A question for "burners"

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Ever since the Valium I've had off and on burning as those who know me already know. The last few days have been borderline insufferable with it and yesterday, I knew I was getting a cold/flu etc and my fever spiked to 103. This isn't the kind of burning I mean. Yesterday I just slept, took Tylenol and hoped for the best. Today my fever is down thank goodness or I'd be at the doctors. I feel like I got hit by a truck. But it's definitely not flu related. Been going on for months. For those who get this has it ever gotten better the lower you go in your taper? I'm not exaggerating when I say it's like I'm totally immersed in scalding water. I'm assured it's just withdrawal but when it's at it's worst that's not much comfort. Has it left anyone at lower doses? Can barely focus at the moment. B

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Barb, I have the burning a lot. I too am getting a cold and it's been pretty bad - wierd thing is yesterday it was pretty minimal but today it's back with vengeance. I don't know what to make of this Sxs.  It's mostly in my legs and Right hand. I'm getting lower on the Valiun. I just cut a few days ago. So hopefully it will diminish as I get lower, I'll keep you posted.

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Thanks Mena...yes it's a nasty sxs but I'm still on 11mg. Way more than you. Scream. Please keep me posted. Other than the sleepiness this is the very worst sxs for me. Keep on going though. You're almost there.    Barb

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Barb, I'm very sensitive I know I'm low but I'm non functional.  Walking is a chore. I'm on the couch all day. Stairs are horrible.  I'm hoping this will change as I go lower, or maybe it will change when I get off completely. All I do is cry because I have no quality of life. Still have agorapobia and pain in my joints.  I'll keep you posted on the burning.

[[be...]]

I'm pretty weak too and yes the agoraphobia has reared its ugly head. I guess we can suffer together because LOL 😂 misery loves company. I sometimes feel like bursting into tears too. I try not to though because it would drain me more. I need to tackle the stairs shortly. Used to run up and down...want those days back. B

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Me too Barb, me too. God willing we will have those days again. Big hug.

[[ny...]]

I never had burning but I defintdely feel better, and I think anyone who tapers SLOWLY feels better on lower doses.  If you go slow at the end of your taper the sxs are minor and you don't have a lot of the drug left stored in your body, so there's no way for sxs to blow up once you're done.  If you rush things it could be protracted.  When in doubt go slower....still taper....but slowly.  You've been very supportive of myself and so many on this board, I wish you a speedy get well and know that it will pass!

[[St...]]

can you guys nap, or do they turn toxic, I find if I lay down I get so sleepy and then end up with toxic naps during the day, but I'm kinda disabled too from the valium tapering...going very slowly., It has affected my breathing a lot, can't do much at all, and I am very agoraphobic now too, can hardly step out on the deck.  ugh!  so depressing.  I am at 8.75 of v right now, cutting very very small, and adding an AD to see if it will help with depression...have either of you tried proponol at all?  I get tremendous fear from the valium all day long, doc thought it might help...also have the awful burning.  pretty miserable long days.....you guys aren't alone at all....one frickin foot in front of the other I guess right?

[Guest [Ka...]]

Hi Barb. I didn't get this from tapering, or lowering dose. But what I did get very often in about 2-3-month WD was that my CNS would feel chills very strongly; all I had to do was remember them, or think of them (i.e. not related to very cold weather, or an open window, or a cold of any sort), and I would feel chills so very strongly; like in a coffin, a fear type of deep chill. It was as if my CNS had an imprint of the feeling, and there it would appear. These chills for me were directly associated with early on "mental fears:, states of mind/fearful for no real explanation during acute WD. Glutamate high levels, and hypersensitivity. In acute, and in 2-4-6 months off, I had very low blood pressure; I never had any high blood pressure at all through the 8 months off to date.

However, with the stressor day today, and the burning type feeling, I felt like my heart was going too fast. I lay in front of a fan on my bed, to relax at the end of the day.

Oddly,today, a big stressor day for me, and I have burning as if I am sick with a cold. But no cold; I think it is my overly sensitive CNS again; fears, stress day, genuine stress last PM. At 8 months off now, most of what I'm experiencing (I think I am about though the actual withdrawals), most days I feel like I'm over it now;

But if I don't get out and  do specific things to destress when I do have to deal with "outside stressors" (real life knocking on my door) of life, I feel like my CNS is still "figuring out" the signals, the functions, the way to deal with stressors instead of flight or fight. Life without the veil of Xanax. I believe my cortisol is still trying to heal. I use 2,000 mg Vitamin C per day. I read Vitamin at high doses can aid cortisol stabilization...but I'm usually on it anyway.  Hope you get better. Peace. Karuna

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Thanks Karuna and ncy. I think the burning is actually due to a relatively fast taper to start and then the switch to Valium. I really was hoping it would help but I should have left things the way they were. My CNS is clearly involved but my doctor thinks after so many years on benzos my nerve endings are basically restoring themselves. So that's actually good news but wow is it painful. I'm pretty sure though it's not triggered by any particular stressors. It can wake me up from a deep, peaceful sleep. Or just hit when idly watching Netflix or a football or hockey game which except for the excitement I get from our sports they tend to reduce my stress. Lol even when our teams lose. Then I prefer to sulk. But seriously it's honestly extremely painful. Like scalding water running all over me. So even though it's actually promoting healing sometimes it just wears me down. I'm going to ask my doctor for a slow taper now though. nyc I think you're right. Slow it down...this Valium is tricky stuff. So putting that all together the pieces kind of fit. I guess I'll just have to deal with it when I have it and enjoy myself more when I don't. What's really odd though when it happens it feels like a cold draft is blowing on me. Argh...that makes it worse. Well, others here bravely face far worse challenges than my burning so I really shouldn't complain. Especially because it says my nerve ending are healing. I should be grateful I guess. But unfortunately sometimes it just gets the best of me...temporary boo hoo mindset. Well, nobody's perfect. Thanks guys. B

[[mi...]]

Hi,

 

Since i'm down to zero and even before i have a lot of burning and tingling for the most part in my feet and legs, but sometimes even further up.

 

For some reason they seem to change almost every day.

 

Today is extreme with lots of burns in my legs. I hope this will change within the next week or months.

 

Mike

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For those who get this has it ever gotten better the lower you go in your taper? [...] Has it left anyone at lower doses?

 

I can't tell you that your experience will mirror mine, but burning was probably the most prominent side effect that I dealt with at the beginning and mid point of my taper, and I can tell you that yes, it has for the most part gone away now. I never had it as bad as you but I had it more or less through my entire body at most times. I still have it mildly some nights now but not enough to even bother me, and most of the time there is no burning at all. I wish I could tell you at what cut it went away, but my memory unfortunately has only improved around some things, and that's not one of them. I hope you start to see a decrease in your burning soon!

[[fr...]]

  I also have it and it is truly awful.  I am at 13 mg. from 20 mg.  It started in my tongue.  Then it went to urethra area where I kept thinking I had a urinary infection.  Then my feet started and now it has spread to ankles.  I cannot function either.  It has been a year now.  Holding dose didn't help and tapering a little didn't either.  I tried gabapentin started yesterday, 100mg. so a very low dose.  It did nothing.  I hated to add another med but I cannot stand it any more.  I am in hell most of the day.  Pain medication helps, used to take it completely away for awhile but now only for about and hr. or two.  This suffering is just inhumane.  I totally sympathize with all of you as I am in the same boat.  I wish Drs. had something to offer as I don't know some days how I make it.  I pray alot, and will pray for you all also.  Constipation has gotten terrible also.  I guess muscles are totally seizing up now.  God help us all.

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Barb, or anyone - do you get burning in the ears, nose, mouth or throat as well? I'm dealing with that as well.

 

 

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I do Mena. Feels like sometimes I've burned my whole mouth, throat etc with acid. Really hard to brush my teeth sometimes but I force myself to and oddly it cools my mouth off for about an hour if I'm lucky. Trouble is if we kept brushing our enamel would be destroyed. I'm not a gum chewer but maybe chewing some spearmint, peppermint gum might help? This burning is absolutely dreadful but I hang in because it will pass. I hate it though. Just remember it is a sign of healing. Focus on that if you can.  B

[[fr...]]

  Yes, I get tongue burning.  Sometimes it is in the gums but mostly my tongue.  I have been dealing with it so long I can't remember how it is to be normal.  I hope it lets up one day for us all.

[[be...]]

Here's to that freeme. People say you can just adjust to stuff. But this is one sxs I just can't adjust to. At least not yet but it's my whole body. Everywhere. Hoping soon it will go away if only for a short time. B

[[He...]]

Hi all, Barb have you tried or do you take B vitamins? They promote nerve healing. I have read comments on here about burning sensations and didn't think about myself but lately I've awakened with back and leg pain and noted that there is a burning sensation. Once I move, it subsides a lot, and I'm making an effort to change position more often in the night. But I was like, wow I guess I do have this. My "issue" is spinal irregularities so neck/back/leg and other body pain has become so prevalent for so many years that I have to tune in to notice it except for when it flares up.

 

Why do i have to make effort to move, you may ask? Because I'm flanked by my cat and my cat-sized dog on either side, and moving is an adjustment for 3. 

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Hi healing. I've heard that about vitamin B but I just can't stomach it. Major nausea no matter what kind I take. Try to get B's from food. And lol I get the cat/dog thing. I rearely sleep alone.  B

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  Supplements also make me either sick or rev me up.  Just can't win.  My feet and urinary area burn the worst though.  I pray this lets up I can't function anymore.  I feel for you all and I am right there with you suffering. 

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Thanks all for your response.  Barb I didn't know the burning means we're healing. That's good to hear.  Thank you. God Bless Us Everyone🙏

[[He...]]

Hi healing. I've heard that about vitamin B but I just can't stomach it. Major nausea no matter what kind I take. Try to get B's from food. And lol I get the cat/dog thing. I rearely sleep alone.  B

 

Oh right. I forgot that it was you who had difficulties with B's. Hey those little critters have gotten me through so much. But they do like to sleep tight up next to me, especially as the weather gets cold.  HM

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Yup...little critters can be a blessing. Our pup...major distraction...our cat major sucky poo.  Well, both are but a puppy can really get into trouble...the chewies! love him at my feet when I'm in bed. But sure has his moments! Yet that's not so bad because when he does I need to think of him and not myself. They are wonderful company though. Not detrimental to my withdrawal at all. They help. B

[[he...]]

I'm so sorry that you are suffering from this so much, Barb. Also so sorry for all the others suffering from it also. I am sure I will go through the same thing when I finally get into the right state of health and mind to begin my taper. But I was so debilitated from Valium and also dealing with this crappy (literally) colostomy bag, I had to put one on hold, and it was my taper.  Was too much for one person (meaning me) to handle at one time, as Barb know this story well. Guess its better to be forwarned on what to expect. But my taper will be strictly from clonazepam only. Valium made me so debilitating ill, I did not even wanted to get out of be to go to the bathroom, such extreme and unbearable fatigue and aches. Pretty pathetic but true. And I was still at such a high dose on V - 47mg. My hats off to all of you handling or going through this but getting so close to getting off of this horrid class of drugs. Hang in there, Barb, and all the rest of you.

 

Heather

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Praying for you Heather🙏