Hey all, I have noticed that there are times when I feel as if …i don’t know…all creeply crawly in my lungs and other organs. I feel it in lungs and liver mostly…and I was trying to think of a way to describe it so I could tell my docs without sounding like a loon. (because let’s face it–it I tell them I feel all creepy crawly…well, let’s just say they will give me a referral to a different doctor.
So I was thinking of ways to describe it. It feels
like yeast looks when its becoming active (as in a bowl full of sugar water or milk)
It feels like soap scum looks
It feels like…dirty bubbles or battery acid
I know it sounds gross and I apologize…it feels awful too.
I used to feel it in my lungs and in my blood when I first got sick–when my A.N.A. was 400+.
Now I only feel it in my lungs, liver and only rarely elsewhere—but it seems like something I should tell me doc.
Anyone else have a problem like this?
WOW, u are a great person for this site! I love ur insight and the way you go about explaining it all! It is awesome…You really have alot of unfortunate but good experience under your belt, and there are so many people wom ths is all new to here. So what you can give advise on, is great! Please read around, I am sure you can help many with alot of the other discussions and questions in general…I kinda know what ya mean, bout the creepy crawly feeling, esp. since I am allergic to B/Wasp Stings too, and have an allergic reaction that is worse due to the Autoimmune, I really suffer when stung too…Glad u r here! Suzie :0)
annacai autoimmune said:
I went to see my rheumatoligist earlier today. I told him that I had the creepy crawlies under my skin - i have been avoiding sun exposure - and I do not have a rash on my skin but it feels as though I have a rash under my skin. He told me that it was inflammation. Together we figurred out that it has been triggered by wasp sting. One wasp sting and I had the inflammatory creepy crawlies all over my body.
I have been living with lupus for more than 40 years. If my rheumy guy didn't understand the concept of "creepy crawlies" I'd have to find another one. And I try to keep a goog psychotherapist on my speed dial. For the past few years I have been working with a pain psychologist when I need her. So when a physician suggests that I need a therapist, I point out that already have one. One of my favorites was a psychiatrist who had also done a residency in internal medicine with the guy who was the leading lupus specialist in the country 35-40 years ago. He once wrote me a note to give to new physicians in which he explained that if my symptoms were psychiatric he would be taking care of them.
So I understand the creepy crawlies and so does my rheumatologists. Even the physicians at my local immediate care center understand the creepy crawlies and help me to stay out of the emergency room when I get the creepy crawlies in my lungs.
Good luck and tell them exactly how it feels to you. Don't be shy. And don't be afraid of sounding nuts. What's the point of having lupus if you can't act a little lupie?
I love this reply. I might put it on a tee shirt
What’s the point of having Lupus if you cant go a little lupie? Awesome!!
And I am sorry you have had creepy crawlies, but glad you were able to understand. I can certainly say that this site has made my “dealing with docs” muscles stronger.
thanks!
annacai autoimmune said:
I went to see my rheumatoligist earlier today. I told him that I had the creepy crawlies under my skin - i have been avoiding sun exposure - and I do not have a rash on my skin but it feels as though I have a rash under my skin. He told me that it was inflammation. Together we figurred out that it has been triggered by wasp sting. One wasp sting and I had the inflammatory creepy crawlies all over my body.
I have been living with lupus for more than 40 years. If my rheumy guy didn’t understand the concept of “creepy crawlies” I’d have to find another one. And I try to keep a goog psychotherapist on my speed dial. For the past few years I have been working with a pain psychologist when I need her. So when a physician suggests that I need a therapist, I point out that already have one. One of my favorites was a psychiatrist who had also done a residency in internal medicine with the guy who was the leading lupus specialist in the country 35-40 years ago. He once wrote me a note to give to new physicians in which he explained that if my symptoms were psychiatric he would be taking care of them.
So I understand the creepy crawlies and so does my rheumatologists. Even the physicians at my local immediate care center understand the creepy crawlies and help me to stay out of the emergency room when I get the creepy crawlies in my lungs.
Good luck and tell them exactly how it feels to you. Don’t be shy. And don’t be afraid of sounding nuts. What’s the point of having lupus if you can’t act a little lupie?
I know Janice, isn’t that hysterical! I loved it too, very funny & so true! It would be a funny tshirt! Hope u are well my friend! Good Night! Suzie :0)
janice said:
I love this reply. I might put it on a tee shirt
What's the point of having Lupus if you cant go a little lupie? Awesome!!
And I am sorry you have had creepy crawlies, but glad you were able to understand. I can certainly say that this site has made my "dealing with docs" muscles stronger.
thanks!
annacai autoimmune said:I went to see my rheumatoligist earlier today. I told him that I had the creepy crawlies under my skin - i have been avoiding sun exposure - and I do not have a rash on my skin but it feels as though I have a rash under my skin. He told me that it was inflammation. Together we figurred out that it has been triggered by wasp sting. One wasp sting and I had the inflammatory creepy crawlies all over my body.
I have been living with lupus for more than 40 years. If my rheumy guy didn't understand the concept of "creepy crawlies" I'd have to find another one. And I try to keep a goog psychotherapist on my speed dial. For the past few years I have been working with a pain psychologist when I need her. So when a physician suggests that I need a therapist, I point out that already have one. One of my favorites was a psychiatrist who had also done a residency in internal medicine with the guy who was the leading lupus specialist in the country 35-40 years ago. He once wrote me a note to give to new physicians in which he explained that if my symptoms were psychiatric he would be taking care of them.
So I understand the creepy crawlies and so does my rheumatologists. Even the physicians at my local immediate care center understand the creepy crawlies and help me to stay out of the emergency room when I get the creepy crawlies in my lungs.
Good luck and tell them exactly how it feels to you. Don't be shy. And don't be afraid of sounding nuts. What's the point of having lupus if you can't act a little lupie?
I love you guys! Even with all the pain and gross stuff we have to put up with, there is still a sence of humor! A good one at that!
Oh man, I was so tickled buy the lupie that I forgot to acsuly say what I intedet to haha
Well I have not had the keepy crawly I dont think, but I can feel the fluid in my lungs when I breath at times. The doctor said I didnt have anymore fluid in my lungs, but I can feel it. When I lay down flat I can feel it, when I breath heavily I can feel it. And some days I wake up and my lungs just hurt! Like someone is blowing them up like a baloon. My doctor told me if I have that I need to go to the ER.
So with u on this one, I also feel the fluid feeling in my lungs when I lay down...I also get lung pain when breathing deeply, always had...They said it was Pleuritis....I had a Pulmonary Function Test 2 days ago, first one in about 4 yrs....The man who performed the test said it showed asthma? I think it is all related to the inflammation and always has been! Just another thing to go thru, I guess. And u are so right, if we went to the ER w/ all of the symptoms that get bad we would have to have our own room ready daily for us, lol...So SAD, but SO TRUE!!! Just good ol' Life with Lupus I guess, BOY, it is driving me Lupie?, LOL,,, How about u guys? LOL! Keep Laughing Ladies! Be Well as always! Suzie :0)
So true, I know how u feel about the immediate care centers, they are def. better than the ER, less “germy”, lol and less time wasted! With you on that one, get the pred as always and away you can go, lol…Amazing how ya learn how to handle it all! Suzie :0)
annacai autoimmune said:
25 years ago I spent so much time in the ER that I would not live mor than five minutes away from one. Now, I have come to love the "immediate care" centers. The insurance co-pay is the same as for my primary care physician. And sometimes when the I feel the pleurisy coming on, I can get there, get my prednisone and be back home within an hour. So much easier than the emergency room and so much cheaper.
When I go to the ER, they take one look at my list of allergies, medicines, and dignosis and then they tell me that I am to difficult to treat.
I mostly feel like I’m drowning…or suffocating…gurgley…like theres stringy things all through and around my lungs…
Hi Everyone,
I also have Asthma and COPD.....but I know it is from the Lupus ....cause I feel it , just like all of you. I take oxygen every night and it does help me, but I believe what really helped me was what another Lupus pt. told me. Eat fresh pineapple daily ....it takes down your inflamation and she is right ....it has really helped me. I no longer have the pain in the chest, anyway I hope this helps...it takes about 3 weeks to start on the inflamation....good luck ....
sounds like good and (Delicious)advice—I will try it, thanks
bern said:
Hi Everyone,
I also have Asthma and COPD…but I know it is from the Lupus …cause I feel it , just like all of you. I take oxygen every night and it does help me, but I believe what really helped me was what another Lupus pt. told me. Eat fresh pineapple daily …it takes down your inflamation and she is right …it has really helped me. I no longer have the pain in the chest, anyway I hope this helps…it takes about 3 weeks to start on the inflamation…good luck …
Good, I am so glad that the creepies have gotten better, that is enough to drive ya nuts! I really am glad u took the pred. for relief! I know it comes with miserable effects, but there is pros and cons to all in life…Hang in There! Suzie :0)
annacai autoimmune said:
This time I went ahead and took the prednisone.After three days the creepy crawlies have receded to the point where I do not feel as though I am complete insane. I know there is a price to pay, but I have five days to finish a course.
I am new to Lupus, what is pleurisy, how does it feel? How will I know when an flare is coming on? There is so much I don’t know.
Suzie D. said:
So true, I know how u feel about the immediate care centers, they are def. better than the ER, less "germy", lol and less time wasted! With you on that one, get the pred as always and away you can go, lol...Amazing how ya learn how to handle it all! Suzie :0)
annacai autoimmune said:25 years ago I spent so much time in the ER that I would not live mor than five minutes away from one. Now, I have come to love the "immediate care" centers. The insurance co-pay is the same as for my primary care physician. And sometimes when the I feel the pleurisy coming on, I can get there, get my prednisone and be back home within an hour. So much easier than the emergency room and so much cheaper.
Ok. thanks. That is similar to a hospital visit when my wheezing, was audible wheezing then coughing before the hospital took me in. My blood pressure climbed and the nurses could not give me oxygen fast enough.
annacai autoimmune said:
The pleura are the sacs which hold our lungs. When the pleura are inflamed the lungs rub against them every time we breathe and we experience "chest pains." Every organ in your chest is essential to life so chest pains are a reasons to go an emergency room.
Over the past 40 years lupus has "inflamed" a number of systems in my body. The symptoms that I experience depend on the system (or systems) that is (are) being attacked. In the beginning I would get very sick before I sought medical care. Over the years, I have started to believe that I know when things are going wrong before they go terribly wrong. I think it is about learning to pay attention to your own body and how it responds to many different things - changes in the air quality, weather, the seasons, food, stress.
Unshoreandscared said:
I am new to Lupus, what is pleurisy, how does it feel? How will I know when an flare is coming on? There is so much I don't know.
Suzie D. said:
So true, I know how u feel about the immediate care centers, they are def. better than the ER, less "germy", lol and less time wasted! With you on that one, get the pred as always and away you can go, lol...Amazing how ya learn how to handle it all! Suzie :0)
annacai autoimmune said:25 years ago I spent so much time in the ER that I would not live mor than five minutes away from one. Now, I have come to love the "immediate care" centers. The insurance co-pay is the same as for my primary care physician. And sometimes when the I feel the pleurisy coming on, I can get there, get my prednisone and be back home within an hour. So much easier than the emergency room and so much cheaper.
I can feel the fluid in my lungs and they hurt too! I would say at least 2 days a week on a good week. On a bad week it goes into Pluerisy and I am in bed for a week. :( I can't go to the doc or the ER because I don't have insurance