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Long Hauler and Doctors are stumped

3 replies

cyberguy99 · 23/05/2024 16:57

So the TLDR is I(And a very solid portion of my battalion) developed obvious covid symptoms simultaneously in December of 2019. Since then I have had "long covid" symptoms that have increased steadily in severity, which are listed below:

  • Shortness of breath, I would say my current lung capacity is half of what it was prior to 2019 on the best of days for no obvious reason, and it gets worse every year.
  • Swelling, discoloration(Turn a purplish color), and pain in hands and feet that worsens depending on how much trouble I am having breathing that day
  • Dizziness and blurred vision
  • Chest pain
  • Confusion(IE endlessly forgetting what I am doing), brain fog, and very heightened anxiety
  • General weakness. I have gone from running 3 miles a day and a regular workout routine to only being able to walk around the neighborhood on good days over the course of 3 years. It effectively ended my military career and threatens my day-to-day ability to take care of myself and maintain my career.
  • Extreme fatigue, on days where I can sleep it can be as much as 16 hours a day. On days where the irritation is especially bad I can't sleep at all, just endless "cold sweats".

These symptoms increase or decrease day by day and are directly related to how my breathing is. I have been given multiple CT scans and Xrays that show no real issues(Links can be given to the results on request unless I can post them here). Pulmonary function tests, stress tests, sleep apnea tests, etc have been given to me ad nauseum with zero helpful results. I have been put on inhalers but they made me significantly worse, basically anything that has to do with putting things in my lungs irritates them.

Is there any direction, like scans or anything, that I can take or am I basically SOL until it finally takes me out via heartattack? I have had zero luck with any relief. Is oxygen the way to go?

OP posts:
HundredMilesAnHour · 24/05/2024 21:04

I have long Covid (for 2.5 years) and approx 1 year in, after my second relapse, I was referred to a private cardiologist Prof Melvin Lobo. He did various tests and referred me for autonomic function testing on Harley St. He suspected I had PoTS but the testing revealed that I didn't but that Covid had affected my autonomic nervous system quite badly. The testing was fascinating actually. Expensive (£4-5k) but worth it.

https://www.hypertensionspecialist.co.uk/autonomic-function-testing-hypertension-specialist-london.html

I have improved a lot since then but still have chronic fatigue (amongst other things) thanks to long Covid. My cognitive issues are almost gone though and I'm back at work full time (although permanently exhausted).

Worth a try?

Prof. Melvin Lobo | Hypertension Specialist London | BP Treatment London

Prof. Melvin Lobo, a well known hypertension specialist practicing at London Blood Pressure Clinic, provides treatment for High Blood Pressure and low blood pressure in London.

https://www.hypertensionspecialist.co.uk/autonomic-function-testing-hypertension-specialist-london.html

Snippysocks · 27/05/2024 16:14

I have had Long Covid since 2021. It impacted my breathing but lung physio has dealt with this. I just wish that the fatigue could be dealt with, too. Recently, I thought LC had burnt itself out. On one day I did 2 short walks, a short exercise video and some moving of small logs. Following day felt a bit rough. Then I crashed again. It's an absolute blighter.

ACatCalledPushka · 10/07/2024 09:53

@cyberguy99

Sorry you're still suffering - it's rubbish isn't it.

I got Covid in March 2020 and have had LC since.

Our symptoms sound so similar! Only I don't have the dizziness.

My symptoms have changed over the four years (random bruising, pins and needles, tinnitus).

Please can I ask about the swelling in your hands and legs? My hands are okay but my legs swelled up literally overnight. In October 2021, I'd been experiencing stomach pains for weeks and overnight they went, but I woke up with swollen legs and a weird rash all over them. After a couple of days my right leg went back to normal but my left leg (from the knee down) remains swollen. I've tried wearing a compression sock and although it did (after a few weeks) bring my leg back to normal, my stomach pains started again. I stopped using the sock and my left leg swelled up again but the stomach pains stopped.

I had loads of tests in 2020 but every test came back 'within the realms of normal'. I've given up on Drs really. Five of us colleagues had Covid at the same time. Two have been medically retired (v. early), one has been to A&E twice with suspected heart attacks (but they weren't HAs) and one has ongoing neuro, respiratory and heart rate issues.

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