Currently 5-6 months in myself and everything has only gotten progressively worse from the initial infection (I believe I have the me/cfs subtype). Radical rest is the only thing to help (slightly)
I’m still hopeful of a full recovery- though it’s going to take a long time!
I went from mild to severe and was curious about others’ experience in terms of timeline
Hi everyone. I’m 29 and honestly pretty scared about what has been happening to me over the last 3.5 months. I’m hoping to hear from people who have had a similar onset/course and get some advice about where I go from here.
For background, I’ve had MCAS and POTS since around May 2025 (I also have suspected EDS), triggered/worsened by multiple things, including mold exposure, which made things pretty severe for a while. I was slowly getting better — working on my gut health, expanding my diet, and gradually increasing my activity — until I got sick with some sort of viral illness in **mid-May 2026, about 3.5 months ago**.
The initial illness involved a sore throat and lethargy. I specifically remember thinking that the lethargy was taking much longer than usual to go away. From that point onward, this is basically what happened:
* **My current medication/supplement regimen is already pretty extensive.** I’m on H1 antihistamines (Allegra/Zyrtec), an H2 blocker (Pepcid), ketotifen, oral and nasal cromolyn, NeuroProtek, liposomal vitamin C, vitamin D3/K2, creatine, algae oil, magnesium, and hydroxyzine as needed. I’m also currently tapering off lorazepam/Ativan and am down to **0.125 mg**. Within literally the last week, I’ve also started gamma globulin shots (planning 6 total), vitamin IVs with high-dose vitamin C, Xolair, and acupuncture. I realize that is a LOT of changes at once.
* **After the viral illness, one of the first things I noticed was that my period became delayed**, which was unusual because my periods are hardly ever delayed. Then came insomnia and severe anxiety/panic attacks, especially around ovulation and my period. I also started having random adrenaline dumps.
* **Neurological/cognitive symptoms also started or worsened:** blurrier vision, head pressure, memory problems, difficulty recalling words, and significant cognitive impairment. Some days I could hardly form sentences.
* I got my hands on **hydroxyzine and a beta blocker**, which helped, but unfortunately the beta blocker lowered my blood pressure/heart rate too much and caused a flare, so I had to stop taking it.
* On **July 7**, I had my first-ever anaphylactic reaction to something and was given prednisone (20 mg) two days in a row. The steroid made me feel absolutely insane. Whatever anxiety/panic/hyperarousal I already had became about 10x worse. Eventually, on **July 17**, I was prescribed lorazepam 0.5 mg because my nervous system had gone into what felt like extreme hyperarousal and sensitivity.
* **Lorazepam helped immensely**, but I knew I needed to get off it. I started tapering around August 15, initially going from 0.5 mg to 0.25 mg, and I’m now at 0.125 mg. The taper caused horrific withdrawal and flares of both my MCAS and dysautonomia and whatever post viral situation is going on. Some days I genuinely felt like I was dying, and I ended up in the ER multiple times. I’m now in the final stretch of the taper and feel way more stable in terms of withdrawal but still experience neurological symptoms and some pain.
* **My MCAS and POTS have both been noticeably worse since the viral illness**, but for months I kept assuming they would eventually settle back down.
* **The biggest mistake I made was staying extremely active throughout all of this.** I repeatedly pushed through what I now think may have been PEM. I kept getting episodes where I felt like I had the flu, but whenever I got tested for an actual infection, the tests came back negative. I would recover somewhat, become active again, crash again, and keep pushing. You probably see where this is headed.
* It’s now **September 3**, and I repeatedly get this horrible “flu” feeling: swollen/painful neck lymph nodes, a very slight sore-throat feeling, feeling extremely inflamed, profound lethargy, a horrible “poisoned” feeling, body aches, head pressure, cognitive impairment, memory problems, and sensitivity to light and noise. I had absolutely no idea what was happening until I started researching post-viral illness, long COVID and ME/CFS.
* **The flu-like episodes have become more frequent.** At first, I think they were happening roughly every couple of weeks. Then they started happening weekly. Now it can be every few days. In fact, even though I’m currently giving my body as much rest as possible, I’m sometimes waking up already feeling ill. The flu-like feeling can get so unbelievably intense that I literally feel like I’m dying.
* Over the last week, I’ve finally gone into **extreme rest/pacing mode**. Looking back, I didn’t just repeatedly deplete myself physically and push through my limits for several months — I also went through long bouts of severe anxiety, panic attacks and hyperarousal, which felt like they pushed my nervous system even further.
* I’ve **cancelled my gym memberships and stopped exercising**, and I’m saying no to friends/invitations because most of the time I either have no energy or I’m dealing with MCAS symptoms or another crash. What makes this confusing is that I still get windows where I suddenly have energy and could go out and do a lot if I wanted to/pushed myself to. But I now know that feeling better temporarily does NOT necessarily mean I should use all of that energy.
* At this point, I’m spending **almost all of my time at home and a lot of it in bed**. I’m located in New York and have an appointment with **Benjamin Natelson in December**, but that still feels very far away when I feel this sick right now.
* I feel like **ibuprofen/paracetamol or similar medications might help the flu-like/inflammatory feeling**, but I have GI issues and can potentially get serious complications from some of these medications, which really sucks. I keep wondering whether a lot of this flu-like sensation is being driven by cytokines/inflammatory mediators/prostaglandins, especially given my MCAS history. My MCAS doctor mentioned celecoxib being tolerated better and that we could trial it.
What scares me most is that I’m already **3.5 months out from the viral illness**, and I spent most of those months doing basically the opposite of pacing. I repeatedly pushed through crashes because I didn’t understand what was happening. Now I’m terrified that I’ve pushed my system too far and that I’m already in the ME/CFS category.
I also want to mention something that may or may not be relevant: **even before all of this, I always felt somewhat “chronic fatigue-y” growing up.** I always seemed to have a much smaller energy envelope than the people around me. I could function and live my life, obviously, but I always wondered why other people seemed to have so much more energy than I did. That history makes what is happening now even scarier.
I know nobody here can diagnose me, but I would really appreciate hearing from people who recognize this pattern.
**My main questions are:**
* Does this story/onset sound similar to anyone else's ME/CFS or post-viral illness?
* Does the repeated flu-like/“poisoned” feeling with swollen lymph nodes, mild sore throat, body aches, cognitive problems, sensory sensitivity and extreme lethargy sound like PEM to you?
* Did anyone else repeatedly push through PEM for the first few months because they had no idea what was happening, and then manage to stabilize or improve once they finally started pacing?
* At only 3.5 months post-viral illness, is there still a realistic possibility that this is a post-viral syndrome that could substantially improve rather than established lifelong ME/CFS?
* Where would you go from here besides aggressive pacing/resting and managing the MCAS/POTS?
* Would you ask a doctor about **low-dose naltrexone (LDN)** at this stage?
* What about **glutathione**, or any other supplements/medications/interventions that genuinely helped you?
* For those who developed ME/CFS after a virus, did you ever have windows where you felt relatively energetic/normal despite having horrible crashes at other times?
* And for anyone who also has **MCAS, POTS/dysautonomia and/or EDS**, did getting those conditions better controlled improve your PEM or overall energy envelope?
I’m terrified that this is the beginning of what the rest of my life is going to look like. I’m trying not to catastrophize and tell myself that I’m only 3.5 months out and that I’ve finally recognized what may be happening and stopped pushing, but the fact that the flu-like crashes have seemingly become **more frequent rather than less frequent** really scares me.
Any experiences, advice, or things you wish you had known during the first few months would be incredibly appreciated. Please also excuse me for the obvious chatgpt written content, I can hardly properly type coherent sentences.
Hi everyone. I’m 29 and honestly pretty scared about what has been happening to me over the last 3.5 months. I’m hoping to hear from people who have had a similar onset/course and get some advice about where I go from here.
For background, I’ve had MCAS and POTS since around May 2025 (I also have suspected EDS), triggered/worsened by multiple things, including mold exposure, which made things pretty severe for a while. I was slowly getting better — working on my gut health, expanding my diet, and gradually increasing my activity — until I got sick with some sort of viral illness in **mid-May 2026, about 3.5 months ago**.
The initial illness involved a sore throat and lethargy. I specifically remember thinking that the lethargy was taking much longer than usual to go away. From that point onward, this is basically what happened:
* **My current medication/supplement regimen is already pretty extensive.** I’m on H1 antihistamines (Allegra/Zyrtec), an H2 blocker (Pepcid), ketotifen, oral and nasal cromolyn, NeuroProtek, liposomal vitamin C, vitamin D3/K2, creatine, algae oil, magnesium, and hydroxyzine as needed. I’m also currently tapering off lorazepam/Ativan and am down to **0.125 mg**. Within literally the last week, I’ve also started gamma globulin shots (planning 6 total), vitamin IVs with high-dose vitamin C, Xolair, and acupuncture. I realize that is a LOT of changes at once.
* **After the viral illness, one of the first things I noticed was that my period became delayed**, which was unusual because my periods are hardly ever delayed. Then came insomnia and severe anxiety/panic attacks, especially around ovulation and my period. I also started having random adrenaline dumps.
* **Neurological/cognitive symptoms also started or worsened:** blurrier vision, head pressure, memory problems, difficulty recalling words, and significant cognitive impairment. Some days I could hardly form sentences.
* I got my hands on **hydroxyzine and a beta blocker**, which helped, but unfortunately the beta blocker lowered my blood pressure/heart rate too much and caused a flare, so I had to stop taking it.
* On **July 7**, I had my first-ever anaphylactic reaction to something and was given prednisone (20 mg) two days in a row. The steroid made me feel absolutely insane. Whatever anxiety/panic/hyperarousal I already had became about 10x worse. Eventually, on **July 17**, I was prescribed lorazepam 0.5 mg because my nervous system had gone into what felt like extreme hyperarousal and sensitivity.
* **Lorazepam helped immensely**, but I knew I needed to get off it. I started tapering around August 15, initially going from 0.5 mg to 0.25 mg, and I’m now at 0.125 mg. The taper caused horrific withdrawal and flares of both my MCAS and dysautonomia and whatever post viral situation is going on. Some days I genuinely felt like I was dying, and I ended up in the ER multiple times. I’m now in the final stretch of the taper and feel way more stable in terms of withdrawal but still experience neurological symptoms and some pain.
* **My MCAS and POTS have both been noticeably worse since the viral illness**, but for months I kept assuming they would eventually settle back down.
* **The biggest mistake I made was staying extremely active throughout all of this.** I repeatedly pushed through what I now think may have been PEM. I kept getting episodes where I felt like I had the flu, but whenever I got tested for an actual infection, the tests came back negative. I would recover somewhat, become active again, crash again, and keep pushing. You probably see where this is headed.
* It’s now **September 3**, and I repeatedly get this horrible “flu” feeling: swollen/painful neck lymph nodes, a very slight sore-throat feeling, feeling extremely inflamed, profound lethargy, a horrible “poisoned” feeling, body aches, head pressure, cognitive impairment, memory problems, and sensitivity to light and noise. I had absolutely no idea what was happening until I started researching post-viral illness, long COVID and ME/CFS.
* **The flu-like episodes have become more frequent.** At first, I think they were happening roughly every couple of weeks. Then they started happening weekly. Now it can be every few days. In fact, even though I’m currently giving my body as much rest as possible, I’m sometimes waking up already feeling ill. The flu-like feeling can get so unbelievably intense that I literally feel like I’m dying.
* Over the last week, I’ve finally gone into **extreme rest/pacing mode**. Looking back, I didn’t just repeatedly deplete myself physically and push through my limits for several months — I also went through long bouts of severe anxiety, panic attacks and hyperarousal, which felt like they pushed my nervous system even further.
* I’ve **cancelled my gym memberships and stopped exercising**, and I’m saying no to friends/invitations because most of the time I either have no energy or I’m dealing with MCAS symptoms or another crash. What makes this confusing is that I still get windows where I suddenly have energy and could go out and do a lot if I wanted to/pushed myself to. But I now know that feeling better temporarily does NOT necessarily mean I should use all of that energy.
* At this point, I’m spending **almost all of my time at home and a lot of it in bed**. I’m located in New York and have an appointment with **Benjamin Natelson in December**, but that still feels very far away when I feel this sick right now.
* I feel like **ibuprofen/paracetamol or similar medications might help the flu-like/inflammatory feeling**, but I have GI issues and can potentially get serious complications from some of these medications, which really sucks. I keep wondering whether a lot of this flu-like sensation is being driven by cytokines/inflammatory mediators/prostaglandins, especially given my MCAS history. My MCAS doctor mentioned celecoxib being tolerated better and that we could trial it.
What scares me most is that I’m already **3.5 months out from the viral illness**, and I spent most of those months doing basically the opposite of pacing. I repeatedly pushed through crashes because I didn’t understand what was happening. Now I’m terrified that I’ve pushed my system too far and that I’m already in the ME/CFS category.
I also want to mention something that may or may not be relevant: **even before all of this, I always felt somewhat “chronic fatigue-y” growing up.** I always seemed to have a much smaller energy envelope than the people around me. I could function and live my life, obviously, but I always wondered why other people seemed to have so much more energy than I did. That history makes what is happening now even scarier.
I know nobody here can diagnose me, but I would really appreciate hearing from people who recognize this pattern.
**My main questions are:**
* Does this story/onset sound similar to anyone else's ME/CFS or post-viral illness?
* Does the repeated flu-like/“poisoned” feeling with swollen lymph nodes, mild sore throat, body aches, cognitive problems, sensory sensitivity and extreme lethargy sound like PEM to you?
* Did anyone else repeatedly push through PEM for the first few months because they had no idea what was happening, and then manage to stabilize or improve once they finally started pacing?
* At only 3.5 months post-viral illness, is there still a realistic possibility that this is a post-viral syndrome that could substantially improve rather than established lifelong ME/CFS?
* Where would you go from here besides aggressive pacing/resting and managing the MCAS/POTS?
* Would you ask a doctor about **low-dose naltrexone (LDN)** at this stage?
* What about **glutathione**, or any other supplements/medications/interventions that genuinely helped you?
* For those who developed ME/CFS after a virus, did you ever have windows where you felt relatively energetic/normal despite having horrible crashes at other times?
* And for anyone who also has **MCAS, POTS/dysautonomia and/or EDS**, did getting those conditions better controlled improve your PEM or overall energy envelope?
I’m terrified that this is the beginning of what the rest of my life is going to look like. I’m trying not to catastrophize and tell myself that I’m only 3.5 months out and that I’ve finally recognized what may be happening and stopped pushing, but the fact that the flu-like crashes have seemingly become **more frequent rather than less frequent** really scares me.
Any experiences, advice, or things you wish you had known during the first few months would be incredibly appreciated. Please also excuse me for the obvious chatgpt written content, I can hardly properly type coherent sentences.
Hi everyone. I’m 29/F, currently living in NY, and honestly pretty scared about what has been happening to me over the last 3.5 months. I’m hoping to hear from people who have had a similar onset/course and get some advice about where I go from here.
For background, I’ve had MCAS and POTS since around May 2025 (I also have suspected EDS), triggered/worsened by multiple things, including mold exposure, which made things pretty severe for a while. I was slowly getting better — working on my gut health, expanding my diet, and gradually increasing my activity — until I got sick with some sort of viral illness in **mid-May 2026, about 3.5 months ago**.
The initial illness involved a sore throat and lethargy. I specifically remember thinking that the lethargy was taking much longer than usual to go away. From that point onward, this is basically what happened:
* **My current medication/supplement regimen is already pretty extensive.** I’m on H1 antihistamines (Allegra/Zyrtec), an H2 blocker (Pepcid), ketotifen, oral and nasal cromolyn, NeuroProtek, liposomal vitamin C, vitamin D3/K2, creatine, algae oil, magnesium, and hydroxyzine as needed. I’m also currently tapering off lorazepam/Ativan and am down to **0.125 mg**. Within literally the last week, I’ve also started gamma globulin shots (planning 6 total), vitamin IVs with high-dose vitamin C, Xolair, and acupuncture. I realize that is a LOT of changes at once.
* **After the viral illness, one of the first things I noticed was that my period became delayed**, which was unusual because my periods are hardly ever delayed. Then came insomnia and severe anxiety/panic attacks for the first time in my life, especially around ovulation and my period. I also started having random adrenaline dumps.
* **Neurological/cognitive symptoms also started or worsened:** blurrier vision, head pressure, memory problems, difficulty recalling words, and significant cognitive impairment. Some days I could hardly form sentences.
* I got my hands on **hydroxyzine and a beta blocker**, which helped, but unfortunately the beta blocker lowered my blood pressure/heart rate too much and caused a flare, so I had to stop taking it.
* On **July 7**, I had my first-ever anaphylactic reaction to something and was given prednisone (20 mg) two days in a row. The steroid made me feel absolutely insane. Whatever anxiety/panic/hyperarousal I already had became about 10x worse. Eventually, on **July 17**, I was prescribed benzos/lorazepam 0.5 mg because my nervous system had gone into what felt like extreme hyperarousal and sensitivity.
* **Lorazepam helped immensely**, but I knew I needed to get off it. I started tapering around August 15, initially going from 0.5 mg to 0.25 mg, and I’m now at 0.125 mg. The taper caused horrific benzo withdrawals and flares of both my MCAS and dysautonomia and whatever post viral situation is going on. Some days I genuinely felt like I was dying, and I ended up in the ER multiple times. I’m now in the final stretch of the taper and feel way more stable in terms of withdrawal but still experience neurological symptoms and some pain.
* **My MCAS and POTS have both been noticeably worse since the viral illness**, but for months I kept assuming they would eventually settle back down.
* **The biggest mistake I made was staying extremely active throughout all of this.** I repeatedly pushed through what I now think may have been PEM. I kept getting episodes where I felt like I had the flu, but whenever I got tested for an actual infection, the tests came back negative. I would recover somewhat, become active again, crash again, and keep pushing. You probably see where this is headed.
* It’s now **September 3**, and I repeatedly get this horrible “flu” feeling: swollen/painful neck lymph nodes, a very slight sore-throat feeling, feeling extremely inflamed, profound lethargy, a horrible “poisoned” feeling, body aches, head pressure, cognitive impairment, memory problems, and sensitivity to light and noise. I had absolutely no idea what was happening until I started researching post-viral illness, long COVID and ME/CFS.
* **The flu-like episodes have become more frequent.** At first, I think they were happening roughly every couple of weeks. Then they started happening weekly. Now it can be every few days. In fact, even though I’m currently giving my body as much rest as possible, I’m sometimes waking up already feeling ill. The flu-like feeling can get so unbelievably intense that I literally feel like I’m dying.
* Over the last week, I’ve finally gone into **extreme rest/pacing mode**. Looking back, I didn’t just repeatedly deplete myself physically and push through my limits for several months — I also went through long bouts of severe anxiety, panic attacks and hyperarousal, which felt like they pushed my nervous system even further.
* I’ve **cancelled my gym memberships and stopped exercising**, and I’m saying no to friends/invitations because most of the time I either have no energy or I’m dealing with MCAS symptoms or another crash. What makes this confusing is that I still get windows where I suddenly have energy and could go out and do a lot if I wanted to/pushed myself to. But I now know that feeling better temporarily does NOT necessarily mean I should use all of that energy.
* At this point, I’m spending **almost all of my time at home and a lot of it in bed**. I’m located in New York and have an appointment with **Benjamin Natelson in December**, but that still feels very far away when I feel this sick right now.
* I feel like **ibuprofen/paracetamol or similar medications might help the flu-like/inflammatory feeling**, but I have GI issues and can potentially get serious complications from some of these medications, which really sucks. I keep wondering whether a lot of this flu-like sensation is being driven by cytokines/inflammatory mediators/prostaglandins, especially given my MCAS history. My MCAS doctor mentioned celecoxib being tolerated better and that we could trial it.
What scares me most is that I’m already **3.5 months out from the viral illness**, and I spent most of those months doing basically the opposite of pacing. I repeatedly pushed through crashes because I didn’t understand what was happening. Now I’m terrified that I’ve pushed my system too far and that I’m already in the ME/CFS category.
I also want to mention something that may or may not be relevant: **even before all of this, I always felt somewhat “chronic fatigue-y” growing up.** I was very active but always seemed to have a much smaller energy envelope for recovery than the people around me. That history makes what is happening now even scarier.
I know nobody here can diagnose me, but I would really appreciate hearing from people who recognize this pattern.
**My main questions are:**
* Does this story/onset sound similar to anyone else's ME/CFS or post-viral illness?
* Does the repeated flu-like/“poisoned” feeling with swollen lymph nodes, mild sore throat, body aches, cognitive problems, sensory sensitivity and extreme lethargy sound like PEM to you?
* Did anyone else repeatedly push through PEM for the first few months because they had no idea what was happening, and then manage to stabilize or improve once they finally started pacing?
* At only 3.5 months post-viral illness, is there still a realistic possibility that this is a post-viral syndrome that could substantially improve rather than established lifelong ME/CFS?
* Where would you go from here besides aggressive pacing/resting and managing the MCAS/POTS?
* Would you ask a doctor about **low-dose naltrexone (LDN)** at this stage?
* What about **glutathione**, or any other supplements/medications/interventions that genuinely helped you?
* For those who developed ME/CFS after a virus, did you ever have windows where you felt relatively energetic/normal despite having horrible crashes at other times?
* And for anyone who also has **MCAS, POTS/dysautonomia and/or EDS**, did getting those conditions better controlled improve your PEM or overall energy envelope?
I’m terrified that this is the beginning of what the rest of my life is going to look like. I’m trying not to catastrophize and tell myself that I’m only 3.5 months out and that I’ve finally recognized what may be happening and stopped pushing, but the fact that the flu-like crashes have seemingly become **more frequent rather than less frequent** really scares me.
Any experiences, advice, or things you wish you had known during the first few months would be incredibly appreciated. Please also excuse me for the obvious chatgpt written content, I can hardly properly type coherent sentences.
Edit: I just want to say a huge thank you to everyone who has commented. What a lovely, supportive community, even though we’re all going through something so incredibly difficult. You genuinely have no idea how much I appreciate every single reply. I’ve been screenshotting your comments and even sending them to my parents because they’ve brought me so much comfort and made me feel a little less alone in all of this.
It’s especially hard because I’m still at the very beginning of this journey, and the timing has been heartbreaking. I had finally started feeling better from some of my previous health issues, had just finished my master’s and was ready to work, finally met someone I was compatible with (ended things due to health issues etc) was ready to try to get my life back on track. I had so many plans for what came next, but I guess life had other plans.
Thank you for sharing your experiences, advice, encouragement, and hope with me. It really means more than you know. ❤️