Official diagnosis so far: dysautonomia. A broad disorder, no real confidence it’s right.
Symptoms are mostly cardiovascular. Primarily, sporadic rapid heart rate under mild stress, like carrying laundry up stairs. Occasional arrhythmia leading to faintness.
Been to two PCPs many times. Been to a cardiovascular doctor who had them wear a chest monitor tracking their heart. No real results.
Medicine from that: Propranolol, a high (50/60mg?) dose. Maybe helps?
Bloodwork returns high cortisol, nothing else unusual. Did a special bloodwork panel for an endocrinologist - nothing. Endocrinologist canceled their appointment seeing no reason to do it. Did a cortisone stimulation test - results useless.
I have no idea where to turn. I plan to get them into a different PCP as well as schedule an immediate appointment for an immunologist, just to… go somewhere new.
Yes, the cardiologist had them wear the heart monitor for maybe a month or two.
Looked into POTS, asked them about it. They said it was discussed with them but “if there are 10 main symptoms of POTS, they said I have 6 of them” and specifically they have felt faint in the past, but have never actually fainted.
I think that “nearly fainting” is close enough to “fainting” that you could just be lucky. I’ll have them follow up on their next appointment. It certainly seems similar to POTS but if not correct, the closeness could preclude a better diagnosis.
That’s what we’re trying to figure out. The prior PCP referred to a cardiologist, the current PCP referred to an endocrinologist and ordered several tests.
Diagnosis: Everything looks fine, that sucks though
Have you looked into pacing? It’s a treatment for ME/CFS, which seems to have a lot of overlap with long covid. I don’t know the right type of professional to treat it, maybe a doctor or psychologist but perhaps the pcp can refer to the right person.
My understanding of the way it works is you’ve got some kind of limit before you wind up being incapacitated/bedridden and pacing helps you find what it is and how to stay under it, and extremely gradually that limit increases.
It’s actually pretty similar to knowing your limits during regular exercise for a normal person, it’s just that the limits are way lower and it takes way longer to recover from activity. Like, if the only thing you can do is walk to the bathroom and back before winding up in the red zone that’s it. You work your way up from there and the psychologist helps you build up over time while staying within your limits.
The cardiologist discussed that with them a long while back. They only started living with us a year ago and before that were under the control of their abusive parents, so I can ask but my knowledge is limited. I know it was encouraged that they should exercise and find their limits, and I ought to encourage them to do that more. However with no diagnosis it wasn’t a very strong recommendation.
I try, but they are a college student with a job and I’m not always up for the task of cajoling a homebody cross-stitcher into going for a powerwalk with me. I’ve done it, but not with regularity.
If we had a real diagnosis and a doctor telling us to exercise it would be different than me saying “Let’s go work out in case it helps your undiagnosed chronic condition!” They’re just not inclined to that.
Well, I can only say that it’s been working for me so far. I have something that’s undiagnosed (not long covid or me/cfs) but pacing was what was recommended for me. I wear a heart rate monitor that has other metrics like energy levels.
My doctor recommended an app called Visible which uses a Polar HRM which tracks energy levels, but I found my Garmin to be sufficient using the body battery feature.
It takes extreme patience, I’m 8 months in with the treatment and still have a long way to go but for the most part I can live life normally now. For the first 6 months or so the symptoms were so volatile that it was difficult to tell if I was improving (had many days where I felt like I made no progress at all) and that’s where the psychologist plays a big role in helping you deal with it.
We’re going to start with a new appointment with a new PCP ASAP, hopefully within a week or two. I’m toying around with sending them straight to an immunologist but if we can get a PCP appointment soon we’ll wait for that.
We’ve been going to the same generalist for a while, and she’s a wonderful lady, but she hasn’t pointed us in a fruitful direction. We need a different brain.
Do you have access to an integrated Long Covid clinic?
Going to different specialists is unlikely to prove fruitful because they will each tell you different things, but they don’t talk to each other after that.
An additional problem is that they would need to run tests while they were exerting themselves (to trigger the issues) to get reliable information. Otherwise, their tests would probably come back mostly normal.
From your comments:
High Cortisol = possible adrenal glands issue
BP Issues = adrenal or hematocrit
Heart = adrenal or hematocrit
Hematocrit = % solids in your blood (a measure of blood viscosity)
Propanolol is a beta blocker. It works on the CNS - adrenergic system. Works to reduce heartbeat and BP.
I would focus on the pituitary gland and the thyroid gland with the doctors as Covid has been linked to damage to the adrenal system. Heart/BP issues can also be 2nd order effects from damage to the adrenal system.
Excuse my language but how the FUCK was this not recommended to us? They’ve been sent to probably 3 different specialties of specialist and gotten ~10 blood draws.
I found a clinic that specializes in long COVID. It seems they specialize more in pediatrics and have a focus toward rehabilitation, but I think they’ll be our best shot for diagnosis too.
Recognizing, this may never get a diagnosis and just be dealt a shit hand. They’re taking that possibility very hard… Already at 20, they’ve given up on the possibility of professional musical theater. (Of course most don’t make it but they truly have talent.) They’re so frustrated they can’t rely on their body to do normal things.
I feel that, kiddo. My stuff might be managed nowadays but I feel that.
Given her age (20s) there is still a good chance that with treatment and rehabilitation, she would improve to the point of living normally. I have read many long covid case studies over here in the UK and thats usually the case (usually, the older you are the worse it will be in terms of reocovery).
Half the battle is going to be staying positive and looking for incremental improvements given that this will likely take years.
It will also help if she can find a group of long covid patients in their 20s and 30s (like a support group. Can be online). Makes a big difference when you can talk to people that are going through the same problems as you are.
There’s definitely stress/anxiety, this is the Godkid who I’ve detailed elsewhere we brought in from a mentally abusive household. They are in weekly therapy.
Though I’m sure it could contribute/trigger issues, it’s definitely not 100% psychological. There is a physiological component.