6 months off, couldn't get up stairs... tests normal... Bad wave, advice?

[[pr...]]

Hey Buddies,

 

So, to keep it short, I went to the ER the other day because I couldn't get up the stairs to my apartment.  I've had jelly legs off and on the last couple months.  One day, I can walk a couple miles or work out lightly.  A week or so later, out of nowhere, I'm walking like an old man.  I will say that I've been very blessed- the entire 6 months I've been in school and able to get work down and function.  There have only been a couple of weeks where I have had to stay home.  Usually, when I get a virus, it kicks me hard.  At the ER, they tested me and the blood work came back fine.  I've had thyroid issues in the past.  All clear.  Those came back from the primary care.  I've read about this before and I suppose I shouldn't be surprised, but... I am.  People go and get tests done because they think something is seriously wrong, and then... normal.  So... I got freaked out because I've never had it so bad that I couldn't literally take another step.  My body didn't have any output.  Now, I do believe that I started getting sick (cold / virus) that night, but didn't realize it until the day after when I'm coughing, feel hot, etc.

 

I don't want to belabor this post, but, I'm struggling, friends.  Things were doing well around month four and looking up, and now I've hit this 5-6 month mark and I feel like it is pushing back hard, especially with the emotional / mental stuff.  I feel like an emotional teenager at times and like my emotions are coming back.  And I have noticed old memories have been flooding back in the last week.  My final thing is, and I know that it may sound counter-intuitive, but I'm wondering if I actually need to pick up my exercise a bit and fight through it.  I know that over exertion can kick waves off, but I noticed about a month ago that if I worked out just about at the threshhold of when the hand shaking came on, I felt rough the next day, but I also felt stronger and the benefit mentally and emotionally outweighed the cost. 

 

Appreciate you reading my vent.  It's one of those days.  Feels like one of the worst days that I've had since the 2nd week off.  Realizing that I can't hold my emotions in either.  Hope y'all are well today.  Appreciate your support.  Wondering if the rest of the tests will come back normal and I have to "set my face like flint" as the good book says and prepare myself for victory.  I think I started to feel defeated because I actually starting thinking that there's no way this could still be benzo withdrawal and that something was terribly wrong.  Strange that in an odd way it's actually comforting to know, "Nope, it's still withdrawal..." because you can identify it and prepare yourself.  Here's to pressing onward. 

[[Da...]]

I had the same things going on as you at six months. I am at 13 months now, I have seen a lot of symptoms pass but I still am struggling with anxiety and cognitive issues. I feel like I'm completely mentally challenged. You should start to feel better soon.

[[er...]]

Hey,

 

I hear what you're saying, and to your question about exercise, all I can offer is my experience. 

 

I'm 47, and have been pretty active most of my life.  I played a ton of competitive sports, growing up, so that seems to be a "happy place" for me to be.

 

During my taper of 7 months, I had some harsh heart symptoms, that, in effect, prevented me from working out.  I did a big drop for my first "cut" and went from 3.5mg of clonazepam to 1.0mg, and my heart went haywire.  It stayed symptomatic till about 3 months after my jump.  During all of this time, I got really out of shape.  Lots of dizziness, head pressure, benzo belly, etc.. I gained some weight too, and generally felt like shit.

 

Anyway, after that, I began to work out hard, and I've been doing hard, cardio exercise and lots of stretching, at least 5x / week for the last 6 1/2 months, and it's been the best thing for me that I could be doing proactively in this whole benzo w/d mess.  I had the jelly legs too, but I've been riding the spin bike at the gym, and my legs are ripped now.  Sometimes it's true, I do feel weak, but I know it's just "symptoms" and that I'm much stronger than I was..

 

If I were you, I'd definitely start to exercise, and stay with it.  It helps our brains heal, makes me feel better emotionally and gives me some positive self esteem.  Maybe it will help you too?

 

Eric

[[pr...]]

Hey,

 

I hear what you're saying, and to your question about exercise, all I can offer is my experience. 

 

I'm 47, and have been pretty active most of my life.  I played a ton of competitive sports, growing up, so that seems to be a "happy place" for me to be.

 

During my taper of 7 months, I had some harsh heart symptoms, that, in effect, prevented me from working out.  I did a big drop for my first "cut" and went from 3.5mg of clonazepam to 1.0mg, and my heart went haywire.  It stayed symptomatic till about 3 months after my jump.  During all of this time, I got really out of shape.  Lots of dizziness, head pressure, benzo belly, etc.. I gained some weight too, and generally felt like shit.

 

Anyway, after that, I began to work out hard, and I've been doing hard, cardio exercise and lots of stretching, at least 5x / week for the last 6 1/2 months, and it's been the best thing for me that I could be doing proactively in this whole benzo w/d mess.  I had the jelly legs too, but I've been riding the spin bike at the gym, and my legs are ripped now.  Sometimes it's true, I do feel weak, but I know it's just "symptoms" and that I'm much stronger than I was..

 

If I were you, I'd definitely start to exercise, and stay with it.  It helps our brains heal, makes me feel better emotionally and gives me some positive self esteem.  Maybe it will help you too?

 

Eric

 

Eric- that's what I'm feeling man... I think you're on to something- I'm wondering if I'm a the place where I need to start pushing it a bit.  I've been a martial artist since 8 years old and I love to exercise, so not having that at a certain capacity is hard for me.  I noticed a couple a weeks ago that I went out and pushing it a bit and did this for a few days and I felt better.  When I hit a wave I kind of get scared and back off... What's interesting about it is, and I'm not saying that it's all mental because jelly legs are surely there when they are there, but they are... symptoms.  They won't kill me.  After having my bloodwork come back normal, I'm starting to toy with the idea that I need to retrain my body, albeit wisely, to get on with it and heal.  I think there is something to teaching our nervous system to adapt to stress and heal.  I had RSD in my left foot (all the nerves died up to the ankle) and by God's grace and serious discipline, the nerves came back over 9 months and you would never know if you saw my leg.  But this happened by soaking the foot in warm water every day and telling it to move, though it didn't.  After a few months, the big toe moved and that was the beginning of hope- I knew I was on to something.  Most people don't heal from RSD. 

 

Anyways, thanks for the encouragement, friends.  Would love any other input.  You guys and gals are awesome. 

[[pr...]]

I had the same things going on as you at six months. I am at 13 months now, I have seen a lot of symptoms pass but I still am struggling with anxiety and cognitive issues. I feel like I'm completely mentally challenged. You should start to feel better soon.

 

Davis,

 

Really appreciate your encouragement- that you were going through the same things.  Keep fighting, friend!  And know that you encouraged someone today.  Appreciate you!

[[Be...]]

My two cents, given my experience of having been slammed between 5-7 months off. My muscles tightened up. I was in agony, walking barely, like I was 90 years old. Lots of neuromuscular therapy helped relieve pain. And now, I'm better but still struggling. Still getting PT,  and exercising very gently. Even my pelvic floor is tight and causing hip pain. This by the way, is not just a female issue. I work on relaxing the muscles, not with intention to strengthen them.

 

So my point is, be careful you are doing the right kind of exercise. You don't need more tightness. You need your body to become adapted to loosening up. Benzos were great muscle relaxers, the best. But without them, it's a whole new ballgame.

[[Ex...]]

Right at 6 months and I got slammed so bad, I couldn't walk either. You are absolutely not alone. I was doing great thinking I was almost 100 percent before these brutal symptoms showed up, they have been worst than acute. I've missed several days of work, all I could do was lay on the couch. Good news is we are healing up, and I'm sure we all will start feeling better soon.

[[pr...]]

My two cents, given my experience of having been slammed between 5-7 months off. My muscles tightened up. I was in agony, walking barely, like I was 90 years old. Lots of neuromuscular therapy helped relieve pain. And now, I'm better but still struggling. Still getting PT,  and exercising very gently. Even my pelvic floor is tight and causing hip pain. This by the way, is not just a female issue. I work on relaxing the muscles, not with intention to strengthen them.

 

So my point is, be careful you are doing the right kind of exercise. You don't need more tightness. You need your body to become adapted to loosening up. Benzos were great muscle relaxers, the best. But without them, it's a whole new ballgame.

 

Bennie,

 

It's amazing you say this because it's like this is the stage of muscle tightness.  It's incredible.  Old things moved out, this moved in.  Thanks for your encouragement.  You're right, and I really want to find out how I can walk the line of rest and yet getting some exercise in.  It's so hard to just rest!!!

[[pr...]]

Right at 6 months and I got slammed so bad, I couldn't walk either. You are absolutely not alone. I was doing great thinking I was almost 100 percent before these brutal symptoms showed up, they have been worst than acute. I've missed several days of work, all I could do was lay on the couch. Good news is we are healing up, and I'm sure we all will start feeling better soon.

 

Existentially,

 

So encouraging friend... I'll be honest, this turn has really shocked me.  I thought 6 months would be better than 3/4.  I know that there are a lot things that are better, but this last wave... holy smokes.  I didn't think it was withdrawal anymore... nope, it had to be something else.  Really appreciate all of the encouragement here. 

[[pr...]]

The other thing that really surprised me is that I haven't had much emotional / mental struggle (especially intrusive thoughts) for almost a month.  Then all of the sudden in the last couple of days... just hit me hard.  I do believe getting a virus or being sick just messes everything up.  I can say that for sure.  Anxiety and depression go up.  Today I felt like it was bouncing back and forth between the two, then it would go away and open up like a window, then come back.

[[Be...]]

The other thing that really surprised me is that I haven't had much emotional / mental struggle (especially intrusive thoughts) for almost a month.  Then all of the sudden in the last couple of days... just hit me hard.  I do believe getting a virus or being sick just messes everything up.  I can say that for sure.  Anxiety and depression go up.  Today I felt like it was bouncing back and forth between the two, then it would go away and open up like a window, then come back.

 

My mind has been very clear for a very long time, since before jumping. I am grateful for the consistency of that. Nothing has really set that back.

 

However, I either have a virus or ate something the other night that didn't set right. Since then i have had a headache, head pressure, nausea, retching and my stomach is doing flip flops—on top of the muscle pain. I feel so out of it. My tolerable baseline has been pulled out from under me the last several days. I know how to deal with the repetitive nature of things better than this being a wave.

 

I too feel like I've been bobbing in and out of ok, not ok. Hopeful, then dragged down. Mindfulness meditation and breathing are all imcan do. Barely.

 

We will pull out. It's inevitable!

 

 

[[Ph...]]

Nothing remains the same.  It all moves, changes.  We get this delusion in our heads sometimes like "uh oh, this is awful, this is it, this is the way it's gonna be."  Nah, it never is.  I have the same thing you have, like in the evening I'm walking around like an old man.  Then I have a better day.  Then there are nights I don't sleep a wink and I think, oh no, I'll never sleep again, I'm toast.  And then I do.  But yeah, it's good to vent because things do get us down sometimes.  It's good therapy to vent.  Oh and your old memories flooding back, it's weird isn't it?  I'm remembering things that happened in my childhood, even trivial little things.  Kind of enjoying it, actually.

 

You've paid your dues.  Be at peace and be thankful you're alive, my friend.

[[Ex...]]

Right at 6 months and I got slammed so bad, I couldn't walk either. You are absolutely not alone. I was doing great thinking I was almost 100 percent before these brutal symptoms showed up, they have been worst than acute. I've missed several days of work, all I could do was lay on the couch. Good news is we are healing up, and I'm sure we all will start feeling better soon.

 

Existentially,

 

So encouraging friend... I'll be honest, this turn has really shocked me.  I thought 6 months would be better than 3/4.  I know that there are a lot things that are better, but this last wave... holy smokes.  I didn't think it was withdrawal anymore... nope, it had to be something else.  Really appreciate all of the encouragement here.

 

Lol, "Holy smoke" is right. I can laugh about it today, but a couple of weeks ago, it was no laughing matter. I couldn't stand up, or when I did I was so dizzy, It felt as though when I was walking, someone was pulling me from behind. I felt like I was headed for the ground. Like I was in an all out fight with gravity, and gravity won. I was in the store when it happened, so I immediately asked for the keys and I some how made it to the car where I tried to calm myself. By the time my husband made it to the car, I was telling him to please take me home because something was not right. He wanted to know what was going on, but I didn't know how to explain it. We got home, and I just laid there all night. The next day it happened again, so I told my husband I needed to go to ER. Once I got there I told them everything I was going through, and they all but laughed me out of there. They did check my blood, my heart and thyroid. But they thought I was being irrational, so I went home with no clear understanding as to what the hell was going on. The scariest time of my life, it was acute on steroids. I just knew I was about to die, I felt very ill, and I was so detached from the world I felt like I was king in between life and death, and my anxiety....forget about it....it was so high I think I was about to faint, on several occasions. I was in panic mode all day for about a week, all day every day. It started to get better, then I was thrown back in. It's been a little over 3 weeks, and its been pure hell, a nightmare. I'm still not feeling like myself, but things have calmed a bit. Good news is at least we are at the 6th month mark, and will soon be leaving it behind. From what I hear, you "turn the corner" after the 4th\5th\6th month. I know it's been a hard ride for you, but you are not alone.

[[Ex...]]

The other thing that really surprised me is that I haven't had much emotional / mental struggle (especially intrusive thoughts) for almost a month.  Then all of the sudden in the last couple of days... just hit me hard.  I do believe getting a virus or being sick just messes everything up.  I can say that for sure.  Anxiety and depression go up.  Today I felt like it was bouncing back and forth between the two, then it would go away and open up like a window, then come back.

 

Yep, that's been my experience exactly. I was hit with the thoughts as well, and I still suffer greatly especially in the mornings. The mornings are rough for me again. I also have been struggling with sinus, I ended up having to get saline to try to flush my sinus. Sinus is better today, but now I have a boil, right on my ass. I'm guess it's from all the stress, I've went through in the last  few weeks, it's been a really really hard time.

[[sa...]]

hey pressingonward,

 

to reply to your original question regarding exercise: in my withdrawal experience.. yes yes yes! i generally go for long runs and i try to push myself. this is all under the precursor that you feel well enough to do it, but there are so, so many benefits to exercising. As you mentioned, it truly causes are brains to kick into high gear and facilitates healing, you are releasing stored energy -- like a release of anxiety, it boosts all the right chemicals, and bonus, you are staying fit!

 

so, yeah, im definitely in the workout to the best of your ability camp! it's so worth it.

[[sa...]]

also, don't fret that you're ACTUALLY that much weaker. it's just the waves and the nervous system misfiring. you're actually probably much stronger than you think / that your brain is able to comprehend and enact some days.

[[pr...]]

Nothing remains the same.  It all moves, changes.  We get this delusion in our heads sometimes like "uh oh, this is awful, this is it, this is the way it's gonna be."  Nah, it never is.  I have the same thing you have, like in the evening I'm walking around like an old man.  Then I have a better day.  Then there are nights I don't sleep a wink and I think, oh no, I'll never sleep again, I'm toast.  And then I do.  But yeah, it's good to vent because things do get us down sometimes.  It's good therapy to vent.  Oh and your old memories flooding back, it's weird isn't it?  I'm remembering things that happened in my childhood, even trivial little things.  Kind of enjoying it, actually.

 

You've paid your dues.  Be at peace and be thankful you're alive, my friend.

 

PhotoBug,

That's some straight encouragement right there, friend.  Thanks.  That's been the same for me- I think one thing is going to be a certain way "forever" or for a time because one thing happens, i.e. the jelly legs or whatever, and then it goes.  Like an earlier poster said, I really think that ignoring them as symptoms and pushing myself to integrate even further into life is what I need to do.  To just treat it as a symptom... to not let it bother me, in fact, drive me on.  But not to give it attention, at all.  Yes, the memory thing is odd and I found myself doing the same thing- enjoying it.  Been great to kind of soak in some of the memories of my childhood. 

 

Love your last line.  Grateful to be alive.  Amen to that.  Thx for your response. 

[[pr...]]

Right at 6 months and I got slammed so bad, I couldn't walk either. You are absolutely not alone. I was doing great thinking I was almost 100 percent before these brutal symptoms showed up, they have been worst than acute. I've missed several days of work, all I could do was lay on the couch. Good news is we are healing up, and I'm sure we all will start feeling better soon.

 

Existentially,

That was about my experience and yeah, I can laugh at it now too.  My wife and I were able to have a good chuckle at about 2am, still at the ER and I'm sneaking food because I'm starving and not being a "good boy."  A thought on where we are at- I really think we need to be careful to give our symptoms strength.  For example, I'm feeling borderline panic this morning... for no reason.  Feels that way in my head and my nerves feel kind of overloaded.  Now, this could be the truth, or it can be my perception of a symptom.  I know we need to be careful here because we don't want to overexert ourselves and we want to be confident in our decisions, but... it's like intrusive thoughts or when the "black depression" used to or still does roll in- how do we handle that?  Well, in and of itself, it is not going to kill us.  It hurts, it "feels" a certain way, but I've found that when that rolls in, I can still laugh and have found it to be incredibly relieving and distracting, almost to the point where it turns it right around.  This is the odd thing, we can bounce back and forth between anxiety and depression, walking and not walking... There's something happening for sure, but I'm starting to lean toward this tell my mind and body what to think and do, and I'll get a response, whatever that may be.  Now, I would say this for someone who is just coming off, but at this mark, I do believe we have some wiggle room and may actually turn the corner faster if we set to be positive, interpret symptoms in a positive light (even laughing about it, or "here it is again!") and barreling through it.  Anywho, I appreciate your responses.  Nice to have a buddy that's right there alongside.  We truck on.  Haha.

So encouraging friend... I'll be honest, this turn has really shocked me.  I thought 6 months would be better than 3/4.  I know that there are a lot things that are better, but this last wave... holy smokes.  I didn't think it was withdrawal anymore... nope, it had to be something else.  Really appreciate all of the encouragement here.

 

Lol, "Holy smoke" is right. I can laugh about it today, but a couple of weeks ago, it was no laughing matter. I couldn't stand up, or when I did I was so dizzy, It felt as though when I was walking, someone was pulling me from behind. I felt like I was headed for the ground. Like I was in an all out fight with gravity, and gravity won. I was in the store when it happened, so I immediately asked for the keys and I some how made it to the car where I tried to calm myself. By the time my husband made it to the car, I was telling him to please take me home because something was not right. He wanted to know what was going on, but I didn't know how to explain it. We got home, and I just laid there all night. The next day it happened again, so I told my husband I needed to go to ER. Once I got there I told them everything I was going through, and they all but laughed me out of there. They did check my blood, my heart and thyroid. But they thought I was being irrational, so I went home with no clear understanding as to what the hell was going on. The scariest time of my life, it was acute on steroids. I just knew I was about to die, I felt very ill, and I was so detached from the world I felt like I was king in between life and death, and my anxiety....forget about it....it was so high I think I was about to faint, on several occasions. I was in panic mode all day for about a week, all day every day. It started to get better, then I was thrown back in. It's been a little over 3 weeks, and its been pure hell, a nightmare. I'm still not feeling like myself, but things have calmed a bit. Good news is at least we are at the 6th month mark, and will soon be leaving it behind. From what I hear, you "turn the corner" after the 4th\5th\6th month. I know it's been a hard ride for you, but you are not alone.

[[pr...]]

also, don't fret that you're ACTUALLY that much weaker. it's just the waves and the nervous system misfiring. you're actually probably much stronger than you think / that your brain is able to comprehend and enact some days.

 

OK, SO... THAT'S WHAT I'M THINKING!  At the ER, the doc was checking my musculature, reflexes, and he says, "No, you're really strong... nothing looks off..."  I think we're on to something!  I'm not going to go out and run a marathon for sure, but I think it's time to push myself.  So, I'm currently at school... I sit ALL DAY.  From 8 to 5.  It is an intense one year program.  This couldn't walk up the stairs event happened at the end of the day.  Generally always gets worse by the end of the day.  One, I do think the nervous system gets tired.  So that is a reality.  BUT, I think sitting all day is not helping.  I try to get up around 930 and 230 and get outside and walk or stretch, but right now, I think I need more movement.  Hmm... I appreciate the encouragement and especially this comment about weakness.  I think my muscles are weaker than I perceive, but also stronger than I know.  My nerves respond and react weird and I can't tell where I'm at.  Cheers!