u/Kmb2938

Background info: I have had a lot of symptoms since childhood that I always brushed off. They were rough but manageable. last year I got really sick. I have always suspected I had POTS but never got diagnosed until last year. After this sickness that included multiple sinus infections leading to surgery and maybe viral meningitis. My symptoms get exceeding worse to the point where it is effecting my overall quality of life.

So I started seeking out specialists. After seeing: rheumatology, ENT, cardiology, neurology, immunity, allergy, orthopedic, going to the ER several times, many MRIS and blood test… I have figured out some of the puzzle pieces but no explanation for a lot of my pain.

This “medical mystery tour” has led me to an appt with an EDS clinic next month that takes like 6months to get into and it’s about 3-4 hours away. While waiting I am have been seeking some help with pain bc I keep pulling muscles in my back or neck really bad to the point where I can’t stand for long periods.

I researched and found someone who specialized in spine and neck pain management so I thought that would be a good place to start. Bc if this is not EDS related I still need help managing pain.

I saw a pain management doc yesterday…. I specifically said I am not interested in opioids but would consider shots if absolutely necessary in the future. I let him know I was in the process of getting a diagnoses potentially for EDS. I only told him bc I wasn’t sure if this would affect the treatment for pain ex: shots? This did not go over well.

He essentially told me to STOP chasing my unicorn diagnoses and to lose weight and exercise.

This was literally after I already said I was doing CrossFit for years and had to quit due to some heart issues that have come with my POTS and sinus tachycardia. As instructed by my cardiologist.

He responded with…. And who told you that you have POTS and how did they diagnose it…. I was like well… I passed out on the tilt table in 7 min without being medicated.

Then when I told him I started Pilates to get back into working out but I keep “”pulling out” my back Everytime I go. He was like mhmmmmm ok but how many times have you actually gone to Pilates? I was like what? Like how many times in a row before I pull my back? (I have a year member ship and go 2-3 times a week want to work up to 4 if possible. I stated about 2-3 months ago)

he was asking how many times I have actually tried Pilates Ike in my life before I guess quitting? So he assumed I tried it once and like quit? Insinuating I was lying about being active?

For reference I am a little overweight but only by like 15-20 pounds. Last year I was having a lot of neurological issues, heart issues and back probs that forced me to quit CrossFit. I also had a sinus surgery and like 6 sinus infections last year so that kept me out of the gym. I have gained some weight. But I went to this appt to literally seek help to exercise without pain.

Then at one point he was like well it’s about diet too… I just ate a bunch of candy earlier and that is going to cost me….. I’m trying not to cry this entire time like this person isn’t listening to me AT ALL.

I understand lifting again will 1000% help my pain but I keep injuring myself everytime I workout. It’s so frustrating when you go somewhere asking for help to get your life back and they are literally like you are lazy I don’t believe you. Then suggest shots and opioids? Like what?

MAYBE I do not have EDS but at this point I think it’s still worth considering since all my testing has come back negative for literally everything else and I am in so much unexplained pain all the time. None of these synonyms make any sense and I always brushed off for years being like oh you are just a little different. I’m feeling overwhelmed and defeated.

He kept being like some of us can’t afford to be out of shape and that looks like it’s the case with you 🙄

He ended the appt with…. Ppl with EDS or supposedly “BENDY” are you bendy. I said no. He said well there you go…….

This has been the most exhausting 2 years of my life. I cried after in the parking lot.

I feel like my life has spun out of control and I will never get back to normal. I feel like I will never have my body back and no one believes me.

It was very frustrating and I just needed to vent 🥲thanks for listening 😭

I just got a Skutt-822 I am having it installed in the garage directly next to the door. I don’t have any other ventilation in the garage. Should I just have the garage door cracked and a fan pushing the fumes outward during firing? Anyone I know who has had a garage kiln just fires with it closed and deals with fumes? Maybe I’m overthinking this.

Has anyone experienced issues with fumes while working in the garage with your kiln? My studio is in there.

I don’t have an issue with firing during the day and then closing the garage? Anyone have suggestions for how they use their garage kiln studio setup?

Been in chronic pain all my life but it came and went and did not impact my life daily. It’s gotten way worse recently, so I have been actively pursing diagnoses for over a year. You all know how exhausting and difficult that adventure can be.

My mother in law has really made some annoying comments. Anytime she asks about my condition and I try to explain what’s going on she interrupts with some weird comment about age every single time. Like:
“You are too young to have so many problems”
“We’ll just wait until you get old”
After finally being diagnosed with sinus tachycardia and POTS. And getting on heart meds:
“I think you really need a second option that’s not right”

Along is other general blowing off my issues statements bc I look fine. Some days I’m fine some days I can even really walk it’s a hard thing to explain.

Mainly just needing to vent bc it’s exhausting explaining to people what’s wrong when literally I feel like I have 200 symptoms. I don’t have all the answers and this shit is so hard to get anyone to take you seriously.

It’s hard to deal with my own shit let alone deal with how ppl react to it. Thankfully my husband is super super supportive and most of my friends are as well. But damn sometimes I want to scream.

Have an appt for testing for EDS and fib next month. Starting to feel like I will never know what is going on.
Hopeful that if I end up confirmed that more knowledge will help me going forward.

Thanks for listening ❤️

I have been having a lot of neck pain recently. I work sitting at a desk for 8+ hours. I have recently started doing Pilates and that helps sometimes makes me feel worse a lot of times.

I am thinking of buying one of those yoga ball chairs to help my posture. Do we think this would hurt or help?? Any suggestions?

I have never flown to CDG (Paris) before or had to use mobility assistance. Recently I was diagnosed with an autoimmune that it is very difficult to stand for more than 1 hour. It causes a variety of issues including blood pulling to legs and sometimes fainting, back and hip pain. I’m usually fine and have never needed assistance at an airport before. I typically need a wheel chair at amusement parks or anytime I’m standing or walking for extended hours. Walking is much better than standing.

I am thinking about requesting a wheel chair for landing in CDG airport. I am flying Delta. I am under the impression with the new passport system that lines have been reported to be 2-3 hours and in very worried that this will potentially cause issues before I even start my trip.

Has anyone had experience requesting a wheel chair and how does this process work? Is it worth the hassle? It hard bc sometimes I don’t know my limits and usually I can walk for extended periods but standing still for extended periods is not great.

I have never flown to CDG before or had to use mobility assistance. Recently I was diagnosed with an autoimmune that it is very difficult to stand for more than 1 hour. It causes a variety of issues including blood pulling to legs and sometimes fainting, back and hip pain. I’m usually fine and have never needed assistance at an airport before. I typically need a wheel chair at amusement parks or anytime I’m standing or walking for extended hours. Walking is much better than standing.

I am thinking about requesting a wheel chair for landing in CDG airport. I am under the impression with the new passport system that lines have been reported to be 2-3 hours and in very worried that this will potentially cause issues before I even start my trip.

Has anyone had experience requesting a wheel chair and how does this process work? Is it worth the hassle? It hard bc sometimes I don’t know my limits and usually I can walk for extended periods but standing still for extended periods is not great.