Hey, I'm Ali. I was a runner and athlete before I got this disease. It crippled me too. Mine has not gone away and it most likely won't in my case. But sometimes if they diagnose it early it goes away and you're cured. The thing that has helped me, other than medication, is drinking three or four liters of water a day and putting salt on nearly everything I eat. My doctor from the Mayo Clinic in Rochester MN recommended it and it has helped, especially starting my day. Good luck.
What quality of life do you have now Ali??? Has it gotten any better at all??
I'm sorry, I forgot to add that I was just added to this community less than a month ago
It has gotten significantly better. At least I can get out of bed and do a lot of things like I regularly would. I still can't take the stairs easily. I get exhausted very easily and I'm in quite a bit of pain. But it's definitely more manageable than it used to be. It takes a long time to get used to, but you're not alone.
what is the pain from and what are you on? I have long term chronic pain fibromyalgia, osteoarthritis, mild spinal stenosis, damaged nerves (flank/side) from lithotrypsycomplication-burning aching pain- my pain management MD has me under control without narcots which I can't take due to POTS unstable BP maybe I can help you
Hi Ali. I was just diagnosed with orthostatic hypotonia possibly pots and dysautonomia. I'm not sure exactly what else yet. my appt with dr shields is this thursday and dr fouad next week. i can't breath when i walk, have an irregular heart beat, my muscles and joints ache so much that i have been crying myself to sleep. i was fine two months ago. I then had surgery on a thyroid tumor and this is how i woke up. right now the pain is so bad i don't even care if i wake up in the mornings. it hurts my fingers to even type this. i used to look forward to riding horses with my teenage daughters before this. is there any hope to going back to this??
Hi Michele and RLawson. I had heart surgery and I woke up like this, so I know how you feel. The symptoms you described seem pretty spot on, too. I struggle with breathing, irregular heart beat, anxiety, and a lot of chest pain in general. We don't know what specifically causes the chest pain so we don't have it under control yet, and it's absolutely the worst part. Some days I don't get out of bed. If what you have is pots or dysautonomia, there isn't a cure. At least, that's what my doctors tell me. All they're hoping to do is find a way to manage my pain. There's hope to feel better.That's what I hold on to.
I would like to thank each and everyone of you for your words of encouragement and insight.
Learning how to live a new life on life's terms you may see mutiple posts new to this website so I will send this to 1 but please know this applies to each of you :)
This seems to only get worse now I have hand tremors so bad I can hardly write. Anyone else experience the same? More episodes and less and less time on my feet these days :(
Does this get better is this normal or as normal as this gets
Help us her DiggyMc. What Doctors have you seen... medications...???? all that good stuff??? including all current symptoms now??
I have currently been placed on midodrine. I have a neur a cardio for my heart bradycardia with irrelmia (sp)I have also been to UT Southwestern in Dallas (where I was diagnosed) I fall seems like more often.
No energy whatsoever. I drink about 2-3 liters of water a day am on a high sodium diet. The latest symptom excessive hand tremors. I am dropping things a lot. I have gotten recent feedback from a helpful source telling me to sleep more. I fall quite often always tired.
I'm newly diagnosed too and currently going through testing but I do know that it is very unlikely that one medication can control all the symptoms. It takes many life style changes a long with different medications; some which may or may not work. I am taking Fludocortisone right now but have the knowledge that I will need more medications. I also need compression stockings, extra sodium and water too.
Two weeks from now I will be getting my second QSART test along with a Blood Volume test. I know there is many more after these that can be done that my neuro muscular doctor and Cardio doctor have already told me about. Make sure your are getting the proper testing before you give up. I'm not giving up yet.