Serious Problems with Thermoregulation

@Irish I feel like that all the time. I just have to keep reminding myself that it is just the pain and not me. You are not selfish for not wanting to suffer. Having kids is probably the only reason that I am still alive right now. Your kids need you no matter what. Tell yourself that and just make it through today. Tomorrow might be better, if not maybe the next day. You never know what the new day will bring 🤗🤗

I'm just putting this out there, how I'm feeling today. It's a beautiful sunny day and I should be out walking my dog or doing something. But I just can't get out of my bed. I don't want to be bothered by anyone either. I'm still doing ketamine for my depression and trying to figure out what will work for me treatment-wise. Why do I feel like I would rather die then stay around in this world? I have my kids a beautiful little granddaughter and my mom and dogs. But I can not shake that feeling that I would rather be dead then be around. This isn't a good day for me. But is there anyone out there that feels this way? Or am I a selfish freak?

So glad to hear you have a clinician who LISTENS and takes into consideration your concerns 💕💕💕

(*SURGERY recovery…* I wish I could edit my comments! )

My home nurse just left and we were reading your responses while she did her thing and was on board with all of your thoughts and suggestions- I will definitely be going back to my cardiologist and an endocrinologist once I’m through the worst of this surely recovery 🙏🤞🏻🙌🏻📿

@wilder yeah been noticing vyvanse may be exacerbating my POTS buuuuuut it's SO WORTH not having the myriad symptoms of ADHD that are debilitating to my life, plus Vyvanse cured my treatment-resistant depression and it comes right back when im not on it soooooo 💁

#dysautonomia #hPOTS

Yes I do too I have for a long time at first they diagnosed me with orthostatic tachycardia syndrome a dysautonomia but then most of my symptoms went away after they fixed my lungs I had aneurysm. But I still have temperature fluctuations that are wild and don't match what's going on in the room around me. I've also been diagnosed with ra and I guess I can come with fevers periodically I experienced low-grade fevers as well and none of it has been diagnosed for sure I really like feel like suggestion

please see a cardiologist and/or an endocrinologist

Oh, yes, me!! It stinks. For me, adderall aggravates my severe heat intolerance and all sorts of weird temp issues. I still take it anyways, but I’ve definitely personally identified that med as being a major contributor.

Thank you so much fellow warriors 💪🏻💜 All bloodwork (except always low vitamin D) and thyroid are all checked within last 3 months and they say all is fine. Most recently my pain management recommended maybe seeing an endocrinologist which I will do once I’m out of recovery (will be 4 weeks post-op on Monday from breast implant removal and c-section scarring and adhesions removal)… I was also thinking it may be connected to the Breast Implant Illness (BII) so maybe it will start clearing up over time now the implants are out🤷🏻‍♀️

Have you had your thyroid function checked? Also, blood sugar changes gives me hot flashes. So you might have your sugar checked also. That is also a symptom of adrenal insufficiency.

For the past week and a half I’ve dealt with the most horrendous heat intolerance which lately seems to come from the inferno burning from the inside of my body outwards but now I lay here and my feet feel like icicles that may quick shatter into 1 million pieces if anything touches em... it’s amazing how drastic the extremes get with his hot and cold dysregulation of temperature thing go but I’m glad to see I’m not alone even though I wish no one else had to go through this

Yes I have that too. My best suggestion is to layer your clothing so that you can adjust it to your temp. Also a little fan on a necklace when you get extra hot