23 Months out - No windows - Need encouragement

[[jo...]]

Hi all, 

I’m looking for some encouragement as I am 23 months (almost 2 years) out and am still suffering so greatly. I’ve never had a window in this long suffering nightmare. I’ve had a few lessening of symptoms that I had at the start. 

I still have horrific burning in my body, burning brain, legs, shoulders and arms.  My first year I  had the horrific burning mentioned but once I hit month 13 I started getting horrible burning deep nerve pain in my left leg. It feels like someone ripping my leg tissues with a dull knife and being squeezed with barbed wire..the pain is just so intense.

I finally had a nerve conduction test and all was normal. I’ve had multiple labs, mri, etc… all okay except low in vitamin d.  I’ve paid thousands trying to get help including sessions with Baylissa, Angie Peacock, Melissa Bouklier, Dr.Jen and others.

I am now experiencing very bad panic attacks and intense anxiety that I never had in year one. It’s just a nightmare each day with the burning, nerve pain and increased anxiety. 

I try to speak positive over myself, pray, I swim twice a day in an indoor pool to cool the burning and distract. I try to meditate and do somatic exercises. It’s just so very difficult to never have a window or signs of healing. My body is still on fire and the anxiety is just so over the top. The suffering is inhumane yet I try to find gratitude each day. 

I haven’t worked this year as my company severanced several of us and our tech jobs were sent to the Philippines.  I’m grateful for the severance pay but it is going to run out in December and I will need to go back to work. I’m terrified to work again because my body is still so sensitized. The adrenaline and cortisol are so overwhelming and intensify the burning, especially with the anxiety, fear and general conversation in public in public places and interactions with friends. How will I ever be able to go back to work with all this still going on? 

I just can’t believe that I’m still in such bad shape and now the anxiety is causing such fear and discomfort. I keep hoping I will turn a corner. I don’t have family (they passed away tragically years ago, thus the reason I got on an AD, and later the poison Xanax was given to me after I had tapered the AD). It’s so hard to be alone and I’ve lost friends who simply walked away when I needed them most. (they think all this is just anxiety or just in my head). I have a few buddies I’ve met on here and we support each other in private chat. I’m so grateful for the buddies here and this platform. 

Does anyone know why things seem to be worse now?? I thought I would be healed at 6 months off and in two weeks I will hit the 24 month mark. I’m broken hearted to still be in so much physical pain and now the crippling anxiety, panic and fear.

I am a spiritual person and have been on my knees begging for mercy. I just don’t understand why I seem to be worse. I read the success stories but don’t see any similar to my journey. 

I could really use some encouragement and hope. Do we get worse before better? Things have gotten so intense the past few months, I’m just devastated that I’m still suffering so badly. The physical pain and mental symptoms are just indescribable and incredibly hard to bear for so long. 

Bless you. 

 

 

 

Edited October 25, 2023 by [jo...]

[[No...]]

1 hour ago, [[j...] said:

I keep hoping I will turn a corner.

I hear your confusion, and frustration, and pain. I hear your suffering.

I too spent many, many months in a place where nothing seemed to make any sense. A place where the feeling of helplessness was constantly overwhelming, hour after hour, day after day. A place where every hope and expectation was constantly dashed upon the rock of my suffering.

I have no answers for you, I have no cures or remedies. I know of no way to salve your suffering, today, tomorrow, or the next day.

I can only offer a portion of my story. Make of it what you will.

One evening, rapidly pacing the hallways of my apartment, I was exhausted, finished, fed up, utterly lost. When is this going to end? Why is this happening? What the hell is actually happening? Nothing was making any sense.

I was hanging on by a thread, a very worn out and flimsy thread. What I was asking for was what I needed most - I needed everything to just stop.

I needed respite.

I needed a separation for a while.

My response to all the stimulus I was experiencing was to move faster. Pace faster. My response was insufficient.

For whatever reason, to this day I do not know what triggered the memory of this quotation:

Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom. (Victor Frankl)

I needed to find that space, to rest a while in that space.

It took me some time to sort out the rest of what I have to say. In a nutshell here it is.

The reason I was experiencing all these many sensations had a very simple answer. I took a drug for a period of time, I tapered off the drug, I no longer used the drug. Nothing more complicated than that.

My body was doing the best it could to adjust to this recovery. For me, there was no other medical, physical or spiritual reason for the suffering I was experiencing.

The duration of my suffering was indeterminate. No one, myself included, could forecast its duration.

Here is the tough one, or one of the tough ones, all of the sensations, in and of themselves, were harmless.

I was tangled up in trying to figure out a reason for these sensations, trying to wrestle some meaning for all this suffering. For me, there was no meaning other than having used the drug.

How do I untangle myself from all this? How do I find some respite for a while?

What do I do now?

For a while, I literally needed to change the channel. I needed to slow down.

The first time I used the following practice I felt quite foolish and weird. I took an hour and half to make and drink a cup of tea. Each subsequent practice became more and more interesting. After many months of practice I didn't need to continue the practice. I could just tell myself I was "going slow" for a while.

The practice did not diminish the sensations of the work my body was doing. The practice was not a remedy or a cure for anything. I believe what it did for me was create the space I needed for a period of respite.

I changed my response.

GOING SLOW

Walk slowly, with intention, to the place where you make tea.

Pick up the kettle. Look at the kettle. Feel the weight of the kettle. (All with exaggerated slowness.)

Move to the sink. Turn on the tap. Listen to the water. Hear the water. Feel the water.

Hear how the kettle sounds when the water spills into the kettle.

And so on and so forth. Each movement of the process of making the tea. Turning on the stove. Listening for every sound. Smelling everything. Tasting the tea. Slowly with intention. I have nothing else to do but be where I am doing what I am doing.

A full bodied sensory experience. Just like the benzo recovery sensations.

Slow, intentional, exaggerated movements. With intention.

I was literally changing the channel from the benzo sensations to the tea making sensations. That was my respite, that was a space, separate from all else, I could exist in for a while.

The more sensations I could experience in the tea process, the more sensations I could relax into, the more helpful the process.

Sorry for being quite so long winded. Hope this helps a bit.

Be Well.

 

 

[[sh...]]

13 hours ago, [[j...] said:

Hi all, 

I’m looking for some encouragement as I am 23 months (almost 2 years) out and am still suffering so greatly. I’ve never had a window in this long suffering nightmare. I’ve had a few lessening of symptoms that I had at the start. 

I still have horrific burning in my body, burning brain, legs, shoulders and arms.  My first year I  had the horrific burning mentioned but once I hit month 13 I started getting horrible burning deep nerve pain in my left leg. It feels like someone ripping my leg tissues with a dull knife and being squeezed with barbed wire..the pain is just so intense.

I finally had a nerve conduction test and all was normal. I’ve had multiple labs, mri, etc… all okay except low in vitamin d.  I’ve paid thousands trying to get help including sessions with Baylissa, Angie Peacock, Melissa Bouklier, Dr.Jen and others.

I am now experiencing very bad panic attacks and intense anxiety that I never had in year one. It’s just a nightmare each day with the burning, nerve pain and increased anxiety. 

I try to speak positive over myself, pray, I swim twice a day in an indoor pool to cool the burning and distract. I try to meditate and do somatic exercises. It’s just so very difficult to never have a window or signs of healing. My body is still on fire and the anxiety is just so over the top. The suffering is inhumane yet I try to find gratitude each day. 

I haven’t worked this year as my company severanced several of us and our tech jobs were sent to the Philippines.  I’m grateful for the severance pay but it is going to run out in December and I will need to go back to work. I’m terrified to work again because my body is still so sensitized. The adrenaline and cortisol are so overwhelming and intensify the burning, especially with the anxiety, fear and general conversation in public in public places and interactions with friends. How will I ever be able to go back to work with all this still going on? 

I just can’t believe that I’m still in such bad shape and now the anxiety is causing such fear and discomfort. I keep hoping I will turn a corner. I don’t have family (they passed away tragically years ago, thus the reason I got on an AD, and later the poison Xanax was given to me after I had tapered the AD). It’s so hard to be alone and I’ve lost friends who simply walked away when I needed them most. (they think all this is just anxiety or just in my head). I have a few buddies I’ve met on here and we support each other in private chat. I’m so grateful for the buddies here and this platform. 

Does anyone know why things seem to be worse now?? I thought I would be healed at 6 months off and in two weeks I will hit the 24 month mark. I’m broken hearted to still be in so much physical pain and now the crippling anxiety, panic and fear.

I am a spiritual person and have been on my knees begging for mercy. I just don’t understand why I seem to be worse. I read the success stories but don’t see any similar to my journey. 

I could really use some encouragement and hope. Do we get worse before better? Things have gotten so intense the past few months, I’m just devastated that I’m still suffering so badly. The physical pain and mental symptoms are just indescribable and incredibly hard to bear for so long. 

Bless you. 

I am so sorry you are still suffering so much!

I am a bit further. 30 months and I can say that the burning got better. What I do get now is dull shooting pain and still spasms which hurt a lot. But something is changing and as I am craniosacral therapist I do know that changes are a good sign. I also know that healing can make severe pain. That it often gets worse before it gets better. That the body is incredibly slow in doing some healing. And I also know that nothing that I met in my 10 years of being a therapist, nothing is to compare to what we have to endure while in BIND!!!

My anxiety is still horrific on some days but lately also there are days that I do not suffer from it. 

Believe me I know what you’re talking about and very often all I can do is crying but I am sure that we will see an end of all of this. If only we would know when….right!?

I deeply wish you some relief!!! 🍀

[[He...]]

JordanJack,

I haven't stopped thinking of you. I'm very sorry to hear about your continued and unrelenting suffering.  I keep you close in my heart and send my love your way.  NovaScotia and Shamrock have written beautiful words of acknowledgement and I can't improve upon that so I won't try but please take their words to heart and know I'm thinking of you.  

I'm almost to my 29 month mark and still have some intense burning and tingling and aching that comes and goes but is gone more often than in the past and I see that as sure progress.  I hope that yours GOES sooner rather than later.  

Big gentle hugs,

Helen

[[Wi...]]

I hope so! Somehow I am still in the thick of it but my Akathisia-related symptoms got retriggered and became so much worse after medication induced setbacks and to this moment they keep getting worse, change, are all over the place. I talked to Angie Peacock and she said that many people have such an experience that after psych meds other things F them up more and that quite often things get worse before they get better. 

I just want to say that I completely get it, you aren’t alone. I am kind of triggered when I read that someone had some bad symptoms I have been struggling with for months and theirs passed within a month or two because it makes me think I am screwed.

Some of us seem to have all the bad luck but I have read a lot of stories of severe cases that did get better after a few years. I am keeping them in mind all the time. Many of those people were severe and their old posts just show desperation.

Edited October 26, 2023 by [Wi...]

[[de...]]

@[jo...] So sorry you are struggling!!!     Anxiety is the worst.  I have had quite a bit of it this year.   I don't feel as well now as I did last year, BUT I know that healing is happening!!!  As hard as it is to hold on to hope, we know that we will eventually heal and walk away from this suffering.   You are not alone!   

It sounds as if you are using your coping skills and staying positive.   That is so commendable.

And to answer your question, do we get worse before we get better.   Of course, that is so different from person to person, but I do believe some people do get worse before some major healing.

Thinking of you!!!!

[[le...]]

Sorry you are still struggling, I’ve never had a proper window in nearly 5 years, and for some reason felt lot worse the last couple of weeks. I don’t have physical symptoms, mine are mental which are just as horrific. I think it’s case not everyone gets windows, but it doesn’t mean you won’t heal. Really hope you soon get some improvement.

[[Ca...]]

So sorry it's been so rough going and it can be so rough in different ways for each of us. I can relate to the burning sensation, that was like a tight band around my head, lasted about 12 months as I remember. I didn't have that anywhere else nor have I had any other physical symptoms unless I counted the OCD stuff. Mine are mental - depression, anxiety, grief, DP/DR, cognitive impairment, insomnia, intrusive thoughts etc. But it's been a nightmare straight through 7 yrs. Wish there was some other way but I don't know. I try to avoid stress, being so sensitive to it since getting off Benzos.

[[...]]

We must have stopped at near the same time. I’m also 2 weeks from 24 months off. I haven’t had any windows either. I don’t have many of the physical symptoms. I get twitching muscles and cold numb hands and feet but I just ignore those. Mine are all brain symptoms. Burning brain, horrid insomnia, constantly feeling like I have a mainline of coffee flowing thru my brain. I had a lessening of symptoms around 14 months. The akathesia went away but that was the last time I had any improvements. I wish I could offer more encouragement than this. It’s just a long hard road that we cannot see the destination yet. We can imagine how beautiful it will be though. That’s how I keep myself going.

[Guest [...]]

I've been thinking about all the long term sufferers and how there might be something else to consider beyond withdrawal. I'm only (ha, only!) 8 months out and cannot believe how intense my symptoms are but at 24 months I'm not convinced it can be solely down to the drug but wondering if it all comes back to addressing the issues that made us take the drug in the first place. I've had chronic pain for 30 years and have tried pretty much everything "out" there only to realise the "solution" probably lies within. But I do need help to know what to look for within!

So I'm looking again at neuroplasticity and how to apply it.  The original guy for this was Dr John Sarno with his book called "Healing Back Pain" and many have followed in his footsteps.

Here's one of them, based in LA  I think, and with some really good vids on his YT channel. Here is just one example;

 

Just a suggestion to try a different approach.

All the very best to you and everyone else feeling stuck

[[Wi...]]

1 hour ago, [[G...] said:

I've been thinking about all the long term sufferers and how there might be something else to consider beyond withdrawal. I'm only (ha, only!) 8 months out and cannot believe how intense my symptoms are but at 24 months I'm not convinced it can be solely down to the drug but wondering if it all comes back to addressing the issues that made us take the drug in the first place. I've had chronic pain for 30 years and have tried pretty much everything "out" there only to realise the "solution" probably lies within. But I do need help to know what to look for within!

So I'm looking again at neuroplasticity and how to apply it.  The original guy for this was Dr John Sarno with his book called "Healing Back Pain" and many have followed in his footsteps.

Here's one of them, based in LA  I think, and with some really good vids on his YT channel. Here is just one example;

Just a suggestion to try a different approach.

All the very best to you and everyone else feeling stuck

I am familiar with that approach. I have been trying to implement somatic tracking but for me the symptoms are too scary now. I can utilise this with the milder ones but akathisia type symptoms running all over the body and changing neurological symptoms scare me bad. I haven’t been able to send consistent messages of safety to be honest.

[Guest [...]]

25 minutes ago, [[W...] said:

I am familiar with that approach. I have been trying to implement somatic tracking but for me the symptoms are too scary now. I can utilise this with the milder ones but akathisia type symptoms running all over the body and changing neurological symptoms scare me bad. I haven’t been able to send consistent messages of safety to be honest.

I think the idea with somatic tracking (bit of a fancy terminology for feeling emotion in the body ) is to allow whatever symptoms come up and offer no resistance , basically surrender to them. Sounds scary at first but actually resisting will produce more tension in the muscles than surrendering. I have akathisia too and find I can almost float my way through the twists and turns, and imagine I am flying through strong turbulence on an aircraft.  Take it easy.

[[Wi...]]

Mine is not severe at least not yet but I am sooo scared of the feelings it causes. I do somatic tracking with paresthesias and it kind of works, I am not scared of these and I am able to observe them. But it’s hard not to think the brain has been f’d up! I have been in a brutal setback for over a year. 

[[jo...]]

11 hours ago, [[G...] said:

I've been thinking about all the long term sufferers and how there might be something else to consider beyond withdrawal. I'm only (ha, only!) 8 months out and cannot believe how intense my symptoms are but at 24 months I'm not convinced it can be solely down to the drug but wondering if it all comes back to addressing the issues that made us take the drug in the first place. I've had chronic pain for 30 years and have tried pretty much everything "out" there only to realise the "solution" probably lies within. But I do need help to know what to look for within!

So I'm looking again at neuroplasticity and how to apply it.  The original guy for this was Dr John Sarno with his book called "Healing Back Pain" and many have followed in his footsteps.

Here's one of them, based in LA  I think, and with some really good vids on his YT channel. Here is just one example;

Just a suggestion to try a different approach.

All the very best to you and everyone else feeling stuck

Unfortunately, some people do just take years to heal. We are all different and the nervous system healing can be slow. Especially when certain genetic factors or other come into play. 
 

[[jo...]]

On 25/10/2023 at 19:40, [[N...] said:

I hear your confusion, and frustration, and pain. I hear your suffering.

I too spent many, many months in a place where nothing seemed to make any sense. A place where the feeling of helplessness was constantly overwhelming, hour after hour, day after day. A place where every hope and expectation was constantly dashed upon the rock of my suffering.

I have no answers for you, I have no cures or remedies. I know of no way to salve your suffering, today, tomorrow, or the next day.

I can only offer a portion of my story. Make of it what you will.

One evening, rapidly pacing the hallways of my apartment, I was exhausted, finished, fed up, utterly lost. When is this going to end? Why is this happening? What the hell is actually happening? Nothing was making any sense.

I was hanging on by a thread, a very worn out and flimsy thread. What I was asking for was what I needed most - I needed everything to just stop.

I needed respite.

I needed a separation for a while.

My response to all the stimulus I was experiencing was to move faster. Pace faster. My response was insufficient.

For whatever reason, to this day I do not know what triggered the memory of this quotation:

Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom. (Victor Frankl)

I needed to find that space, to rest a while in that space.

It took me some time to sort out the rest of what I have to say. In a nutshell here it is.

The reason I was experiencing all these many sensations had a very simple answer. I took a drug for a period of time, I tapered off the drug, I no longer used the drug. Nothing more complicated than that.

My body was doing the best it could to adjust to this recovery. For me, there was no other medical, physical or spiritual reason for the suffering I was experiencing.

The duration of my suffering was indeterminate. No one, myself included, could forecast its duration.

Here is the tough one, or one of the tough ones, all of the sensations, in and of themselves, were harmless.

I was tangled up in trying to figure out a reason for these sensations, trying to wrestle some meaning for all this suffering. For me, there was no meaning other than having used the drug.

How do I untangle myself from all this? How do I find some respite for a while?

What do I do now?

For a while, I literally needed to change the channel. I needed to slow down.

The first time I used the following practice I felt quite foolish and weird. I took an hour and half to make and drink a cup of tea. Each subsequent practice became more and more interesting. After many months of practice I didn't need to continue the practice. I could just tell myself I was "going slow" for a while.

The practice did not diminish the sensations of the work my body was doing. The practice was not a remedy or a cure for anything. I believe what it did for me was create the space I needed for a period of respite.

I changed my response.

GOING SLOW

Walk slowly, with intention, to the place where you make tea.

Pick up the kettle. Look at the kettle. Feel the weight of the kettle. (All with exaggerated slowness.)

Move to the sink. Turn on the tap. Listen to the water. Hear the water. Feel the water.

Hear how the kettle sounds when the water spills into the kettle.

And so on and so forth. Each movement of the process of making the tea. Turning on the stove. Listening for every sound. Smelling everything. Tasting the tea. Slowly with intention. I have nothing else to do but be where I am doing what I am doing.

A full bodied sensory experience. Just like the benzo recovery sensations.

Slow, intentional, exaggerated movements. With intention.

I was literally changing the channel from the benzo sensations to the tea making sensations. That was my respite, that was a space, separate from all else, I could exist in for a while.

The more sensations I could experience in the tea process, the more sensations I could relax into, the more helpful the process.

Sorry for being quite so long winded. Hope this helps a bit.

Be Well.

@[No...] Thank you so much for your wonderful words of encouragement and support. Sharing your wisdom of respite and healing is such a lovely view of trying to separate ourselves from these awful sensations. You are truly an extraordinary example of being a warrior in all aspects of this journey. 
Thank you for taking the time to write your story of how you were able to view yourself with a space between your body/mind and the sensations. I love the expression of making and preparation of the tea. What a lovely writer you are. I appreciate your encouragement and kind words. 
Bless you as you continue to heal. Sending you big hugs. 💕

[[jo...]]

On 26/10/2023 at 07:28, [[s...] said:

I am so sorry you are still suffering so much!

I am a bit further. 30 months and I can say that the burning got better. What I do get now is dull shooting pain and still spasms which hurt a lot. But something is changing and as I am craniosacral therapist I do know that changes are a good sign. I also know that healing can make severe pain. That it often gets worse before it gets better. That the body is incredibly slow in doing some healing. And I also know that nothing that I met in my 10 years of being a therapist, nothing is to compare to what we have to endure while in BIND!!!

My anxiety is still horrific on some days but lately also there are days that I do not suffer from it. 

Believe me I know what you’re talking about and very often all I can do is crying but I am sure that we will see an end of all of this. If only we would know when….right!?

I deeply wish you some relief!!! 🍀

@[sh...] Thank you so much for your thoughtfulness and support. I’m so sorry that you too have had to endure such pain. The long suffering of it all has certainly added to the anxiety I now deal with.

How interesting that you are a craniosacral therapist and are no le able to see changes taking place. It does offer some peace in your view that healing can create severe pain. It’s just so hard when the months go by with no windows with only increased pain and symptoms. 

I’m so glad the burning got better for you but am sorry you are still dealing with the anxiety at times along with the shooting pain and spasms. I get the those pains as well; mostly in my legs. It’s excruciating at times. I sure hope this lifts for us soon.

Thank you again for your encouragement. am sending you healing hugs. Bless you. 🤗💕

[[jo...]]

On 26/10/2023 at 09:40, [[H...] said:

JordanJack,

I haven't stopped thinking of you. I'm very sorry to hear about your continued and unrelenting suffering.  I keep you close in my heart and send my love your way.  NovaScotia and Shamrock have written beautiful words of acknowledgement and I can't improve upon that so I won't try but please take their words to heart and know I'm thinking of you.  

I'm almost to my 29 month mark and still have some intense burning and tingling and aching that comes and goes but is gone more often than in the past and I see that as sure progress.  I hope that yours GOES sooner rather than later.  

Big gentle hugs,

Helen

@[He...] Thank you so much sweet Helen. I sure have been thinking of you too. I so much appreciate your healing words of comfort. I’m so sorry you’re still experiencing some of the intense burning, tingling and aching at 29 months.

You have suffered so courageously and I’m so glad things are improving. They will continue to do so for you. I keep you close at heart. 29 months is a great achievement Helen! Wow! I hope you and your husband have been able to enjoy summer. I’m looking forward to the cooler weather as it feels much better for the burning brain and body.

I miss seeing everyone from our old group but hopefully the others will join us here in the new long haulers group soon. I think of everyone and hope that all is well with them.

I take little breaks from checking the site but I’m always happy to see some of us with updates. You have always been so sweet and supportive. Thank you always and I am latching on to your big hugs. I am sending you hugs and love and pray renewed healing will soon be yours. Thank you again!

Bless you! 💕🙏💕

 

 

[[jo...]]

On 26/10/2023 at 14:04, [[W...] said:

I hope so! Somehow I am still in the thick of it but my Akathisia-related symptoms got retriggered and became so much worse after medication induced setbacks and to this moment they keep getting worse, change, are all over the place. I talked to Angie Peacock and she said that many people have such an experience that after psych meds other things F them up more and that quite often things get worse before they get better. 

I just want to say that I completely get it, you aren’t alone. I am kind of triggered when I read that someone had some bad symptoms I have been struggling with for months and theirs passed within a month or two because it makes me think I am screwed.

Some of us seem to have all the bad luck but I have read a lot of stories of severe cases that did get better after a few years. I am keeping them in mind all the time. Many of those people were severe and their old posts just show desperation.

Hi @[Wi...] I’m so sorry you have been struggling as well. It is truly difficult as you said, to see others healing much sooner and those who get windows which provide hope for the healing.

I’ve had multiple sessions with Angie as well and everyone is so different, yet the anecdotal evidence is that everyone heals. I think for me, if the burning body and deep nerve pain would lift, then the anxiety wouid be eased. I didn’t have the anxiety in year one, but I think having pain for so long has manifested the anxiety and fear. It’s the raging cortisol and adrenaline with a CNS that has been disregulated, now trying to find homeostasis.

I hope you feel better soon. Try not to go down the rabbit hole with the triggering stories, as I have learned that it’s necessary to protect my Benzo brain that wants to latch on to those. Everyone is different and often times we don’t know the full story.

Take good care and be strong. You will get through this. Hugs! 🤗

[[jo...]]

On 26/10/2023 at 14:52, [[d...] said:

@[jo...] So sorry you are struggling!!!     Anxiety is the worst.  I have had quite a bit of it this year.   I don't feel as well now as I did last year, BUT I know that healing is happening!!!  As hard as it is to hold on to hope, we know that we will eventually heal and walk away from this suffering.   You are not alone!   

It sounds as if you are using your coping skills and staying positive.   That is so commendable.

And to answer your question, do we get worse before we get better.   Of course, that is so different from person to person, but I do believe some people do get worse before some major healing.

Thinking of you!!!!

Hi @[de...] thank you so much for your encouraging words and compassion. I’m so sorry that the anxiety has been difficult for you this year as well. It’s so odd that I didn’t have the anxiety in year one, but i the the relentless burning nerve pain and burning brain for so many months without a window has allowed the anxiety and stress to increase greatly.  It’s just so very difficult to handle such pain each day, but like you said, healing is happening.  May it be so!

I so try to speak positive to myself but there are days when I think I can’t handle onr more minute, yet we do. I am thinking I must be one of those that gets worse before better because the past several months the “gas is being mashed”, We press on!

Thank you for reminding me that I am not alone, although at times, it certainly feels like I am an extreme case and very alone in my circumstances. You are a warrior and so kind to encourage many people on this platform.

I hope you start seeing the anxiety and any other symptoms take their leave soon. Thank you again. I’m sending you big hugs! 💕

[[jo...]]

On 27/10/2023 at 12:19, [[G...] said:

I've been thinking about all the long term sufferers and how there might be something else to consider beyond withdrawal. I'm only (ha, only!) 8 months out and cannot believe how intense my symptoms are but at 24 months I'm not convinced it can be solely down to the drug but wondering if it all comes back to addressing the issues that made us take the drug in the first place. I've had chronic pain for 30 years and have tried pretty much everything "out" there only to realise the "solution" probably lies within. But I do need help to know what to look for within!

So I'm looking again at neuroplasticity and how to apply it.  The original guy for this was Dr John Sarno with his book called "Healing Back Pain" and many have followed in his footsteps.

Here's one of them, based in LA  I think, and with some really good vids on his YT channel. Here is just one example;

Just a suggestion to try a different approach.

All the very best to you and everyone else feeling stuck

Hi @[GA...] thank you for your insights. I’m so sorry you’ve suffered with back pain for so long. I do think there is great potential with neuroplasticity training however BIND is such a complex journey so it is often difficult to apply.

Angie Peacock who is a Benzo coach, has multiple videos on her channel that discuss in depth all the issues that occur because of BIND and ABIND. In one of my sessions with her she mentioned that neuroplasticity training shouldn’t be cautionary until we heal from the BWD but I do think the concept of somatic methods to calm our mind and redirecting the pain can be helpful. Thank you for sharing the video and I wish you the very best in your continued healing. 

Here is a link to Angie’s YouTube channel. She has webinars and you can also see the personal videos of her journey.  It took her a very long time to heal. She is now a valuable advocate and coach in the community. 
https://www.youtube.com/@AngiePeacockMSW/videos

Be well. 🤗

 

Edited October 29, 2023 by [jo...]

[[jo...]]

On 27/10/2023 at 02:29, [[l...] said:

Sorry you are still struggling, I’ve never had a proper window in nearly 5 years, and for some reason felt lot worse the last couple of weeks. I don’t have physical symptoms, mine are mental which are just as horrific. I think it’s case not everyone gets windows, but it doesn’t mean you won’t heal. Really hope you soon get some improvement.

Thank you so much @[le...]. It’s nice to hear from you. I’m so sorry you haven’t gotten any windows in five years and that things have seemed worse the past few weeks.

The mental symptoms can be so brutal as well.  It’s so odd how some people get physical symptoms and some get only mental, whereas others get both. It’s so complicated to begin to comprehend the tumultuous storm that can BWD can manifest. Baylissa says that intensity of symptoms is not an indicator of longevity of symptoms but it’s hard to believe when we are in the middle of it all.

I sure hope you feel better and that your complete is very soon. Take good care and thank you again for your encouragement. Big hugs! 💕

[[jo...]]

On 27/10/2023 at 05:15, [[C...] said:

So sorry it's been so rough going and it can be so rough in different ways for each of us. I can relate to the burning sensation, that was like a tight band around my head, lasted about 12 months as I remember. I didn't have that anywhere else nor have I had any other physical symptoms unless I counted the OCD stuff. Mine are mental - depression, anxiety, grief, DP/DR, cognitive impairment, insomnia, intrusive thoughts etc. But it's been a nightmare straight through 7 yrs. Wish there was some other way but I don't know. I try to avoid stress, being so sensitive to it since getting off Benzos.

Hi @[Ca...] thank you so much for your encouraging words. I’m so sorry you experienced the burning as it is truly just the worst symptom for me. I’m so glad it left you.

I’m sorry that you’re still dealing with the challenging mental symptoms which can be so very distressing. You’ve been suffering for a long time but it just shows how very brave and courageous you are.

I agree, our CNS is just so very sensitized from BIND and sadly it takes a longer time for some of us, but Baylissa and others say that everyone does heal so I am hoping we both turn a corner soon. Stress is something hard to avoid and the stress of the withdrawal and long suffering make it even more heightened, understandably.

I appreciate your kind words and I am sending you healing hugs! Take good care and thanks again! 🤗

[[jo...]]

[[jo...]]

Hey @[jo...] I’m 28 months out and also have this constant burning (neuralgia?). It’s a mix of burning and tightness. Head, brain, shoulders, back, neck and soles of feet. I hardly get windows also. Sorry this isn’t very encouraging. Just to say I understand and you’re not alone.  

[[Na...]]

On 27/10/2023 at 12:19, [[G...] said:

I've been thinking about all the long term sufferers and how there might be something else to consider beyond withdrawal. I'm only (ha, only!) 8 months out and cannot believe how intense my symptoms are but at 24 months I'm not convinced it can be solely down to the drug but wondering if it all comes back to addressing the issues that made us take the drug in the first place. I've had chronic pain for 30 years and have tried pretty much everything "out" there only to realise the "solution" probably lies within. But I do need help to know what to look for within!

So I'm looking again at neuroplasticity and how to apply it.  The original guy for this was Dr John Sarno with his book called "Healing Back Pain" and many have followed in his footsteps.

Here's one of them, based in LA  I think, and with some really good vids on his YT channel. Here is just one example;

Just a suggestion to try a different approach.

All the very best to you and everyone else feeling stuck

Is the neuroplasticity/neuroretraining working so far for your chronic pain?