Leg weakness/jelly legs--10 months off and beyond

Hi all, I hope all is well. Yep...10 months off. Amazing! What is not so amazing is an old symptom came back to visit me in month 9 (leg weakness/jelly legs). 

 

Anyone else dealing with this or dealt with it this far out? Soometimes when I stand still they quiver.

 

A little discouraged. Balance issues is enough but to top it off with weakness is overboard.

 

Praying for each of us.

I had this last week in the midst of Month 9, and it vanished after a few days.  I can't explain it.

I don't remember when this hit me, but I had weakness in arms and legs for awhile...not long.  The balance issues were worse and came and went for some time.  I guess just different parts of the body trying to fire up again.

Hi LM, yes it's with me most of the time, especially when I get up in morning, balance, jelly legs and minor leg cramps here and there.  It usually comes back in late afernoon.  Sometimes it lasts a few minutes, other times it's here all the time, especially when I'm in a wave.  It's lessening though!  It will for both of us!

 

MG

Hi LM, yes it's with me most of the time, especially when I get up in morning, balance, jelly legs and minor leg cramps here and there.  It usually comes back in late afernoon.  Sometimes it lasts a few minutes, other times it's here all the time, especially when I'm in a wave.  It's lessening though!  It will for both of us!

 

MG

 

It's scary, there are times I'm standing and my legs shake. It comes and goes, but hit me hard in the 9th month and now I'm in the 10th month. I know it will get better...it's just baffling.

 

Thank you all for the reassurance. I walk so close to the walls and anything stable. My God...I want my life back. Asking Him to heal me and us all.  :'(

And yes...the balance issues don't help at all. 

Hi LM, yes it's with me most of the time, especially when I get up in morning, balance, jelly legs and minor leg cramps here and there.  It usually comes back in late afernoon.  Sometimes it lasts a few minutes, other times it's here all the time, especially when I'm in a wave.  It's lessening though!  It will for both of us!

 

MG

 

It's scary, there are times I'm standing and my legs shake. It comes and goes, but hit me hard in the 9th month and now I'm in the 10th month. I know it will get better...it's just baffling.

 

Thank you all for the reassurance. I walk so close to the walls and anything stable. My God...I want my life back. Asking Him to heal me and us all.  :'(

 

 

Awww sweety, I'm sorry  I know it's so rough, and you are carrying a heavy load dear Sister, but know he is with you.  You WILL get through this.  You are over halfway there!

 

I had it less in month 6, then month 7 was a nightmare.  Now month 8 is much better, and that MCT oil seems to be helping.  Have you read Perseverance's thread on Alternative supplements, etc?

 

My left leg is the trouble leg, I call it my "weak leg".  I'm not sure at times if it will support me, and right knee has serious issues prior to all this, so it can be a scary deal, I get is Sis.  Ask him for comfort   he will give it, he has me many times over the years in bad circumstances.  I know I couldn't get through this without him, and I know you feel the same   I'm here if you want to talk, message me hon. 

 

MG

Hi MountainGirl,

 

I have had weakness, particularly on my right side and strangely at times my right leg since I was in tolerance withdrawal, even when I was on zopiclone (z-drug similar to benzos).  I noticed this about 2 years before I started to withdraw from the drug, while I was in tolerance withdrawal.  It got a bit better over the 9 months I carefully titrated down and withdrew, has gone away at times even over the past 21 months that I've been in withdrawal but interestingly, it is back this past few weeks as I'm in a quite awful wave that has lasted about 3 months.

 

Sorry to report that this is still an issue, 21 months off but it hasn't been uniformly an issue, and has "gone away" for months.

 

I'm so sorry that you are having balance issues on top of this.  I had vertigo for one week, 3 years ago, the only symptom from a strange virus.  Awful week - my heart goes out to anyone who is suffering in this way.  I cannot imagine.

 

Stay strong, never doubt for a moment this is withdrawal and you will recover.  We don't know when and how, but recovery happens for most of us.  Hope this helps.

 

SS

Hi MountainGirl,

 

I have had weakness, particularly on my right side and strangely at times my right leg since I was in tolerance withdrawal, even when I was on zopiclone (z-drug similar to benzos).  I noticed this about 2 years before I started to withdraw from the drug, while I was in tolerance withdrawal.  It got a bit better over the 9 months I carefully titrated down and withdrew, has gone away at times even over the past 21 months that I've been in withdrawal but interestingly, it is back this past few weeks as I'm in a quite awful wave that has lasted about 3 months.

 

Sorry to report that this is still an issue, 21 months off but it hasn't been uniformly an issue, and has "gone away" for months.

 

I'm so sorry that you are having balance issues on top of this.  I had vertigo for one week, 3 years ago, the only symptom from a strange virus.  Awful week - my heart goes out to anyone who is suffering in this way.  I cannot imagine.

 

Stay strong, never doubt for a moment this is withdrawal and you will recover.  We don't know when and how, but recovery happens for most of us.  Hope this helps.

 

SS

 

Thank you SS and Mountain Girl! Very needed. Yes SS...balance issues (just feeling off) on top of leg weakness. For months!

 

God has to hear me, I know He sees me crying, he sees me raising my 3 year old (solo...not by choice), he sees I've endured a lot! I just wish whatever it is would just kick in so I can cross the finish line symtom free.

 

Hey MG...what oil are you talking about? Could you PM me???

 

Praying for us all...about to walk closely to walls so I can warm up my lunch.  :'(

So here's a question...does anyone try and work out with leg weakness? Not intensive work outs but mild...I was doing yoga and tai chi but stopped some of it due to my legs.

 

Not sure what to do.

I am dealing a lot more with severe aches in my legs, spasms and pain. It started several weeks ago. Since it seems you are all  farther along then me, is this normal at this stage? It started at 5 months. I've had similar symptoms in the past but it always lessened within a week. Does this eventually go away too?

I am dealing a lot more with severe aches in my legs, spasms and pain. It started several weeks ago. Since it seems you are all  farther along then me, is this normal at this stage? It started at 5 months. I've had similar symptoms in the past but it always lessened within a week. Does this eventually go away too?

 

It's an up and down process. I had weak legs a while ago, they got better and last month into this one slammed with it again. But yes...it does go away. Talking to so many who had numerous symptoms come and go and they finally left for good.

 

Sorry you're going through this leg thing as well. It is daunting.

I am dealing a lot more with severe aches in my legs, spasms and pain. It started several weeks ago. Since it seems you are all  farther along then me, is this normal at this stage? It started at 5 months. I've had similar symptoms in the past but it always lessened within a week. Does this eventually go away too?

 

 

Cactus, I've had them since month 3 really bad.  Got so bad I thought I would tear muscles, tendons & ligaments, and read from a buddy on here it can happen, and need surgical repair.  Scary stuff!  I got on inositol & L-theanine, now I keep them at a minimum as long as I take the L-theanine every 4 hours regularly.  I forgot to take a flexeril a few weeks ago and ended up cramping bad again, even butt muscles.  The nerve pain is bad at times also, but inositol & L-theanine help with that too.  Have you tried either?  there's a thread on inositol on Alternative stuff.

 

Hugs, MG

I have l-theanine but I haven't tried it in a while as it aggravated my symptoms before. I've never tried the other. I'll look at the other board to learn more. Thanks!

I have l-theanine but I haven't tried it in a while as it aggravated my symptoms before. I've never tried the other. I'll look at the other board to learn more. Thanks!

 

Cactus,

 

Are you sure it was the L-theanine?  I know we are all different of course, but it's very calming, soothing.  It's one of a few things that hasn't ramped me up.   I just started taking Alpha Lipoic Acid again also, 300mg 2x a day.  It helps with nerve pain, and works on the gluthaione in the brain, the stuff that keeps glutamate under control.  Seems to be helping, only taken it 3 days and it can take a week or two for full effects.  Also have NAC on the way, studied on it for a whole day, it's benefits are amazing!  It should help keep the anxiety at bay, which is something I will need tapering off my beta blocker soon.  I looked at it before, wish I had tried it.  Seems peeps heal up fast on it, some anyway.

 

MG

Yep. 100% sure it was l-theanine I have the bottle in front of me and I've taken it on and off for years. It sometimes helped in the past but recently every supplement other than fish oil and d3 seems to increase symptoms... including the theanine. I'm doing really well with getting additional vitamins through foods though. My doc determines what might help then finds foods for me to try. She said maybe in a few months I might be able to reintroduce more supplements again. I hope so. Last time, I got off Xanax the supplements were so helpful. This time my body is saying no to almost everything.

Cactus, you are still early out, it will get better for you soon.  The muscle cramps, nerve pain, benzo belly and others hit me about 2-3 months out and are just now easing up at almost 9 months CT.  My hair is growing back in too.  Only things are cramps, nerve pain, bleary eyes, and I have conjunctivitis today, ugh.  I finally feel like I've turned a real corner after month 7 being horrible.  I can eat pretty much anything I want, but still have to keep supplements and herbs at a minimum.  7 months ago my husband forced fed me, I just couldn't eat, was that way for 2 yrs in tolerance WD.  You have been here before, so you have more insight than most, you know what works & doesn't.  Too bad about the L-theanine, it really helps my cramps. I can walk now without awful pain in legs as long as I take it throughout the day.  It also is a champ for helping me sleep and get back to sleep if I wake up.

 

Hope you get some relief!  Here's to total healing, and quickly!

 

Thanks, Mountain. I appreciate the reply! It is helpful to hear of your healing and I really appreciate your encouragement a lot. You are right, here's to quick and complete healing!!

Yes I have weak legs too.  I developed neuropathy after getting off Benzes

in both feet and legs.  I push myself .  I go to the gym 2x a week.  I walk about a mile on treadmill and bike about 2 miles. Actually my whole body seems week. The gym seems to help.

Yes I have weak legs too.  I developed neuropathy after getting off Benzes

in both feet and legs.  I push myself .  I go to the gym 2x a week.  I walk about a mile on treadmill and bike about 2 miles. Actually my whole body seems week. The gym seems to help.

 

 

I literally couldn't exercise, very short walks, less than 1/4 mile.  I got brave one day and had my calf muscle "roll", it was so painful!.  Even at 9 months out I'm just getting to where I can do a tiny bit more.  I started taking ALA-Alpha Lipoic Acid, and it's really helping the nerve pain and cramps.

 

 

I have l-theanine but I haven't tried it in a while as it aggravated my symptoms before. I've never tried the other. I'll look at the other board to learn more. Thanks!

 

Cactus,

 

Are you sure it was the L-theanine?  I know we are all different of course, but it's very calming, soothing.  It's one of a few things that hasn't ramped me up.   I just started taking Alpha Lipoic Acid again also, 300mg 2x a day.  It helps with nerve pain, and works on the gluthaione in the brain, the stuff that keeps glutamate under control.  Seems to be helping, only taken it 3 days and it can take a week or two for full effects.  Also have NAC on the way, studied on it for a whole day, it's benefits are amazing!  It should help keep the anxiety at bay, which is something I will need tapering off my beta blocker soon.  I looked at it before, wish I had tried it.  Seems peeps heal up fast on it, some anyway.

 

MG

 

Actually I was on L-Theanine and it threw me through a serious loop! Revved me up, threw my balance off more :-( it was bad. I tried Kava, Valerian (before I knew the effects on the gaba receptors)...horrible.

 

I guess everyone is definitely different.

Not sure if any of you are off balance but there is now a thread in the support groups for disequilibrium/off balance/floaty/etc

 

http://www.benzobuddies.org/forum/index.php?topic=128947.0

LovingMother, thanks for that reply.  I appreciate it!  I know that everyone is different.  It did the same thing to me this time - although I had taken l-theanine for years in the past (which either helped a little or did nothing).  This time around it really increased my symptoms.  It is nice to know I am not all alone on this one.