To those who do not seem to heal :(

[[Na...]]

On 17/03/2024 at 00:56, [[f...] said:

I have to believe in healing, as I had a glorious 1.5 years in heaven. It's gotta come back around again, right? But lemme tell you, guys... Setbacks that come back around can easily be as bad as day 1, my god.  I feel like I'm seeing zero indication of this wave letting up.

I'm maintaining optimism and positivity for my family's sake. I have a wife and son and... I can't afford to be pessimistic because it would lead me down the path of taking the easy way out if you get my drift.

I have to believe that if you were essentially healed for 1.5 years your body still "knows how" to be normal. For whatever reason you've been kicked out of that normalcy back into some sort of cycle of self perpetuating illness. 

I know that has to be devastating - to be well then suddenly thrown back into illness. 

But, try to hang on to the hope that whatever caused you to get well will happen again and you'll be back to where you were.

If you've been some place that's proof that you can get there. Hopefully you'll get back to wellness soon. 

[[de...]]

 

 

This is just an FYI for those posting on this thread that may not be 18+ months benzo free.   We have recently changed our policy about who can post on the Long Haulers group.   Please read the above post.  

 

[[Wi...]]

.

Edited March 27 by [Wi...]

[[...]]

On 19/03/2024 at 17:18, [[M...] said:

Update 

baylissa asked me in email response for names and now she tells me it’s sad that I made this tread.

well maybe I’m a sad person. 
So forget about this thread she is not interested anymore and just responds with that you all will heal fully even if you are not healed 10 years later 😂😭😵‍💫

Of course she says that. If she said anything else she wouldn’t have a business. That’s why I don’t use the coaches anymore. They are mildly helpful in the beginning but once you start increasing the years off and not recovering they just blame you. By doing this they are inadvertently helping to keep the prescribing practices going. Every coach I have used I asked them about client successes. None of them had any success stories from clients. Every single one them used some variation of once people recover they don’t want to come back and talk about it. I personally do not think that any of them have success stories from clients. If one of them had helped me I would be singing their praises.

[[Ma...]]

[[Gi...]]

On 20/03/2024 at 12:21, [[M...] said:

This is what baylissa says, that even at 11 years off there is still hope for scooby that it will dissapear. 

Some people healed way beyond the 11 years. I know it is very discouraging but we must keep our hope alive.

[[Ga...]]

I agree with Wilding!  There are those of us who cling to hope everyday that our healing will come.  I am now at 48 months after tapering for four months from a one year prescription for Valium, originally given to help with head pain from a fall.  I can’t quite understand why some fellow protracted buddies stay on the boards for years, when they have stated over and over again than they will not heal, that their brain has suffered a permanent injury, and they have no hope.  This is very painful and discouraging to those of us who struggle to keep hope alive and to continue to think positively.  My brother died at a young age from cancer, but he lived longer than others like him because, as his chief cancer doctor at NIH shared with us after his death, he believed beyond all measure that he would be healed and would have many years to enjoy his two young children.

My head is banging away this morning and I could lie in bed and moan and groan, but I won’t!  Probably by this afternoon my head will rebound and allow me to enjoy today…that is all that is a given.

GG

 

Edited March 22 by [Ga...]
Grammar

[[Ma...]]

Oh @[Ga...] i think many Will get much better! But What i have seen for the ppl with my issues 

 

( I cant use my muscles anymkfe as i stiffen up so bad my whole body turns info stone) i havent met anyone who had this for a long time and healed fully, 

A lot of Them said, first i could not walk at all, now 6 years later i can do 5 min at a time. 

For me i have no muscle control at all. Evert kind of movement even Just standing up and getting myself something to drink makes me HAVE to lay horizontale again . IT feels like there is Just no muscles anymore. 

 

I have found a few with my weakness and severe stiffness ( even my neurologist diagnoses me with dystonia) who got better , but havent found Them healed. 

To say you all Will Stay the same as the first year is incorrect, to say everyne heals is also incorrect, 

 

I believe everyone Getd better ,

 

But as you could have Read , Scooby 88 onky got worse. This is awful.

And i pray that the everyone heals mantra stops And a scientidt/ neurologist Will develop some meds to heal the brain. Im sure with the everyone heals mantra alit contributes to What doctors think- IT Will get better anyway do why stop prescribing, 

Edited March 24 by [Ma...]

[[Ga...]]

Hi Mascha, I am so very sorry for your suffering and pain.  Has it been determined that it was the benzos or a sleep drug that caused your present condition….I have not read your history so I don’t know what your particular story is.  If you are confident that you have been irreparably damaged and will not recover, then I certainly respect your position.  I do hope that you will at least get some healing in the future and live the best life you can.  There is always hope🙏

GG

[[Wh...]]

On 06/03/2024 at 04:03, [[M...] said:

I Just had a discussion with baylissa as she blocked me from her page when i said not everyone heals. 

She asked me who is still suffering a lot after years and years. 

I told her i can give you a list of people more than 5 years off who are not even close to healing. Ofcourse she says, well than IT can happen in year 6-7-8-9-10,

But come on, is that true?

Please let me know if you allow me to put you in that list and respond .

I am not here focussing on the not healing because i am negative, i Just want to have insight, 

Hi Mascha, you can add me to your list.  I'm coming up to 15 years off.  I don't have a list of peoples names myself but I also know of many of us that are in the same unhealed boat.  I came back to BB because I got a message from another old timer who is still in it.  There are many of us around the fringes.   I wrote a bunch more but erased it because the hurt and anger come up as I write.  I wish there was love and support for us instead of judgement and shaming.  My main symptom is head and neck pain that still rule my everyday life. It started in the 10th month of my year long taper.  You know what?  It hurts to come to BB, that's why we aren't here.

 

[[Ma...]]

 

3 hours ago, [[W...] said:

Hi Mascha, you can add me to your list.  I'm coming up to 15 years off.  I don't have a list of peoples names myself but I also know of many of us that are in the same unhealed boat.  I came back to BB because I got a message from another old timer who is still in it.  There are many of us around the fringes.   I wrote a bunch more but erased it because the hurt and anger come up as I write.  I wish there was love and support for us instead of judgement and shaming.  My main symptom is head and neck pain that still rule my everyday life. It started in the 10th month of my year long taper.  You know what?  It hurts to come to BB, that's why we aren't here.

I am truely sorry . 
I know there are many. And u know what happens if I tell them ( with them I mean those who are healed ) 

ohh they must drink

ohh they must be still taking medications 

ohh they must have something else going on

All ppl say the same. 
no one cares about those who don’t heal, especially not the coaches

[[Ma...]]

3 hours ago, [[W...] said:

Hi Mascha, you can add me to your list.  I'm coming up to 15 years off.  I don't have a list of peoples names myself but I also know of many of us that are in the same unhealed boat.  I came back to BB because I got a message from another old timer who is still in it.  There are many of us around the fringes.   I wrote a bunch more but erased it because the hurt and anger come up as I write.  I wish there was love and support for us instead of judgement and shaming.  My main symptom is head and neck pain that still rule my everyday life. It started in the 10th month of my year long taper.  You know what?  It hurts to come to BB, that's why we aren't here.

Whoopsie did u ever have a window of that pain? Did it ever let go for a day of two,

or is it constant? Without any relief

my spine neck shoulders and lower back hands arms jaws all hurts like hell, I did have 3 windows of 2 hours were it was tolerable. But I am so weak that I have to be couchridden all day long so I don’t even care anymore if it lets go cause it’s not changing my possibilities to do anything else but laying 

[[Ma...]]

On 22/03/2024 at 11:25, [[G...] said:

Some people healed way beyond the 11 years. I know it is very discouraging but we must keep our hope alive.

Do you know them personally?

[[Ma...]]

On 21/03/2024 at 09:08, [[W...] said:

I understand the frustration. I really do. My heart aches for anyone having to endure like this for a prolonged period of time. But what I struggle to understand is the obsession of trying to convince everyone else. I have lost hope of healing many times but I could never ever take on my conscience to go around convincing others of the same thing. Because the truth is that I don’t know. None of us know.

Please remember that there are people struggling with severe mental sx farther along and they need every speck of hope to make it through days. To give themselves the change to heal. I have no other reason to comment but I know many such BB’s and I always think of them and their bravery.

It’s not about taking away hope. Baylissa said everyone heals and she never spoke to someone who is still sick. Literally EVERYONE she told me. I have spoken to at least 30 who are close to 10 years off not healed, and I am not spending much time here in bb. 
 

I think for people who want to get off we have to tell them the risks. If you are unlucky you be in withdrawal for 10 years. Those people exist.

this is a fact and should not be denied. 
Most people who are protracted have lingering issues , they don’t even heal fully, maybe yes they have a life which is awesome and we would give anything to have a life back, but honestly why say everyone heals? Those who not heal are put aside and asked to shut up . That’s incorrect. I am not here thinking I will never get better but healing is absolutely impossible the last time I was able to walk to a supermarkt was autumn 2021 and the last time I had dinner at the table was February 2022z I have to lay horizontal full day and my whole spine and neck are fucked up because of all the weakness and stiffness. Even if I would get better I need years of intense therapy to be somewhat okay again 

[[Ma...]]

For the long haulers .

A Sweet Friend of mine set up a group for ppl who a severly protracted. All aee close too or after 10 years off. 

Its called 

Benzo extremely protracted 10 years

On Facebook.

[[Wh...]]

23 hours ago, [[M...] said:

Whoopsie did u ever have a window of that pain? Did it ever let go for a day of two,

or is it constant? Without any relief

my spine neck shoulders and lower back hands arms jaws all hurts like hell, I did have 3 windows of 2 hours were it was tolerable. But I am so weak that I have to be couchridden all day long so I don’t even care anymore if it lets go cause it’s not changing my possibilities to do anything else but laying 

I'm really sorry that you're injured so severely Mascha, I was too.  You sound even worse than me.  I was always able to move around.  I have had a couple of breaks.  At 37 months it all suddenly disappeared and was gone for a month then came back.  It went away again in June/20 and stayed gone for 3 whole glorious months but came back again in September.  I wish there was an answer for us, a way to make it go away and stay away.  The nerve and muscle pain is a real problem.  

I do want to say that I am way better than I was and still believe that I'm slowly healing although I'm 15 years older and now have pains that I attribute to aging.  I do lift weights everyday to try to help.

I'm really sorry for your pain.  If I can support you, please reach out.  I've been there.

[[Wh...]]

On 21/03/2024 at 02:08, [[W...] said:

I understand the frustration. I really do. My heart aches for anyone having to endure like this for a prolonged period of time. But what I struggle to understand is the obsession of trying to convince everyone else. I have lost hope of healing many times but I could never ever take on my conscience to go around convincing others of the same thing. Because the truth is that I don’t know. None of us know.

Please remember that there are people struggling with severe mental sx farther along and they need every speck of hope to make it through days. To give themselves the change to heal. I have no other reason to comment but I know many such BB’s and I always think of them and their bravery.

Denying the reality of another is considered gaslighting cruelty and I don't appreciate it.  I didn't appreciate it from doctors and I don't appreciate from fellow BB members or the so-called experts.   How do you feel when people don't believe that what you are experiencing is real.  I wonder what is wrong with people that need to do that.  If it was an obsession with me, I would have been here all along, take note that I stop coming for years at a time because of toxic attitudes like yours.  Old timers are every bit as important as newbies and we deserve respect not the bashing that we get.  The cruelty is beyond my understanding, thank God.

[[Na...]]

4 hours ago, [[W...] said:

I'm really sorry that you're injured so severely Mascha, I was too.  You sound even worse than me.  I was always able to move around.  I have had a couple of breaks.  At 37 months it all suddenly disappeared and was gone for a month then came back.  It went away again in June/20 and stayed gone for 3 whole glorious months but came back again in September.  I wish there was an answer for us, a way to make it go away and stay away.  The nerve and muscle pain is a real problem.  

I do want to say that I am way better than I was and still believe that I'm slowly healing although I'm 15 years older and now have pains that I attribute to aging.  I do lift weights everyday to try to help.

I'm really sorry for your pain.  If I can support you, please reach out.  I've been there.

 

I really wish there was some way we could study stories like yours in detail.

If for some reason symptoms can go away for a month or three, it seems logical to think they can go away longer and maybe permanently.

If we only knew why your symptoms went away temporarily.  My opinion is that stories like yours imply that the physical structure of the brain is intact, but something else is prevent its proper operation. Some sort of positive feedback loop? I don't know. We really need people with the underlying education and knowledge to start to look at these things. 

[[Na...]]

On 25/03/2024 at 17:11, [[M...] said:

Do you know them personally?

There was one well documented story on the old site about a member that healed in year 12. I'll see if I can get it brought over from the old forum.

I have also personally been in contact with a member that healed in year 8.

So I think people can heal even after these long time spans, but does that mean anything is guaranteed? I certainly can't say that.

I can say that none of us should have to suffer that long to recover from what these drugs have done to us and that the medical community has really forsaken their responsibility to admit the harm they've done and make a good faith effort to try to right their wrong. 

 

 

[[Ma...]]

Nathan Arizona 

That person was healed around 5 years. Fully!

But this MR B decided to start drinking drink alcohol and this set him back another 5,5 years .

So , hé didn't heal at the 12 years Mark , hé Just messed up And needed another 5,5 yrs

[[Gi...]]

On 25/03/2024 at 22:11, [[M...] said:

Do you know them personally?

Hi Mascha, 

I have read success stories on here of people recovering after 12/13/15 years.

You will get better and better. You are still in early withdrawal.

Did your muscles not get a little better at all?

Improvements are often imperceptible because the repair process is very slow but it occurs every minute. 

I honestly wish none of us would be in this situation and I sincerely hope justice will be done to all of us.

[[Wh...]]

18 hours ago, [[N...] said:

I really wish there was some way we could study stories like yours in detail.

If for some reason symptoms can go away for a month or three, it seems logical to think they can go away longer and maybe permanently.

If we only knew why your symptoms went away temporarily.  My opinion is that stories like yours imply that the physical structure of the brain is intact, but something else is prevent its proper operation. Some sort of positive feedback loop? I don't know. We really need people with the underlying education and knowledge to start to look at these things. 

Nathan, I wish, I wish so hard that we had the answer for why it suddenly goes away and why it comes back.  

[[Oc...]]

Mascha, I’ve read through your thread and I’m unclear how far off you are. 6 years?

I’m coming up to 10 years off and unfortunately in a 8 week setback but before this setback I had over 12 mths of feeling 80 to 90% and thought i was close to this nightmare being over but unfortunately stress and exertion rattled my CNS. 

Persistent Protracted are vilified in this community and for some reason have to PROVE their timeline isn’t because of meds, booze, or medical procedures. Hate to break it to those early off, some of us don’t do shit and end up f’ed for years!! 

However I’ve been around this community for almost a decade and I personally know of a few ppl who have fully healed. They healed at the 2/3 year mark and have gone on to lead healthy normal lives. 

 I also have a close group of wd friends who are 10/11/12 and 13 years off who aren’t healed and in some ways worse. 

Does that mean we’re doomed and will never be free of this?! Let me put it this way, I have yet to come across anyone who is 20/30 or 40 years off and is still unwell and trust me if these people existed we would hear about it. 

I have spoken to Baylissa throughout my 10 years of wd and have always found her to be very caring and professional, and yeah sure it can be frustrating to heal everyone heals especially when you aren’t but that doesn’t mean it won’t happen. 
 

And for the record it isn’t just Baylissa who says everyone heals, Dr Jennifer Leigh and the late Una Corbett who was in the wd community for over two decades, also stated everyone heals, and for all our sake I’m counting on that being true. 

Edited April 1 by [Oc...]

[[ti...]]

On 29/03/2024 at 08:11, [[O...] said:

Let me put it this way, I have yet to come across anyone who is 20/30 or 40 years off and is still unwell and trust me if these people existed we would hear about it. 

What about people like Barry Haslam? He's 20 something years off with permanent damage. People on this website have been diagnosed with permanent conditions like small fiber neuropathy due to benzo injury.

I just think that the "every one heals" stuff does us all a disservice.  Permanent damage is real and I wish I'd known it was a possibility before I'd touched benzos.  

[[Oc...]]

9 hours ago, [[t...] said:

What about people like Barry Haslam? He's 20 something years off with permanent damage. People on this website have been diagnosed with permanent conditions like small fiber neuropathy due to benzo injury.

I just think that the "every one heals" stuff does us all a disservice.  Permanent damage is real and I wish I'd known it was a possibility before I'd touched benzos.  

 

9 hours ago, [[t...] said:

What about people like Barry Haslam? He's 20 something years off with permanent damage. People on this website have been diagnosed with permanent conditions like small fiber neuropathy due to benzo injury.

I just think that the "every one heals" stuff does us all a disservice.  Permanent damage is real and I wish I'd known it was a possibility before I'd touched benzos.  

I believe Barry was on other psych meds during that 20 year time. 

Regardless.

Life doesn't stop because you’re in wd, ppl age and with that comes other health issues, for example I’m in peri menopause and I’m sure that’s adding to some of my sxs. 

However prior to this acute setback i could have quite happily lived with the lingering symptoms I had daily. What I’m dealing with now, no f’en way! 
 

To say Bliss, Jen, Una and other wd counsellors should warn ppl that perhaps they could be dealing with wd sxs forever is a misnomer because they simply don’t know if that is the case, and I guess they’re basing their summation off what they’ve seen. 
 

And let’s be real, if you were in early acute and someone told you, “hey this could possibly give you sxs you’ll have forever” can you imagine how many unnecessary suicides that would create. 
 

It’s your prescribers job to give you all the facts on what these meds can do, and of course none of us what have willingly taken them if we knew this was a possible outcome, but to shoot down the ppl who actually acknowledge our pain and hold us up, is misplaced anger. 

Edited March 31 by [Oc...]