12-24 months and up support group

[[...]]

Yes - thank you Leann🙏

[[Ga...]]

Hi JB42.  I do not have the burning symptom anywhere except in my head.  It was my first symptom 31 months ago, and it has disappeared at times for many days, and has just now come back to haunt me.  The pain is so bad today that I am actually shaking!  It is a miserable symptom for sure.  Last Friday and Saturday I had no head pain, so something triggered it on Sunday.  Three days now and no relief given from Tylenol or Benadryl!  The pain is also in my jaws and in my teeth!

 

Let us soon be free of this agony🙏🙏🙏🙏🙏

 

GG

[[De...]]

Thank you Helen. Nice to hear you are doing well🙏

 

I have a question for you all. How do I know that I don't have fibromyalgia, as my doctor thinks I have?

 

Hello JB42 - I see you mentioned fibromyalgia.  This was one of my worst symptoms and it all began when I began to wean myself off of the gabapentin I was prescribed for a bad case of sciatica.  It all turns out that I really hit tolerance on Ambien which was causing the sciatica to be much worse, so they prescribed me gabapentin.  Four months on that I knew I had to get off - I felt like a zombie.  That's when these pain flares would come on for no rhyme or reason.  My nervous system must have been so damaged from being on both drugs. I withdrew from gabapentin first, then tackled Ambien.  It has been almost 27 months now off everything and I can say the FB symptoms started to ease at about 18 months or so.  They are slowly fading away and now when I have pain it is only a whisper of a sensation, but it does take time to heal.

 

So yes I think we have all the hallmark symptoms of fibro, but the cause is a drug injury.  Many ppl with FB are diagnosed after a psychological trauma which I think is much harder to heal from, but I believe it is possible with the right treatment plan.

 

Have faith - you will get better.

 

 

[[De...]]

Hi JB42.  I do not have the burning symptom anywhere except in my head.  It was my first symptom 31 months ago, and it has disappeared at times for many days, and has just now come back to haunt me.  The pain is so bad today that I am actually shaking!  It is a miserable symptom for sure.  Last Friday and Saturday I had no head pain, so something triggered it on Sunday.  Three days now and no relief given from Tylenol or Benadryl!  The pain is also in my jaws and in my teeth!

 

Let us soon be free of this agony🙏🙏🙏🙏🙏

 

GG

 

So sorry you are feeling the headaches again GG!  I myself am also in a bit of a wave with my old friend "lower left back pain"...I think it is simply I am trying to do too much.  We are almost healed you and I, but we have to still take it easy at times!

[[...]]

Hello

Deanna - Yes - I think fibromyalgia symptoms are very similar to wd symptoms. I am just trying to keep up hope, that it will get better at some point. I hope like you it will get better at 18 months off. I have been offered gabapentin but said no thanks...

 

GG - I got the burning brain already at the first day I got on an ssri, 4 years ago, but it went better. Now the burning is all over and severe. I am also shaking internally.

[[Be...]]

I'm so cognitively impaired that I can't follow what everyone is saying, but I hope you all feel better soon.  Leann, germs are good for our bodies and being too clean is actually bad for us.  Maybe you can tell yourself that so won't feel the need to wash your hands so often? 

[[Ga...]]

Good Wednesday Morning, Buddies, I trust that today will be a day of healing, a day of reprieve from bwd symptoms, and a day of joy in just being😍🙏

 

My roller coaster ride continues, with yesterday being one of awful head pain, and now waking up today to hands shaking and a headache!  I suspect that the antibiotics have returned me to some state of acute, and I fear I may have a long road ahead of me before I will return to the glorious windows I have enjoyed immensely.

 

I am having blood tests done today as part of my yearly physical, and am going to request a test for MACS (Mast Activation Cell Syndrome) and Lyme.  One of my biggest issues over the past 31 months post taper from Valium is that I get the benzo flu quite often, have continuing headaches, and repeat infections.  It is my understanding that some buddies who are protracted and were on Valium can present with MACS, which has something to do with histamine.  I have had allergies show up that I never had before, especially strange intolerances to ketchup, pork, watermelon, Canteloupe, etc.  I was tested by an allergist who said I was not allergic to the foods, but intolerant of them.  Plus, I had not had any issues with pollens in years, but I started getting bad sinus headaches post Valium, and even went and had sinus surgery!

 

I think my doctor will be happy to either rule in or rule out Lyme and MACS, so we can feel comfortable in knowing that I am still just in the horrible grip of BWD.

 

I am scheduled to get my flu shot this Thursday and pray I won’t react to that.  I also have the cystoscopy and colonoscopy scheduled for three weeks from now.  I will discuss with my doctor today as to whether I can postpone them, and maybe even cancel the cystoscopy?!

 

Well, the sun is shining beautifully and the tress are beginning to show off their fall colors, so I will enjoy the early signs of fall, my favorite season of all!

 

Hugs to all,

 

GG

[[La...]]

Thank you Helen. Nice to hear you are doing well🙏

 

I have a question for you all. How do I know that I don't have fibromyalgia, as my doctor thinks I have?

Jb I don’t know of any specific test for fibromyalgia. My ex mother in law had it. It’s diagnosed with certain symptoms that manifest themselves as flare ups. It’s an inflammatory manifestation of the body that causes pain without the body being injured. There are other symptoms that show up with the pain. It vanishes or dies down then flares up again. That’s all I know.

I do want to add that these symptoms and waves we have are known to mimic other diseases. There are plenty of other buddies that’s been mistakenly told by doctors that they have this or that. Time proved it was just benzo recovery symptoms. If you read through the success stories you’ll see what I mean. Fibromyalgia is one of the common ones doctors mistakenly diagnosed. Especially doctors who are not benzo wise. I’m not saying that you don’t have fibromyalgia but I am saying it’s a possibility that it’s just benzo recovery symptoms. Time will tell.

[[La...]]

Good Wednesday Morning, Buddies, I trust that today will be a day of healing, a day of reprieve from bwd symptoms, and a day of joy in just being😍🙏

 

My roller coaster ride continues, with yesterday being one of awful head pain, and now waking up today to hands shaking and a headache!  I suspect that the antibiotics have returned me to some state of acute, and I fear I may have a long road ahead of me before I will return to the glorious windows I have enjoyed immensely.

 

I am having blood tests done today as part of my yearly physical, and am going to request a test for MACS (Mast Activation Cell Syndrome) and Lyme.  One of my biggest issues over the past 31 months post taper from Valium is that I get the benzo flu quite often, have continuing headaches, and repeat infections.  It is my understanding that some buddies who are protracted and were on Valium can present with MACS, which has something to do with histamine.  I have had allergies show up that I never had before, especially strange intolerances to ketchup, pork, watermelon, Canteloupe, etc.  I was tested by an allergist who said I was not allergic to the foods, but intolerant of them.  Plus, I had not had any issues with pollens in years, but I started getting bad sinus headaches post Valium, and even went and had sinus surgery!

 

I think my doctor will be happy to either rule in or rule out Lyme and MACS, so we can feel comfortable in knowing that I am still just in the horrible grip of BWD.

 

I am scheduled to get my flu shot this Thursday and pray I won’t react to that.  I also have the cystoscopy and colonoscopy scheduled for three weeks from now.  I will discuss with my doctor today as to whether I can postpone them, and maybe even cancel the cystoscopy?!

 

Well, the sun is shining beautifully and the tress are beginning to show off their fall colors, so I will enjoy the early signs of fall, my favorite season of all!

 

Hugs to all,

 

GG

It will definitely give you peace of mind to rule them out. But I think you know what the results will be.

Why are you wanting to postpone your cystocope and colonoscopy?

I’m sure when your body settles down a bit more the window fairy will come visit your doorstep for a long hangout.  I agree that she’s delayed a bit due to what all you’ve been through.

I hope all goes well with your flu shot too. Be brave sweet GG!

Yes I’m loving the pretty fall colors too. Watching the leaves dance to the ground is very soothing. The temperature is near perfect as well. Very nice to have a little chill in the mornings now. A couple of those mornings I had to turn on my fireplace just long enough to take the chill out of the room. Today is raining very cloudy. Hope you enjoy your day with headache staying away.

Love ❤️

[[La...]]

Lisa I’m thinking of you this morning. I want you to know that I’m sending you lots of love. Stay strong and know in your heart that it will be alright. Extra self care and calming meditation 🙏 can be helpful. Wishing you a lovely day. I hope things go back to being good days for you very soon.

Lots of love 💗

[[La...]]

Helen I’m so glad you’re doing so well. Please tell me some details about your beach trip with your friends. When you travel does it interrupt your sleep because you’re in a different bed?

Hope the window fairy hangs out with you for good   

 

Big hugs and love sweetie 🌹❤️

[[Ga...]]

LadyDen of the magic soothing words.  How blessed we fellow buddies are to have you leading us onward.  I take such solace in your wise words of wisdom, and will now pull on my big girl panties and seize the day!

 

I guess I am fearful of the cystoscopy and colonoscopy doing further damage to my already shredded CNS?  Plus, they are scheduled within three days of each other!  I will see what my doctor says today…..she is a PA and very compassionate, probably more so as she is dealing with female issues herself!

 

Love you,

 

GG

 

Dancing leaves….they do paint a pretty picture🍂🍂🍁🍂🍁

[[He...]]

LD,

 

The trip was sweet. My friends were funny and absolutely happy to just veg out for the most part. They took one really long walk without me which was good because I needed to just sit and meditate a bit.  But we talked and laughed a lot and watched tv. We went to one a coffee shop on Saturday and got healthy smoothies and walked with them to a cute surf shop I always like to check out. I bought a cute straw beach hat.  I was able to do some walking.  It was just a nice, easy relaxing time and I continued to feel fine Monday and Tuesday too.  Oh, one thing on the way home I 40 had a HUGE traffic jam and I needed to pee. My friend was driving and I think she was impressed that I stayed so calm.  What people don't understand is that everything we've been through in this multi year journey, something like a traffic jam hardly registered on the "freak out scale". She is a great driver and I just used my coping skills to breathe and relax.  It showed me how much I've grown in this process.  I'm not feeling quite as fabulous today but it's still ok.  I'm going to get my mammogram at lunch time and planning to walk to the appt which is close to my house.  Now, what I want is for YOU to get to the beach. 

 

Oh as far as sleep, my first night away from home is never a good one. But my friends were the same way. Not much sleep the first night but fine the second.  Maybe that's normal.  It sure is for me!

 

Love you LD. 

 

Helen

 

[[La...]]

LadyDen of the magic soothing words.  How blessed we fellow buddies are to have you leading us onward.  I take such solace in your wise words of wisdom, and will now pull on my big girl panties and seize the day!

 

I guess I am fearful of the cystoscopy and colonoscopy doing further damage to my already shredded CNS?  Plus, they are scheduled within three days of each other!  I will see what my doctor says today…..she is a PA and very compassionate, probably more so as she is dealing with female issues herself!

 

Love you,

 

GG

 

Dancing leaves….they do paint a pretty picture🍂🍂🍁🍂🍁

Tests being 3 days apart I can see why you’re a bit nervous. Will you be given medication to do the cystoscope? I know the colonoscopy requires sedation. I think that you being this far out that you’ll do well. I like your positivity. I’ll be cheering you on. It’s good that the PA is compassionate. That gives you some comfort knowing your in caring hands.

🌹🌹🌹 love you

[[La...]]

LD,

 

The trip was sweet. My friends were funny and absolutely happy to just veg out for the most part. They took one really long walk without me which was good because I needed to just sit and meditate a bit.  But we talked and laughed a lot and watched tv. We went to one a coffee shop on Saturday and got healthy smoothies and walked with them to a cute surf shop I always like to check out. I bought a cute straw beach hat.  I was able to do some walking.  It was just a nice, easy relaxing time and I continued to feel fine Monday and Tuesday too.  Oh, one thing on the way home I 40 had a HUGE traffic jam and I needed to pee. My friend was driving and I think she was impressed that I stayed so calm.  What people don't understand is that everything we've been through in this multi year journey, something like a traffic jam hardly registered on the "freak out scale". She is a great driver and I just used my coping skills to breathe and relax.  It showed me how much I've grown in this process.  I'm not feeling quite as fabulous today but it's still ok.  I'm going to get my mammogram at lunch time and planning to walk to the appt which is close to my house.  Now, what I want is for YOU to get to the beach. 

 

Oh as far as sleep, my first night away from home is never a good one. But my friends were the same way. Not much sleep the first night but fine the second.  Maybe that's normal.  It sure is for me!

 

Love you LD. 

 

Helen

Wow that sounded so fun! I’m so happy that you did so well. And yes I want to get to the beach soon too! That’s so very sweet of you to say that. I imagined you meditating on that beach….put a smile on my face.

I was thinking of whenever I went on vacations or staying the night somewhere how did I sleep…before all this. I was curious if during this how it affects people sleeping away from home. Sounds like it was a normal “ this is not my bed” kind of thing. Especially that the others not going through this had the same result.

Wow you did great on the traffic jam. I’m sooo proud of you! Definitely proof of healing happening.

Love you too 💗❤️

[[Ga...]]

Helen, I am proud of you for not wetting your pants!!!!

 

Hugs,

 

GG

[[Be...]]

GG, let us know what the docs find out with all the tests you're going to have.  I'm especially curious about the Lyme test.  I was diagnosed with Lupus when I was in tolerance w/d, and I'm convinced it's drug-induced Lupus.  Did your doc run an ANA blood test to screen for autoimmune diseases?  Mine did and it was positive.  Then I was diagnosed with Lupus.  It's good to go to the docs to have them rule conditions in or out.

[[he...]]

Hi Ilona welcome to this thread! Glad to have you join us! Congrats on 1 year! 

 

Yes insomnia seems to be a popular nuisance in this community. I was just messaging another buddy on the zdrug thread who’s dealing with the same thing as you. From what I’ve read on here, it resolves with time just as all the symptoms do.

What have you tried so far to get more sleep? What helped? Are you taking anything?

 

I hope very soon you’ll start getting more sleep. As the brain heals this usually occurs spontaneously off and on. Then it becomes more often sleeping longer. Then a couple of nights in a row, etc. It’s very common. If you’d like to check out what helped others maybe you can read through the zdrug thread or sleep threads.

Best wishes and hope you began soon to get more sleep.

 

Hi LadyDen,

 

I take nothing! Just eat healthy, light exercise, fixed bedtimes. The first 3,5 months in acute was many 0-3 hr nights... Then had a window for sleep, lasted 2,5 months where it was still broken but much better (5 to 7 hrs often) and no hypnic stuff. Then came off birthcontrol pills and thats more than 6 months ago... sleep became bad again, not as bad as in acute, its just all over the place. Usually 2 to 3 ok nights (6ish broken hours) the rest anywhere from bad to real bad. SOmetimes suddenly 7 hour nights too (broken). Hypnic stuff came back aswell. In September I was finally getting a bit of a sleep window again, many nights in a row 6ish, less and more brief wakeups, less real bad nights, still hypnic stuff though. Since 2 weeks its been super bad again. Always had great sleep pre benzo

 

Feels like if Id be sleeping ok I would be pretty much back to normal (with some trauma from this all to process).

[[Li...]]

Hello to all my beautiful buddies,

 

Just popping in to wish everyone well and hope you have a good window day and more to follow.

 

GG,

  Hoping all your tests go very well,  with a positive outcome.  Wishing you well on your flu shot today.  I also believe that your symptoms are going to settle down once you get a little further out from all your treatments. Keep us posted.

 

Sending warm love and healing hugs to all,

 

LiveLife

[[Ga...]]

I am thinking of you, our special LiveLife, and as always I am praying for you and your husband!

 

Your window days are coming🙏😍♥️😍♥️

 

Hugs,

 

GG

[[Li...]]

GG,

Thank you so very much. I sure could use a beautiful bright sparkling window.  Of course, we all could.  This whole situation with my husband is so upsetting. Thank you so much for your kind words and prayers.

 

Hugs!

 

LiveLife

[[...]]

Gosh Live I am just reading about you and your husband.  I am so sorry.  Thinking of you.

 

GG.  Thank you so much for stopping by my blog today.  Good luck with the doctor!

 

LadyD.  How are you!

 

Helen.  Your trip sounded lovely.

 

Lisa.  Thinking of you today.

 

Becks.  Sorry I have not stopped by your blog to say hello.  I pretty much dont say much on here anymore because the symptoms are so bad.  I can barely read all the posts let alone post one myself. 

 

Hi Deanna!

 

I am so tired today.  The symptoms of severe fear, panic, anxiety are so bad I can barely catch my breath.  My skin burns like I have a severe sunburn.  I am just so, so tired.  Will I ever heal with all these setbacks - who knows.  I am losing hope.  It was fine when I saw healing each month but now with all the setbacks I am going backwards.  I am almost never negative but this week has got me. 

 

Ugh.  Sending love and hugs to all of you.

 

 

[[Be...]]

JBen, sorry you're not feeling very well.

[[jo...]]

Hi all,

I want to thank LadyDen for inviting me to join this group. GG and LadyDen told me I would find encouragement here, and I’m getting close to the 12 month mark.

 

I reconize some of you here, as you’ve been so kind to offer support to me. (LadyDen, Helen, GG, LiveLife, Becks, JBen, Sandy, Decatur, Karla, Deanna, Pianogirl and others: thank you!)

 

I am having such a difficult time. Some of you already know my story;  My story is that  I had been on an AD for 10 years (Viibryd at 20mg, then 10mg). I lost my family members tragically years ago and had to get on an AD to help me. I tapered off too quickly during Covid. Eight months later I was having a lot of anxiety and stress and my pdoc tried to start me back up on Lexapro, and gave me Xanax .25mg per day to use as a start up with the Lexapro.  I didn't even know what Xanax was! Anyway, I only lasted a week on the Lexapro, so she told me to stop the Lexapro and keep taking the Xanax.  After 2.5 months of Xanax I started getting burning arms.  Went to multiple docs, blood tests, they all said it was stress. 

 

So then I researched it, found BB’s, and realized I was having interdose WDs.  The thing is, that crazy xanax made me panic even more and it was almost paradoxical from the start.  So anyway, I then knew I had to taper off.  I tried to taper for 4 months, and my whole body was on fire!  I could barely come down.  I then paid a lot of money and went to detox because they told me it would help me to get it out of my system and that I was on a low dose and shouldn't have any problems.  Not true!

 

I’ve been struggling so much.  I wish I wouldn’t have gotten off the AD originally because it’s been all downhill ever since. I think it was helping me.  My anxiety is beyond anything I’ve felt before. Like a chemical anxiety that lights me up like a Christmas tree.

 

So anyway, it's been 10.5 months now since detox and my poor body has burned so bad the whole time. I was finally put on Gabapentin to help.  It kind of helps and then it doesn't.  The burning breaks through most days and nights, but it does take the edge off some. I know I’ll have to taper, but I had to be able to function to continue working.

 

I've managed to work (remote) through all this, while having ice packs close by.  I work remote, thank goodness. I don’t know how I’ve been able to do so; only by grace and because I’m alone and I had to.

 

I'm having such trembling and my legs shake like a seizure when my anxiety ramps up, which is daily.  I'm overwhelmed by the pain and the anxiety just rages on due to the cortisol and adreneline coursing through my body like a raging fire.  And the fear!  It’s awful.

 

I am starting to try to swim some laps at the indoor pool very slowly...just to feel the cold water on my body. And I’ve been going back to church. I couldn’t go for a long time due to my pain and I was scared to go anywhere! And now I just try to go when I can, even though my body is burning.

 

I’ve read the incredible love and support on this groups posts and it has been so helpful just to read the encouraging words of hope, comfort and compassion. LadyDen, thank you so much for creating this group.

 

Again, thank you to those of you have been so sweet to encourage me on my posts and PMs.

I’m so grateful for your encouragement, especially when feeling so alone in this journey.

 

I’m so sorry for all those who are suffering so greatly. I hope I can offer encouragement to you as well.

 

Bless you! 🙏☺️

[[Li...]]

JBen,

Thank you. It really has been very difficult. I'm sorry to hear that you're struggling so badly. I'm right there with you. Hopefully we're gonna turn the corner soon. I know I keep saying that.  But it's definitely possible because we've been struggling for so long.

 

Jordan,

Welcome to the group. I'm so sorry to hear of your suffering but it does sound like you've been making progress and you're able to work from home and you were able to get out and go to church.  Although, I know it isn't easy from what you were saying you have to have those cold packs close by. Swimming is a great idea.That sounds like some big progress to me. You're definitely moving forward.

 

Hugs!

 

LiveLife