for the link. Let me know what you find out. I did find where I posted about it and bill sent me this link so I thought I'd pass it on to you.

http://www.mda.org/publications/fa-myosi-qa.html

thanks again

Posted 9/3/2008 5:06 PM (GMT 0)
hi there people,i've bin reading about facial swelling.I myself have bad facial swelling as a result of lupus & rheumatoid arthritis.Some days its worse than others but am always aware of it.I also have butterfly rash on my face.I cope for my kids sake.any1 in a similar position feel free to reply sad I am also on a high dose of steroids & immunosuppressants.

Post Edited (xenia) : 9/3/2008 11:09:13 AM (GMT-6)

Posted 9/4/2008 12:22 AM (GMT 0)
Hey Carol,

That site was great, I loved how it broke down the three conditions individually. Hopefully I will get some answers on Monday!

-MJ
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