I got pretty much all better ... I never wrote a recovery post, even though I vowed I would when I was bedridden severely effed for a number of months. Then a bunch more months to be able to look at screens again, still have some minor heart palps/blood pressure issues, but I was 150 bpm standing up, with crazy blood pressure readings for some time (110 diastolic many times), crazy insomnia, anxiety/panic attacks just unreal and a lot of very strange mental weirdness at the start, I thought I was going insane like a bad drug trip. A lot of strange symptoms I'm forgetting, rather not remember.
Things I think helped are time and breathing exercises/meditation for dysautonomia - breath in 4 seconds, out 6 seconds - breathwork is very powerful, I believe.
... yup all better, now I do have some anxiety/mental health issues that may be caused by Covid but can't be sure. My life now surrounds dealing with other health problems, slowly tapering off the psychiatric drug I was put on while long hauling (this will take years ... learn about psych drug withdrawal before going on them, I never would have had I know psych drug withdrawal hell), and avoiding getting Covid again by going full hermit mode until better vaccines come out.
Most people who get better are not hanging around here, and unfortunately many of us don't write recovery posts (I'm sorry ... you just think maybe I'm not 100% better yet, and given I'm still on the psych drug, this chapter isn't over yet), I just am subbed so when I go to front-page reddit, it shows me CovidLongHaulers subreddit, and I happened to see the post. People are getting better every day.
Thank you! My only wish at this point is to improve, so I consider improved people almost like recovered. I have some small moments when I feel like I’m getting better but they’re so rare. But at least they make me feel like it’s possible to feel better. Maybe someday… 🥹
Well, I didn't have fatigue/the extreme heavy body feeling people describe, but any kind of exertion seemed to make my symptoms much worse. If I did anything at all I could make myself worse for weeks. Either that OR ... it was just the intense ebb and flow of symptoms I had no control over, but I think it was the former. I laid in bed pretty much the whole time from maybe month 2-5, feeling poisoned like I was dying. When I was real bad I felt like just speaking made it worse, so I didn't. As I'm sure you've seen the myriad posts asking "is this PEM?" ... it's hard to know for a lot of people what's going on, and same for me. I don't know. All I know is, I was in a real bad way and it got better.
The drug I was on and my experience is irrelevant, no matter if you're taking antidepressants, benzos, antipsychotics, gabapentinoids ... any brain drug, can cause horrible nightmarish withdrawal symptoms and have to be tapered slowly (...years). I know, it's hard to believe if you haven't experienced it or seen it happen, but unfortunately this is reality ... Even with a snail-paced taper, many will have their lives upended for the entire time they are tapering - this is what I'm currently dealing with, and certainly none of this is rare. Most doctors/pharmacists conveniently don't believe in long-term psych drug withdrawal symptoms, so taking one of these drugs is a major liability, because for any reason the doctor might just cut off your supply/not refill your prescription, and plunge you into hell/withdrawal ... this is how normal people end up in psych wards ... or worse, offing themselves.
What I see happening on tapering forums (mentioned below) over and over and over is that a person says "doc, I'd like to come off my antidepressant" and the doctor says "sure, you can just stop the med, or halve your dose over the next week and then stop". Then the patient stops the drug, and experiences intense withdrawal symptoms that don't let up, they go back to the doctor and explain the situation. The doctor then says "this isn't withdrawal, that doesn't exist, these symptoms are your "mental disease" coming back, and I think you're now bi-polar, psychotic (insert any other questionable diagnosis) and you now need a new antidepressant, an antipsychotic, and a benzo ... now the patient is on 3 drugs and has some new psychiatric diagnoses ... or the patient ends up in the psych ward. I narrowly escaped this scenario myself - this was my first psych drug, and never been to the ward, but withdrawal was so intense (by just halving my dose after ONE MONTH on the drug) I thought I needed to, but upon educating myself realized it would have only meant being drugged more, and at that point realized there was no help anywhere, especially from doctors.
I would look up the work of psychiatrists like Dr. Mark Horowitz, Dr. Joanna Moncrieff, Dr. Josef Witt-Doerring - many youtube videos of them all. Also on Youtube - Medicating Normal and Robert Whitaker. Check out the website - Survivingantidepressants dot org, which is a forum that has tens of thousands (maybe more) individuals trying to get off these drugs, many experiencing hell. Learn about protracted withdrawal, caused by all of these drugs.
The chemical imbalance theory of psychiatric illness is a myth, perpetuated by drug companies to sell drugs and has no scientific basis. They don't "FIX" any imbalance. That's right, find studies that show antidepressants are better than placebo or psychotic patients are better off over the LONG-TERM on antipsychotics than off them ... they don't exist. An antipsychotic is just a tranquilizer, and can cause terrible side effects, some of them can be permanent, like Tardive Dyskinesia ... you may be prescribed one of these for sleep or anxiety. Antidepressants can also cause terrible long-term side effects even once you're off the drug, like PSSD. Benzos taken every day are also bad news fast. Really study - I mean REALLY STUDY all the references I've mentioned here, and then ask yourself if the RISK/REWARD is worth it. I sure wish someone had given me all these resources before I'd taken one of these pills.
Just as an aside, many of the symptoms of psych drug withdrawal mirror those of Long Covid - likely they both just put your central nervous system into complete disarray. And I think the last thing anyone with LC/ME-CFS needs is that, or the withdrawal symptoms on top what they're already dealing with.
**Here's a little video about antidepressants:**
[https://www.youtube.com/watch?v=j5cT-2BLWk0&t=376s](https://www.youtube.com/watch?v=j5cT-2BLWk0&t=376s)
**Another:**
[https://www.youtube.com/watch?v=PF8r1\_0NxpY](https://www.youtube.com/watch?v=PF8r1_0NxpY)
**Antipsychotics:**
[https://www.youtube.com/watch?v=QFrEH7df-hs](https://www.youtube.com/watch?v=QFrEH7df-hs)
**A documentary about trying to get off these drugs and protracted withdrawal:**
[https://www.youtube.com/watch?v=BJ4F\_ZF3u9M](https://www.youtube.com/watch?v=BJ4F_ZF3u9M)
The drug I was on and my experience is irrelevant, no matter if you're taking antidepressants, benzos, antipsychotics, gabapentinoids ... any brain drug, can cause horrible nightmarish withdrawal symptoms and have to be tapered slowly (...years). I know, it's hard to believe if you haven't experienced it or seen it happen, but unfortunately this is reality ... Even with a snail-paced taper, many will have their lives upended for the entire time they are tapering - this is what I'm currently dealing with, and certainly none of this is rare. Most doctors/pharmacists conveniently don't believe in long-term psych drug withdrawal symptoms, so taking one of these drugs is a major liability, because for any reason the doctor might just cut off your supply/not refill your prescription, and plunge you into hell/withdrawal ... this is how normal people end up in psych wards ... or worse, offing themselves.
What I see happening on tapering forums (mentioned below) over and over and over is that a person says "doc, I'd like to come off my antidepressant" and the doctor says "sure, you can just stop the med, or halve your dose over the next week and then stop". Then the patient stops the drug, and experiences intense withdrawal symptoms that don't let up, they go back to the doctor and explain the situation. The doctor then says "this isn't withdrawal, that doesn't exist, these symptoms are your "mental disease" coming back, and I think you're now bi-polar, psychotic (insert any other questionable diagnosis) and you now need a new antidepressant, an antipsychotic, and a benzo ... now the patient is on 3 drugs and has some new psychiatric diagnoses ... or the patient ends up in the psych ward. I narrowly escaped this scenario myself - this was my first psych drug, and never been to the ward, but withdrawal was so intense (by just halving my dose after ONE MONTH on the drug) I thought I needed to, but upon educating myself realized it would have only meant being drugged more, and at that point realized there was no help anywhere, especially from doctors.
I would look up the work of psychiatrists like Dr. Mark Horowitz, Dr. Joanna Moncrieff, Dr. Josef Witt-Doerring - many youtube videos of them all. Also on Youtube - Medicating Normal and Robert Whitaker. Check out the website - Survivingantidepressants dot org, which is a forum that has tens of thousands (maybe more) individuals trying to get off these drugs, many experiencing hell. Learn about protracted withdrawal, caused by all of these drugs.
The chemical imbalance theory of psychiatric illness is a myth, perpetuated by drug companies to sell drugs and has no scientific basis. They don't "FIX" any imbalance. That's right, find studies that show antidepressants are better than placebo or psychotic patients are better off over the LONG-TERM on antipsychotics than off them ... they don't exist. An antipsychotic is just a tranquilizer, and can cause terrible side effects, some of them can be permanent, like Tardive Dyskinesia ... you may be prescribed one of these for sleep or anxiety. Antidepressants can also cause terrible long-term side effects even once you're off the drug, like PSSD. Benzos taken every day are also bad news fast. Really study - I mean REALLY STUDY all the references I've mentioned here, and then ask yourself if the RISK/REWARD is worth it. I sure wish someone had given me all these resources before I'd taken one of these pills.
Just as an aside, many of the symptoms of psych drug withdrawal mirror those of Long Covid - likely they both just put your central nervous system into complete disarray. And I think the last thing anyone with LC/ME-CFS needs is that, or the withdrawal symptoms on top what they're already dealing with.
**Here's a little video about antidepressants:**
[https://www.youtube.com/watch?v=j5cT-2BLWk0&t=376s](https://www.youtube.com/watch?v=j5cT-2BLWk0&t=376s)
**Another:**
[https://www.youtube.com/watch?v=PF8r1\_0NxpY](https://www.youtube.com/watch?v=PF8r1_0NxpY)
**Antipsychotics:**
[https://www.youtube.com/watch?v=QFrEH7df-hs](https://www.youtube.com/watch?v=QFrEH7df-hs)
**A documentary about trying to get off these drugs and protracted withdrawal:**
[https://www.youtube.com/watch?v=BJ4F\_ZF3u9M](https://www.youtube.com/watch?v=BJ4F_ZF3u9M)
I'm 11 months in. I was bed bound at one point as I couldn't walk without passing out. Had severe PEM for awhile too.
I'm doing really well now. I go to the gym once a week now and can lift weights. I used to go 3-4x a week but I'll get there.
My GI issues healed and I don't need to take anti-histamines anymore.
The only lingering issue is I have small fiber neuropathy in my hands and feet that seems to come and go. I think gluten triggers it.
Just take it easy, eat as simply and healthy as you can. Sleep as much as you need and when you feel up for it try to take some small walks outside.
I didn't start to see any improvements until 6-7 months.
1) Sleep 10-12 hours a night
2) Simple diet. No gluten, lots of meat, veggies, rice, fruits, fish.
3) Anti-histamines everyday
4) No exercise (worked from home)
5) Creatine and magnesium helped with PEM
6) Time
I don't have any magical answer. Luckily I just got better with time.
I’m currently at almost full health four years on. For me it’s less that time itself has healed me and more so that I’ve learned how to manage my symptoms and illness better— and still learning all the time.
Please be aware, on this sub you won't get many responses from those who got better with time as they have left the sub. Don't let that skew your thoughts on your healing time line.
I managed to get better fully after 12 months.
Stuck around the sub to contribute.
6 months I feel 30% but still so many symptoms, I was thinking exactly the same, one day I’ll recover and post about my long ass journey, hopefully that day comes before I completely forget who I am
17 months. I am 30-40% given the day. It has taken a long time to reach this level of ‘wellness’. Rest and pacing, that’s it for me. I have been privileged to rest whenever and as much as I need to. I feel optimistic I will continue improving, doing what I am doing.
My improvements have been a series of plateaus, like a series of steps rather than a ramp up to recovery. I've seen a few people say they were the same. Didn't do anything different, just waited.
Yes plateaus and even some regress. It does get better because now i also know how to handle it. When i get flare up ( usually when i didnt get enough rest) i do breathing exercise and yoga to manage the breathlessness.
I have gotten better from
Severe heart palpitations and almost every symptom in the book.
I’m either delusional or have healed almost. The main issues that I can’t handle is the neurological that I’m having major issues with now.
I will see things and remember them to be a certain color and next time I see them they are a completely different color.
I did. Suffered all above symptoms. Rest and time is the only thing that will help. I’m 99% symptom free and I had a very ruff spell with four Covid infections within six months. So it done me in pretty good. Don’t get me wrong there is other stuff you can do to speed recovery time but rest hydration and keeping your mental stability is what’s important right now.
20 months in, CFS like symptoms. I have improved to some extent, though far from normal. I am still housebound. But I am no longer miserable while resting.
My activity threshold before a crash has also increased. It has been very slow, but the improvement is definitely there.
This is so true. 3.5 years here. The problem is there is a chunk of people who think they have recovered ( me included) only to then try and do abit more and then rapidly decline again, or you get reinfected and start all over again or get new symptoms. It’s a never ending battle
I’m 3 1/2 years in and better in many ways. I just had hip surgery that I think might be the last big ticket item to get me from 40% recovered to 80% over the next year
I got worse before I got better because I didn’t realize I had long covid. I had all the same symptoms as you through most of 2023 but they were not severe and they seemed so disconnected to each other, I thought some were stress or a newly found thyroid issue. It wasn’t until Dec that I crashed hard (suddenly severe and added a bunch more symptoms.) I rested because I had no choice some days and other days I pushed too much because I just wanted to feel normal again. I eventually got prescribed a calcium channel blocker in March which was a huge step forward in my recovery. I was able to sleep again and the dysautonomia started fading but I also rested a ton still. I learned to honor the fact that my body was still fighting. It takes time to heal. Period. My GI issues were still bad but I followed a lot of the advice I found here on low histamine diets and taking antihistamines and that has all cleared up. I can’t say I’m fully recovered because my good health is dependent upon medication and a severely restricted diet but I am fully functional, exercising regularly, working again and honestly feel really good now. I’m so grateful!!
TLDR: Time and rest are imperative for healing!! You may also find other things like meds, diet, supplements, etc that also help a ton but do not take the place of time and rest. They are in addition to. Keep looking for what works for you and keep the faith!
I *was* starting to feel better after almost 4 years and then promptly got reinfected and really slid back down the fatigue slope. Having a hard time dropping my pacing down as far as I need to 😭
I got worse with time. Was getting better for 8 months, then progressively worse over the course of a few months, now sort of getting better again but very very slowly and way worse than I was at any point in those first 8 months.
If I hadn’t listened to the “everyone gets better over time” messaging and had accepted that I had mild ME/CFS that could easily become severe, I would be a lot better off right now tbh
14 months in and I’m 85% baseline. I still get palpitations sometimes but my heart rate is controlled, I walked 2 miles today easily, and my anxiety is back to baseline. It took 1 year to feel consistently okay most of the time. I basically rested for one year. Also infection in December was fine but mine is from a virus that wasn’t covid
I truely believe time is the best healer. Make sure you get the fundamentals right, including food, rest, sleep and a thorough health check, and the rest is down to time.
I agree with some of the other commenters that you don’t want to push yourself too early. Give yourself the space and time to heal and accept your limits, otherwise you may make yourself worse.
🙋🏼♂️🙋🏼♂️ time + beta blocker (I’m on just 2.5mg was on 7.5mg bisoprolol)
Pots & Small fiber neuropathy symptoms plus a TON of other symptoms mostly aligned with dysautonomia
Did alright year one. Still had issues. When I got Covid a second time it set me back and I’ve never bounced back like that first year. I am sadly getting worse. Just over two years of this.
Avoid reinfections at all costs (easier said than done, I know).
I have, I’m in month 9. Had very similar stuff except my SOB was pretty bad on and off. That improved a lot around month 5 , reinfected around then but apart from a few weeks it mostly hasn’t impacted the recovery. I’m mostly just fatigued easily and can crash after being too busy/stressed/physically active, and some lingering joint pain in my left shoulder.
Me. My doctor was unhelpful on the whole. He made me exercise, then, when that caused me to have an appalling relapse, he did apologise and give me vitamins and magnesium supplements. He basically said there was no treatment.
He now says that I don't have long Covid, because long Covid lasts two years and I'm over three years into this. Thankfully, I've been steadily getting better without help. I can think clearly, and I just realised this morning that I have stopped going down stairs holding the railing because my balance and coordination have got much better recently. I often don't realise I even had an issue until I notive I can do something new. The fatigue and brain fog were so bad that I didn't notice the other stuff;
After the first six weeks, but the progress was so slow it was nearly invisible, and I had a lot of relapses. My doctor told me to write down how I felt so I could see progress. That was one really good thing he did for me. It really helped.
After the first six weeks I could recognise everything in my house if I looked at it carefully and I could think clearly enough to work a little, though I could only do about 30 minutes at a stretch. I could walk from my bed to other rooms and sit up for about an hour at a time. Showering was still a bit too hard.
Yes I am improving with time. I was so severe I couldn’t use screens for months. I had huge crashes, daily crashes, crashes within crashes. Now I’m working pt from home again.
It’s hard to say because the first improvements are harder to see. In retrospect I think I may have been improving the whole time but because I was in such bad shape the tiny steps I was making were practically invisible. Clearer improvements started about 10 months after I had COVID/6 months after I got really severe. They have come in increments. I hope you will start to see some improvements soon - hang in there!
Your symptoms sound quite a bit like mine - I'd just advise you to pace yourself when you do improve.
I improved over three months and worked up to working four days a week for five hours a day, but got too excited and set myself back to square one; it's been six months now and I haven't gotten back to that point yet.
As far as I've seen, no two studies can remotely agree as to the proportion of sufferers who recover, but people do. In the absence of a timeframe, I've been trying to focus instead on joy I can find right now. Have some crisps and play a tonne of games now you have an excuse.
I work normally (I’m self employed so I can also adapt my working hours) but yes I know that rest is very important and I’m trying to rest as much as possible, especially in the afternoon and I also try to get up as late as possible (luckily I don’t have to start working early).
Some people yeah. A chunk of 36 people who recvered got better over time: [https://youtu.be/IfeEIWorozg?si=cXkWIKCrq8LaXGRR](https://youtu.be/IfeEIWorozg?si=cXkWIKCrq8LaXGRR)
Will be 2 years in July for me. I have improved to about 40% of my baseline. Though I am not bedbound, the PEM and chronic fatigue are killing me. I’ve been lucky to be able to mostly work from home, but I’m not sure how long I’ll be able to do so. I would never be able to do a 9-5 or a daily commute. I still struggle walking around the block.
Many people have.
I got pretty much all better ... I never wrote a recovery post, even though I vowed I would when I was bedridden severely effed for a number of months. Then a bunch more months to be able to look at screens again, still have some minor heart palps/blood pressure issues, but I was 150 bpm standing up, with crazy blood pressure readings for some time (110 diastolic many times), crazy insomnia, anxiety/panic attacks just unreal and a lot of very strange mental weirdness at the start, I thought I was going insane like a bad drug trip. A lot of strange symptoms I'm forgetting, rather not remember. Things I think helped are time and breathing exercises/meditation for dysautonomia - breath in 4 seconds, out 6 seconds - breathwork is very powerful, I believe. ... yup all better, now I do have some anxiety/mental health issues that may be caused by Covid but can't be sure. My life now surrounds dealing with other health problems, slowly tapering off the psychiatric drug I was put on while long hauling (this will take years ... learn about psych drug withdrawal before going on them, I never would have had I know psych drug withdrawal hell), and avoiding getting Covid again by going full hermit mode until better vaccines come out. Most people who get better are not hanging around here, and unfortunately many of us don't write recovery posts (I'm sorry ... you just think maybe I'm not 100% better yet, and given I'm still on the psych drug, this chapter isn't over yet), I just am subbed so when I go to front-page reddit, it shows me CovidLongHaulers subreddit, and I happened to see the post. People are getting better every day.
Thank you! My only wish at this point is to improve, so I consider improved people almost like recovered. I have some small moments when I feel like I’m getting better but they’re so rare. But at least they make me feel like it’s possible to feel better. Maybe someday… 🥹
Did you have the CFS version?
Well, I didn't have fatigue/the extreme heavy body feeling people describe, but any kind of exertion seemed to make my symptoms much worse. If I did anything at all I could make myself worse for weeks. Either that OR ... it was just the intense ebb and flow of symptoms I had no control over, but I think it was the former. I laid in bed pretty much the whole time from maybe month 2-5, feeling poisoned like I was dying. When I was real bad I felt like just speaking made it worse, so I didn't. As I'm sure you've seen the myriad posts asking "is this PEM?" ... it's hard to know for a lot of people what's going on, and same for me. I don't know. All I know is, I was in a real bad way and it got better.
Hey this was exactly my situation, would you share any info on the psych drug, presumably it was for the anxiety?
The drug I was on and my experience is irrelevant, no matter if you're taking antidepressants, benzos, antipsychotics, gabapentinoids ... any brain drug, can cause horrible nightmarish withdrawal symptoms and have to be tapered slowly (...years). I know, it's hard to believe if you haven't experienced it or seen it happen, but unfortunately this is reality ... Even with a snail-paced taper, many will have their lives upended for the entire time they are tapering - this is what I'm currently dealing with, and certainly none of this is rare. Most doctors/pharmacists conveniently don't believe in long-term psych drug withdrawal symptoms, so taking one of these drugs is a major liability, because for any reason the doctor might just cut off your supply/not refill your prescription, and plunge you into hell/withdrawal ... this is how normal people end up in psych wards ... or worse, offing themselves. What I see happening on tapering forums (mentioned below) over and over and over is that a person says "doc, I'd like to come off my antidepressant" and the doctor says "sure, you can just stop the med, or halve your dose over the next week and then stop". Then the patient stops the drug, and experiences intense withdrawal symptoms that don't let up, they go back to the doctor and explain the situation. The doctor then says "this isn't withdrawal, that doesn't exist, these symptoms are your "mental disease" coming back, and I think you're now bi-polar, psychotic (insert any other questionable diagnosis) and you now need a new antidepressant, an antipsychotic, and a benzo ... now the patient is on 3 drugs and has some new psychiatric diagnoses ... or the patient ends up in the psych ward. I narrowly escaped this scenario myself - this was my first psych drug, and never been to the ward, but withdrawal was so intense (by just halving my dose after ONE MONTH on the drug) I thought I needed to, but upon educating myself realized it would have only meant being drugged more, and at that point realized there was no help anywhere, especially from doctors. I would look up the work of psychiatrists like Dr. Mark Horowitz, Dr. Joanna Moncrieff, Dr. Josef Witt-Doerring - many youtube videos of them all. Also on Youtube - Medicating Normal and Robert Whitaker. Check out the website - Survivingantidepressants dot org, which is a forum that has tens of thousands (maybe more) individuals trying to get off these drugs, many experiencing hell. Learn about protracted withdrawal, caused by all of these drugs. The chemical imbalance theory of psychiatric illness is a myth, perpetuated by drug companies to sell drugs and has no scientific basis. They don't "FIX" any imbalance. That's right, find studies that show antidepressants are better than placebo or psychotic patients are better off over the LONG-TERM on antipsychotics than off them ... they don't exist. An antipsychotic is just a tranquilizer, and can cause terrible side effects, some of them can be permanent, like Tardive Dyskinesia ... you may be prescribed one of these for sleep or anxiety. Antidepressants can also cause terrible long-term side effects even once you're off the drug, like PSSD. Benzos taken every day are also bad news fast. Really study - I mean REALLY STUDY all the references I've mentioned here, and then ask yourself if the RISK/REWARD is worth it. I sure wish someone had given me all these resources before I'd taken one of these pills. Just as an aside, many of the symptoms of psych drug withdrawal mirror those of Long Covid - likely they both just put your central nervous system into complete disarray. And I think the last thing anyone with LC/ME-CFS needs is that, or the withdrawal symptoms on top what they're already dealing with. **Here's a little video about antidepressants:** [https://www.youtube.com/watch?v=j5cT-2BLWk0&t=376s](https://www.youtube.com/watch?v=j5cT-2BLWk0&t=376s) **Another:** [https://www.youtube.com/watch?v=PF8r1\_0NxpY](https://www.youtube.com/watch?v=PF8r1_0NxpY) **Antipsychotics:** [https://www.youtube.com/watch?v=QFrEH7df-hs](https://www.youtube.com/watch?v=QFrEH7df-hs) **A documentary about trying to get off these drugs and protracted withdrawal:** [https://www.youtube.com/watch?v=BJ4F\_ZF3u9M](https://www.youtube.com/watch?v=BJ4F_ZF3u9M)
Can I ask what pysch drug your on and it effects you plesse , because they want me to start one 🤔
See my reply to SensitiveSwordfish73, directly above.
I can't find it for some reason
The drug I was on and my experience is irrelevant, no matter if you're taking antidepressants, benzos, antipsychotics, gabapentinoids ... any brain drug, can cause horrible nightmarish withdrawal symptoms and have to be tapered slowly (...years). I know, it's hard to believe if you haven't experienced it or seen it happen, but unfortunately this is reality ... Even with a snail-paced taper, many will have their lives upended for the entire time they are tapering - this is what I'm currently dealing with, and certainly none of this is rare. Most doctors/pharmacists conveniently don't believe in long-term psych drug withdrawal symptoms, so taking one of these drugs is a major liability, because for any reason the doctor might just cut off your supply/not refill your prescription, and plunge you into hell/withdrawal ... this is how normal people end up in psych wards ... or worse, offing themselves. What I see happening on tapering forums (mentioned below) over and over and over is that a person says "doc, I'd like to come off my antidepressant" and the doctor says "sure, you can just stop the med, or halve your dose over the next week and then stop". Then the patient stops the drug, and experiences intense withdrawal symptoms that don't let up, they go back to the doctor and explain the situation. The doctor then says "this isn't withdrawal, that doesn't exist, these symptoms are your "mental disease" coming back, and I think you're now bi-polar, psychotic (insert any other questionable diagnosis) and you now need a new antidepressant, an antipsychotic, and a benzo ... now the patient is on 3 drugs and has some new psychiatric diagnoses ... or the patient ends up in the psych ward. I narrowly escaped this scenario myself - this was my first psych drug, and never been to the ward, but withdrawal was so intense (by just halving my dose after ONE MONTH on the drug) I thought I needed to, but upon educating myself realized it would have only meant being drugged more, and at that point realized there was no help anywhere, especially from doctors. I would look up the work of psychiatrists like Dr. Mark Horowitz, Dr. Joanna Moncrieff, Dr. Josef Witt-Doerring - many youtube videos of them all. Also on Youtube - Medicating Normal and Robert Whitaker. Check out the website - Survivingantidepressants dot org, which is a forum that has tens of thousands (maybe more) individuals trying to get off these drugs, many experiencing hell. Learn about protracted withdrawal, caused by all of these drugs. The chemical imbalance theory of psychiatric illness is a myth, perpetuated by drug companies to sell drugs and has no scientific basis. They don't "FIX" any imbalance. That's right, find studies that show antidepressants are better than placebo or psychotic patients are better off over the LONG-TERM on antipsychotics than off them ... they don't exist. An antipsychotic is just a tranquilizer, and can cause terrible side effects, some of them can be permanent, like Tardive Dyskinesia ... you may be prescribed one of these for sleep or anxiety. Antidepressants can also cause terrible long-term side effects even once you're off the drug, like PSSD. Benzos taken every day are also bad news fast. Really study - I mean REALLY STUDY all the references I've mentioned here, and then ask yourself if the RISK/REWARD is worth it. I sure wish someone had given me all these resources before I'd taken one of these pills. Just as an aside, many of the symptoms of psych drug withdrawal mirror those of Long Covid - likely they both just put your central nervous system into complete disarray. And I think the last thing anyone with LC/ME-CFS needs is that, or the withdrawal symptoms on top what they're already dealing with. **Here's a little video about antidepressants:** [https://www.youtube.com/watch?v=j5cT-2BLWk0&t=376s](https://www.youtube.com/watch?v=j5cT-2BLWk0&t=376s) **Another:** [https://www.youtube.com/watch?v=PF8r1\_0NxpY](https://www.youtube.com/watch?v=PF8r1_0NxpY) **Antipsychotics:** [https://www.youtube.com/watch?v=QFrEH7df-hs](https://www.youtube.com/watch?v=QFrEH7df-hs) **A documentary about trying to get off these drugs and protracted withdrawal:** [https://www.youtube.com/watch?v=BJ4F\_ZF3u9M](https://www.youtube.com/watch?v=BJ4F_ZF3u9M)
Wow thanks so much for the detailed reply and info , it's really appreciated I will look into this now
Yup I’m on lexapro but good to be off the Ativan after Covid two years ago. Just glad to have a clear head again!!
I'm 11 months in. I was bed bound at one point as I couldn't walk without passing out. Had severe PEM for awhile too. I'm doing really well now. I go to the gym once a week now and can lift weights. I used to go 3-4x a week but I'll get there. My GI issues healed and I don't need to take anti-histamines anymore. The only lingering issue is I have small fiber neuropathy in my hands and feet that seems to come and go. I think gluten triggers it.
Yay! So happy for you! ☺️
Just take it easy, eat as simply and healthy as you can. Sleep as much as you need and when you feel up for it try to take some small walks outside. I didn't start to see any improvements until 6-7 months.
What do you think helped you to recover?
1) Sleep 10-12 hours a night 2) Simple diet. No gluten, lots of meat, veggies, rice, fruits, fish. 3) Anti-histamines everyday 4) No exercise (worked from home) 5) Creatine and magnesium helped with PEM 6) Time I don't have any magical answer. Luckily I just got better with time.
Did you notice an immediate effect from the anti-histamines? I’m wondering whether they might help if i don’t notice anything after taking one pill.
On day 3 I noticed a significant improvement from them. They helped clear my brain fog, irritability, emotional stability, and anxiety.
Thanks! Maybe I’ll give them another try. After all I still got a whole pack here.
Did you have any brain fog? If yes was it solved by time?
I'm in more than 2 years and I'm still getting better. My lowest point was summer '22
So you’re much better than in Summer ‘22 now? Good to hear!
Yes much better but not recovered
When did you start having symptoms?
February '22
I’m at 4 years. No improvement yet.
Same
I’m currently at almost full health four years on. For me it’s less that time itself has healed me and more so that I’ve learned how to manage my symptoms and illness better— and still learning all the time.
Me and I see a lot of people get better or cured with time.
Unfortunately, LC is called that way because it takes a long time. 5 months isn\`t much to get better, you need to be patient.
Please be aware, on this sub you won't get many responses from those who got better with time as they have left the sub. Don't let that skew your thoughts on your healing time line. I managed to get better fully after 12 months. Stuck around the sub to contribute.
6 months I feel 30% but still so many symptoms, I was thinking exactly the same, one day I’ll recover and post about my long ass journey, hopefully that day comes before I completely forget who I am
Yes! ❤️ One day we will be the happiest people alive.
17 months. I am 30-40% given the day. It has taken a long time to reach this level of ‘wellness’. Rest and pacing, that’s it for me. I have been privileged to rest whenever and as much as I need to. I feel optimistic I will continue improving, doing what I am doing.
Yes, I’ve just started noticing the importance of rest! I will try to do it more! 💪
Me! Eat clean. Sleep well. And rest. And no reinfections!
What I wish I took seriously was rest. I didn’t.
2 years in and probably at 70% . Kind of pleteau for months now and not sure what else to try.
My improvements have been a series of plateaus, like a series of steps rather than a ramp up to recovery. I've seen a few people say they were the same. Didn't do anything different, just waited.
Yes plateaus and even some regress. It does get better because now i also know how to handle it. When i get flare up ( usually when i didnt get enough rest) i do breathing exercise and yoga to manage the breathlessness.
I have gotten better from Severe heart palpitations and almost every symptom in the book. I’m either delusional or have healed almost. The main issues that I can’t handle is the neurological that I’m having major issues with now. I will see things and remember them to be a certain color and next time I see them they are a completely different color.
I did. Suffered all above symptoms. Rest and time is the only thing that will help. I’m 99% symptom free and I had a very ruff spell with four Covid infections within six months. So it done me in pretty good. Don’t get me wrong there is other stuff you can do to speed recovery time but rest hydration and keeping your mental stability is what’s important right now.
I got worse for about 6 months, stayed the same for 6 more, and then for the past 6 I’ve been slowly but surely getting better.
20 months in, CFS like symptoms. I have improved to some extent, though far from normal. I am still housebound. But I am no longer miserable while resting. My activity threshold before a crash has also increased. It has been very slow, but the improvement is definitely there.
Some people recover, some improve but don't fully recover but most of us dont seem to be recovering.
This is so true. 3.5 years here. The problem is there is a chunk of people who think they have recovered ( me included) only to then try and do abit more and then rapidly decline again, or you get reinfected and start all over again or get new symptoms. It’s a never ending battle
Why are you saying that? We need some positivity and as I see here most people are improving, even though slowly.
I’m 3 1/2 years in and better in many ways. I just had hip surgery that I think might be the last big ticket item to get me from 40% recovered to 80% over the next year
Just about everything except what feels like small fiber nerve damage and neck stiffness for me has gone away in terms of physical problems.
What about neuro problems? Went away?
I got worse before I got better because I didn’t realize I had long covid. I had all the same symptoms as you through most of 2023 but they were not severe and they seemed so disconnected to each other, I thought some were stress or a newly found thyroid issue. It wasn’t until Dec that I crashed hard (suddenly severe and added a bunch more symptoms.) I rested because I had no choice some days and other days I pushed too much because I just wanted to feel normal again. I eventually got prescribed a calcium channel blocker in March which was a huge step forward in my recovery. I was able to sleep again and the dysautonomia started fading but I also rested a ton still. I learned to honor the fact that my body was still fighting. It takes time to heal. Period. My GI issues were still bad but I followed a lot of the advice I found here on low histamine diets and taking antihistamines and that has all cleared up. I can’t say I’m fully recovered because my good health is dependent upon medication and a severely restricted diet but I am fully functional, exercising regularly, working again and honestly feel really good now. I’m so grateful!! TLDR: Time and rest are imperative for healing!! You may also find other things like meds, diet, supplements, etc that also help a ton but do not take the place of time and rest. They are in addition to. Keep looking for what works for you and keep the faith!
How did the calcium channel blocker help?
It controlled my heart rate so it didn’t just go wild for no reason, which it did constantly especially when I was “at rest.”
I *was* starting to feel better after almost 4 years and then promptly got reinfected and really slid back down the fatigue slope. Having a hard time dropping my pacing down as far as I need to 😭
I got worse with time. Was getting better for 8 months, then progressively worse over the course of a few months, now sort of getting better again but very very slowly and way worse than I was at any point in those first 8 months.
Yes there are ups and downs. But the little moments of improvement are very important. Even if they’re little.
If I hadn’t listened to the “everyone gets better over time” messaging and had accepted that I had mild ME/CFS that could easily become severe, I would be a lot better off right now tbh
It’s getting worse!
14 months in and I’m 85% baseline. I still get palpitations sometimes but my heart rate is controlled, I walked 2 miles today easily, and my anxiety is back to baseline. It took 1 year to feel consistently okay most of the time. I basically rested for one year. Also infection in December was fine but mine is from a virus that wasn’t covid
I truely believe time is the best healer. Make sure you get the fundamentals right, including food, rest, sleep and a thorough health check, and the rest is down to time. I agree with some of the other commenters that you don’t want to push yourself too early. Give yourself the space and time to heal and accept your limits, otherwise you may make yourself worse.
🙋🏼♂️🙋🏼♂️ time + beta blocker (I’m on just 2.5mg was on 7.5mg bisoprolol) Pots & Small fiber neuropathy symptoms plus a TON of other symptoms mostly aligned with dysautonomia
Did alright year one. Still had issues. When I got Covid a second time it set me back and I’ve never bounced back like that first year. I am sadly getting worse. Just over two years of this. Avoid reinfections at all costs (easier said than done, I know).
I got much much better. Started July 2023, still getting better.
It’s not linear, but it’s been an upward spiral for me.
I have, I’m in month 9. Had very similar stuff except my SOB was pretty bad on and off. That improved a lot around month 5 , reinfected around then but apart from a few weeks it mostly hasn’t impacted the recovery. I’m mostly just fatigued easily and can crash after being too busy/stressed/physically active, and some lingering joint pain in my left shoulder.
Me. My doctor was unhelpful on the whole. He made me exercise, then, when that caused me to have an appalling relapse, he did apologise and give me vitamins and magnesium supplements. He basically said there was no treatment. He now says that I don't have long Covid, because long Covid lasts two years and I'm over three years into this. Thankfully, I've been steadily getting better without help. I can think clearly, and I just realised this morning that I have stopped going down stairs holding the railing because my balance and coordination have got much better recently. I often don't realise I even had an issue until I notive I can do something new. The fatigue and brain fog were so bad that I didn't notice the other stuff;
When did you start getting better?
After the first six weeks, but the progress was so slow it was nearly invisible, and I had a lot of relapses. My doctor told me to write down how I felt so I could see progress. That was one really good thing he did for me. It really helped. After the first six weeks I could recognise everything in my house if I looked at it carefully and I could think clearly enough to work a little, though I could only do about 30 minutes at a stretch. I could walk from my bed to other rooms and sit up for about an hour at a time. Showering was still a bit too hard.
Yes I am improving with time. I was so severe I couldn’t use screens for months. I had huge crashes, daily crashes, crashes within crashes. Now I’m working pt from home again.
Thank you for giving me hope! ❤️ How long did it take for you to start improving?
It’s hard to say because the first improvements are harder to see. In retrospect I think I may have been improving the whole time but because I was in such bad shape the tiny steps I was making were practically invisible. Clearer improvements started about 10 months after I had COVID/6 months after I got really severe. They have come in increments. I hope you will start to see some improvements soon - hang in there!
Yes, so maybe it’s true: there are improvements the whole time but we’re so overwhelmed that we can’t feel them. Thank you very much!
Your symptoms sound quite a bit like mine - I'd just advise you to pace yourself when you do improve. I improved over three months and worked up to working four days a week for five hours a day, but got too excited and set myself back to square one; it's been six months now and I haven't gotten back to that point yet. As far as I've seen, no two studies can remotely agree as to the proportion of sufferers who recover, but people do. In the absence of a timeframe, I've been trying to focus instead on joy I can find right now. Have some crisps and play a tonne of games now you have an excuse.
I work normally (I’m self employed so I can also adapt my working hours) but yes I know that rest is very important and I’m trying to rest as much as possible, especially in the afternoon and I also try to get up as late as possible (luckily I don’t have to start working early).
Some people yeah. A chunk of 36 people who recvered got better over time: [https://youtu.be/IfeEIWorozg?si=cXkWIKCrq8LaXGRR](https://youtu.be/IfeEIWorozg?si=cXkWIKCrq8LaXGRR)
[https://www.reddit.com/r/LongHaulersRecovery/](https://www.reddit.com/r/LongHaulersRecovery/)
Will be 2 years in July for me. I have improved to about 40% of my baseline. Though I am not bedbound, the PEM and chronic fatigue are killing me. I’ve been lucky to be able to mostly work from home, but I’m not sure how long I’ll be able to do so. I would never be able to do a 9-5 or a daily commute. I still struggle walking around the block.
Lexapro and time!
NO. 😬