SIX MONTHS post detox today. Still have burning body. Lord help us.

It’s been six months since I went to detox to get the Xanax poison out of my body after an unsuccessful 4 month taper.  I wish so much that I would have CT from the start. My taper only prolonged the pain as I had the burning all through my taper. I had stopped an AD VIIBRYD 7 months earlier after being on a low dose for 10 years, so I suspect the Xanax symptoms were magnified by the AD cessation. I had very poor advice, obviously.

My pdoc has not been very helpful due to lack of knowledge on the benzos. She just hands out the candy. But, I must say she has been supportive. I’m on gabapentin now to help with the burning. It’s a calcium channel blocker and does not hit the same receptors as benzos but blocks the glutamate storm giving space for the brain to heal.  Some folks say it hinders healing but it actually calms the storm somehow. It has helped some, but the burning still breaks through. I’ll taper once I’m healed. I’m thankful that’s it’s a available.

My burning grew unimaginably worse since dropping and has been the most painful thing my body has had to endure.  I wish my doc would have warned me. I blame myself for not researching. It’s crazy that .25mg a day of Xanax for 3 months (plus 4 month taper) could do this much injury to the nervous system. Many of the earlier symptoms are gone, thank goodness! The pacing and fear were awful.

I STILL have the burning each day mostly 24/7 with only slight relief. If this burning would just stop I would be so much better mentally as well. It’s  been going on for almost 10 months counting my taper. Sadly, very few windows. My nerves are hypersensitive and I’m jumpy at touch and have shaking at times in my arms. The slightest thing makes me jump. I also have started getting myclomic jerks. So weird that these things show up now. What an inhumane thing these benzos cause. How is this stuff even legal?  My doc hoodwinked me, I had no clue!  If only I would have researched it.

I try to walk some each day and hope to get back to the pool soon so I can do my lap swimming. I was on a swim team from childhood all the way through college, so it’s the exercise that I enjoy most. I miss it, but my body pain has kept me from doing so. In recent weeks I’ve been going back to church. I’ve missed it and being in the choir. I hope to get back in the choir soon. Music is my first love. I was a music major in college, but went back to school years later to learn computer programming. I love music most of all. Sadly, I had to quit the symphony after 18 years, due to this horrible Xanax journey. Gosh, it robs so much from us! 

It’s hard to fathom that such intense burning is even a thing. It feels like hot lava on my head and my legs and arms feel like someone rubbing a grill cleaning brush on my skin. Or like sitting out  in the snow with no clothes on. It’s that kind of burning. Pure torment.

Thankfully, my job is remote and I can keep my ice packs close. The best part of my day is getting in the tub with hot water and then cold.

I’ve recently started having the jelly legs and trembling. So odd about the jelly legs. It’s comical to watch me vacuum. I have to be careful. The cortisol and adrenaline ramp up and down during the day.

Mornings are the worst. The chemical anxiety is the unwanted gift that keeps on giving.  Why is it taking so long? I had a setback with antibiotics after nasal cauterization, and even thrush from it which I had  to take medicine for. I’ve been to the ER 3 times. They know very little about Benzo withdrawal pain.  I’m sleeping well and have started eating more variety, but mostly protein and veggies and some fruits. I’ve lost 25 lbs and my skin looks like crepe paper in places. I used to be fairly fit with muscle and those have all but disappeared. It’s the cortisol!  I shower and do my hair and makeup each day just like I’ve always done and I dress as if I’m going to the office. (We all work remote now since Covid happened and our building closed) I’m so grateful to be able to work from home!

I’ve read most people start turning a corner month 6. Please let that be me!

I’ve learned so much from other warriors who have helped me. I treasure each of them.

The only way I’ve made it this far is because of God’s strength. I’ve prayed for mercy and healing everyday and will continue to do so. Oh how I want to be healed.

I’m so sorry for each of you that are enduring such physical pain and mental lies from the Benzo that whispers into our ears. You are all so strong and we have to believe that we will win this battle. It truly is a journey and one that I pray will end soon for each of us as our bodies heal.

Six months!!!! I’m so disappointed that I’m not where I hoped I would be at this time. I press on and I hold tight to my faith. It’s all I have.

Bless you all with renewed strength and health.

I'm sorry you've lost so much due to benzodiazepines, but its good you're trying to keep things as normal as possible, showering each day and doing your makeup, we need to preserve as best we can the life we'll step back into when recovered.

Thank you for describing so well what the burning feels like, for the first time I was able to understand what other members have talked about, I didn't have this symptom.  I want to caution you about that 6 month milestone, I looked forward to it too and it came and went without recovery but what my poor sick brain couldn't realize was that I was improving, I just couldn't recognize it.  I hope you'll be able to see improvement even if its not full recovery at that time.

Hey there! I feel bad for your burning. I definitely had the burning, but as that went away, mine was replaced with another sinister sensation......it was the same type of thing, but it was like daggers being squeezed into my body, mainly my legs, but sometimes my arms and torso too. But the vice grip of daggers on my legs was 24/7. I would also be carried to the bathtub ALL the time as it was 1 of the few things that felt like it helped a tiny bit... .until I got out, and then right back to the pain. Ugh. I definitely remember the burning though. It was like lava or burning acid on my skin. I actually have video of me screaming crying about it. Ugh.

Don't feel bad if gabapentin is helping you! Yes, you will have to figure out tapering it later, but hey, honestly, me taking amitriptyline was the thing that stopped my squeezing dagger pain, and muscle weakness. It got me out of the wheelchair and doing PT and walking and gave me my life back.

I don't feel bad about taking it AT ALL!!!!  I didn't start it until end of month 6. So at 6 months I was at my worst. Within 2 months I was starting to walk again, but it took time for my body to heal and for me to rehab it. So I didn't actually feel truly alive again until around 18 months.

So don't sell yourself short! Sounds like healing is happening and with more time, you will feel more alive again!!!

Keep going!

I'm sorry you've lost so much due to benzodiazepines, but its good you're trying to keep things as normal as possible, showering each day and doing your makeup, we need to preserve as best we can the life we'll step back into when recovered.

 

Thank you for describing so well what the burning feels like, for the first time I was able to understand what other members have talked about, I didn't have this symptom.  I want to caution you about that 6 month milestone, I looked forward to it too and it came and went without recovery but what my poor sick brain couldn't realize was that I was improving, I just couldn't recognize it.  I hope you'll be able to see improvement even if its not full recovery at that time.

Hi Pamster, thank you so much for your encouragement and kind words.

Yes, this whole journey robs so much from us. For me, the physical (burning legs, arms and head) have been so absolutely brutal and terrifying.  It’s been almost 10 months of the burning since my taper and ultimately detox. So much unforgiving pain even at a small dose.

This forum has been my lifeline of encouragement because if people haven’t walked this walk, they simply cannot understand.

You are so right about the disappointment on timeline. 6.5 months off and the burning hasn’t subsided.

It’s more pain than a body should have to bear. I tell my CNS thsr that I’m so sorry, and thank you for trying to heal.  It truly is hard to see recovery when the milestones come and go. I pray for mercy daily. The burning, shakiness, fear and anxiety are in the forefront of my healing; I will shout from the mountaintops once I heal. 

Unfortunately I had to have nose cauterization twice, in the past month, with visits to the ER because of severe nosebleeds unlike I’ve ever had. Truly frightening. I have a large vessel in the nose and a deviated septum, but chances are, the stress of recovery probably has an effect as well.

So I’ve been in a horrible wave since this original post.  Sadly, I was doing a little better and now my ship is downwind.  These are the times when the mental lies of defeat and fear whisper the ear.

Thank you for being such a great support to me!

Bless you!

I don’t know if it’s withdrawal related as well.

Hey there! I feel bad for your burning. I definitely had the burning, but as that went away, mine was replaced with another sinister sensation......it was the same type of thing, but it was like daggers being squeezed into my body, mainly my legs, but sometimes my arms and torso too. But the vice grip of daggers on my legs was 24/7. I would also be carried to the bathtub ALL the time as it was 1 of the few things that felt like it helped a tiny bit... .until I got out, and then right back to the pain. Ugh. I definitely remember the burning though. It was like lava or burning acid on my skin. I actually have video of me screaming crying about it. Ugh.

 

Don't feel bad if gabapentin is helping you! Yes, you will have to figure out tapering it later, but hey, honestly, me taking amitriptyline was the thing that stopped my squeezing dagger pain, and muscle weakness. It got me out of the wheelchair and doing PT and walking and gave me my life back.

I don't feel bad about taking it AT ALL!!!!  I didn't start it until end of month 6. So at 6 months I was at my worst. Within 2 months I was starting to walk again, but it took time for my body to heal and for me to rehab it. So I didn't actually feel truly alive again until around 18 months.

So don't sell yourself short! Sounds like healing is happening and with more time, you will feel more alive again!!!

Keep going!

Hi SouthernBelle,

Thank you so much as always for your support and words of hope and encouragement.

I know you had the horrible burning too. I think you shared with me that you had to go out to your car so you could sit and scream from the pain. I’m so sorry you endured that.

People have no idea of the suffering we bear. A few of my friends think this is all just anxiety and stress, which yes, I definitely do have these because of the physical pain and recovery, but they are hardly the reason for the suffering. I’m told to go get therapy and go through a holistic doctor.

Im so thankful for this forum because people here are traveling or have traveled this horrific journey of pain and deception of the Benzo lies.

I too savor the hot warm baths. It’s the best part of my day, almost like going back into the safety of the womb, and warm water. Sadly, i haven’t been able to do that lately.  I had nose cauterization twice this month after terrible nosebleeds, ( I mean realky??? now i have nosebleeds?? Just so cruel)

so I have to layoff the hot baths and be very careful.

My ENT ordered labs so I’ll be interested to see those next week.

I’ve been to the ER 4 times during this. 2 times for the burning skin feeling all over, and then 2 times for nosebleeds that woukd not stop. Our systems are so depleted from the stress of it all and perhaps the nosebleeds are part of it. My ENT actually said I have a larger vessel in my nose that is close to the surface and thus the irritation and inflammation.

Perhaps I need the challenge myself and just take a cold one.

Also, did you have the stinging skin too? It seems that the burning turns into stinging on some days. And then the cortisol and adrenaline, along with stress making things so very hard. I mean it’s like the feeling of fire ants.

I’m in a terrible wave right now since I originally posted.  Truly discouraged by the setback.  My spirit has felt strong broken because I’ve had this going on for so long to long. It’s almost inconceivable the amount of pain our bodies have had the bear because of this journey. I’m so grateful for this forum and the support we have here.

Thank you for reminding me know that the burning will stop one day.

Please keep sharing your story with me of how you got through the awful burning skin sensation.

It helps to hear about recovery.

Thank you again SouthernBelle.

Bless you!