How helpful is having a diagnosis? Especially for someone with "mild" or "not-too-debilitating" POTS and hEDS?
I ran across a mention of POTS a few years ago and had never heard about it - as someone in the medical profession it peaked my interest and I read a brief summary, filed it away as "interesting", and moved on. Later I came across some information about hypermobility and read up on it in a little more detail. For that I said, "that sounds familiar but I'm not debilitated so I'm not going to worry about it."
This past weekend I ran across another article on POTS and this time I was like, "Wait a minute! That's me!" I didn't realize that all these weird physical quirks I had actually added up to something. The more I read about it the more I'm convinced that's what I've had probably most of my life. Once I read about the connection with hypermobility I was even more convinced.
Here's my POTS-like symptoms (my life?)
Dizziness with standing up from sitting or lying down- almost blacking out. I've never actually completely lost consciousness and fallen but I get dizzy start to black out most of the time. I compensate by standing slowly, leaning on something, deep breathing - it's worse if I lift my arms while coming to a standing position. Bending over and then standing can have the same effect.
Intolerance for standing or sitting - walking is fine but sitting up straight with my feet down or standing still gets very uncomfortable. I don't get dizzy, I just feel weird and heavy. I compensate by squatting, pulling my legs up when sitting, leaning on something while standing, standing like a flamingo, constantly shifting my weight or fidgeting
Low energy - I get tired easily and need lots of sleep (when I explained to my husband how much I fidget and constantly tense and relax muscles he laughed and said, "no wonder you're so tired by the end of the day!")
Exercise intolerance, especially aerobics
Mild "anxiety" attacks - kind of feels like my fight or flight system kicks in unnecessarily
Cold intolerance - not severe but enough to go out of my way to compensate - extra clothes, hot showers (but not for too long), hot drinks. I am generally not heat intolerant.
I think there are some other things but that's what's coming to me. I tried checking my heart rate manually and while it did jump with standing I'm not sure how much. I'll try again when I have a monitor available.*
*I'm 5 1/2 months pregnant right now with my third. My dizziness has improved with this and my second pregnancies (worse with my first). Everything else has gotten worse and I'm somewhat heat intolerant when pregnant.
I think I've have most of my symptoms for most of my life, at least since puberty. I think they've gotten some worse during adulthood but nothing super noticeable.
Hypermobility - I can do almost all of the flexibility things for hypermobility but definitely not marfan or something more serious. My skin is soft, I have mild pectus excavatum but a normal heart based on an echocardiogram. I have chronic but not debilitating back/lumbar/hip pain. As a kid my knees would dislocate fairly easily but this happens rarely as an adult.
So when I read other peoples' stories of being completely debilitated I say "That's not me!" but I also have realized how many little things I do to compensate for the fatigue, pain, dizziness, etc. that I thought were just "me being me."
My dilemma is this: how hard should I work for a diagnosis? We're in a financially tight spot right now and pursuing a diagnosis would mean out of pocket medical costs. I'm not debilitated enough at this point to want to pursue pharmacological intervention. However I don't want to ignore risks or truly beneficial help just because of money.
Any thoughts on 1) how much getting a diagnosis helped even though you were fairly functional with your POTS? 2) Are there risks I'm taking with my health or my baby's health by not being followed by a physician for this?
I realize people can't give specific medical advice for my specific case but personal experiences would be helpful. BTW my first two pregnancies were mostly uneventful, non medicated, vaginal births. I had some tachycardia with the first but no real problems. Both were fast deliveries at term. Both were in a hospital but were approached with a more natural-birth approach - midwife, no continual monitoring, food during labor, etc.
Thank you for any input.