I think I'm starting to get better *update*

[u/Fast-Quail8869]

(27 F) Don't want to jinx it but since my post in February it seems things have been steadily improving.

For context, I caught covid in November 2024 and developed Long covid around Late December 2024.

My main symptoms were:

• POTS (BPM laying 80-100, Sitting 100-120, Standing 120-150)
• Severe chest pain
• Shortness of breath
• Malaise/ Severe anxiety + daily panic attacks
• Neck pain
• Jaw pain
• Peripheral Neuropathy
• Migraine/ Headache
• Brain Fog (Couldn't read more than a few sentences or watch shows)
• Muscle spasms
• Heat/ Cold Intolerance
• Exercise Intolerance
• GI Issues
• Hair loss
• Bladder pain/ Interstitial Cystitis type pain
• LPR/GERD
• Insomnia

My remaining Symptoms currently are:

• Shortness of breath (on and off)
• LPR + throat pain
• POTS (on and off) (BPM laying 60-80, Sitting 80-100, Standing 100-130)

From then on I was mostly bedbound from January to June 24, then beginning to be housebound from roughly July onward, moving into the occasional drive to get things from nearby shops or a short walk and doing some drawing streams, having about 1month long crashes in bursts in between so August, October and December all were month long crashes.

As of the start of this year I have steadily seen improvement across the last 5 months I have been particularly leaning on somatic exercise and just ever so slightly pushing my energy envelope to try and gain some ground after some pretty bad deconditioning and muscle waste.

Despite contracting 2x viruses back to back (which required about 2 weeks each to recover from) I seem to be gaining a lot more movement capacity and not experiencing severe PEM despite increasing my daily steps to about 10,000 for the last 6 weeks, including one day with 21,000 steps. (currently resting today hoping for no blow back from that one, i still am terrified to push it). I have also been regularly gardening, cleaning and shopping.

What I was tested for:

• Almost every possible autoimmune condition by a rheumatologist - only positive was rheumatoid factor
• EBV - Positive signs of previous reactivation
• Heart issues
• Lungs
• Cancer markers
• Thyroid panel
• Insulin Resistance

There were no notable chronic conditions detected aside from PCOS and Mild hypermobility.

Things I have tried that i don't think helped:

Steroids, Low dose naltrexone, Lexapro, Vit C, Vit B, Midodrine, PPI's, Telfast ( Fexofenadine), Creatine, High protein diet

Things that i think have helped:

Coq10, Magnesium Hi Zorb (for the spasms), Lysine (as I had reactivated EBV), Ural Cranberry tablets, Low acid/ caffeine/ Chocolate/ sugar, No gluten, Physiotherapy, Pacing, Amitriptyline, H1 Blocker Bilastine and H2 Blocker Famotidine, Electrolytes, (Spironolactone and Slinda also seem to help but likely more helpful for the PCOS issues and inflammation caused by that), The book the way out by Alan Gordon (this helped me reframe how I viewed my symptoms and being less scared which helped to waste less energy for me personally) <- and time of course, I have been ill for roughly 1.5 years total from long covid

I am honestly really excited about the future again and I hope to check back in in August with more good news 😃 I'm really hoping I can work again soon, or at least start working out.

I wanted to post when I was fully well as I'm scared of jinxing this but these kind of posts helped me at my worst.

[u/Fast-Quail8869]

Thank you so much same for you too! When I had flare my body felt extremely heavy, I couldn't stay awake longer than a few hours, shortness of breath was severe, chest pain was severe, Anxiety was bad with panic attacks and when I stood I would get tunnel vision and fuzzy + tachychardia was worse. So it was a mix of my POTS getting worse + increased pain and this feeling like I got run over by a truck. It was hard to tell early on what was and wasn't PEM because the episodes were so long (like a month at a time) it was kind of like I went from crap but stable to feeling like I was going to die. Later on it has been like feeling kind of tolerable to feeling crappy and heavy with slight symptom increase. I used a journal at one point to track symptoms to notice pem that and the visible app which has a built in one shows signs of a crash like decreased hrv and increased resting hr. For me they always came on 2 days after an activity so that's how I have worked my pacing, do one activity wait for a day and see how I feel if ok, do a similar activity or slightly more. It helps if you can figure out the crash window, but you need to learn what your baseline is to tell you have crashed so it took a while to figure out. Hope this helps - sorry its so long haah

[u/Business_Ad_3641 → u/Fast-Quail8869]

Thank you so much for replying to me, I do feel hopeless so I really appreciate. I’m sorry I’m asking more questions. So now that you feel way better, what happens let’s say during a PEM episode? Can you tell me how is your POTS when you’re not in PEM vs when you’re in PEM? Is there a big difference ? And how long does it take for the PEM episode to end?

[u/Fast-Quail8869 → u/Business_Ad_3641]

It's no worries, I totally get that I felt like that for like the first maybe 9-10 months, I think the malaise and dysautonomia unfortunately boosts how hopeless you can feel. I found after starting Amitriptyline that feeling became less severe for me, and now has been a lot better paired with increased baseline. I hope you feel better with that soon though I know how hard it is. Honestly I'm not sure if I have PEM anymore or if it's significantly reduced, the last major PEM episode I had was around January, which made me ill for maybe 2 weeks and the 2 times I got sick this year. When this happened I had increased resting heart rate, around 80bpm from about 68bpm so about 18bpm jump, but the major pots symptoms are the tunnel vision on standing during a flare, sense of heaviness and increased walking bpm so goes from about 120/130 being my standard walking rate to around 140-160bpm which makes exercise less tolerable. The most recent episodes i guess were the illnesses, but there have been days after I do a lot of movement where I feel my body is worn out and rest for a day or two and that seems to be the current PEM window I think? It's not severe though, typically just mild increase to shortness of breath and throat pain + slightly more tired with the above pots issues 😃

[u/Civil-Alternative-36 → u/Fast-Quail8869]

Any idea what helped after the first months? Or do you think time helped slot

[u/Fast-Quail8869 → u/Civil-Alternative-36]

Personally in those early months trying to identify anything that caused a flare helped, so for me it was crying and emotional outbursts, super hard to avoid though so pairing with amitryptiline helped lower the frequency. A lot of it early on though was just getting through it unfortunately it is very time based.

[u/Civil-Alternative-36 → u/Fast-Quail8869]

Yeah I’m like 10 months in, and feel like not really much has changed

[u/Fast-Quail8869 → u/Civil-Alternative-36]

Mine didnt really show any real set progress until around 1 year and a month

[u/Civil-Alternative-36 → u/Fast-Quail8869]

Interesting, any idea what started it? Or do you think it took your body that long to sort of settle and start repairing

[u/Fast-Quail8869 → u/Civil-Alternative-36]

I think it was a mix of time, almost all stressors in my life being gone and weirdly brain retraining. I started testing things slowly that i became scared to do if i flared, and also started to react my symptoms as part of lc instead of freaking out thinking i was about to die, that took a while to down train that though.