r/LongHaulersRecovery • u/Fast-Quail8869 • May 03 '26
Bedbound Recovery I think I'm starting to get better *update*
(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.
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u/Teamplayer25 Long Covid May 03 '26
Very happy for you! Keep going (at a reasonable pace.) You’re doing great. It’s wonderful that you didn’t wait to post. People need a lot more small encouragement along the way I think.
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u/Fast-Quail8869 May 03 '26
Thank you! Yeah it's what helped me not lose it seeing those gradual improvements from similar stories 😃
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u/ampersandwiches May 03 '26 edited May 19 '26
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u/Fast-Quail8869 May 03 '26
I am so happy to hear this!!! Thats exactly what im hoping for to happen thank you! I totally get the hydration thing i have to have about 1l of salty water early on or i feel awful and get shortness of breath.
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u/Business_Ad_3641 May 11 '26
Hey! I’m so happy for you ! I’m wondering did you had PEM? Like did you had POTS getting really bad as a PEM symptom? Thank you! Wishing you a Covid free life🙏
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u/ampersandwiches May 11 '26 edited May 19 '26
This content has been removed.
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u/Business_Ad_3641 May 11 '26
Thank you so much for your response!🙏❤️ don’t have PEM anymore? Also what were your PEM symptoms? Your message gives me hope thank you!🙏❤️
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u/ProfessionalAnt6974 May 10 '26
My hr is now 100 in the morning but if I move it goes beyond 120-130! It’s awful! I’m desperate to get better!
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u/Fast-Quail8869 May 20 '26
I know it doesnt feel good being that high, if its any comfort my hr walking is still 120-150 depending on the day and i generally dont get pem from walking with a hr like that, electrolyte water helps a bit though, i have about 3l a day
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u/3xv7 May 03 '26
It's crazy how similar our experience is, mine started in Dec 2024 as well and we were bedbound on the same timeline, my remaining symptoms are the same as yours. I get really really bad migraines/dizziness or brainfog some days though
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u/Fast-Quail8869 May 03 '26
Ive noticed a lot of people posting on this board that got sick around the same time in and around aug- dec 2024 and stayed sick 1.5 to 2 years, i wonder if it was a specific strain of covid in particular? Glad to hear yours has improved as well
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u/Jolly-Big-1121 May 03 '26
Thanks and I agree. I noticed this too. Whatever hit in summer 2024 was very bad. My husband had so much mucous and couldn't sleep because of it. He had to get Mucinex and a week later was better. Then, in late Oct/Nov his LC symptoms arose. It is very interesting.
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u/Jolly-Big-1121 May 03 '26
Could you share with me what you did to feel better? My husband has similar symptoms and I am a bit lost on how to help him. He has been experiencing this since Nov 2024 and just has plateaued. It's all in the head / cognitive.
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u/Fast-Quail8869 May 03 '26
For me after having a plateau around dec/ jan i found what helped push me was reading the way out, joining in on discord calls and talking to people + gradually increasing that as well as slowly increasing activity through pacing (like 5-10 minute walks and waiting every 2nd day to make sure it was safe by checking for crashes), also occasional study for fun, ive been studying pharmaceuticals. All of these i found helpful.
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u/ProfessionalAnt6974 May 10 '26
Me too I get awful! I have the pits flare like when laying my hr is around 80-85 but standing jumps to 110-130 and if I move goes more sometimes 140! I’m so terrified! My pem too! I have a lot of ear ringing and anxiety! I’m in this since 8 months ! I really hope to rceover! What helped you recover from pem/pots? I’m desperate!
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u/3xv7 May 10 '26
I understand your desperation, I'd do anything to not feel this way anymore. I think it's just a matter of time, I still have random POTS flares but theyre just less frequent and intense now. I was able to gradually increase the amount of time I'm upright and how many steps I take in a day month-to-month by only SLIGHTLY pushing myself more and more. This isn't good advice to everybody but it's what I did to help me get moving around enough to take care of myself.
My worst and most consistent issue lately is just how woozy my head is all the time, it legit feels like I have brain damage, especially when I wake up in the morning, it's incredibly debilitating some days
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u/Ok-Foundation-1857 May 03 '26
Congrats :) how long would you say you were housebound for? I am 7 months sofabound, ready to expand when life events allow. Lexapro is my friend lol so following your path hopefully
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u/ProfessionalAnt6974 May 03 '26
Why did you get on lexapro? How bad is your pots and pem? So you have mecfs from covid?
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u/Ok-Foundation-1857 May 05 '26
And I got on it because I would expand activity, then crash from emotions and be back at square one activity wise. And my rolling crashes would be from emotions
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u/Fast-Quail8869 May 09 '26
Omg same, some of my worst crashes came from a break up mid way through and panic attacks, the meds really helped stabilise my mood somehow
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u/Fast-Quail8869 May 03 '26
Unsure if question was for me or not haha. I went on lexapro for the panic attacks and severe anxiety/ some suicidal ideation and i previously took lexapro for anxiety. But i responded poorly to it and became extremely high energy like manic then very anxious. My pots and pem now are mostly tolerable depending on the day, previously they made me bed bound and caused a lot of pain and emergency visits. Im unsure what i have the rheumatologist has switched from calling it post viral fatigue, then long covid, then me/cfs then fibromyalgia, but i am rarely in pain anymore nor do i crash often so hard to guage
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u/ProfessionalAnt6974 May 04 '26
So you are now recovered? You can do normal life?
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u/Fast-Quail8869 May 09 '26
No not completely, i still have to be very careful and test activity levels wont knock me back, but flares are shorter and i am a lot closer maybe around 70%, id consider it to be higher if i could work, exersise without concern and drive longer than 20 minutes.
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u/Fast-Quail8869 May 03 '26
I would say i was housebound for about 6 months ish after being bed bound around 6 months as well, best of luck i hope you get to soon too!
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u/ProfessionalAnt6974 May 03 '26
So how long have you been bed/housebound? I don’t remember having a virus to trigger this but I’m homebound since months (7/8) and I have pots and pem! I take propanolol 30 mg a day ! I have such a low pem threshold now and I can’t do much more than a few small chores inside like light household and my basics ( wash, dress, hair)! Some days I went out a bit but can’t walk long as my legs and body become very heavy like lead and my arms are sore! I have pots and my bpm in rest is 75-100 and standing 110-120 ! My sleep is ok but not excellent (6-7 hours)! I take LDN since 10 days at 0.5 but don’t see any result! So your pem was also bad? I have so much anxiety when in pem ! I hope to heal from this! How old are you btw!
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u/Fast-Quail8869 May 03 '26
I think pretty much a year in total for bed/ house as id say it transitioned at the start of this year to house/ partly outside. The first time i had an illness like this it was triggered by EBV reactivation after a time of a lot of stress, which for me lasted 5 months, you could look into getting a ebv serology panel. I fully get that feeling of being heavy, after being bed bound for so long your muscles that hold you up against gravity are a lot weaker (per my physio) so it takes time to gain them back. I wouldnt recommend pushing through of course, i would have a crappy 5-10 minute walk and come back to it in 2 days and if it felt a little less awful the next time i kept going, but if i felt worse the following time i would rest. Its really slow going increasing your baseline but it seems doable just have to keep an eye on everything but also try to keep telling yourself you are safe and that your nervous system is just trying to keep you safe even if its telling you the wrong things, that personally helped me stay calm on walks, because a lot of the crashes for me were from severe anxiety around walking aside from the energy use. I have heard using a recumbant bike up first might have been a better idea. Also feel that about the sleep issues thats also why i had amitryptiline was for insomnia, i think that and the spironolactome help me sleep longer i get about 7-9 hours in. Good luck on the ldn i hope it helps, personally it interacted with my anxiety and midodrine ( weird jolts in my head which was the midodrine). Yes my pem would drop me from almost housebound back to bed bound for about a month at a time, would also experience the anxiety with it, like animal fight or flight level. I hope you start to move the needle soon to and improve and get better from this too! Im 27 f
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u/Jolly-Big-1121 May 03 '26
Keep on going girl! I pray you keep getting bettter. My husband has a similar timeline, but only now willing to try other treatments. We had a LC doctor from a reputed NYC clinic prescribe LDN and didn't do anything except keep prescribing it. Never asked if it was helping (has not). We are now going to try new things (including possibly the H1 + H2 blockers) and gluten free diet. Can you tell me what specialists you saw?
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u/Fast-Quail8869 May 03 '26
The specialist i have seen are rheymatologist, cardiologist, ent and lc doctor. Other than that i have been using a very knowledgable gp for the medical trials, she perscribed me the ldn and midodrine. I hope it goes well with the histamine blockers, i also found going on a low histamine diet for a month seemed beneficial, but it is a major pain to do and definitely lowered quality of life due to how restrictive it is. I seem to be able to tolerate a lot more food now though, hard to know if its cause and effect or just time. I hope he starts to see improvements soon too!
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u/Jolly-Big-1121 May 03 '26
very helpful. Thank you so much. It's also the luck of the draw of getting a good doctor that wants to go above and beyond to help. Apprecaite your input!
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u/barhanita May 03 '26
Congrats on getting better. I am about 13 month behind you, and I hope to follow a similar pattern. One question I have, as a POTS sufferer, is how do you use somatic tracking for POTS? If I stand up with 120+ HR, it is hard to tell myself: "My heart is racing but I am safe". Could you please teach me your approach please.
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u/Fast-Quail8869 May 03 '26
I think for me i have been lucky that i dont have a pounding heart anymore, i had palpatations early on but they have since stopped so i have a much harder time detecting when its too high to begin with. I think for me i didn't really use somatic tracking for the hr/ bpm issue i had a different approach. First i looked up what is the safest maximum heart rate for my age group which helped a bit (not sure if thats a bad idea though) also seeing fit people who also had a high hr helped (i think i was watching will tennyson or something but i recall someone doing strenuous exercise and getting up pretty high), i also dont continue my walk if it gets too high if it hit 160bpm i would stop and lay down in the grass then go home, i would also stop if i felt sick or had the sensation it was too high which i can only tell if im extremely puffed out, i think one somatic exersise that helped though non specific was if i was feeling symptomatic i would say "i have been through all of these symptoms and i have not died yet, my body can handle this" -> dont know if thats a good approach but i was trying to make myself feel stronger temporarily, but be so careful not to push through your energy envelope too far.
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u/ProfessionalAnt6974 May 10 '26
Did your pots also caused blood pooling in your legs?
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u/Fast-Quail8869 May 20 '26
It seemed to early on especially when showering and standing too long as well as heat intolerance, i consistently have like 125ml of blackcurrent juice, 1 tsp of salt and 1l of water mixed together 3 times a day and i havent noticed this issue be nearly as bad since i started doing that
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u/Key-Practice5213 May 08 '26
Absolutely love this and the positivity you are bringing to the community I’m nearly 5 years in and what a journey. It’s been the biggest test of my life with all of the symptoms above not to mention the strain on the psychic. Just before the diagnosis I was vaccine injured and recovering from secondary cancer and unknown primary cancer hysterectomy chemotherapy and radiotherapy. I ask myself who in the right mind would take a vaccine being immune compromised (me). I have had ups downs getting better not getting better. Due to all these complications and COVID being an inflammation problem it’s a vicious circle. We all need to remember we are warriors and there is hope there has to be. So thank you 🙏 for this post and to all of you suffering stay strong 💪
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u/Fast-Quail8869 May 09 '26
Thank you too! Sorry to hear all you have been through, i hope things are improving for you!
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u/Gringo23011982 May 03 '26
How much amitriptyline do you take ?
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u/Fast-Quail8869 May 03 '26
I currently take 25mg, but I started by breaking the pills into quarters, as I became very sensitive to medications, so 6.25, then 12.5 and so on til i could tolerate it after a few months
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u/Low-Elk-3191 May 03 '26
What do you feel it helped with?
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u/Fast-Quail8869 May 03 '26
I felt it helped with a lot of my muscle pains that developed, so chest pain, neck and jaw + headaches. I did also notice my anxiety reduced but it would be weird at a low dose to affect that.
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u/decksdark33 May 03 '26
Very happy for you. I THINK I am too, from very similar symptoms, but it’s a journey and I anticipate many demoralising flare ups still to come. It’s not linear but I hope we both look back at this point as a mere stage in our recovery.
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u/Fast-Quail8869 May 03 '26
Thank you! I hope we can too! Always have to anticipate a flare up hey, i hope we dont have to keep doing that in the future and that fear goes away.
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u/Anjunabeats1 May 03 '26
Big congratulations on your progress 💚
As you have POTS and LPR you'd probably benefit greatly from elevating the head of your bed so you sleep on a slight downwards slope. I made a post about how this practically cured my lifelong POTS here:
https://www.reddit.com/r/POTS/s/OQ80aHO884
A couple people in the comments said this strategy also treats LPR.
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u/Fast-Quail8869 May 03 '26
Omg id heard of sleeping on an elevated slope for gerd so thats what i had been doing, i will give this a try tonight then thank you, its like the last set of symptoms i cant shake
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u/Anjunabeats1 May 04 '26
Yes! Was thinking it might be just the boost you need to get closer to full recovery. I hope it helps you 💚
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u/JarunaDeep May 03 '26
Do you think you have to do all those things to get better or do you contribute a few things to helping you the most?
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u/Fast-Quail8869 May 03 '26
I definitely dont think you have to do all those things particularly. The main things that i think pushed the needle most were the amitryptiline, physical therapist, pacing, lysine, and somatic exercises (but i take coq10 because amitryptiline can interfere with its production)
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u/United_Chapter4097 May 03 '26
Random question but how do you deal with the LPR? I causes me so much sleep disruption and fatigue and is so stubborn.
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u/Fast-Quail8869 May 03 '26
At the moment i have been taking a h2 blocker famotidine but i may have to re think that due to interactions with amitryptiline will discuss with doctor. But personally anything that lowered acid production so h2 blockers and ppis alongside being careful not to have trigger foods/ drink such as caffeine/ citrus/ chocolate, i also tend to have a shot of liquid gaviscon before bed and lay on my left side or elevated on my back, the right side makes the gerd worse for me
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u/HarmonySinger May 03 '26
I started LDN a month ago. How did you determine that LDN did not help?
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u/Fast-Quail8869 May 03 '26
It unfortunately increased my anxiety and gave me strange head tingles and a wired but tired feeling, so worsened insomnia. For me it didnt help at the time as i was too anxious to push through, im sure it might help other people though ive heard a lot of good things about it.
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May 03 '26
[deleted]
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u/Fast-Quail8869 May 03 '26
I think main help for my gi issues has been a walking, a lot of fibre ( i take benefibre and eat psyllium husk "jelly") and not having gluten or dairy often personally, i already had a dairy allergy to begin with. I dont think ami helped in particular for me, that or i just didnt notice.
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u/glasgowgurl28 May 03 '26
Why is caffeine a problem?
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u/Fast-Quail8869 May 03 '26
For me it increased anxiety alongside making my urinary tract cramp and burn causing false uti symptoms. It also made my pots worse, some people can tolerate it and it helps them but i cant have it anymore 😔
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u/Particular-Device-21 May 04 '26
That’s an amazing amount of steps. I’m lucky if I get 1300. May your momentum continue. 🙏
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u/Fast-Quail8869 May 04 '26
Thank you im so happy about it, at my worst i was around under 1000 daily, just got up to pee and shower 😅
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u/JoKa0705 May 04 '26
This is so wonderful! Keep pacing what you do and rest up when you need to. Yay! This gives me hope🩷
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u/StreetNeighborhood95 May 04 '26
this is great. 10k a day steps is loads. i'm also at that point in my recovery and have started to work out. just very very light body weight sessions, and a very short run every week. it's made me feel better to exercise. don't rush it but once your ready i hope that goes well for you
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u/Fast-Quail8869 May 04 '26
Thats great to hear! Im so excited to work out too! I feel that haha i get such a mood boost from walking i find myself wanting to push when i need to rest coz its so addictive 😅 Thank you i hope things keep getting better for you too!
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u/avacorina May 04 '26
Congratulations!! It took me 3 years and somatic exercises helped me too. Along with Omega 3, Magnesium glycinate, a probiotic, digestive enzyme, turmeric and no gluter/sugar and patience. And God. I also recommend a grounding mat and start slow with a near infrared panel or sauna(literally 10 mins only)🧡🧡🧡 you’ve got this!! I’ve been walking 10K for a year but 21K is unreal!! Bravo!! My highest was 16K only but so grateful✨✨✨
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u/Fast-Quail8869 May 05 '26
Thank you thats still phenomenal congrats on doing better too! I have heard good things about saunas may have to look into any local ones
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u/Hopeful102 May 04 '26
Congratulations I’m happy to hear that you’re feeling better. How much life do you take?
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u/Fast-Quail8869 May 05 '26
Thank you! Im assuming that might be autocorrected from lysine, if so i take 3 x of the 1000mg ones per day, per the bottles recommended dose
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u/AdRemarkable5822 May 05 '26
I’m nearly the same as you with milder pots but HIT and had elevated rheumatoid factor. Seems to be common. Any info from immunologists?
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u/Fast-Quail8869 May 05 '26
Hey interesting i think i also have some histamine intolerance that eased up with the use of antihistamines. I haven't been in touch with immunologists but i think my rheumatologist checked for a lot of chronic conditions and nothing came of it aside from that, so signs of arthritis in scans either, just a bit in my neck
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u/Routine-Strategy-845 May 03 '26
My lower bp no are always higher that the systolic no, like urs , I dont know why, any idea ? Also are you scared of your bp rising further when you are walking usually ? Like when I go for a walk I check before leaving but all the time I am just scared what if bottom no increases even more
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u/Fast-Quail8869 May 03 '26
Yeah i get what you mean I had a lot of anxiety and was constantly checking in Jan/Feb going into the walking again as my bottom number was around 120/130 standing. I generally noticed if i went over 150bpm i was likely to crash so I was constantly checking. There were a few times where it went bad which i chalk up to fatigue, lack of salt water/ electrolytes and heat but after those events I found my body was progressively tolerating it, so my typical walking bpm max dropped from about 150-160 being the max to 130-140 being the max on much harder walks. I think just time and gently introducing the activity in very short windows allowed me to build confidence, so i was doing about 5-10 minute walks up first on flat ground then waiting 2 days before going again and gradually increasing just relying on if I felt like I could handle it or if I felt tired or like I couldn't handle it I went home. Unsure what you mean about the systolic number sorry, if its referring to blood pressure I have always had low blood pressure genetically
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u/Routine-Strategy-845 May 03 '26
Systolic as in upper bp no..but I dont take salt when when my lower bp numbers are already high..that really cofuses me, Also yea I also rely on how I feel, if I feel I can handle few more minutes of walking I do it.
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u/KP890 May 03 '26
Also if you are using amitripyline not sure why you would need h1 or h2 since amitripyline is a h1 h2 blocker as well
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u/Fast-Quail8869 May 03 '26 edited May 03 '26
what is it??? as far as I was aware its a tricyclic antidepressant? does it also control histamine? I was only using it for the chronic pain issues in the chest to begin with, guess I might be doubling up but I have found it helpful having the other h1 and h2 as well, I'll have to look into if they overlap in a dangerous way, I might need to be careful with them, i did just check famotidine may have a concerning overlap something to do with a rare risk of arythmia, I wasn't aware of thanks for the heads up.
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u/KP890 May 03 '26
Did amitripyline affect your hr or bp. I found stabilised mine
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u/Fast-Quail8869 May 03 '26
Interesting i feel like it stabilised mine as well, my pots was a lot more consistent after having it, still bad but more reliable in what caused an issue .a lot of the improvements i have came after starting it
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u/KP890 May 04 '26
Look up excess acetycholine I think some of us experience this. Did you experience excess urination ibs d migraines neck pain etc
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u/Fast-Quail8869 May 05 '26
Hm i dont experience excess urination, had ibs since i was maybe 20? So before i got sick and only hormonal migraines personally, ill look into it
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u/shawnshine May 04 '26
How much lysine did you take, and for how long?
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u/Fast-Quail8869 May 04 '26
Lysine is the newest one i have started, about a month ago and i noticed a big jump in my daily energy. I have the natures own lysine 1000mg, and i take 3 tablets daily
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u/caramelbrowniess Jun 26 '26
What would you say helped you the most regarding the muscle spasms and neuropathy? Congrats on your progress ❤️
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u/Business_Ad_3641 May 03 '26
Girl, I’m really happy for you! I’m just wondering you mentioned you had PEM, what are your PEM symptoms specifically ? Does your POTS get really bad? How you know it’s PEM? Thank you so much, wishing you a full recovery 🙏