Lupus Support Group

I have been suffering from swelling that is very uncomfortable and quite frankly, scary. It happened last Thursday evening again as it had been several months since I have experience it, nothing different that evening except hubby and I had a huge blow-up, I didn't eat dinner(stress)and had a severe headache with the drooping of left eye and pressure on that side of my head which is not uncommon for me and I was going to lay down and just sleep on the couch but when I laid down I found myself unable to get a good breath and started to panic, I was going to drive myself to ER but decided to just sit up and try to relax and do some deep breathing exercises and was able to sleep sitting up. I made an appt with GP next morning. So I just went for another round of blood work along with another urinalysis. My Rhuemy advised I have another since the urinalysis he did about a week before indicated blood in my urine which caused concern with the other issues I am having. The swelling has stayed primarily on my left side. I have had a lump on the left side of my neck as well as drooping and swelling of left eye, side of face, and the lump on the side of my neck just above collar bone increases in size with this swelling and my lips (very noticeable), tongue, it felt and looked big with a rashy appearance all along the edges, I had the same rashy look around my lips just inside my mouth. He thinks it may be angioedema, it is not uncommon as it can be a response by the immune system to stress.

Anyone else had experience with this?

Never know what to expect from day to day.....but I am always up for a good fight.

Any information would be much appreciated.

Annette

No one huh? Well guess I will keep you all posted as I get results and further dx.

Annette

Annette, oh my gosh I am so sorry to hear that you are going through this. Please tell me you have at least had a CT Scan or exray of the area where the lump is? I had right-side neck swelling but no drooping of the face etc. Maybe you could suggest that your Dr. does thyroid lab work as an enlarged Thyroid can be one sided. Good luck and let us know what you find out!!

Julie

I have had the thyroid work up twice but it has been over 8 months so I will suggest that. I did just have other labs and a urinalysis done as well. Results should be available in a day or so. It is all very strange, my left eye even feels cold...I know that sounds strange but when I am just sitting it feels like someone is blowing cool air on my eye. I have notice that the top of my head is painful to the touch. Guess we will have to figure this one out as well. Seems if it's not one thing it is another...don't get me wrong, I am thankful for good days, for that matter I am thankful for ok days as I work a full time job that requires me to suck it up and move along as best I can. It really bothers me that my quality of work has been affected by all this.

I will let you all know.

Annette

Please let us know when you get the lab results. Lupus can really suck at times.

Alison

I get badly inflamed and blow up like a balloon but its usually all over or mostly legs, hands, or face. When you said the top of your head hurts- that's a very familiar. It would hurt anywhere I had hair follicles because of inflamation. It hurts so bad and it looks like it hurts. The only thing that really helps me are compression garments, exercise and elevating and massage.

I take pictures when I'm like to show my doctor and so I can have an idea of how long it lasts.

Annette....Please keep us informed of the results of your lab tests. I know my daughter gets where it hurts to tough her head and she gets where either her eyes are blurry or she can't see out of one of them....she has also gotten where her tongue feels like it's swollen and it's hard for her to swallow....she also gets pain on the back of her spine at the top...she just had 9 tubes of blood done so were waiting on that. Please know that my thoughts and prayers will be with you.

Eva

My goodness. That sounds so hard. I hope they are able to get you answers soon. Your positive attitude through it all is just amazing, and that you are working full-time is incredible. I don't care about the quality of your work, I'm so impressed that you are dealing with all of this and still go! As you can see, I've completely lowered standards for myself since Lupus started, and I am completely proud of myself each day that I work, just for that.

You should be very proud, thank you everyone. I sometimes think my job adds to the constant flairing....I am back to ears ringing and pulsating so loud I can't sleep. I do have some research to do for work so I will probably read a little and put the ear phones in and listen to some music to drown out the noise. I know everyone here has rough days and I am so glad I found such a supportive and caring bunch. Thanks again.

Annette

Annette, 2 more things I wanted to add. When I had my swelling it went up and down - craziness. One Dr. would see it and in the same week my PCP would pull me in to check it out and nothing... So frustrating. My Endocrinologist also told me we needed to make sure my parathyroid was okay (which it was). Just wanted to give you that extra info. Also, I wonder if your eye Dr. could help with information on why you are having the optical cold sensation in your eye. Yeah, I read a lot and if I am not doing that I have my ipod cranked. It's amazing how music can make me forget how I am feeling! Hugs,

Julie