Benzo numbness /burning cause

[[Ma...]]

Matt, I just want to jump in here and say that I, too, had miserable burning neuropathic pain during my taper. In one leg/foot in particular. My doc prescribed neurontin for me. It did work -- I'd say it reduced the pain/tingling/burning by 75%. Not perfect, but better than nothing. And the pain diminished as I tapered down my benzo.

 

It was a miserable drug to taper off, however.

 

Would I do it again? Yes, absolutely. Some nights the burning and tingling . . . electric shock-like things . . . were pretty much unbearable before I started on neurontin.

 

So, another Faustian bargain with drugs, right?

 

Hope this helps,

 

Katz

 

 

Thanks Katz I appreciate that info. I am going to try to relax and let it all sink in. I am still having trouble accepting these symptoms are here to stay for the time being if that makes any sense

[[or...]]

I hear you, Matt.

 

But look how low you are in your taper. The time being may well not be much longer. Then, I would hope, these miserable s/x will ebb away.

 

 

Katz

[[Ma...]]

Thanks Katz I like your possible scenario very much :thumbsup:

[[So...]]

Still following you guys!

 

I totally have had my skin be weird red where pins and needles are worse. At one point I thought it may be a circulation thing. I can't sit at certain angles or else limbs go completely asleep. I've been gluten free dairy free for 10 years prior to benzo so definitely not that for me. Amitriptyline took me from brutal pain and parethesea from then neck down and couldn't lift my limbs more than an inch or even walk at all...to functioning again...but I'm always wondering will it ever ALL go away? I mean Joe has gone 4 years and still not gone!!! Dang Joe, I'm sorry!!  It's obvious we have benzo induced neuropathy BUT why doesn't it show up on tests? I mean I literally don't have large fiber neuropathy and my body is in great shape.

Docs say it must be small fiber neuropathy but I don't want them to cut a hole in my leg to find out because guess what your options are for small fiber neuropathy?..... exercise, eat clean, alt therapies like ALA, magnesium, acupuncture, light therapy etc. And meds are.... amitriptyline, gabapentin, Lyrica, cymbalta.

There are some interesting studies about small fiber neuropathy that suggest to much glutamate causing it, but in the end there are only so many choices I have to try and help.

I am only at 10mg of amitrip and could try to increase to see if it helps but just sooooo scared of messing with it since i was in wheelchair before and now I can walk,drive, and shoot hoops.

IDK........

[[So...]]

Also been trying to research the talked about NAD therapy as it pertains to neuropathy, so far I saw one article about it helping chemotherapy induced neuropathy, but still looking

[[or...]]

I know NAD therapy is being advocated by some on here, but reading this totally put me off it. The reference isn't specific to neuropathy, but to the procedure in general.

 

https://www.npr.org/sections/health-shots/2019/08/22/741115178/addiction-clinics-market-unproven-infusion-treatments-to-desperate-patients

 

Even during the worst of my taper, I wouldn't have done this. Other have to make up their own minds, however.

 

Katz

 

 

[[Ca...]]

I know NAD therapy is being advocated by some on here, but reading this totally put me off it. The reference isn't specific to neuropathy, but to the procedure in general.

 

https://www.npr.org/sections/health-shots/2019/08/22/741115178/addiction-clinics-market-unproven-infusion-treatments-to-desperate-patients

 

Even during the worst of my taper, I wouldn't have done this. Other have to make up their own minds, however.

 

Katz

 

Agreed.      :thumbsup:

 

I saw it  also,  however 

I wasnt game to post it,  :laugh:  

 

thanks  Katz

Seems Jordan Peterson has “struck a deal” for NAD treatment here in Australia..!! -re. “the” Benzos in the News thread..

“Get your promo code here..!!”

 

Something isnt sitting right with me either.. Buyer beware, I guess..

 

[Guest [Sk...]]

I know NAD therapy is being advocated by some on here, but reading this totally put me off it. The reference isn't specific to neuropathy, but to the procedure in general.

 

https://www.npr.org/sections/health-shots/2019/08/22/741115178/addiction-clinics-market-unproven-infusion-treatments-to-desperate-patients

 

Even during the worst of my taper, I wouldn't have done this. Other have to make up their own minds, however.

 

Katz

 

Agreed.      :thumbsup:

 

I saw it  also,  however 

I wasnt game to post it,  :laugh:  

 

thanks  Katz

Seems Jordan Peterson has “struck a deal” for NAD treatment here in Australia..!! -re. “the” Benzos in the News thread..

“Get your promo code here..!!”

 

Something isnt sitting right with me either.. Buyer beware, I guess..

 

agree buyer beware

  even reader beware also.   

 

 

[[Ca...]]

I know NAD therapy is being advocated by some on here, but reading this totally put me off it. The reference isn't specific to neuropathy, but to the procedure in general.

 

https://www.npr.org/sections/health-shots/2019/08/22/741115178/addiction-clinics-market-unproven-infusion-treatments-to-desperate-patients

 

Even during the worst of my taper, I wouldn't have done this. Other have to make up their own minds, however.

 

Katz

 

Agreed.      :thumbsup:

 

I saw it  also,  however 

I wasnt game to post it,  :laugh:  

 

thanks  Katz

Seems Jordan Peterson has “struck a deal” for NAD treatment here in Australia..!! -re. “the” Benzos in the News thread..

“Get your promo code here..!!”

 

Something isnt sitting right with me either.. Buyer beware, I guess..

 

agree buyer beware

  even reader beware also. 

Personally id rather spend 15k on organics, and eat more dirt with biome “goodies” in it... -but thats just me..

 

 

[[or...]]

Personally id rather spend 15k on organics, and eat more dirt with biome “goodies” in it... -but thats just me..

 

 

Katz

[[So...]]

Thanks for this perspective!

[[Jo...]]

Just to answer the questions and keep the thread going..Matt- yes mine has morphed into pain. Mostly in my feet. I can't walk distances without feeling the need to sit down, but thankfully I can still walk.  The pins and needles feeling/ numbness is what is getting me more though.. scared that I may lose sensation in my feet/ legs and can't walk one day.  For now I'm functional, but just miserable.  I've had a pretty thorough workup - including a small fiber biopsy where they peel off skin and send it to a lab as well as DNA testing .. strange thing is that it all comes back clean.  Which is the good news.. the bad news is that I'm still miserable. I don't know if drugs will really help.. truthfully I've stayed away from them mostly out of fear after reading so many horror stories.. every time a doctor prescribes something I try it for maybe a month and then stop if I don't feel its helping.. I've tried Lyrica a bit and it didn't help much.  May try Amatryip, or something else now cuz I'm just tired of "waiting to heal" -- as are many on the protracted board.  At this point.. i think "W/D" is not an accurate description of what happened with me.. because my SX all appeared after discontinuing my previous daily drug regimen.. i do believe they are related... but is it permanent nerve damage, drugs triggering an autoimmune condition, GABA receptors misfiring, a hidden extreme "anxiety disorder" (a favorite of dx of docs who don't want to investigate anymore).....  Who knows.. knows.. but I am reaching the point where my options comes down to (a) do nothing and live in misery (b) take a chance on more brain altering drugs and hope for relief instead of more problems.. cuz regardless of the cause, like you mentioned, the only "remedy" seems to be - Gabapentin, Lyrica, Cymbalta, Amatriptaline, Etc... 

 

Just glad that there are SOME reports here of people who have tried drugs and had success (THANKS for sharing that SouthernBelle) since almost everyone else on these boards will tell you just stay away from them.

[[Iz...]]

I have had some  type of neuropathic pain since I can remember. I came to realize that the pain I was experiencing for years was due to benzo interdose withdrawal from Ativan. Before my next dose I would have horrible burning pain- starting with prickly then intensified to a bad chemical burn that gradually spreads. So, withdrawing I’m feeling the same symptoms- they just present themselves sooner. But I hold out no matter what until my next dose. I have not been able to switch to a longer half-life.

[[Ca...]]

I have had some  type of neuropathic pain since I can remember. I came to realize that the pain I was experiencing for years was due to benzo interdose withdrawal from Ativan. Before my next dose I would have horrible burning pain- starting with prickly then intensified to a bad chemical burn that gradually spreads. So, withdrawing I’m feeling the same symptoms- they just present themselves sooner. But I hold out no matter what until my next dose. I have not been able to switch to a longer half-life.

Yes, mine are fluctuating with dose changes through the day and Interdose WD, -Just a different med..

The fact that it all (kinda) goes away at times tells me its not actual peripheral nerve damage, but CNS and neurotransmitter related.. Its becoming clear to me that my issues are heavily connected to the two way communication between the gut and CNS... -Having some real “ohhhh” moments here, which all started because a pinch of probiotics turned me upside down, both good and bad...

Now that we can gene sequence gut microbes, the information seems to be exploding and I suddenly feel very ignorant as to my whole body and situation..

-Not to put this on anyone else, my story is my own..  -But those that are lost may wish to investigate further...

 

 

[[Ma...]]

My exercise seems to be causing some issues in my feet and calves This would seem to imply there is a two way interplay between the conditions of nerves and tissues at the site of nerve pain and the brain/CNS. Or to put it another way their is either some kind of dysfunction of the nerves and tissues at the site of the nerve pain that is beyond the medical communities ability to detect, or something else kind of beyond my ability to understand. Maybe I am beating this to death, but I am having a little trouble understanding all of this

[[So...]]

Matt, right mine does the same with exercise. I can only do a certain amount because it will make it even worse if I'm not careful. But right, is it the nerves in my muscles and skin? Or is it my CNS interpreting the signals wrong in my brain? Or is it both?

I really don't know either.

The simplest form of parethesia is when you apply pressure to an area (like crossing legs) and it goes to sleep. Science says it's the temporary disruption of nerves.  When the pressure is released and signals are getting straightened out you start getting that pins and needles and weakness and then it corrects itself. Right?

Soooo hoping maybe it is my signals trying to straighten back out?!!!  Haha I know, wish it was that simple!

When I was non functional ANY area of pressure would go to sleep...so you couldn't sit, stand, lay, without half your body going completely asleep and couldn't move it. Was even tested for something called Hereditary Pressure Neuropathy, geez I was tested for ANYTHING related to neuropathy! Even a genetic disorder called Hypokalemic Periodic Paralysis! Was so crazy. But after a billion tests...and about a billion dollars....my body on paper is picture of health, lol

At the end of testing my neurologist said "yeah, this benzo thing is the real deal!"

 

Another thing I've thought about is alcohol neuropathy. It is said that alcohol is like liquid benzos...so how does alcohol cause neuropathy? Like what's the science behind it? Maybe the mechanism s are similar?

[[So...]]

Sorry that was longer than I meant! Was actually going to shorten it but accidentally hit post!

[[Ma...]]

Hi SouthernBelle08 Yes it is confusing. I get a little concerned that exercise could be making things worse for me in my feet at least. Probably am not going to give it up until things get worse than they are. Also it seems like things may be shifting around and maybe not necessarily worse. There is also the notion that  pain is a sign of healing in the body/brain, but one can only ride that idea so far

 

If it is true that there is a feedback of some sort between the site of nerve pain sensation then perhaps things like light therapy, tens units, and even capsicum make some sense I will likely be experimenting and I am continuing my Indigo sessions every other week

[[go...]]

Just want to join in here to say I have neuropathy pain.  Burning 24/7 10/10 requires pain med at this point.  Feet freezing and becoming more painful.  I was multi-Floxed by Cipro and Levaquin but really hoping this is from Valium since then I at least have a chance of it going away.  Have any of you posters above been Floxed that you know of?  Could have been given as IV in hospital for any type of procedure to prevent infection.

 

I'm currently at 2.5 mg. Valium.  Thought I had mostly been at 8 before but have come to realize it was higher.  Also took it intermittently prior to a year ago and once in a while with Ambien.  Valium suppositories early on.

 

I had awful sobbing black depression that has greatly lessened, if not gone.  I may also have been afraid to leave house and that's gone.

 

But, my feet continue to freeze and the rest of me burns.  It is steady throughout taper - no ups or downs even with holding.  Can that happen even if it is the Valium causing it?

 

Also, my feet now have more pain when walking and that pain grows worse.

[[Ca...]]

Just want to join in here to say I have neuropathy pain.  Burning 24/7 10/10 requires pain med at this point.  Feet freezing and becoming more painful.  I was multi-Floxed by Cipro and Levaquin but really hoping this is from Valium since then I at least have a chance of it going away.  Have any of you posters above been Floxed that you know of?  Could have been given as IV in hospital for any type of procedure to prevent infection.

 

I'm currently at 2.5 mg. Valium.  Thought I had mostly been at 8 before but have come to realize it was higher.  Also took it intermittently prior to a year ago and once in a while with Ambien.  Valium suppositories early on.

 

I had awful sobbing black depression that has greatly lessened, if not gone.  I may also have been afraid to leave house and that's gone.

 

But, my feet continue to freeze and the rest of me burns.  It is steady throughout taper - no ups or downs even with holding.  Can that happen even if it is the Valium causing it?

 

Also, my feet now have more pain when walking and that pain grows worse.

I have a beyond massive antibiotic history over the 4yrs following my accident... -Months upon months on two occasions of PIC line ABs in conjunction with transfusions and wash-outs.. -VRE (similar to MRSA) and insitu AB “beads”, etc..

-I never had nerve issues from that.. -And I didnt get any during or directly after the valium taper..

What kicked them off was a sudden opiate C/O which rattled me to the core.. -From a complex synthetic back to plain old oxycontin... Now the neuropathy, much of it similar to what you describe, fluctuates closely with my SX or any tapering events... Even probiotics effect it now..

Simply, My neurochemistry systems are fried..

Even a semiconscious dream of a dog standing on my foot can trigger a sudden burst if stabbing pain in my foot...!!

Its not getting any worse, -I would say perhaps slowly better, but its a bit early to be sure..

-As to the loss if half my face muscles, I got perhaps 50% of that back in 6mths or so, but the rest remains and fluctuates with my overall SX too..

 

I feel like I stood on a rock and bruised under my foot, which is new (asides the rest of the foot/leg/muscle stuff)

 

Hope something here helps you..

 

 

 

[[Ma...]]

Just want to join in here to say I have neuropathy pain.  Burning 24/7 10/10 requires pain med at this point.  Feet freezing and becoming more painful.  I was multi-Floxed by Cipro and Levaquin but really hoping this is from Valium since then I at least have a chance of it going away.  Have any of you posters above been Floxed that you know of?  Could have been given as IV in hospital for any type of procedure to prevent infection.

 

I'm currently at 2.5 mg. Valium.  Thought I had mostly been at 8 before but have come to realize it was higher.  Also took it intermittently prior to a year ago and once in a while with Ambien.  Valium suppositories early on.

 

I had awful sobbing black depression that has greatly lessened, if not gone.  I may also have been afraid to leave house and that's gone.

 

But, my feet continue to freeze and the rest of me burns.  It is steady throughout taper - no ups or downs even with holding.  Can that happen even if it is the Valium causing it?

 

Also, my feet now have more pain when walking and that pain grows worse.

 

 

Hi goforit Thanks for your contribution My sympathies for your pain. I have such a lightweight case compared to all the rest here, it is almost embarrassing Glad you have mad some progress, and hope that is giving you strength to go on with your taper. I haven't had any antibiotics for a long time. But in regard to Cantfly I have had opiate exposure during both periods of increasing paresthesia, so it might be playing a role for me. I have also noticed that a pretty good dose of stress with Wife tonight brought back the calf tingling/pricking/whatever that had kind of receded. Funny I had hardly noticed how much it had improved and also makes me wonder if further relaxing, though now current plan to accomplish that is on the table, might improve things further

 

,

[[go...]]

This is a complicated question.  I don't know if there are any medical professionals out there but if so I hope you pursue this.

 

I have taken Benzos for 5 years, mostly intermittently until the last year.  I have biopsy proven small fiber neuropathy (SFN).  SFN can cause burning, which I have full body.  I also have freezing feet and autonomic neuropathy (sweats, urinary problems ...)

 

I am wondering if anybody, especially admins or people who have been around a long time, would know if it is possible for Benzos to physically damage the small fiber nerves?  They are tiny, mostly unmyelinated (no fatty sheath) nerves that we have all over our body, including our skin and organs.  I wonder if there are any studies on this?

 

(One reason people might have SFN is from an auto-immune condition, because the body keeps attacking the nerves.  If auto-immune sometimes they can give IVIG and the person can recover.  Other than that, it's pain management.)

 

I suspect my SFN is from multiple Floxings followed by B6 toxicity (Floxies seem to get B6 toxicity easily).  Usually, with B6 toxicity alone, the small fiber nerves will regrow.  I have figured mine have not regrown due to Flox, but maybe, just maybe the Benzos keep them from re-growing??? <--------This is my own wild idea.

 

But I see that many of the symptoms of Benzo withdrawal and withdrawal tolerance are very similar to SFN and autonomic neuropathy.  There is a huge overlap. It makes it difficult for me to figure out what is what in my case.

 

Some symptoms I thought were Floxing have gone away with my taper (black sobbing depression, not wanting to be alone, and not wanting to leave the house very much.)  I can only hope more will.

 

So, it made me wonder if in addition to affecting GABA receptors, Benzos might also be causing a neurotoxicity to the small fiber nerves???  It is difficult to test for.  It is hard to find neurologists who truly understand SFN and how to test for it.  The correct test is to get several small punch biopsies from the leg (foot, above ankle and upper thigh) and send them to one of the few labs that will then count the actual number of small nerve fibers and compare it to those of normal people by age.  For anyone interested in SFN I suggest you google Dr. Oaklander of Massachusetts General.    She is the one who discovered that nearly 50% of people with Fibromyalgia actually have Small Fiber Neuropathy.  Most doctors are still unaware of her work.  If you request this I would get a Prior Authorization as they are expensive.  The SFN work is relatively new, maybe only in the past 10 years as it relates to causing burning pain, fibromyalgia, etc.

[[So...]]

Hey there! I'm not a medical professional at all!

Just interested in your post

I am currently being treated as though I have SFN. My neurologist knows for a fact that is has been  medicine and withdrawal induced. I'm an easy case on that front because I was in perfect shape before...then 6 months of benzos and then some polydrugs. After they tested everything under the sun...they said well you can get the skin punch hole test for SFN...if it's positive then your options are these meds or treatments....or you can just try amitriptyline and see if it works and avoid the test.

And it worked.

So I don't have the positive test for it.

It is interesting that you got the test while still on benzos... sometimes makes me wanna get it just so I know if I truly have it!

But if I do then there is the question of benzos? Or all the other meds I was given in facility? Which one did it?

But my money is on benzos because my very first encounter with the neuropathy started during interdose....before the other meds.

 

And yes I would love it if my neurologist would do a study in this!!

Or if just someone would!

I have read a lot about SFN and have wondered just how many of us actually have it?

[[So...]]

Sorry the above post was meant for Goforit! It was in response to goforits last post, lol

[[go...]]

Just want to join in here to say I have neuropathy pain.  Burning 24/7 10/10 requires pain med at this point.  Feet freezing and becoming more painful.  I was multi-Floxed by Cipro and Levaquin but really hoping this is from Valium since then I at least have a chance of it going away.  Have any of you posters above been Floxed that you know of?  Could have been given as IV in hospital for any type of procedure to prevent infection.

 

I'm currently at 2.5 mg. Valium.  Thought I had mostly been at 8 before but have come to realize it was higher.  Also took it intermittently prior to a year ago and once in a while with Ambien.  Valium suppositories early on.

 

I had awful sobbing black depression that has greatly lessened, if not gone.  I may also have been afraid to leave house and that's gone.

 

But, my feet continue to freeze and the rest of me burns.  It is steady throughout taper - no ups or downs even with holding.  Can that happen even if it is the Valium causing it?

 

Also, my feet now have more pain when walking and that pain grows worse.

 

 

Hi goforit Thanks for your contribution My sympathies for your pain. I have such a lightweight case compared to all the rest here, it is almost embarrassing Glad you have mad some progress, and hope that is giving you strength to go on with your taper. I haven't had any antibiotics for a long time. But in regard to Cantfly I have had opiate exposure during both periods of increasing paresthesia, so it might be playing a role for me. I have also noticed that a pretty good dose of stress with Wife tonight brought back the calf tingling/pricking/whatever that had kind of receded. Funny I had hardly noticed how much it had improved and also makes me wonder if further relaxing, though now current plan to accomplish that is on the table, might improve things further

 

,

 

Matt - Unfortunately I am also on 60 mg. of Oxycontin a day and plan to taper that after the current Valium and then Neurontin.  Do you have any idea how they taper people off Oxy. at a decent rate?  I don't want more problems.  The Valium taper seems to be helping now.