Seriously, what is going on with my muscles?

[[dj...]]

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.  

[[WU...]]

Yep, pretty insane for me too.  I suppose the brain is going through the process of rebooting, it gets to a certain stage and then goes back to the beginning again. Who knows.....

[[dj...]]

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

[[dj...]]

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

Yep, pretty insane for me too.  I suppose the brain is going through the process of rebooting, it gets to a certain stage and then goes back to the beginning again. Who knows.....

My muscle issues have gotten progressively worse since I jumped 18 months ago.  Like much worse and in a steady backwards direction.  I do wonder if I have something else but I think only BIND can be this crazy.  Have been to neurologist and ruled out other stuff, including Stiff Persons Syndrome.  

[[Ma...]]

What about physical therapy? As in neurological physical therapy. Google to see if there is 1 near you perhaps.

I know being bed/couch (bed) bound for 18 months is just adding problems to my all ready present problems. The brain swooshing (lying horizontal longer than a normal human being), obvious muscle atrophy leading to weakness, surely the dizziness can be attributed to being inside. Basically immobile. You know the saying, A body at rest stays at rest…

2 days ago I began walking 10,000 + steps each day and am going to force more. I’m surprised I haven’t fainted, but I haven’t so there’s that. And the fresh air I can tell is helping.

Now the crippling exhaustion means I nap in between, but I am hoping this will also build stamina.

I’m also gaining tons of weight even though am vegan. Motion is key. Movement. And maybe the Neuro PT will help you 🤞🤞🤞

Edited April 7 by [Ma...]

[[dj...]]

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  

 

 

[[Ca...]]

Interesting topic. I have been in bed during the day for a few months. I had to updose from 12.2 mgs of valium to 14 to try and stabilize. I started at 40 plus clonapin two years ago. Well I did get back to walking and after the fourth day I can no longer stand on my right leg for longer than 2 seconds without the left foot being on the ground and I am limping when I walk. I would need a cane I think to walk outside. This started April 2. The thought of seeing an ortho doctor makes me want to pull the covers over my head.

[[Re...]]

5 hours ago, [[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  

Unfortunately, I relate. I am sorry to hear that you are experiencing this. I have had a lot of muscle stuff like this. I do worry about the future as someone who used to love to exercise and be active.

[[bu...]]

19 hours ago, [[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.  

yes its all normal. i get different symptoms too. stinging pains, body aches bone pains all sorts. excersise is key, even if its just small walks arounf the house or park. sitting and lifting some small weights. get the brain to produce endorphins which help pain and healing. dont sit around all day its the worst thing to do. unless you are bed bound then just start very slow movements. the drugs relax muscles in the beginning and now they are waking up and the brain is all confused so it sends more pain to protect us from the drug. we have to retrain our brains xxx

[[dj...]]

4 hours ago, [[b...] said:

yes its all normal. i get different symptoms too. stinging pains, body aches bone pains all sorts. excersise is key, even if its just small walks arounf the house or park. sitting and lifting some small weights. get the brain to produce endorphins which help pain and healing. dont sit around all day its the worst thing to do. unless you are bed bound then just start very slow movements. the drugs relax muscles in the beginning and now they are waking up and the brain is all confused so it sends more pain to protect us from the drug. we have to retrain our brains xxx

It’s complicated but true exercise as we know it is the last thing I want to do because there isn’t an amount my body can handle.  Can’t go on walks, even just going around the block will ruin the rest of my day.  I have tried this many times.  I was either biking 10-15 miles a day or going to the gym each day before this all started.  Exercise has been my main release for years and it kills me that I can’t tolerate anything.  I go into more detail to what is happening a few posts up.  
 

I understand what you’re saying about doing small things.  I do get up and get out in spurts.  I get off the coach quite frequently, just not for long because being on my feet starts the pain and tension.  I have kids 2-3 days a week and they require a lot of movement.  Have their games/activities to do. I’ve taken to going on short drives with the window down just to get out and smell the air.  
 

What I could possibly do is the Peloton at very low resistance and speed.  I told my ex-wife she could keep it for now since I can’t really use it, but I’m going to reconsider that.  Will have to get someone to move it for me though. 

Edited April 8 by [dj...]

[[Fi...]]

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

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

this made me laugh, it definitely would be awesome.

[[Fi...]]

10 minutes ago, [[d...] said:

It’s complicated but exercise is the last thing I want to do because there isn’t an amount my body can handle.  Can’t go on walks, even just going around the block will ruin the rest of my day.  I have tried this many times.  I was either biking 10-15 miles a day or going to the gym each day before this all started.  Exercise has been my main release for years and it kills me that I can’t tolerate anything.  I go into more detail to what is happening a few posts up.  
 

I understand what you’re saying about doing small things.  I do get up and get out in spurts.  I get off the coach quite frequently, just not for long because being on my feet starts the pain and tension.  I have kids 2-3 days a week and they require a lot of movement.  Have their games/activities to do. I’ve taken to going on short drives with the window down just to get out and smell the air.  

I  started doing more yoga and suffered miserably for weeks...maybe months.  now it seems to have settled.  I    was at a point where im like well...im just in pain no matter what so might as well do something good for my body---its not the best mentality I    had, I    was disgusted with all of this but I    pushed through it and now besides fatigue physically am feeling better.  I  use the yoga as rehabilitation...I    walk sometimes but feel weird, temperature extremes will set my nerves off, I'll tremble.  too hot , my heart rate will shoot up to 160 while standing, cold ill just tremble until I    get comfortable.  its annoying, but it is what it is for now, I    hope you feel better soon.  we will heal in time.  

 

love,

fierce

[[dj...]]

4 minutes ago, [[F...] said:

I  started doing more yoga and suffered miserably for weeks...maybe months.  now it seems to have settled.  I    was at a point where im like well...im just in pain no matter what so might as well do something good for my body---its not the best mentality I    had, I    was disgusted with all of this but I    pushed through it and now besides fatigue physically am feeling better.  I  use the yoga as rehabilitation...I    walk sometimes but feel weird, temperature extremes will set my nerves off, I'll tremble.  too hot , my heart rate will shoot up to 160 while standing, cold ill just tremble until I    get comfortable.  its annoying, but it is what it is for now, I    hope you feel better soon.  we will heal in time.  

love,

fierce

Whatever I do has to be something where I’m not on my feet for long.   That’s why I mentioned a stationary bike.  The threshold for what I can handle moves every day, so it’s difficult.  I feel like everything is a Catch-22 right now. 

[[WU...]]

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

I feel like everything is a Catch-22 right now. 

Yes that's how I feel. I have a stationary bike but it doesn't help so I've stopped using it. There is nothing wrong with our muscles anyway, it is the signalling from the brain that is the problem.  There doesn't seem to be anything we can do except not worry about it so much, forget the calendar and just get through each day the best we can.

[[bu...]]

its tough i know, there are no rules to this. what i can say is the brain will fight back with symptoms whenever you push, so self soothing is needed. push a little then rest then a bit more. build it as slow as you need to. check out the mindful gardener and dan buglio on youtube. its not specific to withdrawal but the reasons why the brain sends symtoms is the same. the fight flight is going crazy lol. we can calm our systems down before and after activities. telling the brain we are okay (even if we feel like death) 

[[dj...]]

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

Yes that's how I feel. I have a stationary bike but it doesn't help so I've stopped using it. There is nothing wrong with our muscles anyway, it is the signalling from the brain that is the problem.  There doesn't seem to be anything we can do except not worry about it so much, forget the calendar and just get through each day the best we can.

That’s good advice.  
 

I have learned that a little movement is good when I wake up or when I am stationery too long.  It keeps things from getting too stiff and just gets the muscles some proper use.  But stiffness is just one facet in all this.  
 

It’s clearly the brain and is so far beyond anything anything I’ve ever experienced.  Different universe.  If anyone has insight on how to work the part of the brain that signals to release GABA or whatever, I’m all ears.   

[[bu...]]

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

That’s good advice.  
 

I have learned that a little movement is good when I wake up or when I am stationery too long.  It keeps things from getting too stiff and just gets the muscles some proper use.  But stiffness is just one facet in all this.  
 

It’s clearly the brain and is so far beyond anything anything I’ve ever experienced.  Different universe.  If anyone has insight on how to work the part of the brain that signals to release GABA or whatever, I’m all ears.   

i have searched and searched for answers to make gaba. The only thing we can use is neuroplasticity tools to regulate, and show our brains we are actually safe. I know people who have healed doing this. not easy tho! who knows why one brain heals faster than another. I have theories, but who really knows? know one lol

[[dj...]]

8 minutes ago, [[b...] said:

i have searched and searched for answers to make gaba. The only thing we can use is neuroplasticity tools to regulate, and show our brains we are actually safe. I know people who have healed doing this. not easy tho! who knows why one brain heals faster than another. I have theories, but who really knows? know one lol

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.  

[[Fi...]]

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

Whatever I do has to be something where I’m not on my feet for long.   That’s why I mentioned a stationary bike.  The threshold for what I can handle moves every day, so it’s difficult.  I feel like everything is a Catch-22 right now. 

I    understand that all too well.  I    want a routine, but each day is completely unpredictable.  Maybe try a stationary bike, sounds good to me.  I    know what you mean about going from being super active to debilitated.  It can be disheartening, I    forgot to mention my compassion for you.  I    am sure you will find something that makes you feel a bit better, it might just take a bit of trial and error (which I    absolutely dislike and prefer not to do either, I    fear triggering a wave).  I    know something will work out for you in realm of exercise...you seem resilient and determined.

 

Love,

Fierce

[[WU...]]

28 minutes ago, [[b...] said:

we can calm our systems down before and after activities. 

That's the trouble though, we can't! I listen to Dan Buglio too, he's great,  but we are in a different situation here as our brains have been altered. We can still use those skills to teach our brains we are safe but even if we are wrapped in cotton wool and as safe as houses our brains would still be kicking off until those pesky GABA receptors are working properly again

[[bu...]]

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

That's the trouble though, we can't! I listen to Dan Buglio too, he's great,  but we are in a different situation here as our brains have been altered. We can still use those skills to teach our brains we are safe but even if we are wrapped in cotton wool and as safe as houses our brains would still be kicking off until those pesky GABA receptors are working properly again

You're right. Our brains have been altered, and we can't make changes the right way and just jump into fitness and say, im safe. but we can create neural pathways that we need due to long term being sick. Even if all that is, is a new pathway of walking to the bathroom and back, building up to the garden. we will still feel sh it, but we will have those pathways getting stronger, which will help when we are off the drug and start to heal; they will be there already rather than starting from scratch. if that makes any sense lol. I do believe people heal on the drugs as i have spoken to a few. It's rare, most likely, but they exist, lol. For me, if I stay on the sofa all day, my symptoms get worse, but if I push and rest push and rest, I get fewer symptoms most of the time. and i may crash and start again as this process is so up and down. I talk to my brain all day and use v can do more. i feel crap but the fear goes down more, and i get little windows of hope : ).  I know some people are bedbound and housebound, I've been there, and it takes every bit of you to push just that little bit to fight back, but we have to help ourselves as much as we can. even if it is only wiggling are toes and arms when stuck in bed. I prey one day some neuro scientist comes up with some gadget that can make the brain heal fast and switch off the bad signals and turn the good ones back on.

[[Ma...]]

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…

Edited April 8 by [Ma...]

[[dj...]]

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.  

Edited April 8 by [dj...]

[[Ma...]]

I get it @[dj...]. I really do. 

Just sharing, nothing more…

Edited April 8 by [Ma...]

[[WU...]]

58 minutes ago, [[d...] said:

neural pathway stuff

Agree with you. It is not as if I don't know how to walk around the block and have to teach myself how to do it. I know perfectly well what I need to do but my brain just isn't cooperating for the time being. 

However we could try visualizing doing more things as we are told the brain doesn't know the difference ....hmmm not sure that is entirely true but it won't hurt to try. I might visualize doing a massive ski jump later considering I've never skied in my life!