I was diagnosed with EDS a little over a year ago. As a result of suspicion of Marfans, an echo was ordered.
I would have had zero idea that I could ever have any heart issues. I’ve always been skinny and just assumed, after being praised for being the epitomy of perfect health with my chronic low blood pressure, low body temp, and slight build. Actually, slight is an understatement, I’ve spent my life enduring suspicion of anorexia and/or bulemia – very irritating!
Anyway, I never attributed my inability to stand to my heart. While I noticed chest pain and severe shortness of breath, I never would have thought anything of it since I didn’t fit the profile for heart problems.
When I couldn’t get myself to the kitchen or to the bathroom, I assumed there was some other culprit. I would’ve suspected systemic poisoning before heart problems. Seriously!
As it stands, I do feel certain of the dysautonomia and I also know that my illogically erratic heart rate is part of the dysautonomia. I’m sorta in a situation like; “Who am I gonna tell?”. Who is going to give a crap or understand that?! I don’t have the desire to endure the abuse while I beg for understanding. I’ll just have to remain severely dysfunctional while the doctors all call me lazy or an exaggerator or someone who is thinking about bad things and bringing this onto myself. Or, ‘well, your bloodwork is normal’ – ‘Nah Nah Nuh Nah Nah!’ – ‘That’s right – in your face – your bloodwork is normal’. Years of that type of treatment has really taken its toll on me.
I think, for the dysautonomia, I’d have to see a specialist who is informed about it. I’m not sure I have the ‘fight’/energy/umph/reserves to seek help otherwise. I do thank you for your post and it may be worth trying what you have. It’s a huge challenge to figure out how to be so profoundly resourceful with multi-systemic dysfunction. Sadly, this is just the autonomic dysfunction portion.
Then there’s the GI, the CFS, the migraines, acute injuries/dislocations, the insane pressure in jaw and head – and TONS more. Many problems I am not even sure which systemic function for which to categorize. Like, does the pressure in jaw and head go with TMJD, hypothyroid, or now CCSVI. Never knowing where to start to achieve the coveted ‘slow the degenerative process’. THEN, TO HAVE TO FIGURE IT ALL OUT WHILE LIVING IT with the exhausted brain. It’s beyond insane. It’s really not cool!
You’re an inspiration to us all with your resourcefulness. God bless your little (well grown up cool kid now) boy for having a mom who would go to those lengths for him. Nobody on the face of this earth would do anything like that for me. My life knows only dependents so I am spread quite thin. <--- Not a sob story, just the simple facts. I will say that I am sick and tired of having the medically impossible happen to me and lacking comprehension of a suitable doctor. That does bother me a lot and has for many years now. It's been a really rough road. Prior to this 'road', I could go to the doctor for asthma, sinus infections, bronchitis or a UTI, be Rx an antibiotic, take it, and be just fine (with only a few exceptions). I never allowed the 'exceptions' to be an issue (assumed they were all well within normal limits) and didn't give much thought until now. Now, I have to consider that they are more likely to fit into a larger picture of a connective tissue disorder. Thanks, again, for your post. That may, potentially, be much needed help for me (hope others might benefit as well). During a time when I can focus, I will comprise and hopefully be able to use some of this info to begin to secure proper treatment. Every little bit helps (or so I hope and pray). Mind numbing to feel this horrid and have to work this hard - when it's impossible to work this hard when you feel so bad. Can you say, catch 22. 🙂