Hi everyone,
thank you all so much for welcoming me to your community!!!!! I have been reading older posts for the last couple of days and have found many answers. However, I have a few more. Does anyone else suffer from severe restless leg syndrome? I can't even take a nap anymore without taking requip beforehand. Also, does anyone else have terrible hot flashes, night sweats, or excessive sweating when doing minor activities? No, i am not in early menopause, they have taken hormone levels and all are normal.
I did find that my burning heels seem to be the "norm" for Sjoggy sufferers. What irritable bowel????? or Bladder issues??? ???
Sign me up for restless legs, burning feet and a downright bad-tempered bowel!
Hiya
I have IBS and other bowel and bladder problems. The jury is out whether they are SJS related though.
Kathyx
You will soon find out that many of us here (myself included) have broken body thermostats. There are times when I sweat so badly from the neck up for really unknown reasons as I am exerting myself little....the summers I am extremely uncomfortable with the extreme heat (and this is the first winter I am uncomfortable with the extreme cold snap we are having...so now what do I do now???.....lol...I guess thats why I prefer spring and fall temps...right in the middle!).
I also have IBS and find that my face and head get sweaty when I am having a lot of issues with this no matter what the temp...when not feeling well or in need of getting to the bathroom (sorry)...I just get the face/neck sweats badly!
Also I think thyroid plays a role in some of this as well which I also deal with (hypothyroid).
Yep to it all! Yall I have taken to wearing a wig now that winter is here because I've cut my hair so low, well this wig is giving me the fits, my doggone head gets so hot sometimes I forget it's a wig and have been tempted to snatch it off. That is my biggest fear, I will become so misable and just snatch it off without thought.
Well ya might ask, why then do you keep wearing it, why not just get a hat? Vanity! I have received so many compliments. So what's a girl to do? ??? ::) ::) ::) ;D ;D ;D
I had this thing on on one of the windest days, I mean that wind was so strong it had blown two doors down at a mall, so ya know it was throwing me around, but my greatest fear was for that wig! I told my husband I might go down, but I bet this wig will still be on! I was pushing through wind with both hands on wig and hair in face blinding me. I looked like I had been through a harrican by the time I got inside. It was twisted, strands of hair standing straight up, but it was ON! ;D ;D ;D ;D
Ohhh Bernice....you have described your windstorm dilemma very well...I can picture it all in my mind as to what you looked like! Too funny :D
Hi Sarah,
Lynnmarie is so right, I'm another one who's heating system is screwy. I tend to sweat all over for several minutes and feel like I've just gone through a shower (and throw in some shaking/shivering to make things a bit different), and then it stops, and I'm just soaked from head to toe (it's awful). Now I understand that most of the sweating I did for the first two or three years probably had something to do with the old hormones, but that was a long time ago, and I haven't a clue as to why it's still occurring. One day, I can do a lot of exercise and not sweat a drop, others, it will just pour off of me, it's very strange.
I too have IBS, and am having a lot of problems with reflux right now, and the IBS is sure acting up too! Oh well, get to do some GI testing in the next few weeks, and I sure hope that the doctor finds something (this negative stuff is starting to get on my last nerve! ;) ::)).
Yeah, I'm another hypothyroid (Hashimoto's) around here, and that seems to be a whole 'nother set of problems, and issues (unfortunately with AI's, one often doesn't know where one starts and another ends, it's just so confusing sometimes). I often compare AI's to a box of chocolates, you never quite know what you're getting when you open that box (thanks Forest Gump! :D).
I don't have regular problems with my bladder other than the spasming, and that's happening a lot more lately. Oh well, the next time I see the Internist, I'll ask what he thinks.
Is this all related to SJS? Don't know, and no doctor can tell me for sure, including the rheumy. Maybe one day, the researchers will be able to figure it all out.
The picture of Bernice grabbing hold of that wig and running through the wind sure brings a smile to me too! Bernice, I can understand wearing one (I sure could use one also), but knowing me, that sucker would have wound up on a flag pole somewhere flapping in the wind! ;D
Take care -
Patze
Patze and Bernice
The wig story has me laughing my socks off ;D ;D ;D
Thank you.
Kathyx
Bernice, you have such a way of telling stories! I know it must be frustrating managing a wig but like you say, those compliments matter!! XX Ailsa
Years ago, I occasionally wore wigs to work etc. I remember one particularly bad and the wig was hot and itching and I was ready to pull my head off. I managed to wait until I got in the car and off came the wig. I was driving home and I sat my right hand down on the seat next to me. I thought a porcupine or a beaver of something got into my car. I almost had a heart attack until I realized it was just my wig. Lucy
Lucy that was F U N N Y! But I know what ya mean, brain fog and beauty don't always go together!
I guess I will go ahead and tell this one, was going to keep this one to myself.
New Year's eve we went to church as we do each year. The came a time in the service where they asked for testemonies of what God has blessed you in 2009. Well yall know I got my vision restored, in 2009, so I'm like the first one up there after a long pause of shyness from everybody else. I'm decked out in too much clothing cause it's cold OUTSIDE and the WIG, well as I was telling my story I got really emotional and did kinda a church shout, yeah like the ones yall done seen on tv! I forgot I had that thing on my head when all of a sudden I was totally blinded by something that flopped in my face, yall the doggone that done twisted on my head while I'm standing there talkin I felt like I was being attacked so I attacked back by taking my hand across my face and slapping it straight.
My husband whose a deacon there was sitting an arm's reach from me on the front row shakking his leg like he always do when nervous. When we got home he told me he didn't hear a word I said cause all he could focus on was that wig shaking and spinning, he thought for sure it was going to come off, he said that he had prepared a plan in his mind to leap up and grab me in a big bear hug to hide my head if he saw it fallin cause he knew what my head was really looking like up under there!
Bernice
That really tickled my funny bone ;D Your husband must be a very special man.
Hugs
Kathy
Bernice, please promise you will never keep you stories to yourself. You have a way of describing events that literally brings them to life! XX Ailsa
Bernice,
I want to thank you. I have been in pain all day and just feeling so down. I am not sleeping well and started Methotrexate last Friday. I stopped taking perdnisone last month. Your stories just make me laugh so much, as I have said to you before, laughing is good medicine. So thank you for my daily dose.
Helen
Lucy, that was good! :D ;D (http://www.freesmileys.org/smileys/smiley-gen156.gif) (http://www.freesmileys.org/smileys.php)
Patze
Bernice
I have just joined SJS world and you have lifted my spirits on 2 different occassions already. Please don't keep your stories to yourself, you have been given a wonderful gift, please continue to share it. You are hilarious!!!!!