Neuropathy

[[Ar...]]

  Betterfuture,  thank you, you give at least some hope that perhaps I can somehow live with it. Although now it is absolutely incompatible with life and, it seems to me, it is only getting worse. From the top of my head to my pelvis, all my muscles are contracted, tied, twisted longitudinally and around a clockwise direction. Apparently, this squeezes a lot of nerves. It is accompanied by unreasonable pain, thousands of pins and needles and burning without the slightest gap. I understand that a very difficult lesion in order for it to pass and tardive dystonia cannot be treated.

[[So...]]

Sorry for everyone! I understand the pain and suffering all to well...mine felt like my whole body was being SQUEEZED by a vice grip that was lined with needles. Ugh. Plus the spasms and constant twitches, and feeling like gravity was soooo heavy that it felt like I had huge weights tied to my arms and legs just pulling downward.

The pain was actually so indescribable, I simply cannot put words to it.

 

And no I haven't put any video on youtube because most of the ones I have show my face. I have one that is just my legs, but it's kind of dark (cuz it was filmed in middle of the night..while NOT sleeping of course), I'm trying to see if I can lighten it a bit.

 

One thing I can say is that if it WERE permanent....then I wouldn't be getting better! I am still improving at 15 months off!

[[Ar...]]

Thank you, friends, for your kind hearts, but I am 100% sure that I will never recover. Too many, compared to you, I have taken this unexplored drug. I always took it only for anxiety, even when it was significantly higher than the dose. I never thought that this could be. Now I am so damaged that after rereading the entire forum, I found only 1 person in such a terrible state. My muscles are very tense and twisted, the spasticity is constant. They are like ropes that have crushed the nerves that scream day and night. Neither muscles nor nerves will ever be the same again, will not return to their original state. I have not heard of fibrous muscles returning to their previous shape.This doesn't happen. And crushed nerves.

The face simply breaks, pulls somewhere down in different directions, the ears stretch to the neck, and the neck itself pulls the muscles of the back and trunk up.

I will have to be in this hell until the end. May my children forgive me for letting them down. Sorry.

[[Ar...]]

facial pain persists for 14 years:

https://www.benzo.org.uk/ray5.htm

[Guest [Be...]]

Thank you, friends, for your kind hearts, but I am 100% sure that I will never recover. Too many, compared to you, I have taken this unexplored drug. I always took it only for anxiety, even when it was significantly higher than the dose. I never thought that this could be. Now I am so damaged that after rereading the entire forum, I found only 1 person in such a terrible state. My muscles are very tense and twisted, the spasticity is constant. They are like ropes that have crushed the nerves that scream day and night. Neither muscles nor nerves will ever be the same again, will not return to their original state. I have not heard of fibrous muscles returning to their previous shape.This doesn't happen. And crushed nerves.

The face simply breaks, pulls somewhere down in different directions, the ears stretch to the neck, and the neck itself pulls the muscles of the back and trunk up.

I will have to be in this hell until the end. May my children forgive me for letting them down. Sorry.

 

 

 

I have videos that I took for my doctor to see of my muscles pulling and getting hard while I was crying bc it wouldn’t stop. I took videos of my face pulling to one side. My brows pulling up. My eyelid twitching. The small muscles of my face pulling so hard. My neck was rippling in the ER. The nurse said he’d never seen someone’s body do what mine was doing. I was so scared. My leg muscles tightening so much that you could physically see it happening and same with my abdomen. We all heal differently. I want to give you hope that I started to feel better a little at a time but sometimes it can take a while. It's temporary, don’t lose hope💜 I’ll keep checking in with you. Sending you a hug and some love.

[[Ar...]]

Did anyone have muscles pulling with such force that they seem to be torn from the bones? At the same time, they continuously twitch very painfully .. This is more than 100 days and there is not the slightest interruption .. only worse and worse ...

 

[[Ar...]]

 

This is not a cancellation but a severe neurological damage caused by poorly studied benzo and cold turkey. 

I think tardive dystonia.

[[Bl...]]

Interesting thread. My nightmare began abruptly and that included both sides of my jaw dislocating. I had to hold my jaw bones in place in order to chew food. My throat was on fire and it felt like something was stuck in my throat. The throat felt like it was closing up. My voice changed and many times I could hardly speak due to the pain or loss of voice. I worried my vocal cords would suffer permanent damage as this symptom lasted a lonnnngg time...like years.

 

The left jaw appears to be permanently damaged...it is constantly locked up. I can force it to unlock but then my face has to be unnaturally pulled to the side and maintained for any temporary jaw relief. I do welcome the relief from the constant locked-jaw though! But popping the jaw in place is damaging in itself.

 

Symptoms have either resolved or decreased in severity or as with the left jaw never resolved. Try to focus on one day at a time...eat well/try to get some exercise/and try to engage your mind by reading/writing that involves your brain to work.

[[Ar...]]

BlueRose, what were your most severe physical symptoms and what went away?

 

Terrible spasticity and nervous pain without interruption do not give an opportunity not only to go in for sports, but even to sit or lie down.

[[Aj...]]

Thank you, friends, for your kind hearts, but I am 100% sure that I will never recover. Too many, compared to you, I have taken this unexplored drug. I always took it only for anxiety, even when it was significantly higher than the dose. I never thought that this could be. Now I am so damaged that after rereading the entire forum, I found only 1 person in such a terrible state. My muscles are very tense and twisted, the spasticity is constant. They are like ropes that have crushed the nerves that scream day and night. Neither muscles nor nerves will ever be the same again, will not return to their original state. I have not heard of fibrous muscles returning to their previous shape.This doesn't happen. And crushed nerves.

The face simply breaks, pulls somewhere down in different directions, the ears stretch to the neck, and the neck itself pulls the muscles of the back and trunk up.

I will have to be in this hell until the end. May my children forgive me for letting them down. Sorry.

 

 

 

I have videos that I took for my doctor to see of my muscles pulling and getting hard while I was crying bc it wouldn’t stop. I took videos of my face pulling to one side. My brows pulling up. My eyelid twitching. The small muscles of my face pulling so hard. My neck was rippling in the ER. The nurse said he’d never seen someone’s body do what mine was doing. I was so scared. My leg muscles tightening so much that you could physically see it happening and same with my abdomen. We all heal differently. I want to give you hope that I started to feel better a little at a time but sometimes it can take a while. It's temporary, don’t lose hope💜 I’ll keep checking in with you. Sending you a hug and some love.

 

 

Was this constant fixed contracture of dyskinesia and spasming etc?

I think those 2 things are very different.

The spasmodic pulling etc is very much more understandable as aberrant nerve signalling.

[[Aj...]]

Sorry for everyone! I understand the pain and suffering all to well...mine felt like my whole body was being SQUEEZED by a vice grip that was lined with needles. Ugh. Plus the spasms and constant twitches, and feeling like gravity was soooo heavy that it felt like I had huge weights tied to my arms and legs just pulling downward.

The pain was actually so indescribable, I simply cannot put words to it.

 

And no I haven't put any video on youtube because most of the ones I have show my face. I have one that is just my legs, but it's kind of dark (cuz it was filmed in middle of the night..while NOT sleeping of course), I'm trying to see if I can lighten it a bit.

 

One thing I can say is that if it WERE permanent....then I wouldn't be getting better! I am still improving at 15 months off!

 

 

Can I ask of yours was the sensation of being squeezed etc or if your muscles actually went extremely hard, contracted, gristle like lumps at all tendon attachments actually contracting and twisting whole spine, face etc?

 

Did you have the neck weakness and rigidity that pulled head down and back and took heavy to hold up?

 

Do you think it was only the AD that helped.

I cannot take anything at all now due to sensitisation.

[[Aj...]]

Interesting thread. My nightmare began abruptly and that included both sides of my jaw dislocating. I had to hold my jaw bones in place in order to chew food. My throat was on fire and it felt like something was stuck in my throat. The throat felt like it was closing up. My voice changed and many times I could hardly speak due to the pain or loss of voice. I worried my vocal cords would suffer permanent damage as this symptom lasted a lonnnngg time...like years.

 

The left jaw appears to be permanently damaged...it is constantly locked up. I can force it to unlock but then my face has to be unnaturally pulled to the side and maintained for any temporary jaw relief. I do welcome the relief from the constant locked-jaw though! But popping the jaw in place is damaging in itself.

 

Symptoms have either resolved or decreased in severity or as with the left jaw never resolved. Try to focus on one day at a time...eat well/try to get some exercise/and try to engage your mind by reading/writing that involves your brain to work.

 

My oral surgeon says my jaw is a mess - ‘no hope & need tertiary care’.

All other joints in my body are exactly the same as that. Like no ligaments hold g the, together, all muscles atrophied and turned to hard, fibrotic gristle that is crushing joints.

 

Are they going to do anything surgically for your jaw?

 

I can’t take any meds now - even baby aspirin makes all muscles loose all tine and everything collapses.

[[Ar...]]

 

I am sure that people who complain of spasticity are dealing with cerebral contractures resulting from brain damage.

I have a terrible contracture of the face, head and neck, extending to the back. It's just that everything is constrained by concrete and traction.

[[Ar...]]

Ajusta,  do you have facial pain and pain in spastic muscles?

[[So...]]

Sorry for everyone! I understand the pain and suffering all to well...mine felt like my whole body was being SQUEEZED by a vice grip that was lined with needles. Ugh. Plus the spasms and constant twitches, and feeling like gravity was soooo heavy that it felt like I had huge weights tied to my arms and legs just pulling downward.

The pain was actually so indescribable, I simply cannot put words to it.

 

And no I haven't put any video on youtube because most of the ones I have show my face. I have one that is just my legs, but it's kind of dark (cuz it was filmed in middle of the night..while NOT sleeping of course), I'm trying to see if I can lighten it a bit.

 

One thing I can say is that if it WERE permanent....then I wouldn't be getting better! I am still improving at 15 months off!

 

 

Can I ask of yours was the sensation of being squeezed etc or if your muscles actually went extremely hard, contracted, gristle like lumps at all tendon attachments actually contracting and twisting whole spine, face etc?

 

Did you have the neck weakness and rigidity that pulled head down and back and took heavy to hold up?

 

Do you think it was only the AD that helped.

I cannot take anything at all now due to sensitisation.

 

Hey ajusta

I had 2 separate kinds, the first few months the muscle contractions were more like gigantic muscle twitches, ie like if you had some electrodes attached to your body and set it on high. They did tighten but only for seconds....but they did that continuous for a couple of months. Docs thought I had Isaac's syndrome, Neuromytonia etc.

Then that settled down....only to be replaced by the SQUEEZING pain. But yes it was only a sensation kind, like my muscles were still and soft and not moving....only it felt like someone was squeezing me to death...nonstop

 

My neck pain was straight up dystonia from antipsychotics they gave in facility. Was so stiff and ridged and painful for 4 months.

But no weird gristle or lumps.

 

And yes I know the amitrip has helped me. Once it helped the pain then I could start living life again and doing all the things I love which also contributes to recovering.

I had to have 24 hour care before the Ami. So I don't regret taking it at all. Will want to get rid of it eventually, but 1 year isn't enough for me to risk another WD right now. No way. I will prob wait another year or 2 for my body to be nice and strong before I attempt it!

 

And I'm sorry, because I wish there was something you could take to help you! I wonder if you could micro dose something?!!?

Thats how I got on the amitrip...microdosed it just to reach 10mg, the starting dose lol

I couldn't even take children's meds prior to that as well! And was sooo sensitive to everything.

I am now able to take ibuprofen, and antibiotics for a couple of UTIs with no problems at all.

Hmmmmmmm

 

[[Bl...]]

BlueRose, what were your most severe physical symptoms and what went away?

 

Terrible spasticity and nervous pain without interruption do not give an opportunity not only to go in for sports, but even to sit or lie down.

 

Most severe physical symptoms:

Burning throat; rapid weight loss(about 50 lbs within approximately 5 months); rapid muscle loss/atrophy; jaw dislocation; akathisia; extreme fatigue; back pain; sores on tongue; blurry vision.

 

Symptoms that haven't improved:

Jaw dislocation(it resolved on the right side, but it is always out of alignment on the left side); blurry vision(is getting worse).

 

Symptoms that continue to improve:

Akathisia(almost daily around midnight near the low back and legs); back pain(low back and at times can still become very disabling); fatigue(exercise will antagonize, but still try to stay active);  sores on tongue...rarely occur, and certain foods are what triggers this symptom).

 

My muscles have not recovered as I remember them. I was 55 when acute w/d hit in 2012....today I am 63. I have gained back 30 lbs and it puts me at a good enough weight for my height.

 

Before the acute reaction to these drugs, I had struggled with low back issues for decades. But benzos really did some serious damage to this already existing issue by taking it to a whole new level of pain.

 

I still am seeing improvement physically. But the jaw and vision symptoms are very concerning and I doubt I'll see these issues ever resolve.

[[Ar...]]

BlueRose, Did you have a stiff neck, face and back muscles?

[[Bl...]]

 

My oral surgeon says my jaw is a mess - ‘no hope & need tertiary care’.

All other joints in my body are exactly the same as that. Like no ligaments hold g the, together, all muscles atrophied and turned to hard, fibrotic gristle that is crushing joints.

 

Are they going to do anything surgically for your jaw?

 

I can’t take any meds now - even baby aspirin makes all muscles loose all tine and everything collapses.

 

When the jaw first acted up from these drugs, I was immediately offered surgery to resolve the problem. I declined without a second thought on their offer. Surgery was offered via phone and without having even been seen by a specialist!

 

At this point, in serious acute benzo w/d, I'm certain the VA had "red flagged" my medical chart as a difficult patient. And, as a consequence, the premature offer to perform surgery on my jaw. I was shocked and insulted at the same time. I needed help...but please...let's first figure out why I am being bombarded by these bizarre symptoms in rapid succession.

 

This was just the beginning of my benzo w/d ordeal. They had yet to see some real action, to then report in my medical chart(s). Too bad they didn't understand benzo w/d. I'm sure a few of the psychiatrists knew or at least suspected that the drugs prescribed by their department were the problem. I was also on Elavil for insomnia. Insomnia and chronic back pain have both been issues well before I took any medication long-term.

 

No I do not plan on surgery...I have never even been checked out for the jaw issue. I kept hoping it would resolve. No longer see or believe that it will heal. The drugs did their damage but good.

 

I only take 2 Tylenol codeine#3 pills at around midnight for the akathisia and back pain and other lingering issues from benzo w/d. I take each pill about an hour apart. My stomach cannot tolerate it otherwise. That is the only med I'm on. I do take some vitamins/calcium in very low doses.

 

I sure hope you begin to see some improvement....this is such a lonely journey.

[[Bl...]]

BlueRose, Did you have a stiff neck, face and back muscles?

 

No stiff neck or face.

 

My back muscles have felt like partly jello and partly cement. Especially in the area that is most painful...near the coccyx area. It has really been scary at times...I'm sure disks are slipping and nerves are being pinched when I have a flare up...stress and even the weather can lead to a flare up. I have to basically get to a crawl in activity in order to power through such episodes and survive it.

 

I'm sure I over do it physically all the time...life doesn't stop unfortunately. I would be in much better condition physically and mentally if I had never taken a benzo. Too late now to change what could have been. I'm very optimistic about a future hope...and if I "get there" my full recovery will definitely involve a miracle. No medication and no surgery could ever do that....maybe alleviate it, but not reverse the issue.

[[Ar...]]

My jaw cracks in the joint, clicks. Dragged seriously. How can you sell such poisons in a pharmacy? This is a serious crime.

[[Ar...]]

 

Twitching sharp pains, like fluttering of threads all over the face and head, and terrible spasticity. Someone else?

[[Aj...]]

My jaw clunks so hard my whole head vibrates from it.

I have the feeling like threads - like millions of filaments growing through face.

A nerves feel like tight rusty guitar strings, muscles like rigid concrete, whole body contracted, twisted, pulled out of alignment from feet to head but worse from coccyx to base of skull and in jaw.

[[Ar...]]

My jaw clunks so hard my whole head vibrates from it.

I have the feeling like threads - like millions of filaments growing through face.

A nerves feel like tight rusty guitar strings, muscles like rigid concrete, whole body contracted, twisted, pulled out of alignment from feet to head but worse from coccyx to base of skull and in jaw.

 

Do you still feel the nerves, like threads all over your face?

[[ca...]]

Hi everyone. I’m 5 years off of this crap and although I never fully healed was better. I never had these symptoms before but I had stomach issues which revved my nervous system again. I got caught in fight or flight. Now I can’t sleep and have constant adrenaline surges which has led to this muscle burning ALLL over. I can’t tolerate it. Sometimes face but mostly for arms legs feet stomach. I also have severe severe deep aches all over. I cannot endure this and I didn’t even have it in acute. I’m scared I really won’t ever heal. It’s been too long I’ve been off. I’m under a ton of stress but I can’t get my body out of this cycle of trying to produce so much cortisol to numb a little then I calm n pain is so severe I can’t endure. Anxiety is extreme too. Have you seen this??? What is the best help? I am thinking of going back on to get relief or I really don’t know how to continue on with this. Thx for help

[[Ar...]]

Hi everyone. I’m 5 years off of this crap and although I never fully healed was better. I never had these symptoms before but I had stomach issues which revved my nervous system again. I got caught in fight or flight. Now I can’t sleep and have constant adrenaline surges which has led to this muscle burning ALLL over. I can’t tolerate it. Sometimes face but mostly for arms legs feet stomach. I also have severe severe deep aches all over. I cannot endure this and I didn’t even have it in acute. I’m scared I really won’t ever heal. It’s been too long I’ve been off. I’m under a ton of stress but I can’t get my body out of this cycle of trying to produce so much cortisol to numb a little then I calm n pain is so severe I can’t endure. Anxiety is extreme too. Have you seen this??? What is the best help? I am thinking of going back on to get relief or I really don’t know how to continue on with this. Thx for help

 

 

 

The worst thing that can be done is to return to these poisons. The body has no defense mechanisms against this poison, unlike natural diseases. Going back to drugs will only make things worse.