Experiencing Out of Body Spells with Fibromyalgia

This sounds more like dysautonomia. It’s often a comorbidity of fibro.

Thanks! The nurse who mentioned it was an er intake nurse Idek her name but I’ll talk to my primary care and see what she suggests

My sister lives in Oklahoma, & the only POTS specialist near her is in Dallas, TX. She was able to to a “tilt-table test” in Oklahoma (the official test to determine a POTS diagnosis or not). She definitely had it! So then, her PCP was able to refer to the specialist in Dallas. Your doctor who mentioned you might have POTS should know where to send you for a tilt table test. Then if you have it, ask to see a specialist!!

@pegisis rest is tough during the day. I have a strict schedule for when I wake up for the day and when I go to bed. But M-F I work 8:30-5 and have docs before and or after work. And saturdays I have classes for grad school from 8:30-5:30 and I live almost 3 hours from campus. I live alone just me and the puppy so I have zero help. @lyndi a few months back at one of my er visits the intake nurse said I should get evaluated for pots. Genetics is looking into if I have ehlers danlos syndrome or something else and the nurse said EDS and POTS tend to be comorbid and that I showed signs of POTS. But I had a rough 3 months recovering from a surgery that I should have recovered from in 1 week and didn’t get a chance to look into the POTS. I forgot about it until your suggestion triggered that memory. What type of doctor do I need to see to investigate?

It could also be POTS (postural orthostatic tachycardia syndrome)! My sister has it. It also sounds like the exact symptoms that occur during a panic attack. (which is very similar in symptomology to a POTS flare — adrenal rush)

I get these same spells. The only other person I ever met who had them was my grandmother. I don't know what will help you but here is what I do. If my husband is home I tell him and he walks me back to our bedroom. I just rest. If I'm alone I try to be prepared for in case. Be near where I can rest if I need to. I do art work. I plan my activities where I can be busy but sit or lay back when I need. I don't know if you're life allows you to do this. If it does I hope it help. If you ever want to just talk I'm here.

@ouchieprincess I do struggle with severe dehydration and get routine iv fluids and iv zofran for perpetual nausea. My job is mostly work from home/behind a desk except in grey skies and the weather in Florida is rarely cold. I’ll def start keeping more formal track of what might be triggering these episodes and bring it to my doc. @kymbunz my last glucose draw was 75 the test says normal values are between 65 and 99 @scarlettrose sometimes yes other times no I run low fevers when my pain levels spike @mamabear15 with my perpetual nausea eating is hard for me in the mornings but I try my best episodes tend to happen later in the day though long after I’ve eaten for the first time of the day

I’m super tiny and get this way when don’t have enough food in my system ( not diabetic) was told to eat lots of small meals through out the day and that helps with my episodes like that

Are you running a fever when you get cold and are sweating?

What’s your fasting numbers do you know? Mine is 114-118 so if it goes below that I start feeling sick. I carry gluclose tabs with me.

I had this problem specifically you’re referring to the most, when I worked fast food, moving from kitchen to freezer to kitchen to outside to freezer to kitchen etc… my body couldn’t keep up with rapid temperature changes and trying to keep up with other employees resulted in me getting extremely nauseous and dehydrated and got sent home. Listen to your body, and record every little weird thing it does, especially if it’s weirder than normal- and ask your medical care team what they think about them. I’ve spent a lot of time being a test subject, but we’ve also learned a lot of things I wouldn’t have independently if I hadn’t reported them. All of this knowledge is useful eventually.

I have a family history of diabetes so with all my health problems my blood sugar and insulin and everything is tested regularly the last time was less than a month ago and everything is normal.

I do regularly have trouble regulating my body temperature, independently of needing to eat/or not eat however

I did have episodes like this, but mine turned out to be insulin resistance- so maybe see a primary/or specialist to rule out anything serious