1 year off - Insane Wave?

[[Wr...]]

Almost a year off. Day 5 of crazy muscle tension and fatigue, 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, temperature regulation issues, burning eyes.  Feels like I can barely walk. Feels like I'm dying. Feels like a panic attack without the panic. I feel tired but wired, just weirdly exhausted/fatigued feeling. 

This may be worse than acute. 

Anyone get hit this hard this far out?

 

[[Cr...]]

*raises hand* I got hit hard around the 1 year mark (since my last rescue dose). What you are describing is very similar to how withdrawal decided to celebrate its 1 year anniversary with me.

Panic attack without the panic and tired but wired both are good ways to describe the confliction in many of the symptoms. I experienced nausea, morning terror, depression, restlessness, burning skin, sense of doom as well. It was worse than my previous waves. Luckily, it also ended up being the last major wave right before I recovered, so there is a chance this may be withdrawal giving you quite a rude going-away present.

[[Wr...]]

19 minutes ago, [[C...] said:

*raises hand* I got hit hard around the 1 year mark (since my last rescue dose). What you are describing is very similar to how withdrawal decided to celebrate its 1 year anniversary with me.

Panic attack without the panic and tired but wired both are good ways to describe the confliction in many of the symptoms. I experienced nausea, morning terror, depression, restlessness, burning skin, sense of doom as well. It was worse than my previous waves. Luckily, it also ended up being the last major wave right before I recovered, so there is a chance this may be withdrawal giving you quite a rude going-away present.

Thank you for that, it's helpful to hear. The fatigue and weakness is crazy and is what scares me most. Father of 3 and sole income earner so I don't really have much option to rest. Afraid it's going to turn into CFS or something permanent by trying to push through. 

[[Pa...]]

Hi @[Wr...], how were you doing before this wave hit?  Have you figured out what may have brought it on?  

My friend got hit at 9 months, he thought he was fully recovered but he used a bit of steroid cream on his ankle and...  The good news is, it lasted less than a week but it sure scared him. 

 

[[id...]]

Were you sick recently? 

I am in a wave now, 6.5 years out, after years of doing fine, 98% healed. 

This wave has been going on for 8-9 days. We had a very mild cold right before this. I didn't think the cold triggered it but the symptoms you are describing are exactly what I'm going through and it seems so strange to have a wave almost 7 years later. I wonder maybe it's some sort of crazy COVID variant that impacts CNS?

[[Wr...]]

23 minutes ago, [[i...] said:

Were you sick recently? 

I am in a wave now, 6.5 years out, after years of doing fine, 98% healed. 

This wave has been going on for 8-9 days. We had a very mild cold right before this. I didn't think the cold triggered it but the symptoms you are describing are exactly what I'm going through and it seems so strange to have a wave almost 7 years later. I wonder maybe it's some sort of crazy COVID variant that impacts CNS?

We were all sick with something very mild a little over 2 weeks ago. Some chest congestion mainly. I've been way more sick earlier in withdrawal and it didn't hit me like this. That's the only thing I can think of. Very crazy stuff. 

[[Wr...]]

3 hours ago, [[P...] said:

Hi @[Wr...], how were you doing before this wave hit?  Have you figured out what may have brought it on?  

My friend got hit at 9 months, he thought he was fully recovered but he used a bit of steroid cream on his ankle and...  The good news is, it lasted less than a week but it sure scared him. 

I had been doing pretty well. Life has been pretty busy and stressful this whole past year. I would say the 2 weeks leading up to this were far less stressful than the 6-8 weeks prior. No change in diet, not taking any meds. The only thing I can think is we all had a really mild bug about 3 weeks ago, some chest congestion and green snot but I've been way sicker earlier in withdrawal and it didn't hit like this. I'm at a loss. 

[[Pa...]]

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

I had been doing pretty well. Life has been pretty busy and stressful this whole past year. I would say the 2 weeks leading up to this were far less stressful than the 6-8 weeks prior. No change in diet, not taking any meds. The only thing I can think is we all had a really mild bug about 3 weeks ago, some chest congestion and green snot but I've been way sicker earlier in withdrawal and it didn't hit like this. I'm at a loss. 

What really frustrates me is when I can't figure out why a setback occurs, which when interacting with members happens all too often, sometimes we just don't know.  But from what I've seen here, most setbacks are short in duration, meaning a week or two so hopefully, even though your symptoms have been intense, they'll resolve soon.  Try not to panic because that will makes things worse, you know how it is...

[[Wr...]]

1 hour ago, [[P...] said:

What really frustrates me is when I can't figure out why a setback occurs, which when interacting with members happens all too often, sometimes we just don't know.  But from what I've seen here, most setbacks are short in duration, meaning a week or two so hopefully, even though your symptoms have been intense, they'll resolve soon.  Try not to panic because that will makes things worse, you know how it is...

Thank you, I am doing my best but I'm definitely scared. I feel almost paralyzed this morning and all of muscles feel like they're full of acid. I barely got any sleep last night and the quality was terrible. Strongly considering going to the hospital. 

[[Ca...]]

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

Almost a year off. Day 5 of crazy muscle tension and fatigue, 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, temperature regulation issues, burning eyes.  Feels like I can barely walk. Feels like I'm dying. Feels like a panic attack without the panic. I feel tired but wired, just weirdly exhausted/fatigued feeling. 

This may be worse than acute. 

Anyone get hit this hard this far out?

 

Yes I got hit that hard at almost 16 months out! Sounds like a Setback to me! That's exactly what I am suffering from and enduring since I got off methylphenidate on April 18 this year (one year mark!) and Propanolol about 2 weeks ago! Similiar symptoms. Like right back to acute! The fatigue is the worst. My skin recently looks and feels like I had Ehlers Danlos syndrome. And I had already improved so much before that. Setbacks happen for most of us! Some have 2 or 3 or 4 of 'em even years out even if they considered themselves healed for a long time. The good news it will pass! You only don't know when. Hold on to it and distract yourself as good as you can! You will make it through,  so do I. I am in this setback for mote than 3 months but the last 2 meds and valerian I got off play a major role in it.  So it mixes up with the withdrawal syndromes of the other meds I got off. There is also a lot of extreme stress around in my life that I cannot avoid because it isn't to avoid

Edited July 28 by [Ca...]

[[Wr...]]

12 minutes ago, [[C...] said:

Yes I got hit that hard at almost 16 months out! Sounds like a Setback to me! That's exactly what I am suffering from and enduring since I got off methylphenidate on April 18 this year (one year mark!) and Propanolol about 2 weeks ago! Similiar symptoms. Like right back to acute! The fatigue is the worst. My skin recently looks and feels like I had Ehlers Danlos syndrome. And I had already improved so much before that. Setbacks happen for most of us! Some have 2 or 3 or 4 of 'em even years out even if they considered themselves healed for a long time. The good news it will pass! You only don't know when. Hold on to it and distract yourself as good as you can! You will make it through,  so do I.

Thanks for that. I'm feeling almost bedbound from the muscle pain, burning, weakness and fatigue right now. HR spikes to 140 if I get up to go potty and I get dizzy. My temp swings between 97 and 101 randomly. Maybe I'm coming down with something viral but it's been varying degrees of this for 7 days now. Monday was pretty rough, things let up a little for a few days and then yesterday was bad and today is worse. Strongly considering going to the ER at this point. 

[[Ca...]]

6 minutes ago, [[W...] said:

Thanks for that. I'm feeling almost bedbound from the muscle pain, burning, weakness and fatigue right now. HR spikes to 140 if I get up to go potty and I get dizzy. My temp swings between 97 and 101 randomly. Maybe I'm coming down with something viral but it's been varying degrees of this for 7 days now. Monday was pretty rough, things let up a little for a few days and then yesterday was bad and today is worse. Strongly considering going to the ER at this point. 

I am also bedridden for most of the time! I also feel pretty dizzy with vision disturbances. You might experience benzo flu! That's a pretty comon symptom! I have it too, especially in the evening! If you really go to the ER please take good care that they don't put you on any other psych med or a benzo or any other med you should avoid while withdrawal and or BIND It might worsen your symptoms tenfold! There's a list of what medication to avoid while benzo withdrawal and BIND on Benzodiazepine Information Coalition. 

Edited July 28 by [Ca...]

[[Th...]]

I’m 11 months out. I too am struggling. The more physical activity that I do the worse I get unfortunately. Yesterday went to the beach with my family carried some items down stairs to the sand and started shaking and getting muscle twitches all over. The muscle pain and stiffness is terrible too. 
 

@[Wr...] How close to 100% have you gotten outside this wave? Or is it constant?

[[Wr...]]

2 minutes ago, [[T...] said:

I’m 11 months out. I too am struggling. The more physical activity that I do the worse I get unfortunately. Yesterday went to the beach with my family carried some items down stairs to the sand and started shaking and getting muscle twitches all over. The muscle pain and stiffness is terrible too. 
 

@[Wr...] How close to 100% have you gotten outside this wave? Or is it constant?

I can definitely relate. I've been very busy during my whole withdrawal. I work full time and have 3 kids. We welcomed baby #3 this year, renovated and sold our house and have been traveling/living in an RV for almost 2 months, it was our dream.

Early on, I couldn't even mow the lawn myself, my wife had to do it. But in those cases it would trigger a panic attack. Then around 6 months off I got hit with waves of muscle tension, shaking and pain but I was able to push through or go rest for just a little bit and be fine. I did a lot of work to get rid of the anxiety and panic and haven't had a full blown panic attack in over a year thankfully. I would say from month 5 til now I was running 60-80% most of the time with some nasty waves mixed in.

This hit hard about 7 days ago. We were all sick with some chest congestion and cough but that was almost 3 weeks ago. I had to push through a couple times but I definitely feel worse for it. That's what makes me worry about CFS. 

[[Th...]]

@[Wr...] it’s nice that you’ve had long windows of between 60-80. I don’t think I have even had that. For me it’s a lot less about anxiety now and a lot more about physical problems. Twitching and muscle pain seem to be my biggest issues. I too stay very busy, I work full time and have a 3 year old. I try to power through but struggle a lot of the days. I still have a hard time believing it’s the benzos that did this to me. Which will lead me down bad rabbit holes. 

[[Wr...]]

Just now, [[T...] said:

@[Wr...] it’s nice that you’ve had long windows of between 60-80. I don’t think I have even had that. For me it’s a lot less about anxiety now and a lot more about physical problems. Twitching and muscle pain seem to be my biggest issues. I too stay very busy, I work full time and have a 3 year old. I try to power through but struggle a lot of the days. I still have a hard time believing it’s the benzos that did this to me. Which will lead me down bad rabbit holes. 

Thanks for that. I don't seem to see as many posts about people switching to primarily physical symptoms but that's exactly how I am too. I got on for panic attacks and anxiety but I thankfully haven't dealt with that in quite a while. The DARE method and counseling really helped with that.  Praying this is just something viral causing a nasty wave and will pass quickly. There's definitely a fear aspect as well and just doing my best to stay calm and reframe and all that positive stuff. Hang in there!