11 months off - Benzo WD, Long Covid or CFS???

[[Wr...]]

 

Hey all, looking for some advice or similar experience. I'm new here but have been on the Benzo Subreddit for quite a while. A little back story:

Have a history of panic attacks and maybe low energy for about 10 years. Have had Covid 3 times, the last two times my very first symptom was a massive panic attack that sent me to the ER. It wasn't until a few days later that I got typical Covid symptoms which cleared up pretty normally except for the anxiety and panic attacks. I went on Xanax for about 4 months in early 2022 and was never warned of the dependence risks. My Dr. cut me off and I quit CT the first time. Spent most of 2022 feeling pretty rough, thought I had LC and tried all sorts of supplements, HCQ and IVM with no changes. 2023 the cycle repeated itself and I went back on Xanax for about 4 months again except this time things just kept getting worse. That's when I discovered benzo tolerance and interdose withdrawal and was pretty sure that's what was going on. I tapered myself off and have been off for over 11 months now with all sorts of crazy symptoms that ebb and flow, the "windows and waves" that is mentioned often in the benzo sub. Also, life has been overall pretty stressful the last 2 years. I'm 37, father of 3, sole income earner. In the last year we had baby #3, renovated and sold our house, lots of other crazy stuff. A lot of this time I felt pretty terrible but still functional and a lot of the symptoms match benzo withdrawal but they also match CFS and Long Covid, the overlap is pretty crazy.

The last couple months I would say I've been 60-80% back to normal even in the midst of being super busy, stressful times getting the house renovated and sold, etc. We sold our house and have been traveling for about a month now in our RV, I was on PTO for part of that but started back to work 2 weeks ago. Overall pretty functional most of the time. Fast forward to the last 3 days. All the sudden I had a huge resurgence of symptoms that are similar to what I've been experiencing all along but seems possibly even worse in regards to the muscle tension and weakness. Thankfully, pretty much zero anxiety, no panic attacks like I remember them at least, haven't had one in at least 10 months. Everything is very physical.

Crazy muscle tension, feels like all of my muscles are tight and clenched and full of acid which leads to fatigue, weakness, shaking, pins and needles, etc. Nausea, chills, head squeezing, head feels like it's on fire, indigestion, brain fog, feel like I'm losing my mind, really poor sleep quality and my Garmin noted a drop in HRV and high stress. Elevated HR and BP. Vision issues, brain fog, etc. Feels like I'm dying. Feels like a panic attack without the panic. I feel tired but wired, just weirdly exhausted/fatigued feeling. 

CFS has been in the back of my mind for a while but again, I've been super busy this last year between kids, work and renovating our house. Earlier in WD I would have periods where I physically couldn't push my body any more and would have to go lay down but would recover quickly. This wave of symptoms came out of nowhere. If anything, the week leading up to this has been much less stressful than even the previous 6 weeks so that makes me think it isn't really PEM from CFS. Can't really determine a trigger. Knowing that benzo WD can come in windows and waves randomly has me leaning more towards that still. 

I guess I'm just looking for anyone with similar experience, any advice you might have. If this sounds like benzo withdrawal still, if anyone has had waves this rough this far out, any words of hope or encouragement

If you've made it this far, thank you!

 

[[pi...]]

Hello @[Wr...],

Welcome to Benzo Buddies. You certainly have had a lot on your plate. Congratulations on baby number 3! To be honest, I get tired just reading about all you’ve done this year. Renovating a house is a big deal, as well as selling it. 

From what you mentioned, I think you know that long covid symptoms can mimic benzo withdrawal. Did you feel completely recovered after each covid infection? 

I am sorry the doctor had you stop Xanax cold turkey.  That is simply not the way to help people discontinue the use of these types of drugs. Additionally, each time you stop and start benzos it causes kindling, which can make subsequent withdrawals  more difficult and challenging.

You are very correct that recovery comes with windows and waves. At 11 months off I’m not surprised that this is happening to you. I certainly wasn’t recovered at that period and did have some intense physical waves. With a sensitive central nervous system due to benzos and withdrawal, it doesn’t take much to upset the apple cart.

I did have some of the symptoms you describe during the last wave I had before healing. The muscle tension and squeezing app was the worse. I did see the doctor and had a plethora of tests, all with negative results. It did ease up. 

I hope things ease up for you soon, keep posting and let us know how we can help.

[[Wr...]]

18 hours ago, [[p...] said:

Hello @[Wr...],

Welcome to Benzo Buddies. You certainly have had a lot on your plate. Congratulations on baby number 3! To be honest, I get tired just reading about all you’ve done this year. Renovating a house is a big deal, as well as selling it. 

From what you mentioned, I think you know that long covid symptoms can mimic benzo withdrawal. Did you feel completely recovered after each covid infection? 

I am sorry the doctor had you stop Xanax cold turkey.  That is simply not the way to help people discontinue the use of these types of drugs. Additionally, each time you stop and start benzos it causes kindling, which can make subsequent withdrawals  more difficult and challenging.

You are very correct that recovery comes with windows and waves. At 11 months off I’m not surprised that this is happening to you. I certainly wasn’t recovered at that period and did have some intense physical waves. With a sensitive central nervous system due to benzos and withdrawal, it doesn’t take much to upset the apple cart.

I did have some of the symptoms you describe during the last wave I had before healing. The muscle tension and squeezing app was the worse. I did see the doctor and had a plethora of tests, all with negative results. It did ease up. 

I hope things ease up for you soon, keep posting and let us know how we can help.

I appreciate your kind response and encouragement!

Regarding Covid, first time I had it in July 2020 and it was rough but recovered fine.  When I had it in 2022 and again in 2023, it started with an uncontrollable panic attack that sent me to the ER which is where I got swabbed and tested positive. It wasn't until a few days later that I had normal covid symptoms which were more mild than the first infection and cleared at what seemed like a normal timeline. Except, the anxiety and panic stuck around for a while and is what got me on benzos for an extended period.  I was already prone to panic attacks, had been having them randomly, usually a few times a year, for about a decade and had used benzos very short term a couple times in the past whether via IV at the ER or via pills.  I know Covid caused increased anxiety for a lot of people that never dealt with it before. I'm not sure why mine got so much worse, whether directly because of the infection or because of my increased fear around it or a combination. The good news is through the DARE method and some therapy, I haven't had a full blown panic attack in over a year, even in the midst of taper and withdrawal. I've had the physical symptoms that would normally lead up to one plenty of times but mentally I've been able to recover much more quickly and the symptoms pass sooner. I guess because both of the most recent Covid infections also coincided with my extended benzo use, it still leaves the fear of Long Covid lingering in the back of my mind. Chicken or egg situation. 

While things have died down a little in the last day or two, the fatigue, weakness, muscle burning/acid feeling is still pretty intense and the head squeezing and brain fog is worse than its been in quite a while. I'm still functional, working, helping take care of the kids as much as possible, etc. but everything is so painful and feels like a monumental task and I just feel blank in the brain. Every wave feels like the end of the world all over again and it always seems like "this is the worst I've ever felt". I'm sure you can relate. I really trip myself up with the fear of CFS/PEM and "pushing too hard and causing a permanent setback".  I know that hasn't been my experience so far, I've done a lot in the last 11 months and I always come out of the wave eventually but the fear is real.

We were all sick a little over 2 weeks ago and I had some chest congestion and green snot, its mostly cleared up but the last couple days I've had a little bit of a cough and snot again so I'm not sure if I'm still fighting something or it turned into a sinus infection or what. I'm sure that's not helping either.  I don't think it was Covid, if it was, it was nothing like previous infections.  

Anyway...  Hoping and praying this is just another wave and will pass soon enough.  The tendency to fear the worst and convince myself this is permanent is immense.  Because I unknowingly went through this in 2022, its really been over 2 years of suffering even though I only jumped off 11 months ago. I think that makes it even harder feeling like I've been so disconnected and broken for over 2 years of my kids' life, etc.  

Again, thank you for taking the time to respond, it truly is appreciated!

Edited July 26 by [Wr...]
Added info

[[Bu...]]

On 26/07/2024 at 17:59, [[W...] said:

I appreciate your kind response and encouragement!

Regarding Covid, first time I had it in July 2020 and it was rough but recovered fine.  When I had it in 2022 and again in 2023, it started with an uncontrollable panic attack that sent me to the ER which is where I got swabbed and tested positive. It wasn't until a few days later that I had normal covid symptoms which were more mild than the first infection and cleared at what seemed like a normal timeline. Except, the anxiety and panic stuck around for a while and is what got me on benzos for an extended period.  I was already prone to panic attacks, had been having them randomly, usually a few times a year, for about a decade and had used benzos very short term a couple times in the past whether via IV at the ER or via pills.  I know Covid caused increased anxiety for a lot of people that never dealt with it before. I'm not sure why mine got so much worse, whether directly because of the infection or because of my increased fear around it or a combination. The good news is through the DARE method and some therapy, I haven't had a full blown panic attack in over a year, even in the midst of taper and withdrawal. I've had the physical symptoms that would normally lead up to one plenty of times but mentally I've been able to recover much more quickly and the symptoms pass sooner. I guess because both of the most recent Covid infections also coincided with my extended benzo use, it still leaves the fear of Long Covid lingering in the back of my mind. Chicken or egg situation. 

While things have died down a little in the last day or two, the fatigue, weakness, muscle burning/acid feeling is still pretty intense and the head squeezing and brain fog is worse than its been in quite a while. I'm still functional, working, helping take care of the kids as much as possible, etc. but everything is so painful and feels like a monumental task and I just feel blank in the brain. Every wave feels like the end of the world all over again and it always seems like "this is the worst I've ever felt". I'm sure you can relate. I really trip myself up with the fear of CFS/PEM and "pushing too hard and causing a permanent setback".  I know that hasn't been my experience so far, I've done a lot in the last 11 months and I always come out of the wave eventually but the fear is real.

We were all sick a little over 2 weeks ago and I had some chest congestion and green snot, its mostly cleared up but the last couple days I've had a little bit of a cough and snot again so I'm not sure if I'm still fighting something or it turned into a sinus infection or what. I'm sure that's not helping either.  I don't think it was Covid, if it was, it was nothing like previous infections.  

Anyway...  Hoping and praying this is just another wave and will pass soon enough.  The tendency to fear the worst and convince myself this is permanent is immense.  Because I unknowingly went through this in 2022, its really been over 2 years of suffering even though I only jumped off 11 months ago. I think that makes it even harder feeling like I've been so disconnected and broken for over 2 years of my kids' life, etc.  

Again, thank you for taking the time to respond, it truly is appreciated!

How are you doing now? I have long covid cfs plus Benzo withdrawal symptoms. I think Benzo fatigue is real but is different to covid/cfs PEM. 
 

I have both

 

i would strongly advise you to avoid stress as much as possible at all costs until your wave settles down

 

feel free to message me if you would like to

[[Wr...]]

On 12/08/2024 at 03:38, [[B...] said:

How are you doing now? I have long covid cfs plus Benzo withdrawal symptoms. I think Benzo fatigue is real but is different to covid/cfs PEM. 
 

I have both

i would strongly advise you to avoid stress as much as possible at all costs until your wave settles down

feel free to message me if you would like to

Appreciate it!

 

Doing better than I was when I made this post but still just tired, fatigued, weak and sore everyday. Muscle tension comes and goes throughout the day. I've been tracking my symptoms again for about 3 weeks now and haven't really noticed much of a correlation between my level of activity and how I feel over the next few days, it's kinda just a roll of the dice. Some days I walk a lot of steps and work all day, interact with the kids, help making food, etc and feel fine the next day and other times I have an more chill day and feel worse the next few days. I haven't tried exercise in a while so I may try a short jog or something and then see how I react to that. 

[[Bu...]]

11 hours ago, [[W...] said:

Appreciate it!

Doing better than I was when I made this post but still just tired, fatigued, weak and sore everyday. Muscle tension comes and goes throughout the day. I've been tracking my symptoms again for about 3 weeks now and haven't really noticed much of a correlation between my level of activity and how I feel over the next few days, it's kinda just a roll of the dice. Some days I walk a lot of steps and work all day, interact with the kids, help making food, etc and feel fine the next day and other times I have an more chill day and feel worse the next few days. I haven't tried exercise in a while so I may try a short jog or something and then see how I react to that. 

Glad to hear you’re feeling better 
 

Sounds like you are infinitely more functional than me. I’m largely bedridden. 
protect your precious level of functioning 

too much exercising and dieting transformed me from where to are to this bedbound creature so I would  be super cautious with that

i would do anything to be able to do housework and take care of my daughter again. 

[[vo...]]

16 hours ago, [[W...] said:

Appreciate it!

Doing better than I was when I made this post but still just tired, fatigued, weak and sore everyday. Muscle tension comes and goes throughout the day. I've been tracking my symptoms again for about 3 weeks now and haven't really noticed much of a correlation between my level of activity and how I feel over the next few days, it's kinda just a roll of the dice. Some days I walk a lot of steps and work all day, interact with the kids, help making food, etc and feel fine the next day and other times I have an more chill day and feel worse the next few days. I haven't tried exercise in a while so I may try a short jog or something and then see how I react to that. 

@[Wr...] You're actually very intuitive into what is happening and what you need to do. Do what you are able to when your body allows you to and be kind to yourself when you aren't able to. You're on the right track!