18 - 30 Month Plus Group

[[Te...]]

Does anyone else have thoughts of going to ER cause they feel so bad....but I got so many pains I wouldn't even know which to address to doctor....I swear some days I really feel like I'm dying....

I'm just seeing if anyone else ever feels like their dying from painful symptoms or is it just me...

 

I really hate this...idk ..how my blood test can look so great....but I have so many tight stiff muscles, problems breathing,jaw is tight...heck I sneeze and my face squeezes or gets like tight....does this ever get better..

 

Ok ...sorry ....I'm Debbie downer.....just really need a brak from this misery..

 

 

Hugs

TM

 

[[Te...]]

Does anyone else have thoughts of going to ER cause they feel so bad....but I got so many pains I wouldn't even know which to address to doctor....I swear some days I really feel like I'm dying....

I'm just seeing if anyone else ever feels like their dying from painful symptoms or is it just me...

 

I really hate this...idk ..how my blood test can look so great....but I have so many tight stiff muscles, problems breathing,jaw is tight...heck I sneeze and my face squeezes or gets like tight....does this ever get better..

 

Ok ...sorry ....I'm Debbie downer.....just really need a brak from this misery..

 

 

Hugs

TM

 

[[Lo...]]

Hi TM , yes and yes. All the pain / intrusive thoughts and basically everything you just described. Stretch up as bes you can , heat creme and hot showers for the win 😊

 

 

[[ne...]]

Yes TM!

 

I`ve been so close to going but as you say how can we explain this pain?  I hurt just about everywhere and its way beyond anything I`ve ever experienced before stopping the benzo.

I`ve got an appointment with the pain clinic later this month but I`m not sure if there`s anything they can do ...no doubt they'll offer me Lyrica but I`m too scared to try those.

 

You`re not alone ...hang on as we`ve never heard of anyone not healing from this.

[[Lo...]]

Seems to be the muscle pain / soreness is very common in the later stages of protracted WD

[[ne...]]

Lockie and TM. Have you had the pain since the start?  For me this started the day after stopping the benzo so I can only imagine my muscles were a bloody mess (they still are.)

I`ve had nerve pain too and don't want to talk it up again but lately my muscles have been tight and stiff and very painful!  Back pain is the worst with stiff neck and burning legs ( I think the burning legs is classed as nerve pain but they`re not as bad as the nerve pain when it hits my back...that ones a bugger)

 

Can you describe your pain?  My description is that it feels raw ....never felt pain like it before ...ever!

 

 

[[...]]

NCT, you describe how my body feels and I get what you mean by not talking it up. My body seized up through the night and I have had pain all night. I did some light gardening yesterday just to distract and keep moving so I don't know if that contributed, but it wasn't anything strenuous. Today it feels like my skeleton is being pulled by all the muscles and burning. It's scary.

 

TM, many times have I wanted to go. No point they are clueless.

[[Lo...]]

Lockie and TM. Have you had the pain since the start?  For me this started the day after stopping the benzo so I can only imagine my muscles were a bloody mess (they still are.)

I`ve had nerve pain too and don't want to talk it up again but lately my muscles have been tight and stiff and very painful!  Back pain is the worst with stiff neck and burning legs ( I think the burning legs is classed as nerve pain but they`re not as bad as the nerve pain when it hits my back...that ones a bugger)

 

Can you describe your pain?  My description is that it feels raw ....never felt pain like it before ...ever!

 

My muscle pain would be described more accurately as tightness leading to pain. Upper back and neck very tightly bound up on and off since i jumped. Seemed to get worse from a year off and turned into one of my core symptoms

[[ne...]]

marj, for me even light gardening will definitely set the pain off. Some speak of exercising and wish I could, but through trial and error I found the pain gets even worse if I try anything slightly strenuous.

 

As for talking things up!  I swear this bugger can hear us and read too!  Yesterday my neck pain was better, so I wrote it in my journal.

Today I feel as though my neck`s been hit with a baseball bat!!

 

Do you get the boaty stuff too marj?

Went to put washing out earlier and almost face planted with dizziness.

 

Lockie, Yes I can relate to the tightness, its hit my lower back and neck today and as I said to marj , some boatiness for good measure. 

 

This has to end sometime ...just wish we knew when!

[[Mi...]]

Texas,

 

Yes, yes, yes!

I could have written your post...  Breathing stuff, pains.....

I can't believe this at 38 weeks!

Although  I tapered in 6 wks....  ugh...

[[Si...]]

Today I felt sick and emotionally down.  Want to cry, but can't muster up the strength.  This is very difficult. 

 

Sofa

 

Hi sofa my good friend. Sorry I haven't been on. I had to take a break for a while. I'm so sorry you aren't feeling good. You are going to get through it, I promise. 

 

I've just recently started feeling a little better about a week and a half ago. Still not feeling perfect, but my sleep seems to have improved some. I'm getting a lot of fatigue in the afternoon, and some headaches. I'm scared to say anything, as I'm paranoid to jinx myself. I just passed 4 months since my setback. Hopefully I'm rounding a corner. This will be my third round and I don't intend on doing it again if I can help it.

 

Hope all of the rest of you are doing ok these days. We did Easter Mass this past Sunday. I was raised Protestant, but my wife is Catholic. Nothing else too exciting on my end to talk about.

[[...]]

Today I felt sick and emotionally down.  Want to cry, but can't muster up the strength.  This is very difficult. 

 

Sofa

 

 

Sofa, so sorry Hun, I must have missed this. You're not alone sweetheart. We have been at this along time and should be so proud of how far we have come, because this is the hardest fight for life that we will go through. But look, we are still here fighting the fight together. A lot of us have clicked on here over the last few years, some have gone and some new ones have come along. I believe we can do this and I'm saying that through gritted teeth as I too am worn down, exhausted and dismayed from what seems like juggling plates blindfolded. No one knows our pain, our struggle but ourselves as it's OUR fight. We are in there somewhere, for now we just have to get through each day the best we can, like we have done EVERY day so far. Apparently there is an end to this, however it appears universal to not believe it until it happens. I can't tell you the times Ian has said "you won't believe you will get better, nobody does". That's what makes this so hard, that and the inability to mostly think positive thoughts like we used to and that is a symptom, a FACT. We can try and we do, however it is had beyond belief until recovery happens and then it will be so very hard not to. I've had this week off work, thank God as I'm bad, I've done nothing hardly and I hate it, it's not me. It's my favourite time of year and I can't feel it and I'm heartbroken, but that's how it is. I haven't always been like this as how would I know it's my favourite time of year and my God I would never have lived like this, raising 2 kids, going through some pretty shitty times. Our CNS and brain function are still screwed Sofa, it's not our fault. We are good here at supporting each other, we are all suffering and we understand each other.

 

Hang in there love

[[...]]

Oh Siggy, so glad to hear. Keep us posted Hun.

 

My sleep has improved, but it's toxic, I feel poisoned and lots of nerve pain through the night even in dreams, so I know it's not in my mind; it's my brain. I'm off this week and for the life off me cannot imagine going back to work. I will though, I have no choice. So sick of this shit.

[[so...]]

Marj and Siggy,

 

Thank you so much for your soothing words of love and support.  I feel your caring as I read.  We really are here for each other.

 

It blows my mind that this is taking so long to resolve.  I have never had a break from the dreadful 3am cortisol alarm.  The needle feels stuck in the record groove.  So many others have had what I have and it went away for them earlier in the process.  Not for me.  What a way to start every day.

 

Yesterday was a mild day and I didn't have the evening racing heart run, which has plagued me for about a month.  I'm down to two symptoms now--the early morning cortisol and the 24/7 head pulsing.  Constant reminders that I'm still fighting the fight.  It's so hard to believe that I will eventually be rid of this crap when it is so relentless.  Always pacing and telling myself it will go.  Exhausting.

 

Siggy, I'm so happy for you.  You are pulling out of your setback just as you should.  Don't worry about jinxing yourself.  Enjoy the healing your body is accomplishing.  It is the natural result of your body's hard work.  You can exhale now.

 

Marj, I keep telling myself that, when this is behind me, I will see the recovery process for the healing miracle that it was.  Until then, I just have to be a good passenger and let my body do its thing.  If we are all truly at the end of this journey, it is definitely a bumpy landing.  But then, why shouldn't it be bumpy?  The whole damn thing has been full of potholes, sharp rocks, waves crashing over us, branches poking us in the eye...other-worldly brutal.

 

Another day closer.

 

Sofa

[[bc...]]

Haven`t posted for some time.....been going thru H*** and still not over......the usual bad anxiety and all that goes with it, tremors, overbreathing, fear, irritability, overwhelmed....not ''me'' (dp),  not sleeping well....up with this adrenaline/cortisol surges.....also very bad shoulder, arm and wrist pain...barely getting thru..no breaks....no windows.

 

Good to read that other are getting some better times, but sad to read that so many of us are still struggling with ugly sxs. 

 

We will all get thru this...wish I knew when that would be....a time limit would make it easier to get thru each day, knowing exactly when things would be good again.  Wishing you all some windows..........hugs

[[so...]]

Missed you Bcalm.  We will all get through this and leave the BB forum someday, keeping in our prayers all of those who are where we are now.  We know the pain.  We know the struggle.  Our hearts ache for each other because we KNOW.

 

Sofa

[[bc...]]

Thank you sofa......hope you will be feeling better real soon.  This journey is horrendous.....too many potholes and I have hit everyone....this anxiety/cortisol/adrenaline all day and into the night is brutal......and never seems to let up....feel like an alien in my own mind and body.

 

Someday....hopefully soon....this will be behind us....but in the meantime it is very hard to cope with all of this, day in and day out...want some peace and calm in my mind and body.........want to live my life not just exist..........hugs

[Guest [Ty...]]

 

 

I know of someone who healed and recently had a lot of blood work done.  There is a blood test to determine if there is any damage to gaba receptors and neurotransmitters.  After 16 years on 30 different drugs, including multiple benzos, absolutely NO DAMAGE was found in the gaba receptors and the various neurotransmitters.  Benzodiazepines, the doctor told her, DO NOT CAUSE PERMANENT DAMAGE.  Yes, it takes a long time to get the imbalance between the receptors and neurotransmitters back in synch, but they ARE NOT DAMAGED.  The body is constantly trying to reach homeostasis every minute of every day.

 

 

Fascinating.

if you will, please provide the name of this test.

Thanks much.

 

Not to bother you, but if you can provide the test name and any information

about the testing your friend/acquaintance underwent, that would be

appreciated.  Thanks and hope you feel better soon.

[[so...]]

Tyler,

 

I believe her functional medicine doctor is Dr. Anup Kanodia in Ohio.  You can google him.  Other than that, you need to do your own research on these tests that are available.  There is a lot of info on the internet.  I am reluctant to refer doctors to anyone on this forum for obvious reasons.  You might think the guy is an idiot, while my friend has been helped by him.  Situations and medical histories of individuals come into play and yield different outcomes.

 

There is no magic bullet to cure withdrawal.  If you are looking for reassurance that benzos do not cause permanent damage, that was the only purpose of my post regarding the test results of my friend. 

 

Sofa

[Guest [Ty...]]

Tyler,

 

I believe her functional medicine doctor is Dr. Anup Kanodia in Ohio.  You can google him.  Other than that, you need to do your own research on these tests that are available.  There is a lot of info on the internet.  I am reluctant to refer doctors to anyone on this forum for obvious reasons.  You might think the guy is an idiot, while my friend has been helped by him.  Situations and medical histories of individuals come into play and yield different outcomes.

 

There is no magic bullet to cure withdrawal.  If you are looking for reassurance that benzos do not cause permanent damage, that was the only purpose of my post regarding the test results of my friend. 

 

Sofa

 

Thanks for responding, Sofa.    I see that JJ and Lockie had also requested from you the name of this test after reading your post.

 

This isn't about my looking for a magic bullet nor seeking the name of your friend's doctor, nor seeking a referral of any kind.

 

This is simply about requesting the name of the blood test that determined there was no damage to GABA receptors and neurotransmitters.   

 

I inquire about the test name, because to my knowledge there is no such test. 

 

While I think it is wonderful to offer hope to others, I think we have to be very careful not to go in a direction that might lead

someone to undergo expensive testing that may be inconclusive.     

 

For anyone who may be interested (perhaps Lockie or JJ), here's a well-written article:

 

https://bebrainfit.com/neurotransmitter-testing/

 

"Neurotransmitter Testing:  Is It Effective?  Is There a Better Alternative?"

 

When alluding to a  test and specifically attaching to the test results that there has been no GABA receptor damage and no damage to neurotransmitters, that creates interest. 

 

A thinking person is going to question such a statement.

 

You have written that "situations and medical histories of individuals come into play and yield different outcomes" 

Yield different outcomes in what?

That statement is irrelevant as to whether there is effective/reliable GABA receptor and neurotransmitter testing. 

 

You have dodged the simple question as to the name of this blood test and you have tried to make this about other things.

 

I'm not here to debate whether neurotransmitter testing is effective/reliable or valid.

What I am here to state is that we have to be responsible in the way we put information out on this forum --

we can offer hope without making statements that may lead others to undergo expensive, inconclusive testing.

 

Thanks.

 

 

 

 

 

 

 

 

grammar edit

[[so...]]

Tyler,

 

I already stated that I have no intention of being tested myself, so I am certainly not promoting the reliability of this testing.  I wish I had never said anything.  I regret it now.  I'm not keeping the test a big secret.  I simply don't know the name of it.  My SIL is a doctor and he himself says there are many tests that can be performed, but the reliability and the lab interpretations of many are questionable.

 

Please google as much as you want about neurotransmitter testing, if you so choose.  I was merely posting a positive "story" that happened to a long term poly-drugged benzo survivor to give hope to others that they are not permanently damaged.  Believing in the possibility of permanent damage serves no constructive purpose, in my opinion, but we all choose to believe what we want.

 

Once again, I repeat, I never promoted this testing and I am not at all curious what my own testing would show.  I do not believe benzodiazepines cause permanent damage because I choose to hold onto that belief and my sanity.

 

Sofa

 

 

[Guest [Ty...]]

Tyler,

 

I already stated that I have no intention of being tested myself, so I am certainly not promoting the reliability of this testing.  I wish I had never said anything.  I regret it now.  I'm not keeping the test a big secret.  I simply don't know the name of it.  My SIL is a doctor and he himself says there are many tests that can be performed, but the reliability and the lab interpretations of many are questionable.

 

Please google as much as you want about neurotransmitter testing, if you so choose.  I was merely posting a positive "story" that happened to a long term poly-drugged benzo survivor to give hope to others that they are not permanently damaged.  Believing in the possibility of permanent damage serves no constructive purpose, in my opinion, but we all choose to believe what we want.

 

Once again, I repeat, I never promoted this testing and I am not at all curious what my own testing would show.  I do not believe benzodiazepines cause permanent damage because I choose to hold onto that belief and my sanity.

 

Sofa

 

Sofa,

I wish healing for you

wish better health to everyone

-tyler7

[[...]]

Tyler,

 

Sofa would never try to mislead anyone. On the contrary, she is massively supportive here. I think this is being blown out of proportion. She is just giving third party information and not making any claims whatsoever. I don't think this group is the place to go into such debate. Maybe one of the other threads would be more appropriate. You can start discussions away from the support groups.

[Guest [Ty...]]

Tyler,

 

Sofa would never try to mislead anyone. On the contrary, she is massively supportive here. I think this is being blown out of proportion. She is just giving third party information and not making any claims whatsoever. I don't think this group is the place to go into such debate. Maybe one of the other threads would be more appropriate. You can start discussions away from the support groups.

 

Thanks, Marj.

Sofa and I have resolved this issue.

 

 

[[...]]

Ok, that's good. This thing causes so much distress and confusion. Please, hang here if you need support as it's a lovely group.

 

Best wishes to you