12-24 months and up support group

[[...]]

Hi everyone,

So sorry for those of us in a real bad wave.

The burning nerve pain is just relentless for me.

I truly don’t understand why I’m so much worse it seems.

It feels like a blow torch against my head. I’ve had heat surges in my left leg and terrible muscle pain that I haven’t had before. The muscle pain is new.

 

My gosh, how much pain can a body take?? It’s torment from the pit of hell. I just want to run and get out of my skin! There is no escaping this. The Benzo bully is telling me that it looks like I’m not going to heal. I’m bullied so much my the bully because the burning is so bad. I’m not coping as well as I use to. I’m just exhausted with a broken spirit. My faith was always so strong, but I battle every day. It’s hard without family or support. Friends don’t understand and are too busy with their happy lives and holiday festivities. So sad to feel abandoned. 😢

 

I’m starting month 13 and I don’t know how much more I can take. I don’t know what to do?

The CT truly hurt me, yet it was only 0.025 of Xanax for 7 months but prior to that I was on an ssri for 10 years, and had tapered 8 months earlier. I’ve got to do something to calm down my CNS from this burning but I don’t know what can be done? Maybe an SSRI woukd help? I already take gabapentin to help and it does help some, and I’ve tapered it a little and don’t want to increase. I don’t like being on it but it does help - some. I know I’ll have to taper it once I heal. I’ve seen others that used it for burning relief but at much higher dosages. The tinnitus hasn’t been as loud lately so that’s a plus.

If the burning would stop on my cranium I would buy everyone of you roses. 🌹

 

I’m sitting here with my feet in the tub of cold water and and ice pack around my neck.

I pray for mercy and healing but sadly I feel like God doesn’t hear my cries. I know He does though.

I’m at the bottom of the pit clawing my way to survive this hell on earth.

If I could but have one day of not burning!

My goodness I covet your prayers. The anxiety is raging because of the pain!

 

LiveLife, I’m so glad you had a window but am sorry the symptoms have returned. It’s so cruel.

Jorgen, I do know what you mean about the pipe in your head. I have that too on my left side. So very distressing. I pray the burning will cease for both of us.

JBen, I’m glad you’ve had some windows and pray your nerve pain and anxiety will resolve soon.

LadyDen, GG, and Decatur, I hope your good days will keep going forward; how wonderful for you.

 

This season is my favorite and I’m so sad that I’m not enjoying it. Friday was my last day at work so maybe the stress that I’ve been under for so long will help my CNS. I’m grateful for the severance pay for a year which gives me time.

 

Please pray that I can endure.

I love you all and am sending you peace and healing.

Bless you. 🙏💕🌸💙🤗

 

Jordanjack

I have been thinking of you - and believe me, I feel with you. My burning is also so bad. Inside and outside, in my body abd in my head. Yes, my headache feels like a iron pipe stock in my brain on my left side. It even goes into the upper part of my mouth. My brain is burning, shaking, electrical. Just hurting. My muscles and joints are stiff in arms and legs, and recently also my neck is stiff, burning and painful - and I don't have meningitis,  though it feels that way. In spite of the burning, my legs, feet and hands gets ice cold.

We have to believe that this will go away one day. Sometimes, I listen to this podcast - with a nurse who had all the burning, but it went away, eventually

 

 

I send you hugs and love. We will get through this, day by day. Like eating an elefant can only be done bite by bite...

Jørgen

 

[[...]]

I have heard that low dose amitriptyline can help with nerve pain. Something like 10 or 20mg.

[[...]]

I have heard that low dose amitriptyline can help with nerve pain. Something like 10 or 20mg.

 

Thanks - but I wouldn't dare starting a new drug🙏

[[La...]]

Morning hugs and healing wishes to you all. Just know that I’m thinking of all of you! I know many of my friends here are still suffering from this atrocity of coming off these dangerous pills. I’m so very sorry for us all that we have to endure this day in and day out….but…..if we all continue to look to the goal of healing then we can fixate our focus on that. It will be our reality in the future. No matter how bad it feels now. I thought I’d say that because benzo bully is a deceitful little chit head! He will have people thinking they are not making progress. But oh my…..if you just wait a little longer it will be evident that those dark gray clouds move out of the way. Have you ever seen a forever dark storm? No! The sun will shine again. There’s too many witnesses on here that it is true. I’m one of them even though I’m not totally healed. I was 100% bedridden for a long time. I couldn’t even take a bath in a tub! But now, I go in my bathroom, run a nice bath, undress myself, get in and let the day wash away. I can get out by myself, put on fresh pajamas….all without breaks or falling over. I still get a little boaty from doing it but the point is I CAN anytime I want….even in a wave! I NEVER thought I’d be in such a terrible condition that I was in. I refused to accept it being permanent and rightly so. It’s NOT! In a nutshell, all those terrible symptoms are simply the brain working hard to repair the temporary damage. I thank God that he made our brains to repair like that! HalleluYAH! I want to encourage anyone that’s struggling to hold on to your faith. Believe in this process. You are healing as you read this, when you sleep, when you’re feeling awful….all day repairs. There’s no way you’re not going to feel that. But, giving enough time ( your individual timeframe) you will start to rise from the pile of ashes. Because you are a warrior of fire! Fire can’t burn fire!

Love you all

 

:smitten: :smitten:

[[Li...]]

LadyDen,

 

Thank you so much for the strong words of encouragement. I do believe I will heal. I know we will all heal. The big question is when and how much more do we have to endure.

 

In 11 days I will be 31 months out and I am suffering so badly. Trying as hard as I can to stay positive and pass the time.  I'm happy to hear that you have improved.  I so wish that I could say that I have and that I could feel it. I know I'm healing. I just need some relief. It's hard to get through A-day. Big hugs to you!

 

LiveLife

[[...]]

 

My burning brain and head pain is so bad.

Did any of you experience that it got significantly better over time?

Hugs, Jørgen

[[La...]]

LadyDen,

 

Thank you so much for the strong words of encouragement. I do believe I will heal. I know we will all heal. The big question is when and how much more do we have to endure.

 

In 11 days I will be 31 months out and I am suffering so badly. Trying as hard as I can to stay positive and pass the time.  I'm happy to hear that you have improved.  I so wish that I could say that I have and that I could feel it. I know I'm healing. I just need some relief. It's hard to get through A-day. Big hugs to you!

 

LiveLife

I’m so sorry Live. It’s just a matter of time now. Keep holding on. Congrats on upcoming 31 months. That may be your magic month.

Today for me isn’t so great but that’s how this goes. So I’m resting up today until this fizzles out again.

Sending you big hugs!

In spite of your sorrow you’re doing a great job!

[[La...]]

 

My burning brain and head pain is so bad.

Did any of you experience that it got significantly better over time?

Hugs, Jørgen

All of these symptoms are from the brain trying to return to homeostasis. As it heals, it will get better over time. As Live said, what’s hard is when it will happen. Hang in there.

Hugs

[[Li...]]

LadyDen,

Yes always thank you so much for your words of positivity. They really do mean so much to me. It would be wonderful if month 31 was my turning point or even before that. I'm getting so close I hope. Trying so hard to hang on to be positive. I'm sorry to hear that you're having a struggle today I hope it passes for you soon. But I'm sure it will because you seem to get some very good days. Sending you big hugs and warm love!

 

LiveLife

[[jo...]]

Oh thank jordanjack,

 

That means is much to me. You sound like such a kind soul. I'm sorry about your friends and family. Its so hard being alone especially during the holidays. People just don't get thus and it's like they avoid us. My family doesn't really talk to me. It's kind of astonishing. I've had every each you name it. Your not alone but those things will heal up. We just have to think of them as signs of healing. We can do this.one day we will be able to do all thise things again. It's temporary even though it's long, jeez. Thank you so much for welcoming me here. It really d9es help to have others who understand. I hope you get some sleep tonight. Lots of love and bless you too

 

Hi Dehytq2,

Yes, you will feel very welcome here.  It truly is so very difficult and I am so sorry that you are suffering the same.  I feel very alone as well.  Please know you are not alone and can message me anytime. You are very kind and so supportive, so thank you.  Here's sending you a big hug. oxxo

[[jo...]]

 

Jordanjack

I have been thinking of you - and believe me, I feel with you. My burning is also so bad. Inside and outside, in my body abd in my head. Yes, my headache feels like a iron pipe stock in my brain on my left side. It even goes into the upper part of my mouth. My brain is burning, shaking, electrical. Just hurting. My muscles and joints are stiff in arms and legs, and recently also my neck is stiff, burning and painful - and I don't have meningitis,  though it feels that way. In spite of the burning, my legs, feet and hands gets ice cold.

We have to believe that this will go away one day. Sometimes, I listen to this podcast - with a nurse who had all the burning, but it went away, eventually

 

 

I send you hugs and love. We will get through this, day by day. Like eating an elefant can only be done bite by bite...

Jørgen

 

Jørgen,

I am truly so sorry that you are enduring the same. It is so cruel.  I have had a very rough week, it seems like I'm getting worse which is so very discouraging. The burning in my cranial nerves is unlike no other.  I have it it my arms and lower legs too, but the burning brain is so bad.  I've had it in my mouth as well, and then the twisting muscles in my left leg has come out of nowhere.  I don't know what that is about. I went to a massage therapist to have her work on my neck and I think it revved me up. Ugh.  I'm just so tight and tense due to holding my body so tense from the pain.  Jørgen, the buring and electrical sensations are so difficult to deal with.. I feel like I am going mad, because I can't escape this insurmountable pain.  Surely we must get some relief soon. I pray we do.  I am going to watch the video you shared.. thankyou.

I am here for you and we can keep helping each other.. You are not alone. 

[[jo...]]

Morning hugs and healing wishes to you all. Just know that I’m thinking of all of you! I know many of my friends here are still suffering from this atrocity of coming off these dangerous pills. I’m so very sorry for us all that we have to endure this day in and day out….but…..if we all continue to look to the goal of healing then we can fixate our focus on that. It will be our reality in the future. No matter how bad it feels now. I thought I’d say that because benzo bully is a deceitful little chit head! He will have people thinking they are not making progress. But oh my…..if you just wait a little longer it will be evident that those dark gray clouds move out of the way. Have you ever seen a forever dark storm? No! The sun will shine again. There’s too many witnesses on here that it is true. I’m one of them even though I’m not totally healed. I was 100% bedridden for a long time. I couldn’t even take a bath in a tub! But now, I go in my bathroom, run a nice bath, undress myself, get in and let the day wash away. I can get out by myself, put on fresh pajamas….all without breaks or falling over. I still get a little boaty from doing it but the point is I CAN anytime I want….even in a wave! I NEVER thought I’d be in such a terrible condition that I was in. I refused to accept it being permanent and rightly so. It’s NOT! In a nutshell, all those terrible symptoms are simply the brain working hard to repair the temporary damage. I thank God that he made our brains to repair like that! HalleluYAH! I want to encourage anyone that’s struggling to hold on to your faith. Believe in this process. You are healing as you read this, when you sleep, when you’re feeling awful….all day repairs. There’s no way you’re not going to feel that. But, giving enough time ( your individual timeframe) you will start to rise from the pile of ashes. Because you are a warrior of fire! Fire can’t burn fire!

Love you all

 

:smitten: :smitten:

 

LadyDen,

Thank you so much for your beautiful words of encouragement.  I truly never imagined this horror as well.  The physical burning pain is inhumane and the suffering just seems like it is getting worse.  I am now at the start of month 13 and so discouraged that I have not yet one day without the burning.  I pray, mediate, and try to think positive, but there are times when I don't know how I will get through this. Everyday from the past 13 months have been so painful for me,  but the past month it seems each week is harder.  I pray that I am healing, but it truly doesn't feel like it.  I see others that have overcome the burning, so I pray that the deliverance will come.  You are a light for all of us and I appreciate your kind encouragement so much.  If we could but know when the suffering would cease, it would give such hope.  I am sorry that you have suffered as well, but am so happy that you are seeing healing happening now. I pray that each of us would find total restoration soon.  Oh, how I would love to have freedom soon. The greatest Christmas gift for me would be that we all are healed.  Here's sending you a big hug and thank you.  Bless you! 

[[...]]

Jordanjack

Yes, it is so cruel. Just being invalidated and injured by medicine because we trusted our doctors and didn’t know what we were taking. I am nearly 18 months off now, and didn’t have much improvements. I also stopped an antidepressant 22 months ago, which didn’t make it any better. Did you take any other kind of drugs? The burning is terrible. I have it all over, brain, body, skin. It's one of my main symptoms besides constant headache, muscle and joint pain, which is also killing me. I am bedbound a lot during the day, but try to get up and do stuff. Walk, exercise a little, eat, etc. But it's really hard. I keep reading the success stories to keep up hope. Everybody says that it will get better with time, so we have to believe in that. You are also not alone. We have yo get through each day until eventually we will get some relief.

Hugs, Jørgen

[[He...]]

Hi all,

 

I've not been around much but wanted to drop by and say hello to all of you.

 

Jordan Jack, Live Life, Dehytq2 and Jb42, I'm so very sorry for your intense suffering that persists for what feels like forever.  It's a long, hard rough isn't it?  Please know I'm thinking of you and hoping every day for some relief to come your way.

 

Lady Den and Garden Guru, cheers to you for making progress and accepting the steps forward and backward as they come. 

 

Decatur, I'm thinking of you too.

 

Deanna, thanks for dropping in a while back and cheering us on! It gives me SO much hope to know you are moving forward with some good times.

 

As for me, I have been up and down but am trying not to label each day but just to live in whatever state I am in.  I'm still dealing with a lot of "acid in the veins" feelings and the hot oil on the scalp feeling and I still get heart palpitations and nausea. This week I've had stomach pain thrown in but I'm not sure I haven't had a little bug.  But in general, I know I'm getting better centimeter by centimeter. 

 

We'll get there friends. 

 

Healing thoughts to the group.

 

Helen

 

 

[[La...]]

Happy 30 months to me!

 

Wishing everyone healing, joy and a beautiful new healthy life full of happiness!

Love and hugs

:smitten:

 

Happy holidays to everyone! May you have a beautiful time with your family, friends and extended family. May the new year bring us much healing! That’s my only holiday wish for myself and every one of my friends here!.

I love you all.

 

⛄️❄️⛄️❄️⛄️❄️

[[La...]]

Helen sending you warm hugs and love! Yes we’re having the ups and downs but it’s all healing process stuff. I’m grateful for it actually because we have to go through it to get through it. I’m just ready to be finished with this. Wow what a long journey it is for us all. Glad you’re still going strong.

 

To everyone else….hang in there! Today is the day you won’t have to do over. Keep taking one day at a time. Time is on our side in this. When we’re feeling bad for so long, we get so frustrated but I try hard to not give in to that feeling. It’s just a feeling. The reality of who we will be is our windows. That’s the real us that’s in the process of emerging through. Like a caterpillar changing into a butterfly….we will emerge from this and fly to our new lives! In the end it’s worth it to get to that. So don’t give up!

Love and hugs 🤗

[[De...]]

Congratulations ❤  That's amazing

[[La...]]

Thank you Deh!

Happy holidays to you!

 

⛄️❄️🎁❤️

[[Li...]]

LadyDen,

 

Congratulations on 30 months!  As GG would say it's another 30 months that you'll never have to do again.

 

Wishing and hoping all the best for all of us. Big hugs!

 

LiveLife

[[He...]]

Happy 30 months to me!

 

Wishing everyone healing, joy and a beautiful new healthy life full of happiness!

Love and hugs

:smitten:

 

Happy holidays to everyone! May you have a beautiful time with your family, friends and extended family. May the new year bring us much healing! That’s my only holiday wish for myself and every one of my friends here!.

I love you all.

 

⛄️❄️⛄️❄️⛄️❄️

 

CONGRATS to you Lady Den on 30 months!!  You're a phenom! 

[[De...]]

Happy Holidays Ladyden!!!  wishing you you joy and a life full of health and happiness too!!!

[[La...]]

LadyDen,

 

Congratulations on 30 months!  As GG would say it's another 30 months that you'll never have to do again.

 

Wishing and hoping all the best for all of us. Big hugs!

 

LiveLife

 

Sending warm holiday wishes and healing vibes your way! Thank you, Live. Yes the same to you…you won’t have to do 31 months again. 

 

❤️🌹🎄⛄️❄️

[[La...]]

Happy 30 months to me!

 

Wishing everyone healing, joy and a beautiful new healthy life full of happiness!

Love and hugs

:smitten:

 

Happy holidays to everyone! May you have a beautiful time with your family, friends and extended family. May the new year bring us much healing! That’s my only holiday wish for myself and every one of my friends here!.

I love you all.

 

⛄️❄️⛄️❄️⛄️❄️

 

CONGRATS to you Lady Den on 30 months!!  You're a phenom! 

:yippee:

 

Thank you, Helen! Happy healing and happy holidays!

[[Ba...]]

Hi I hope things have gotten better for everyone. I’m right at 12 months and would like to connect with anyone to share their current healing status. The revved up board sensation has come back with vengeance. My son was in life support last month and symptoms of fatigue kicked in and anxiety but not this. I also have the slight shakil of the brain in skull feeling lasting for a second. Any feedback is greatly appreciated. I’m pretty revved up over here.

[[...]]

I wish you all a Merry Christmas, with mild symptoms🙏

Hugs, Jørgen