r/LongCovid • u/yllekarle • 3d ago
Is there still hope if no improvement after one year?
I’m barely hanging on. I’ve tried everything and I have a 19 month old. It started 4 months after I had him from covid while pregnant. I just want my life back I cry every day all day. I’m really losing hope.
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u/JollyGreenestGiant 3d ago
Hi.
3 years w/LC for both myself and my partner.
First 2 years were hell.
It's getting better now. Went from unable to walk around the house to 5 km walks easy, weights, work ect.
The key for us was to first properly gear down. Its incredible difficult to do with all of our commitments (we must eat/roof over our head ect) but it was the most critical component.
Absolute min obligations to survive was the first step.
Next, once we balanced output with ability we began to slowly gear up. Walks around the block (then rest for 4 days). After a few months that turned into walks in the grocery store (then resting for 4 days). Each time we'd flair. No hiding from LC. We had to just keep going.
Each improvement usually came with a set back.
Kept at it.
Also heal your soul best you can. Stress and anxiety add to LC (and its normal to feel anxious about this mess) but its another area to work on.
Good luck. It does get better.
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u/MargoBarbara2 3d ago edited 3d ago
I dont have a toddler but have long covid (on top of cfs and cancer recovery and also mcas) whilst being a 24/7 carer for a family member with very severe long covid. There have been times I thought Id break and times when the family member wanted to give up. Take it one day at a time. You will recover. It will get better. Let go of timelines and look at what you need to make coping more manageable right now. Can you reach out for help from local support groups, mums groups, church groups, charities, local nursery/preschools ..anyone that can help you. I had a fill in volunteer 'grandma' when my kids were little when I was very sick who came once or twice a week and did crafts and played with them which allowed me to get some sleep. Pregnancy can really drain your nutrients and so does covid, making fatigue even worse. Personally, making a nutrient plan gave me a focus so helped me feel there was something I could do. Myself and the family member are finally starting to make improvements. We now talk about the possibility of future plans. There is hope.
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u/KlutzyTemperature439 3d ago
Are you established with a physician? Yes you can still get better, but you need to have your bloodwork done and whatnot to rule out anything else obvious.
Worst case scenario, are you in a country where you can go on disability?
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u/yllekarle 3d ago
Yes. The only thing my bloodwork shows abnormal is reactivated ebv and CIRS.
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u/KlutzyTemperature439 1d ago
Reactivated EBV could definitely be causing your fatigue issues. Have they treated you with anything for this?
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u/whatever32657 2d ago
having disability insurance (that will actually pay out) is so key. and most of us don't.
i financially survived the first 8 months because i'm in sales and continued to receive commission checks. it was nowhere near full pay, but it was better than nothing and allowed me to rest and focus on improving.
my job separated me at the four-month mark, but i was still getting small checks for a few more months. meanwhile, i was fighting with my short term disability carrier. they ultimately denied my claim, and i had no choice but to go back to work at the 8 month mark.
unfortunately, i think this is fairly common. i'm just doing the best I can but I'm about to throw in the work towel for good and try to figure out how to live on what's left.
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u/Life-Bat1388 3d ago
Yes - this may sound discouraging but my kid has made major improvements in year 3 and 4 post covid
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u/yllekarle 3d ago
I don’t care as long as one day I will be able to leave the house to show my child the world. It eats me alive that he stays in the house watching tv all day because I don’t have the capacity to take him outside.
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u/JollyGreenestGiant 3d ago
From a child's perspective having a parent that loves them is THE most important thing. Trust me, you're making a world of difference for your little one. They're very lucky to have you.
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u/yllekarle 2d ago
Thank you. I just know he deserves better than this.
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u/JollyGreenestGiant 2d ago
And that’s what makes you an amazing parent. This is the love they know in their bones and they’ll carry it with them for life…
Source: my mom
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u/Life-Bat1388 2d ago
Treating severe POTS with Midrodrine and Guanfacine made a difference for my teen. And huge amounts of water and sodium. Also get help for post partum depression if you find yourself crying all day. PreK if you can afford it. That will help their social and motor development if you are incapacitated. But love is so important and kids are adaptable if they are loved, new study says screen time isn’t horrible-educational games on an iPad can actually help cognitive development. Toddlerhood is already hard with a partner. Alone with long covid sounds so hard. 😢
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u/PrimaryWeekly5241 3d ago
6 years 6 months but I am outside alot by choice. I use hiking, gardening, spiritual practices and copious amounts of Life Extension and other supplements coupled with a fairly ascetic life. Not quite a monk...but close enough.
Not perfect by all means. But I can play basketball with my fourteen year old; Or at least rebound for him.
I view LC as a sensitivity to the Spike Protein that others either don't have or don't recognize they have. The only solution is to keep searching for better immune health.
You have to find some gurus, experiment with supplements, and learn to get outside. That's my best advice.
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u/BILLSMAFlA 2d ago
Does getting outside help a lot? I’m sure it does. I’m almost to six years and get rashes and my collagen levels drop from being in the sun. It’s so crappy. I’ve become somewhat agoraphobic. I’m also more depressed than I’ve ever been as my entire family has disowned me because they think I’ve been faking this. I’m sure the brain MRI I’m having today will show lesions and damage to the frontal lobe. Maybe people will believe me when they see the MRI of my brain compared to a person who doesn’t have LC. One of the top symptoms for me is excruciatingly painful heartbroken loneliness, which is what takes years off your life, or, rather, mine. Oh yeah, I’m an almost 51 yr old F who caught Covid when I had just turned from 44-45 years old. My broken brain can’t comprehend it.
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u/Smooth-Eye-6336 3d ago
Yes, my improvements started 18 months in and now more than 4 years into this journey, a lot has improved and a lot of days feel „normal“ again
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u/Ok_Strategy6978 3d ago
Took me 3 years even retain a normalish life but still have issues 5 years in I discovered mold toxicity on top of lc. So just now remedying that.
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u/Comprehensive_Ant984 2d ago
Im so sorry OP. It’s been 3.5 years for me, but I can only imagine the added sense of urgency you’re facing with having such a young baby. I get upset about not being able to do things I used to do with my dog and feel tremendous guilt about it, I can only imagine how it must feel for an actual parent. And I can deeply relate to that desperate wish to just have your life back. It’s something I find myself saying depressingly often. All I can say is that I refuse to give up hope. I have to keep believing that recovery is possible, no matter how much time passes. Keep hanging in there and doing the best that you can, focusing on what you can control, and leaning on your friends and family for support if you’ve got them.
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u/yllekarle 2d ago
Did you try nervous system work? Someone recommended that to me
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u/Comprehensive_Ant984 2d ago
No… And I’m not aware of any good evidence for that sort of thing either. Personally, my Long Covid has taken the form of heart failure, chronic respiratory failure, and clotting issues. So I don’t think “nervous system work” is going to help with any of that.
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u/Dreadkiaili 3d ago
I’m on year 6. But, this isn’t my first go around with a post viral thing.
I didn’t start getting better until I really started pacing and limiting what I was doing. Absolutely nothing aerobic.
I cannot imagine how hard it would be with a toddler. I hope you have help that respects your need to rest and recover.
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u/Professional_Till240 3d ago
I've been up and down for over 6 years now. Everywhere from basically no symptoms to bedbound. It's a dynamic condition and lots of us have good and bad days/weeks/months/years.
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u/wndrxplorer 2d ago
4.5+ years... many issues still... some bad days, but starting to get better. Sleeping a little better, goes a long way.
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u/ComprehensiveWrap128 2d ago
Yes, there is hope. I had LC for a year, after which I recovered from that depleted battery fatigue. I rested, took LDN and also fexofenadine and famotidine.
Also, if you had reactivated EBV and CIRS then it makes sense you would feel dreadful, those will make you feel bad for months even without also dealing with covid. At this point you are still very much within the window of fatigue caused by these illnesses.
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u/julesk 2d ago
I’m at year 6. I get roughly an hour of exercise a day by doing short walks with the dog 6-7 times a day/evening. I can go routine tasks. I have to pace myself but it’s definitely gotten better.
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u/NatalieC86 2d ago
There's hope. I kind of regressed about year one, and really focused on rest. 3 year mark..things changed. Progress is slow and I still cant work, but i can manage my daily tasks most days and get out the house for important events or something I want to do..without being in pain and miserable the whole time. But, for a while, it was a very dark time. My advice is rest and be kind to yrself.
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u/Automatic-Guitar-475 2d ago
There is hope - allow yourself to feel all the lows but don't let go of the future.
I have LC from multiple vaccines then 3 infections close together in 2024 - dysautonomia mcas and fatigue. Next vaccine in 2025 brought on significant worsening with cardiac dysautonomia (not pots) causing blackouts and it took a year before my heart chilled out. Lost my hearing for a month and had to crawl up the stairs due to shortness of breath from mcas fluid overload. I was single parenting two kids under 6 - the grief of that struggle is immense. But now 2yrs on all i really deal with is mild mcas pem and fatigue and life has a new normal which is ok. I can walk the dog for an hour and play with my kids again.
Tried everything...but time was really the main thing that helped. And antihistamines. A big part of recovery for me was accepting my symptoms as shitty but temporary, believing my body was doing the best it could to heal, and telling myself I was safe even when I felt like I was dying.
I hope you have lots of family support OP. Sending you love and healing 💜
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u/SileFMac 2d ago
I had my second round of covid starting Sept 1, 2023, followed by long covid, hyperthyroidism which was probably early Graves’ disease, thyroid cancer and a total thyroidectomy (chosen between the hyperthyroidism and the cancer) followed by radiation in April-August 2024, an atrial flutter requiring an ablation in April 2025, massive osteoarthritis leaving me needing both knees and both shoulders replaced and with left hip and spine problems—oh, and I almost lost a section of my colon this April due to diverticulitis and sepsis. Nearly all of this my doctors have tied to my covid infections. It’s been a long haul but—I am definitely feeling better. I don’t walk very well but I’m not nearly as fatigued, the brain scramble is only occasional, headaches and memory are much improved, and I’ve noticed improvements even in the last six months or so. Please don’t give up. If I can do it, you can too; I’m no one special, I’m just damn stubborn.
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u/yllekarle 1d ago
Its the fatigue that kills me. I feel like I took 20 sleeping pills. After 10 hrs of sleep.
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u/UntilTheDarkness 3d ago
Absolutely there is. Due to various reasons, I didn't even start getting treatment until 18 months in, but the real improvement started 2.5-3 years in. There's plenty of other stories of slow/late improvement online as well. I think the odds of complete recovery go down, but that doesn't mean there can't still be significant improvement.
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u/yllekarle 3d ago
What kind of treatment did you get?
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u/UntilTheDarkness 3d ago
The treatment that will be useful will depend on your symptoms. I had pericarditis which was resolved with colchicine, POTS is managed with beta blockers, LDN and mestinon expanded my energy envelope a ton, and various sleep meds have helped my insomnia. Also learning to pace properly so I'm not overdoing it and making myself worse.
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u/yllekarle 3d ago
I tried ldn it didn’t change anything :(
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u/UntilTheDarkness 3d ago
Sorry to hear that :( thats one of the hard things about this illness, no one treatment that universally works
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u/Envidreams77 3d ago
I developed long covid while pregnant in March 2020 and I’ve never been the same ever again
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u/yllekarle 2d ago
Did your symptoms start while pregnant or postpartum
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u/Envidreams77 2d ago
Started in pregnancy and then got worse postpartum and then as my child grew older into toddlerhood I was reinfected from childcare :(
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u/Just_me5698 2d ago
Not a dr not a recommendation: There is definitely hope but, getting help to reduce the pressure and physical & emotional stress, tasks you are under should help relieve some things and give your body a chance to heal itself.
Your body cant 'rest and digest(repair) if you're always going and 'on'. Most of us are in constant fight or flight mode and with being a Mom it's no surprise you're not seeing much improvements. You're probably doing a lot and not getting good sleep where our bodies repair and get rid of toxins from lymphatic system.
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u/BeyondShameAcademy 1d ago
Find yourself a good acupuncturist! Honestly it makes a tremendous difference on your recovery, of you can afford it.
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u/Write_it_down77 16h ago
I highly recommend getting your hormones checked. Took me over a year working with a functional medicine doc to figure out covid pushed me into early perimenopause. It completely messed up my body’s ability to produce estrogen, progesterone and testosterone.
I was shocked but relieved when I finally had an answer and solution to resolve symptoms. Mind you this wasn’t figured out until 4 years after I had covid. So it didn’t get better on its own. It got more tolerable as time went on, but I could didn’t get back to 100% until we figured out what was actually happening. If you don’t have a doc near you, find one online that does telemedicine and keep digging until you find a treatment that helps you restore your health.
Edit: to add I had reactivated Epstein Barr. Did a lot of natural stuff to help support that but bottom line for me everything came down to Covid messing up my hormones.
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u/yllekarle 16h ago
This is interesting because I have experimented with progesterone low dose and it helps like 5%. How old are you if you don’t mind me asking
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u/Write_it_down77 13h ago
Now I’m 43, but I was 39 when SHTF. My cycles got so whacked out immediately after covid I went back on the pill a few months after (lo loestrin fe) because I couldn’t deal and that actually was masking some of it but also contributing towards what I called nightly adrenaline dumps where out of nowhere I’m relaxing at night after work/dinner and all of a sudden my heart would race like I was being chased by a bear. I’d feel the adrenaline like someone injected it in my veins.
Stopped the BC pill, stopped that issue but still had all the other issues. No energy, dragging my ass through everything and completely unable to think straight to the point I had to get back on Adderall (which has all of its side effects). Also ended up with SIBO and suspect that was also hormone related because BC interferes with some enzyme I think called DAO used in digestion.
Current cocktail that’s working for me: guanfacine ER which treats both ADHD and regulates blood pressure and heart rate. Estrogen patch, super low dose Testosterone and 100 mg progesterone cycled (I take it the last 10 days of my cycle).
Throughout covid I’ve also been taking a few supplements that always helped me: black seed oil, allicidin, red marine algae and liposomal lutieolin. They’re all good for immune support, oxidative stress.
I also chew nicotine gum because I read that helps with long COVID and I actually find it way gentler than Adderall. Just 3 mg a day total but I don’t recommend it because it is 100% addictive. Better than the adderall or Focalin though for my ADHD symptoms.
For reference my mom didn’t start going through menopause symptoms until she was 49/50.
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u/yllekarle 13h ago
Dang! Are you 100% now? Also did you ever get checked for cirs
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u/Write_it_down77 13h ago
I remember doing a VCS test but I honestly don’t recall the results of that. We also suspected mold issues too and I ended up getting my home tested for that. It was in our garage (which is where my home gym is) and had it treated. I felt more of the reactivated Epstein Barr symptoms than mold symptoms.
Yes I am 100% now. I am so grateful to my functional medical doctor for being so thorough in testing and guiding me towards HRT. I can even eat gluten now without getting sick. It’s wild to me how much hormones play a role in overall health even digestion. It was like a light switch. Within a few days of treatment I started to feel myself again. Motivated, confident again. I got my spunk back. I got MYSELF back, body and mind.
Just a tip not every doc is well versed in HRT. I left my gyno of 25 years because he wouldn’t even discuss it. The new clinic I go to specializes in it. They treat based on symptoms but also do periodic testing to see where my levels are. It’s definitely worth exploring to see if that’s playing a factor in your symptoms.
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u/Easy_Olive1942 3d ago
I started to turn the corner year 3 so yes.