HI ALL- As we transition from season 2 season, we experience different feelings, a wide array of different symptoms, different schedules that seem to occur due to the change, and all of that can affect the way we feel overall! I for one am having a Drastic Change in weather here in the mountains of NJ, from Super Humid to Cool & Quite Breezy within a 24 hr. period, 4 me, well, it means, I HURT from head 2 toe and nothin’ seems to ease it, actually started when Good Ol’ Hurricane Irene came on by without an invitation,lol…It happened to me when Summer arrived too…Oh well, just what I have to expect…We “adapt” to what we are faced with, we learn how to help our souls, bodies & minds change with it! So I am asking for y’all to Let It All Out & tell us how things may have changed for you, what u personally are feeling & going thru, anything at all, we are here to listen to 1 another & we also “HELP” each other more than y’all will ever know…Having someone listen to us, and give advice or just simply let us know they totally understand how we feel, means the WORLD! We r making a difference in each others lives & that is AWESOME! So for everyone whom is New to our Lil Family, I tend to do this discussion often…it gives us an open oppurtunity to type away & release some things we may need to let out & get off of our chests & outta our minds…Love Y’all & I am always praying 4 u & Thinkin of Y’All! As Always Keep Smiling! Xoxoxoxo Suzie ;0)
great idea and i do have some changes to talk about but my fingers hurt so badly that i will wait till tmor to type it up.
new med today
tomor might be better
I’m looking for anyone else who has ever experienced any of the symtoms I’ve been having. I was doing fine until late july, a week before vacation my feet,legs,hands and arms felt like they were asleep and then suddenly it stopped the very day we arrived to Ocean City. I also feel that my skin is ultra sensitive, sometimes if the wind blows it feels like it’s sprinkling rain on me. Then a couple weeks ago when the weather changed my right ear started to get a contant wind sound in it and the very day I went to an ENT it stopped before he could diagnose it, he said it was probably eustachion tube dysfunction. then my joints started aching and now I have this itching problem. I actually was diagnosed with this by a dematologist before the lupus so I’m not sure if it’s caused by the lupus i, it is called Dermatographric Uticaria and has been contolled very well with antihistimines but lately it has not been helping. Someone Please tell me I’m not alone in this and I’m not going crazy. Lori
Lori periodically I too get the feeling that my feet, hands, arms are asleep…actually mine feel like that feeling like they are waking up, they horrible feeling when you pound them on the floor…it just hurts. I also have itching attacks ALL the time. MIne come at night alot. I use SARNA cream…expensive but it helps. Good luck…so many symptoms that come and go or come and never go but are just a nuisance. Deb
I GET THAT TOO SOMETIMES WITH MY SKIN, VERY ODD, AND I BLAME IT ON INFLAMMMATION OF THE NERVES…? DO NOT KNOW IF THAT IS WHAT IT IS? SARNA IS GOOD, AND YES, EXPENSIVE, BUT IT WORKS WELL…I ALSO GET THE ITCHING FEELING WITH THE NUMBNESS AS FEELING COMES BACK THEN I SWELL? WHO THE HECK KNOWS? BUT PLS. LET US KNOW WHAT THE DERMATOLOGIST SAYS…AND I WISH YOU WELL & LUCK TOO! FEEL BETTER, {{HUGS}} SUZIE :0)
thankyou I'm glad I'm not alone with these issues. I'm going to the rheumetologist on the 28th and will discuss this with him but I really don't get any info from him, he makes me feel like this is not a big deal but if he had to deal with different symtoms on a regular basis he might understand.
ALOT OF TIMES WE ALL FEEL LIKE THIS FROM THE DOCS. YOU HAVE TO NOT TAKE IT PERSONALLY, THAT IS JUST THEIR NATURE, I GUESS, MOST LIKELY DUE THE FACT THAT THY ARE NOT THE 1'S FEELING ALL THE SYMPTOMS...THAT IS THE WAY FOR MANY PEOPLE, THEY CANNOT COMPREHEND CAUSE THEY ARE'T FEELING IT!! IT IS TOO HARD FOR HE TO GRASP, I GUESS?? MAYBE THEN, THEY WOULD FEEL DIFFERENTLY! GOOD LUCK & KEEP US UPDATED WHEN U DO GO!
SUZIE :0)
Lori said:
thankyou I'm glad I'm not alone with these issues. I'm going to the rheumetologist on the 28th and will discuss this with him but I really don't get any info from him, he makes me feel like this is not a big deal but if he had to deal with different symtoms on a regular basis he might understand.
First of all thank you to everyone who has made me feel so welcome to this group! It is a comforting feeling to know there are others out there when you are feeling so alone.
For so long I thought that my aches and pains where due to age and hormonal changes. It is actually a relief to be able to say that I have "something". The change in the weather SO affects me...last night and today being especially hard. Having trouble walking (again). Having only been recently diagnosed, I go to the docs on Tuesday to start to lay out an action/treatment plan. Any suggestions/recommendations would be greatly appreciated.
Hope Happens....Dawn
Hi Dawn,
Just have very good communication with your doctor from the get-go....That is key, do not be afraid to ask questions, have a list b4 u go, have it ready & also add ur symptoms & when u seem to occur on the list too....Read b4 u go, so some of the meds & words used are somewhat familiar to you....Plaquenil seems to be one of the most popular beginning meds....with little side effects, it all also depends on what he/she believes is being affected ny Lupus...Have u been on Prednisone yet? That also is a beginning treatment most of the time too...Just speak up about how u REALLY feel?! Ask if you have any overlap of the Autoimmune problems too that are secondary to the Lupus...like Fibromylagia, etc...try to learn a little about ur fam. history too, any thing that may suggest inheritance in ur genes....Get a copy of labs, to keep for ur own records too, they may not like that, but you have thr right as u are the patient they are doing them on, having them is always good, so u too can be a part of the process & compare as time goes on, esp. after treatment has begun....Keep Ur Head High Most Importantly! Good Luck & Keep Us Posted....U r in my thoughts & prayers, Keep Smiling! Suzie :0)
Tybecca said:
First of all thank you to everyone who has made me feel so welcome to this group! It is a comforting feeling to know there are others out there when you are feeling so alone.
For so long I thought that my aches and pains where due to age and hormonal changes. It is actually a relief to be able to say that I have "something". The change in the weather SO affects me...last night and today being especially hard. Having trouble walking (again). Having only been recently diagnosed, I go to the docs on Tuesday to start to lay out an action/treatment plan. Any suggestions/recommendations would be greatly appreciated.
Hope Happens....Dawn
hi everyone. Fall is getting comfortable in my livingroom: it's nice to see him stretch out on the couch with the windows wide open. It's nice to feel the almost imperceptible chill...the quickening before a change occurs.
I finally have a keyboard so i hope to be catching up with everyone. a little sore today---i had gluten and dairy three days ago, and it really does seem to make my Lupus symptoms worse.
You ain't crazy; you got Lupus. Seriously, the thing I hated most about Lupus was all the weird symptoms--especially the ones that went away before the doc could see what I was talking about. The latest was: I smell like cat pee, but only when I am in bright sunlight, and I wake up itching like crazy at night, but no other time." I read the notes my reumy wrote after that visit and she actually stated that she was beginning to wonder if I was mentally ill. That pissed me off.
But being on this site has helped me so much bc I feel like I have a whole army of people who have been through the craziness so when I tell the doc I feel more confident (and surprisingly, they treat me better too.)
Knowledge is power. Somehow just knowing that people with Lupus have had weird symptoms has made me feel more grounded and stable when I have to disclose my weirdness---and i don't even have to tell them what I have learned---just knowing it helped---guess it soaked through my skin and replaced that cat pee smell. (jk) the cat pee smell went away after a round of strong antibiotics
Lori said:
I'm looking for anyone else who has ever experienced any of the symtoms I've been having. I was doing fine until late july, a week before vacation my feet,legs,hands and arms felt like they were asleep and then suddenly it stopped the very day we arrived to Ocean City. I also feel that my skin is ultra sensitive, sometimes if the wind blows it feels like it's sprinkling rain on me. Then a couple weeks ago when the weather changed my right ear started to get a contant wind sound in it and the very day I went to an ENT it stopped before he could diagnose it, he said it was probably eustachion tube dysfunction. then my joints started aching and now I have this itching problem. I actually was diagnosed with this by a dematologist before the lupus so I'm not sure if it's caused by the lupus i, it is called Dermatographric Uticaria and has been contolled very well with antihistimines but lately it has not been helping. Someone Please tell me I'm not alone in this and I'm not going crazy. Lori