Seriously, what is going on with my muscles?

[[wi...]]

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

So my thoughts…and this is a debate I had with my psychiatrist.  
 

Creating new neural pathways is great for developing positive actions, habits and behaviors.  There is definite power in the mind.  I think you can strengthen that stuff so you can sort of hit the ground running once fully healed.  But, I tend to believe this has little impact on healing GABA receptors.  Time is the primary healer, just like it is for healing a broken leg.  With a broken leg, sure you can do some exercises to sort of strengthen the rest of your leg to support the healing bone, and be in a better place mentally once healed, but time is the only thing that’s going to heal that bone break.  
 

Every therapist will wear you out on this neural pathway stuff but I also don’t think they realize the extent of the damage/dysfunction.  You don’t see them telling people to think their way out of Parkinson’s.  You’ll beat yourself up time and again expecting that to make a huge change.  It’s not like we just decided to let ourselves fall apart when withdrawing from benzos.  Listen, there are some real sacks of shit in this country who sit on the couch all day but can go down the street to buy booze, Cheetos and cigarettes and not be in agony.  Just because they’re idle and not working their minds doesn’t mean their bodies and minds completely fall apart.  They’re unhealthy for sure and years of doing that will take its toll but it’s not like things completely unravel over a few weeks/months like us.  There have been people who have literally healed overnight from this stuff after years of suffering.  It’s not like they just woke up and decided it was time to get their life together.  

Wholeheartedly in agreement 👍

[[bu...]]

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

I’m with @[bu...] in this and the neural pathways. Instead of taking a left to walk my dogs I go right for a week, then a different path; I am ‘doodling’ in my sketchbook with my left hand only this week. And it has to be consistent.Repetition is key for neural pathways to grow. I’m also coming here for a brief moments only, when I start thinking about symptoms I immediately tell my brain there is more to think about so I will come up with, errrr, letter ‘P’ then try to name words starting with that letter. I sing to myself, huuummmmm, deep breathe constantly and try to do everything with intention. I’m basically operating like a robot without emotion yet I do believe in muscle memory and that efforts of any kind, even the smallest, will add up eventually.

Jennifer Swantkowski also told me you need to ‘habit’ yourself out of certain patterns. For example, I now will allow only a 15 minute nap instead of hours or all day; I now shower daily even if that only means a rinse and so on…

I’ve done 11,000 steps today with 4 little naps in between and worked in the garden for like 8 minute spurts (the endorphins alone are worth the push), I’ve thought I needed to go to the ER 72 times, I can’t take real breaths no matter what I said above, my tinnitus is screaming, talked to 4 neighbors incoherently, look like someone in a horror flick but I.Will,Not.Stop. Well, I might be in traction tomorrow 🤦‍♀️, but I know for me, this isn’t going to happen overnight, or by some miracle via my pillow so-again, for me-I am going to push and use any tool possible to help accelerate healing ❤️‍🩹 

Nap before eclipse! After another 40 oz of water…

thank you for sharing this, and i want to say im super proud of you, you are working hard hard hard. and it does take hard work for a long time, the hardest thing we will all go through, and man ive been through hell a few times now but this is the hardest next to recovering from crps and that was hard work too.

keep up the work as they will pay off, your doing great changes to work that brain : )

i too take less naps ( well rests as i hardly sleeo in the day) but a twenty min laydown can lower the fatigue ready for the next few hours. ALso i take cold baths owwchh i know, i only sit with my legs in but boy when i get out i feel a nice feeling and the fatigue lifts again. We do what we can.  the only way is through with hard work, not laying around crying all day, and ive tried that! it made me worse as all i was doing was telling my brain its right to be scared and send me more symptoms. Keep going hun, you will heal i hear it in your writing xx

[[bu...]]

On 07/04/2024 at 23:43, [[d...] said:

Muscle strength, motion, reflex, etc is not my problem.  Neuro PT won’t do a thing.  
 

The problem is my muscles simply won’t relax until the brain decides it’s ready to make them relax.  It’s 1000% a brain thing.  I have tried on many occasions to pretend nothing is wrong and just go about my day and the result is always the same.  My body will be so revved up by the time I go to bed that I can’t sleep and the next day I’ll be so exhausted and in so much pain that I literally want to die.  So, I kind of stopped testing and pushing myself.  
 

For whatever reason, my muscles can and will get unbearably tense with the slightest physical activity and exertion.  Going to grocery store, my kids sports, sex.  If I’m walking around, it typically starts in the legs, works its way up to my abdomen/back and then up into my head.  And it typically won’t go back to the way it was until I sleep. I can’t explain any of this but it started settling in near the very end of my taper and has been getting steadily worse.  
 

I just really have to watch my physical activity.  I can get up and stand up and move around, but I really have to watch myself  

have you tried yoga nidra? or tensing your muscles more and then relaxing them as much as you can, maybe show your brain tense is okay and one day it will go off. mine have been tense too for 8 years now, even before i went on benzos, so i know i got to sort my brain out lol. i do meditation and that makes them relax for a while. and power walking seems to help too sometime. oh and punching with boxing gloves on. maybe try ice batch if you can or just cold showers. i need them ever day a few times to calm my nervous system. 

[[dj...]]

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

thank you for sharing this, and i want to say im super proud of you, you are working hard hard hard. and it does take hard work for a long time, the hardest thing we will all go through, and man ive been through hell a few times now but this is the hardest next to recovering from crps and that was hard work too.

keep up the work as they will pay off, your doing great changes to work that brain : )

i too take less naps ( well rests as i hardly sleeo in the day) but a twenty min laydown can lower the fatigue ready for the next few hours. ALso i take cold baths owwchh i know, i only sit with my legs in but boy when i get out i feel a nice feeling and the fatigue lifts again. We do what we can.  the only way is through with hard work, not laying around crying all day, and ive tried that! it made me worse as all i was doing was telling my brain its right to be scared and send me more symptoms. Keep going hun, you will heal i hear it in your writing xx

I hope you’re not suggesting that I’m laying around and crying all day.  
 

Listen, this is my third attempt at recovering from benzos.  I was on them for 19 years, got off for 10 months, reinstated, tapered, got off for 10 months, reinstated, tapered, and have now been off 18 months.  This muscle stuff I’m talking about was pretty much unnoticeable my first attempt at recovery.  The second time it was a little more prevalent but not a major issue.  Went on 30-45 minute walks every day.  Third time?  Holy crap.  Can’t even walk around the block without muscles screaming at me.  
 

My point is there are different degrees of this.  What I’ve learned is most of the conventional treatments are actually more effective when this isn’t as bad.  Now it’s like everything I try blows up on my face.  Ultimate Catch-22.  

This is clearly a brain issue.  I’ll go days of being unbearably tense and then all of a sudden I’ll feel a cool, relaxing feeling wash over me like someone just shot a Xanax into my veins, and everything relaxes, for a while at least.  The brain just doesn’t have things figured out yet.  It’s trying though. 

[[An...]]

On 07/04/2024 at 16:59, [[d...] said:

It would be pretty awesome if the brain had a factory default setting. 

LOL< True.

[[bu...]]

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

I hope you’re not suggesting that I’m laying around and crying all day.  
 

Listen, this is my third attempt at recovering from benzos.  I was on them for 19 years, got off for 10 months, reinstated, tapered, got off for 10 months, reinstated, tapered, and have now been off 18 months.  This muscle stuff I’m talking about was pretty much unnoticeable my first attempt at recovery.  The second time it was a little more prevalent but not a major issue.  Went on 30-45 minute walks every day.  Third time?  Holy crap.  Can’t even walk around the block without muscles screaming at me.  
 

My point is there are different degrees of this.  What I’ve learned is most of the conventional treatments are actually more effective when this isn’t as bad.  Now it’s like everything I try blows up on my face.  Ultimate Catch-22.  

This is clearly a brain issue.  I’ll go days of being unbearably tense and then all of a sudden I’ll feel a cool, relaxing feeling wash over me like someone just shot a Xanax into my veins, and everything relaxes, for a while at least.  The brain just doesn’t have things figured out yet.  It’s trying though. 

Keep hold of that, the brain is trying! having some feelings wash over you is great. i don't even get that, and I'm functioning better than many people, less than some.

I imagine the fact that you've been on and off them a few times is why your brain is now reacting with muscle symptoms and blow. It's had enough of the abuse of the drugs. ( not your fault) its going to take time to heal and trust the world it lives in, but you can help with that side.  You are right. When people are in mild withdrawal, things seem to work for them, I imagine, as they are less stuck in flight, and the brain is ready to calm down and trust. where as where we are, trying something new can f..k it all up. Its frustrating i know, but just do your best and learn your bodies patterns so you know when to push a little and rest a little . i know when i need to have a cold shower or a hot one by my symptoms, and they calm down after. the same as sometimes exercise works. Others it doesn't, but as long as I soothe myself somatically, it will go back down, and less danger signals are sent to my brain. 

and no, I don't assume you sit and cry all day lol, but I know many who do, and they can actually do more but sit in fear and symptoms, wishing them away. 

[[dj...]]

My muscles finally relaxed a few hours ago thank goodness.  My body had had enough and said shut it down.  Now I’m fatigued as hell though.  This is typically what happens. 
 

That was a bad 3-4 day stretch of absurd and distressing pressure/tension.  

Edited April 9 by [dj...]

[[Ma...]]

Yup. Same .

 

is there anyone couchridden from this weakness stiffness muscle seizing and creating hunchback?

[[Do...]]

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

I hope you’re not suggesting that I’m laying around and crying all day.  
 

Listen, this is my third attempt at recovering from benzos.  I was on them for 19 years, got off for 10 months, reinstated, tapered, got off for 10 months, reinstated, tapered, and have now been off 18 months.  This muscle stuff I’m talking about was pretty much unnoticeable my first attempt at recovery.  The second time it was a little more prevalent but not a major issue.  Went on 30-45 minute walks every day.  Third time?  Holy crap.  Can’t even walk around the block without muscles screaming at me.  
 

My point is there are different degrees of this.  What I’ve learned is most of the conventional treatments are actually more effective when this isn’t as bad.  Now it’s like everything I try blows up on my face.  Ultimate Catch-22.  

This is clearly a brain issue.  I’ll go days of being unbearably tense and then all of a sudden I’ll feel a cool, relaxing feeling wash over me like someone just shot a Xanax into my veins, and everything relaxes, for a while at least.  The brain just doesn’t have things figured out yet.  It’s trying though. 

Seems youre the perfect example of kindling.

[[dj...]]

7 minutes ago, [[D...] said:

Seems youre the perfect example of kindling.

Poster child.  Kindling is very real.  
 

 

[[Jo...]]

Hey @[dj...], you are the only person that described exactly what going through with my muscles. The muscle tension, the mushy feeling, the vibrations, all of it  There even certain days where I can’t even walk correctly. Every day my muscles are doing something different. I am only 6 months out dealing with this. 

My case is probably the result of kindling as well. I did a dangerously fast taper off of k. And I did try to get off of it a couple of times. I did all this not how strong k was and how much of an effect it was going to have on my CNS.

[[dj...]]

35 minutes ago, [[J...] said:

Hey @[dj...], you are the only person that described exactly what going through with my muscles. The muscle tension, the mushy feeling, the vibrations, all of it  There even certain days where I can’t even walk correctly. Every day my muscles are doing something different. I am only 6 months out dealing with this. 

My case is probably the result of kindling as well. I did a dangerously fast taper off of k. And I did try to get off of it a couple of times. I did all this not how strong k was and how much of an effect it was going to have on my CNS.

Nobody knows until they get burned sadly.  
 

Yes, I have a number of different muscle “settings” as I call them.  They’re hard to describe but I know the feeling when it’s there.  Probably 5-6 different ones, just revolving in and out and each of them distressing. It’s almost like the muscles are hallucinating and creating different sensations.  

[[Ha...]]

On 07/04/2024 at 05:20, [[d...] said:

This is a rhetorical question and I’m just venting.  No muscle in my body is immune from this stuff.  The feeling is different every day.  Some days they just feel incredibly tight.  The next day they may feel like mush.  Another day I feel like they weigh 1,000 lbs.  Some days they are beyond sore.  Some days they are vibrating.  Some days they feel cold and weightless.  
 

This is Crazytown.  It’s like my body is hallucinating.  

I here ya. It sucks doesn't it. My muscles are so whacked out. One of the lingering withdrawal symptoms for me. Tinnitus and muscular issues. Oh, and yes the heaviness of the limbs happened to me as well. it all gets better though! Hang in there.

[[WU...]]

Kindling

I'm convinced taking these pills on and off is worse than taking them regularly. And yet all my GP's prescriptions state to take "as required", exactly the wrong thing ! When will they learn? Of course they shouldn't have kept prescribing them in the first place but that's another story and in danger of going off topic again....

 

[[Ka...]]

“As required” is really not helpful & it leaves onus on us to decide when we require them. (My first box of diazepam  was labelled take 1-2 tablets x three times a day)

These are not like paracetamol for goodness sake! We know they cause dependency & intolerance & then there’s WD so what is the flipping point. Sorry going off topic …..

 

[[dj...]]

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

Kindling

I'm convinced taking these pills on and off is worse than taking them regularly. And yet all my GP's prescriptions state to take "as required", exactly the wrong thing ! When will they learn? Of course they shouldn't have kept prescribing them in the first place but that's another story and in danger of going off topic again....

I was told to take Xanax twice a day.  I’m pretty sure there was no “as needed” part to it.  I was either taking them 2-3x/day or not taking them at all.  I think that’s what really confuses the brain.  
 

Anyway, few people would develop problems if a doctor gave out no more than say, 7-10/month.  I do know one guy who was taking Valium 3-4x/week for 10 years and developed major withdrawal, but he was very consistent with that routine. 
 

 

[[dj...]]

39 minutes ago, [[H...] said:

I hear ya. It sucks doesn't it. My muscles are so whacked out. One of the lingering withdrawal symptoms for me. Tinnitus and muscular issues. Oh, and yes the heaviness of the limbs happened to me as well. it all gets better though! Hang in there.

@[Ha...] how far off are you?  I’m 18 months off and this muscle stuff went nuclear for me around month 12/13.  We all have our own time tables I guess.  Just wish I wasn’t going backwards with this.  

[[WU...]]

2 hours ago, [[d...] said:

muscle stuff went nuclear for me around month 12/13.

This is what has happened to me. It is extraordinary how it has ramped up.

[[Ha...]]

On 10/04/2024 at 10:31, [[d...] said:

@[Ha...] how far off are you?  I’m 18 months off and this muscle stuff went nuclear for me around month 12/13.  We all have our own time tables I guess.  Just wish I wasn’t going backwards with this.  

Hi there, I;m at the very end of an 2 year taper. Muscular issues have been really the worst and the most lingering W/D symptoms. All other symptoms are getting better. I hope this doesn't get worse. I could hardly walk around the a mall last Christmas and it wasn't from a herniated disc. Just muscle on my left side were locked up really bad. Still having that problem. :-( I hope you get yours resolved soon!

[[dj...]]

6 hours ago, [[H...] said:

Hi there, I;m at the very end of an 2 year taper. Muscular issues have been really the worst and the most lingering W/D symptoms. All other symptoms are getting better. I hope this doesn't get worse. I could hardly walk around the a mall last Christmas and it wasn't from a herniated disc. Just muscle on my left side were locked up really bad. Still having that problem. :-( I hope you get yours resolved soon!

I can sympathize.  I went to Target on Tuesday night and then the grocery store on Wednesday night (at my daughters request) and have been so screwed up and in so much pain since.  Have only left the couch for food/water and to go to bathroom.  
 

Everything just locks up for me in the hours after these activities where I’m up and on my feet moving for a bit.  I start to feel a little tension in real time but it takes a while to really start to feel the impact.  
 

Hopefully I kind of return to my BIND baseline after sleep tonight. 

[[Ma...]]

Does anyone know of someone who is healed from this?

[[P3...]]

On 08/04/2024 at 09:20, [[d...] said:

I am surprisingly calm most of the time.   Just so used to all this now.  

My body and mind are not on the same wavelength.  

 

[[P3...]]

That's how I know it's NOT a real problem...my brain is making it up. That helps tremendously.