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Neuropathy


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Hello!

Has anyone had a continuous flutter of nerves that is felt under the skin of the face. These are continuous, very painful twitches that involve the nose, forehead, eyes, from ear to ear, and to the neck. Tension of the muscles of the face, neck, as if tearing the face. Nevropathy all over the body, spasm of the muscles of the abdomen, lower back, continuous painful twitching and burning. The same goes for legs and arms. It is terrible and incredible torture. Very painful. Has anyone encountered a similar experience?

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Yes I have widespread neuropathic body pain.  Mostly in torso, arms and legs, feet...It is worse when under stress.  I find that anything that calms the nervous system is helpful.  Meditation, camomille tea, deep breathing, yoga, good sleep.  Strangely enough I get a bit of relief from a cheap arthritis cream that has trolamine salicylate 10% as the active ingredient.
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Yep I have this all over too. Not always accompanied by pain, but very often it is.

 

Mainly legs, forearms, stomach

 

Sounds like it’s very common in bwd

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Ok so those that know me, know I have to comment on this one....

This was my most gruesome symptom.

Beyond tolerable. I am so truly sorry.

Mine was whole body worst on my legs but included all areas of my body. Mine was not thread-like, bit mine was more like being in a vice grip lined with daggers... 24/7. I suffered it for months, couldn't walk etc.

I am much better now at 15 months off

I will try and post more tomorrow or PM you :smitten:

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Hello!

Has anyone had a continuous flutter of nerves that is felt under the skin of the face. These are continuous, very painful twitches that involve the nose, forehead, eyes, from ear to ear, and to the neck. Tension of the muscles of the face, neck, as if tearing the face. Nevropathy all over the body, spasm of the muscles of the abdomen, lower back, continuous painful twitching and burning. The same goes for legs and arms. It is terrible and incredible torture. Very painful. Has anyone encountered a similar experience?

 

 

I had this all over BUT my main problem was my face. I was unable to live a normal life. Couldn’t get out of bed For close to a year.. There’s no words to describe the facial pain. It sent me to countless doctors. Nobody able  to understand the pain. It was drop down to my knees pain. My face is still my main problem. But it has gotten easier over time but I always say “ if someone felt the pain I feel constantly they’d freak out”  but I act as if it’s normal at this point. I don’t know how I survived the harder days but I’m so glad I didn’t take a way out.  I thought someone was crushing my bones in my face. Thought my muscles were tearing. I remember telling a dr that my muscles ripped. (They didn’t but it sure felt that way) I even said it felt like I was being struck by lightning. .  I don’t wish that on anyone. I often wonder if I had an underlying problem and it surfaced after Valium but it’s so hard to tel at this point. I just deal with it as it comes now. It used to be constant and now it’s just a couple times a day that it gets really bad, though I feel constant burning all day, it’s better than feeling like crushed bones.

 

I bought a face mask that you can put in the fridge and freezer... it’s helps a lot!!! Also, cold wash cloth put in the freezer then lay it on my face. It wouldn’t have helped before but it does now.  Time is what I needed. Time is still working on my side. I just hope to be free of it alll one day.

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I have extreme tension. My face looks crooked and I always feel like it’s permanent.  It has gotten better with time but I have had a dentist tell me they need to pull my jaw back over. I also need braces now, too. I feel like my fave won’t look Or feel normal until I fix these problems. It’s as if my muscles spasmed and got so tight it reshifted everything.  It does definitely get easier over time. The nerve pain got easier before the muscle tension. But I feel like when my muscles get tight, usually by the end of the day... it causes some of the nerve pain again.  I couldn’t exercise for a year. I’m able  to now but very light lifting.

  Also, a chiropractor that specializes with the cervical spine was life saving.

 

It’s gets easier but it’s a long process in my case.

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Yep! Both feet feel like blocks of wood and that I have gel pads on my soles. This, and insomnia, are the worse part of my post Benzo jump. I wish someone would share that these things disappear with time.
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Hey Arnold

Forgot to ask you to add a signature to your profile so that we know how long you were on benzos, how long you have been off, and if other meds are involved.

Helps us know how to support you better :smitten:

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yep i have the twitching all over

it really kills me mentally as cant escape it. its my worst symptom though and im grateful to not have much worse than that to deal with anymore

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yep i have the twitching all over

it really kills me mentally as cant escape it. its my worst symptom though and im grateful to not have much worse than that to deal with anymore

Is this accompanied by muscle spasms?

 

yep

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Mine too.

I had muscle spasms in my legs NONSTOP for 9 weeks straight. Then it went to on and off.

I have so much video of it, it was unbelievable.

 

Any chance you could share a video so we have something to compare to?

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All of this stuff is quite normal. You have to keep in mind what is causing all this weird stuff: benzo wd. Why? Because, to put it very simply, benzos work on your brain and when you go off them, the brain reacts by producing the weirdest array of symptoms.

 

But that does not mean your symptoms dont bother you. They DO! And they can be scary to you as well. I am sure some of you have jumped to the conclusion there is something wrong with you other than benzo wd. I know I did. I had self diagnosed myself as having Parkinsons, a brain tumor, and bunch of other things. That there is something wrong with you other than benzos is the FIRST Benzo Lie.

Dont let this lie de-rail you.

You will heal from this. You will return to your normal way of life. It just may take some time, friends. Be willing to accept that and move on.

Annie (east)

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eastcoast62, thanks for the desire to support, but no one canceled tardive dystonia and it's scary when the muscles of the head, neck and face are pulled in different directions.

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Did someone have continuously strongly spasmodic muscles with severe nervous pain and then it would go away?

 

 

Mine is going away. It took a lot of time and pain. But after 8 MRIs of the head neck and face it was safe to say it was WD. I feel for you because your mind wants to tell you it’s something rather than WD. But it’s no coincidence that many of us have felt the same pain and only thing in common is WD. I did cold turkey from diazepam. Diazepam is a muscle relaxant, anxiolytic, anticonvulsant, it’s not uncommon for our muscles and nervous system to misfire after stopping use cold turkey.  I promise this will pass. It’s not permanent.

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Betterfuture, tching in the face in the form of nerve filaments? Was there a twitching of the eyelid? I have a continuous and very painful 9-10 points out of 10.
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Hello!

Has anyone had a continuous flutter of nerves that is felt under the skin of the face. These are continuous, very painful twitches that involve the nose, forehead, eyes, from ear to ear, and to the neck. Tension of the muscles of the face, neck, as if tearing the face. Nevropathy all over the body, spasm of the muscles of the abdomen, lower back, continuous painful twitching and burning. The same goes for legs and arms. It is terrible and incredible torture. Very painful. Has anyone encountered a similar experience?

 

 

I had this all over BUT my main problem was my face. I was unable to live a normal life. Couldn’t get out of bed For close to a year.. There’s no words to describe the facial pain. It sent me to countless doctors. Nobody able  to understand the pain. It was drop down to my knees pain. My face is still my main problem. But it has gotten easier over time but I always say “ if someone felt the pain I feel constantly they’d freak out”  but I act as if it’s normal at this point. I don’t know how I survived the harder days but I’m so glad I didn’t take a way out.  I thought someone was crushing my bones in my face. Thought my muscles were tearing. I remember telling a dr that my muscles ripped. (They didn’t but it sure felt that way) I even said it felt like I was being struck by lightning. .  I don’t wish that on anyone. I often wonder if I had an underlying problem and it surfaced after Valium but it’s so hard to tel at this point. I just deal with it as it comes now. It used to be constant and now it’s just a couple times a day that it gets really bad, though I feel constant burning all day, it’s better than feeling like crushed bones.

 

I bought a face mask that you can put in the fridge and freezer... it’s helps a lot!!! Also, cold wash cloth put in the freezer then lay it on my face. It wouldn’t have helped before but it does now.  Time is what I needed. Time is still working on my side. I just hope to be free of it alll one day.

 

Did you have the crushing bones n rest of body?

I have it everywhere head to toes front, back and sides. No position bearable.

 

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Hi buddies!

This is late dystonia in me, which appeared 5 months after the refusal. This is not a withdrawal syndrome.  Constant spasticity of the muscles of the back, abdomen, face and neck.  The jaw is pulled back, blepharospasm. Continuous twitching of the nerve-threads that I feel under the skin. Extremely painful in the face and head. Late dyskinesia is not cured, there are no windows. It is permanent and forever. Incredible torment beyond human comprehension.

 

I am aware of other ppl who had this constantly and got much better in year 3 off the drugs.

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Mine too.

I had muscle spasms in my legs NONSTOP for 9 weeks straight. Then it went to on and off.

I have so much video of it, it was unbelievable.

 

Have you put the videos on youtube?

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Did anyone have continuous painful twitching of the eyelids, blepharospasm?

 

I had this when got off first time along with whole body dystonia.

Neuro diagnosed dystonia and tried Baclofen which made it all worse and then reinstated.

Retapering for 3rd time. Body crushing me head to feet, face crushed and pulled, jaw out - oral surgeon says will need surgery but can’t even take basic pain meds as so sensitised.

 

It is all coming back.

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Hello!

Has anyone had a continuous flutter of nerves that is felt under the skin of the face. These are continuous, very painful twitches that involve the nose, forehead, eyes, from ear to ear, and to the neck. Tension of the muscles of the face, neck, as if tearing the face. Nevropathy all over the body, spasm of the muscles of the abdomen, lower back, continuous painful twitching and burning. The same goes for legs and arms. It is terrible and incredible torture. Very painful. Has anyone encountered a similar experience?

 

 

 

 

I had this all over BUT my main problem was my face. I was unable to live a normal life. Couldn’t get out of bed For close to a year.. There’s no words to describe the facial pain. It sent me to countless doctors. Nobody able  to understand the pain. It was drop down to my knees pain. My face is still my main problem. But it has gotten easier over time but I always say “ if someone felt the pain I feel constantly they’d freak out”  but I act as if it’s normal at this point. I don’t know how I survived the harder days but I’m so glad I didn’t take a way out.  I thought someone was crushing my bones in my face. Thought my muscles were tearing. I remember telling a dr that my muscles ripped. (They didn’t but it sure felt that way) I even said it felt like I was being struck by lightning. .  I don’t wish that on anyone. I often wonder if I had an underlying problem and it surfaced after Valium but it’s so hard to tel at this point. I just deal with it as it comes now. It used to be constant and now it’s just a couple times a day that it gets really bad, though I feel constant burning all day, it’s better than feeling like crushed bones.

 

I bought a face mask that you can put in the fridge and freezer... it’s helps a lot!!! Also, cold wash cloth put in the freezer then lay it on my face. It wouldn’t have helped before but it does now.  Time is what I needed. Time is still working on my side. I just hope to be free of it alll one day.

 

Did you have the crushing bones n rest of body?

I have it everywhere head to toes front, back and sides. No position bearable.

 

I did. But not near as bad as my face and head.

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Betterfuture, tching in the face in the form of nerve filaments? Was there a twitching of the eyelid? I have a continuous and very painful 9-10 points out of 10.

 

I experienced that too. Entire face twitched. Nerves pulsed/ burned. Still does from time to time but not anywhere close to what it did before. I’m a year  and a half off of cold turkey and doing so much better. I was definitely a solid 10/10 with pain..  About 12 months after it was a 6/10. Now it’s bearable.

 

I want everyone to know it’s not permanent. I wish I had someone to tell me that before bc it probably would have helped me mentally to know I was going to get better.

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