POTS and Pain
I am SO OVER my chronic illnesses. My PCP (and myself) are pretty sure I have POTS, hypermobile spectrum disorder/hypermobile Ehler’s Danlos (HSD/hEDS), fibromyalgia, and I have chronic migraines. I have cardiology and rheumatology appointments coming up in the next few months, and I’m trying to get in with a neurologist, but my PCP is helping with my symptoms for now (she’s great). My symptoms have gotten infinitely worse in the past few months.
Today, I decided to take a hot bath to help my migraine and joint pain. It helped those, but caused my heart rate to skyrocket into the 120s-130s because of the POTS. I was literally just sitting in the water. I’m so over this! I hate it so much. My job is very physically demanding and I love it. I’m catastrophising that my symptoms will keep me from my job in the future. I also have ADHD, depression, and anxiety, so I tend to just shut down when I’m overwhelmed with all of this.
How does everyone else mentally deal with chronic illness and chronic pain?
@Bndonovan02 For pain, I like Dr. Gabor Mate, Eckhardt Tolle, God, and Teal Swan.
@Bndonovan02 have you taken tests to diagnose your problems? If not, how can you assume all that?
Please, try to treat one at a time, you can't so it all. Check for each and every disease you just mentioned. Or else you're gonna be nuts. Start out with the (two) major(s) one(s).
I'll pray for you, if you want.
Cheers.
I’m lucky enough to work in an internal medicine field, which is all about piecing together medical puzzles. That’s how I’ve been approaching this, as objective as possible when I’m in research mode (I’m very subjective when I’m in crying-in-my-nest mode). I’ve gone through the medical criteria checklists for each one and they have all been positive. I also have a binder of research (actual medical journals). Discussed it with my PCP and she agrees. Unfortunately, there aren’t definitive, medical tests for most of these. Diagnosis is made through criteria, symptoms, family history, and extensive Q&A with doctors. Most of the treatments for these are symptomatic, which is what we are doing until I can get in with the specialists and they can, hopefully, give more targeted treatment and recommendations. My sister and father are currently going through similar diagnostic steps for HSD/hEDS, which is genetic.
I will always accept any kind of help/well wishes/and luck out into the universe! Thank you!
@Bndonovan02
@Bndonovan02
I figured out your PCP's diagnosis were mostly done through Q&A, criteria, symptoms, family history, genetics etc. What I just got impressed with at first was the huge amount of diseases you've developed. Having been through lots of health issues in the recent years myself gave me, just a hair, insight into people's issues. Thanks God there coming to an end.
Some of my doctors are not as good as yours. You're well assisted, and that's great thing to hear. And frankly I don't quite trust them. Most of them could give out better treatments than the mainstream versions but simply don't. Or else: you get healthier, they get poorer. That's how most of them cope, unfortunately, medicine industry kinda thing etc...
Anyways, if I can be of some help, let me know. I'll be around.
God bless ya.
Cheers. 😊
@Bndonovan02
I also have hEDS and POTS + AuDHD, anxiety, & depression, and I can absolutely empathize with that you’re going through. I just visited Tennessee with my family a couple weeks ago, and I was really struggling to keep up with everyone. My mom and I stayed back at our own pace. My body hurt, my heart wouldn’t slow down, my body doesn’t sweat properly… it can be hard. Very hard. That overwhelming feeling of defeat… it’s mentally taxing. What I’m trying to do is practice gratefulness and radical acceptance. I’m grateful for my body because it hold my soul. I accept that I have hEDS and POTS and may need to take more breaks than the average person. I accept that it takes a little extra maintenance to keep me going, but I’m still grateful to be here. Have you ever tried these methods before? I find them very helpful.
Something I try to do is make sure I have my salt capsules with me at all times. It helps my POTS tremendously! I make my own by putting salt in empty capsules. The salt increases your blood volume which helps slow down your heart rate. It works better than any drug I’ve ever tried to help my POTS (that’s a whole other story…).
You’re not alone in this 😊 we can all support each other with these struggles.
