Burning up!

I saw a post similar to what I am about to ask, but I have Undifferentiated Autoimmune Disorder. I also have fibro.
A couple of weeks ago, out of the blue, my BP dropped so low I blacked out. I remember only that someone took my phone and called my husband. I was in the hospital for about 12 hours getting fluids and IVIG. Now I suddenly feel like my skin is burning..I get so hot I can't stand it. Then it goes away and I am freezing or normal, but my body temp (which is usually around 96.7) doesn't change. Sometimes I also get so cold, NOTHING can warm me up. I am a little concerned about the low BP thing. It normally runs low, but something dropped it like a hammer. I had only one instantaneous symptom right before I went down...I felt sick to my stomach.
Anyone else get stuff like this? I am beginning to feel like a roller coaster as this can happen several times in one day. I am new here, BTW....THANKS!
Laura

Thanks for your reply! No, I am not taking BP meds or diuretics. I have ALWAYS had low BP, but this came absolutely out of nowhere. I was trying to talk, but no one could understand me. I honestly don't remember much of that day at all.
I was on methotrexate, plaquenil and prednisone, but stopped all three a few months ago. The side effects were killing me and my hair was falling out in clumps.
I have a gastric pacemaker and a peg tube because my stomach doesn't push and I had to have my colon removed (colectomy) about 6 years ago. I have always had fibro and raynauds since I was quite young, but about two years ago, I suddenly felt VERY sick, my fingers felt like they were broken (really) I had trouble breathing, and I felt like I was slipping out of my body. I also had a serious rash and sun bumps everywhere. That's when the undifferentiated part started. Lots of lupus symptoms and sjogrens but my ANA's come out OK. I do get IVIG infusions every month because I started getting pneumonia yearly when I was six and was hospitalized several times with it because my oxygen would get so low. (I am 55 now). This skin on fire thing has me perplexed. I mean I really get so hot I feel like I am on fire...then it just stops as quickly as it started (no chance of it being hot flashes...hysterectomy when I was 24 due to fibroids attaching themselves to my colon). So WHAT THE HECK? LOL> What is going on?

Laura,

Wow, that's one heck of a lot to deal with!

The only thing that rang a bell for me was when you mentioned the feeling of slipping out of your body. This happens to my daughter (who has Epilepsy) if she's been drinking the night before, especially if she has coffee the next morning. She feels shaky and out of it, to the point of not being able to wait on a customer - not hearing them. I believe she's even used the term, "out of my body." She's had 2 Grand Mal seizures, and both times, she felt this way beforehand. Now she's on medication to control them, but she still gets these breakthrough symptoms.

Keep posting! There will probably be lots of people who can identify with what you're going through.

you guys are the best!!!!!! thank you so much for replying. You have no idea how much this means to me.
I have that "floaty" feeling I THINK when I am dehydrated, but I don't know. I am on the bare bones med regime because I hate all the side effects. If I took what i was prescribed, it would be about 12 meds. I take potassium (because of the peg tube), senokot and or miralax which is 100% necessary, advair, and phenergan at night. I HAVE pain meds which I could easily take all day as I am always in severe pain, but I don't...once in a while a half of vicodin...MAYBE twice a week.
My BP is naturally low, but I think if I am tired, stressed or dehydrated, it gets worse. Plus I am having more and more problems with STARTING to pee...it takes a while. and I have had FIVE bladder infections in 6 months when i have never had one in my life.
The burning up thing started after I blacked out. they said I was dehydrated and my sugar was low, but that has never happened with my sugar before. When I was in the hospital after blacking out, after about 12 hours of being there, I had THE WEIRDEST pelvic sensation....it was like I was hit with an electrical prod there...I was diagnosed in 1999 and although it took me a while to know what to expect, everything has been the same until this last episode of blacking out. the skin on fire feeling has me perplexed then I am freezing. (LOL...I am very familiar with the freezing part) but not the burning up part. Please keep posting....it helps so much! THANKS! Laura

Laura I was just rereading your post. I know I have passed out many times from a vaguel nerve response from the colon. Who knows maybe it's from your colon issues. I had it happen so much, I know what to do now. I immediately get on the floor and put my legs up, this usually raises my blood pressure. I have the same problem with my bladder to. It seems like my bladder gas got lazy. I can feel the poor muscle tone. I just tell myself lovely fibro!

Also my vagus nerve is not working properly which is why I have a gastric pace maker ....it mimics the pushing the vagus nerve does...so I AM able to eat SOME, but not much. only about 84 lbs. But, hey, I am still here, and kicking!

wow. I totally understand what you're saying!!!!!!!!!!!!!!!! How did you BEAT IT INTO SUBMISSION!

Hello NYLaura :)

Well first off, I have to say, I really have not found any other cases like mine....

Everybody is different, and many with FM find exercise of any kind excruciating, and I can totally sympathize.

Oh, and one more disclaimer..... I have a little psychological issue called OCD, and one of the ways it manifests itself, is that I will get some crazy idea stuck in my head... be it, to catch a bunch of huge fish..... or to completely transform my shot out, old, obese self, into like "Arnold" :) LOL {long ways to go, but....}

So, that said, I started out changing my diet from the worst end of the food spectrum, to nearly the best possible. And lost about 50 lbs, healthy diet alone. This really helped my IBS...  

Then I started exercising. Just little hill climbs at first. Then a bow flex, then some weights and a curl bar... oh, and the mountain bike and the stationary :)

So now I'm a fitness freak with FM :) Oh, and yes, I definitely still have FM. Look at my post history. You will see all kinds of goofy FM symptoms I've had..... even lately. It's just that now, the symptoms are never bad enough to side track me... and my IBS is virtually gone.

I just know though, that if I were ever to fall off the health and fitness wagon, it would be the end of me. I was just super-blessed  to have another chance. Sure don't want to mess it up now.

Peace,

Fish

I have had thyroid issues all my life and there are these things called parathyroids you mights want to have checked. They have a lot to do with the calcium in your body. Are you drinking enough???? Dehydration is a funny thing,,,,,the minute you start feeling thirst you are actually starting to dehydrate. Also sometimes when you feel hungry it is really because you are thirsty. I tell ya AI diseases are messy. I have Hashimotos, Lupus and Fibromyalgia (first time I have accepted it enough to say it) my mom has hashimotos, my son is type 1 diab with thyroid disease and my daughter has thyroid dis and policystic ovary syndrome.......
Regards!