Post Benzo Protracted Withdrawal Support Group

[[we...]]

I'm wondering whether the pain that I now sense is in part developed into "Central Pain" ?  Any thoughts? Has anyone developed central pain from wd?

[[Wh...]]

What is that Wellness?  Can you describe it?  Mine is in the center alright.  LOL

[[we...]]

Hey whoop, are you cured yet ?  did you heal overnight?

 

Central pain is  when your brain makes up more pain that it needs.  It hurts, therefore, lets add more pain just for the heck of it. 

 

 

wiki wiki

 

Central pain syndrome is a neurological condition caused by damage or malfunction in the Central Nervous System (CNS) which causes a sensitization of the pain system. The extent of pain and the areas affected are related to the cause of the injury, which can include trauma, spinal cord injury, tumors, stroke, Multiple Sclerosis, Parkinson's disease, or epilepsy. Pain can either be relegated to a specific part of the body or affect the body as a whole.

 

Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Burning pain is the most common sensation, but patients also report pins and needles, pressing, lacerating, aching, and extreme bursts of sharp pain. Individuals may have reduced sensitivity to touch in the areas affected by the pain. The burning and loss of touch are usually most severe on the distant parts of the body, such as the feet or hands.

[[Ho...]]

Yep Welly - I have that on the bottoms of my feet and sometimes on various parts of the body - just a quick flash of a burning sharp pain - so it isn't always constant.  the feet stuff is pretty much steady....

    What about muscle pain - I'm having alot of muscle pain in my upper back, shoulder, arm and jaws.....the back and shoulder pain seems like some old pain that I used to have that has returned...the jaw pain - totally new and very tight, tight, tight....ugh!

Let's keep going Welly - and Whoopsie too - we're going to beat this damn crap...

Hoping

[[Wh...]]

Oh Welly ... wouldn't it be great if I was cured?  I do think it will come around again as it did before.  As far as the central pain ... idk but they are sure describing the sensations well in that article.  My pain is pretty much constant but it does get worse when I'm stressed over something ... it really burns hard in those times.  I do think weather changes amp it up but touch as in massages is definitely making it feel better now although it didn't used to.  Thankfully and knock on wood I hardly ever get any pain in my extremeties ... my foot was cramping the other night and that was real uncomfortable and kept me awake.  I would think it would be awful to have it in the feet as many do.  Maybe I just got used to it being in my upperbody.  I count myself very lucky that it isn't everywhere.

 

Hoping2Bfree ... I relate to the pain you describe in the upper body.  The massage dude said "Wow, is your neck ever tight."  I said "No shit Sherlock."  He really is helping relieve some of it.  Do you go for massages or anything?

 

And definitely yes, we are going to beat this dammit crap!!! 

 

Guess what?  I volunteered at a bingo tonight.  It was for 5 hours and I did very well.  It felt good to chat with the other volunteers ... I had a really nice time.  Next thing you know, I'll be taking on the world. 

[[Ho...]]

Good for you Whoopsie - volunteering at Bingo....No I don't go for massage - I am afraid it will rev me up...I am so afraid of getting "revved" up that I am sure I am missing out on lots of things that might help me. 

    Actually I feel that the new pain I am having may be a sign of healing....it's definitely unpleasant but I am hoping that means that new nerve pathways are coming alive....

Keep on keepin' on....that's all we can do...

Hoping

[[we...]]

Whoopsie, you are getting better, you're getting better 

[[Wh...]]

Whoopsie, you are getting better, you're getting better 

 

 

 

[[Ve...]]

Hello!

I have to join this group too. :'(

I quit klonopin in august 2010..it was really bad.

In march 2011 I started to see some improvements but I was never feeling 100% good.

My sleep was improving, my benzo rage was improving, I would go out and walk 4 or 5 days a week.

Then from december 2011 thing started to become worse, the more time is passing the more is my condition worsening.

In 2011 I used to go to bed around 1-2 am, now I go to sleep 6 am, sometimes evan 8-9-10 am.

Benzo rage came back, every little stress will make me feel bad that's why I cant make any plans, I dont go out, dont meet with other people.

I started to have some new symptoms like vertigo, occasional tinnitus, occasional GI tract problems.

I started to feel fatigued and exhausted.

Some day I manage the symptoms pretty good thinking that it is the wd and it shall pass, other days I'm in despair thinking it wont pass and Ill be like this forever.

I started also to stay awake for 30 hours or more, and this is quite often, and never happened to me on a regular basis.

If I dont sleep I cant function at all.

I see problems that I didn't have in my first year and that makes me think that I'm doomed for life.

I try to have a very healthy diet, I juice, drink tee but this is only when I feel good, when I feel bad I dont care or dont have the energy to cook and juice.

Also I dont go out to walk as often as I did in the first year.

Is this normal, instead of becoming better to become worse?

I am desperate. :'( :'(

[[Wh...]]

Hi Verona ... sorry that you have to be a part of this group.    I honestly don't know what's normal anymore so I can't answer your question about that.  This whole experience is not normal and it seems anything can happen at any stage.  Just hang-on with the rest of us because what else can we do but wait it out.

 

[[...]]

Im 100 percent in.  First can someone help me with what the difference between post and protracted withdrawal syndrome is?   

 

 

I was on 1mg for 16years tapered off for 6 months  and am now 27 months off.  I have been to every doctor had fights with many as they said it was in my head and am now on my way to the Mayo clinic.  I know I'm not crazy and really do feel these things but not sure if its withdrawal related.

 

Symtoms

Over sensitive - electric shocks

I high five someone and my hand hurts for 5 minutes

I press the elevator press button and it hurts

 

 

Fatigue walking up stairs

When I get fatigued then my body starts to hurt-acid in veins

 

Skin

Bottom of feet marks

Spot left outside forearm


White specks fungus bottom of feet body


Pimples shave arms and face it's never happened before


Brown dots on forehead and arms


Skin cuts on my body my feet then my forehead


Red dot on stomach


Burning in feet when put on shoes

Inside of nose continually itches

Bump inner left forearm just above wrist

Scabs on back of head

Cold sore

Skin elasticity

 

Inside

Stomach distention bump lower belly

Blood in stool only once for a few days

Frequent urination after going off propercia and rogaine

Weight gain

fatigue

Kidney when sit

Shins feel different

Legs clicking when I walk

Right high ankle hurt

Ear infection

Get up sitting dead leg then tingleing 


Weight gain
 in belly

Brain fog always accompanies pain

When get up sitting dead leg
 I can feel pins n needles

Aching in base of wrist and both ankle


body does not heal fast

Bruising not heal

Aching inside shoulders

Stiffness in fingers not joints

Bones feel smaller 

Feet plantars faciatis

Feet feel heavy

Muscle loss over all body composition has changed

Ligaments in elbows when I do tricep push downs in gym which then casues severe aching

Viens legs

Weird muscle configurations shins

Twitch at night when I drink caffiene

Migrains when kid

Muscles when kid

Athletes foot right pinky not heal at all immune system

Tingling lower back

Body and head itching

 

 

[[we...]]

I think all these acronyms are synonymous and used interchangeably although some would add a time element saying that protracted is after 18 months.

 

Post acute withdrawal syndrome

Post withdrawal syndrome

Protracted withdrawal syndrome

Prolonged withdrawal syndrome

 

Collectively knows as PWS or PAWS.

[[2w...]]

Hi Everyone,

 

I just wanted to check and see how everyone was doing. I've been having a lot of insomnia. So, I went to my GP to see if my blood pressure was okay and to talk with her about it. I forgot how miss informed she really is. She wanted to give me a new Z-drug or Seroquel for sleep. I said "No way". You couldn't pay me to take those. So, instead I got an rx for Vistaril (Atarax or Hydroxyzine). I've heard that it really helps with sleep and that it has very few s/x's.

 

Well, I tried it last night. I slept through the night but today has been horrible. I feel so lousy. My head hurts. I'm moody, angry tired, dizzy and just very negative. I've been a zombie all day. I feel like I didn't sleep at all.

 

I think it just depends on the individual and how sensitive they are to certain meds. I guess I'll have to add this name to my medical ID bracelet. LOL This is going to be one complicated medical ID bracelet. I guess I should just write on it "Don't give her any pills" LOL

[[...]]

do you have burning feet fatigue etc???

[[2w...]]

Hey Josh,

 

I'm not sure if you were asking me but here it goes. I have had a lot of itchiness on the bottom of my feet and tingling but I haven't really had much burning feet fatigue. I made up this special stuff I put on my skin and feet in the shower. It really helps with my itchiness. I just wish I could put it on my eyes and face.

[[...]]

Thank you for responding.  The list below are my symptoms and I have had every blood test done and they all say I'm fine.  Now my feet ach if I stand on them for more than 10 minutes and the nerves in my alms and legs hurt.  Please let me know our experiences.

 

 

 

Over sensitive

I high five someone and my hand hurts for 5 minutes

I press the elevator press button and it hurts - electric shocks

Walking up ladder and had to grab hard felt electric shocks going through my body

 

Fatigue

When I get fatigued then my body starts to hurt-acid in veins

happen about 2 pm everyday

Walking up stairs

 

Skin

Always infection in ears

Itchy scalp

Bottom of feet marks

Spot left outside forearm


White specks fungus bottom of feet body


Pimples shave arms and face it's never happened before


Brown dots on forehead and arms


Skin cuts on my body my feet then my forehead


Red dot on stomach


Motorcycle scar more pronounced


Loss of hair face not sure if from IPL Laser company


Burning in feet when put on shoes

Nose continually itches on inside

Bump inner left forearm just above wrist

Scabs on back of head

Cold sore

Skin elasticity

 

Inside

Brain fog always accompanies pain

Stomach distention / bump lower belly

Blood in stool only fro two days

Frequent urination after going off propercia and rogaine

Weight gain

Right Kidney area when sit

Shins feel different

Legs clicking when I walk

Right high ankle hurt

Get up sitting dead leg then tingling 


Weight gain
 in belly

When get up sitting dead leg
 I can feel pins n needles

Aching in base of wrist and both ankle


body does not heal fast

Bruising not heal

Aching inside shoulders

Stiffness in fingers not joints

Bones feel smaller 

Can feel hernia again

Feet plantars faciatis

Feet feel heavy

Muscle loss over all body composition has changed

Ligaments aching in elbows when I do tricep push downs at gym

Viens legs coming out over last year

Weird muscle configurations shins

Twitch at night when I drink caffiene

Athletes foot right pinky not heal at all immune system

Tingling lower back

Body and head itching

 

 

 

[[Mr...]]

I'm here looking for any help for my husband.  He has been suffering now (off and on) for seven years.  I can't find stories out there like ours, but yet some have said that they have heard of this and to just give it time.  He c/t from 6mg of ativan in 2005 in the hospital.  Things started to improve over the years, but it was very hard and long.  He was starting to feel a little better with just having a few symptoms, but they seemed to be in the backround and we were getting ready to start living again, when all of a sudden in 2010 they came back.  They were as bad as in the beginning, and in some cases worse.  I'm here looking for support and help.  He is losing all hope, and I need help reassuring him that he will continue to heal no matter how long is has been. 

[[Wh...]]

I'm here looking for any help for my husband.  He has been suffering now (off and on) for seven years.  I can't find stories out there like ours, but yet some have said that they have heard of this and to just give it time.  He c/t from 6mg of ativan in 2005 in the hospital.  Things started to improve over the years, but it was very hard and long.  He was starting to feel a little better with just having a few symptoms, but they seemed to be in the backround and we were getting ready to start living again, when all of a sudden in 2010 they came back.  They were as bad as in the beginning, and in some cases worse.  I'm here looking for support and help.  He is losing all hope, and I need help reassuring him that he will continue to heal no matter how long is has been.

 

Oh my gosh ... that poor man and poor you for having an ill husband for so long.  That is just so terrible.  I hope Polenta comes along, she may know where to go for more reassurance on this as she too has suffered for far too long.  I'm so sorry.

[Guest [Po...]]

I did read your post and did not rely for fear of frightening you, but the person I would recommend you contact via Battle Against Tranquillisers is Una corbett, by telephone in the UK or email from elsewhere.  I do not have the time to post the links here but i have posted them many times on other threads, so you could either search this site or just google BAT una Corbett.

 

It is a horrible situation we are in, but it is just a matter of time I am afraid.

 

BTW I don't recommend Recovery Road for protracted wd sufferers., there seems to be a lot of denial around on that site.

 

very best

 

P

[[Ve...]]

I'm here looking for any help for my husband.  He has been suffering now (off and on) for seven years.  I can't find stories out there like ours, but yet some have said that they have heard of this and to just give it time.  He c/t from 6mg of ativan in 2005 in the hospital.  Things started to improve over the years, but it was very hard and long.  He was starting to feel a little better with just having a few symptoms, but they seemed to be in the backround and we were getting ready to start living again, when all of a sudden in 2010 they came back.  They were as bad as in the beginning, and in some cases worse.  I'm here looking for support and help.  He is losing all hope, and I need help reassuring him that he will continue to heal no matter how long is has been.

 

I am so sorry for your husband.

I wish both of you all the best.

[[Wh...]]

I did read your post and did not rely for fear of frightening you, but the person I would recommend you contact via Battle Against Tranquillisers is Una corbett, by telephone in the UK or email from elsewhere.  I do not have the time to post the links here but i have posted them many times on other threads, so you could either search this site or just google BAT una Corbett.

 

It is a horrible situation we are in, but it is just a matter of time I am afraid.

 

BTW I don't recommend Recovery Road for protracted wd sufferers., there seems to be a lot of denial around on that site.

 

very best

 

P

 

Thanks Polenta for this response to Mrs. B.

 

Polenta ... did you ever have a window or period of feeling better in your whole time off?  Did you ever drink and get setback that way, as I have?  I am totally not ever going to pull that again and then we'll see if next time I get well again, if the stupid cr*p comes back regardless of what I do or don't do.

[Guest [Po...]]

Yes I have had lots of windows and improvements, but  have just messed it up again too, I just posted how on Flip's blog.

 

sorry this is brief, but i am feeling so nauseous

 

 

P

[[pr...]]

hello, i think i am new here.

i have about 5 1/2 months. i guess i really have 58 days since that was the very last 'rescue dose' benzo i took.

for the last few nights i have been extremely agitated at the symptoms and how long this is taking.

most people that know me on here know that my major complaint if symptoms is my brain. it is extremely active and fly's around my skull like a flying saucer.

i have a lot of very unpleasant neurological symptoms. i was diagnosed with MS in 2002. so i don't really know what is the MS or the benzo withdrawal symptoms?

i was on benzo's for a long time once before and then i did get off them for 7 years. i am now thinking that the symptoms i had at 7 years off that the Doctor's thought were MS could have been protracted withdrawals that ultimately led me back on the klonopin for another 101/2 years.--not a good thing to do in life!

i really think that is what occurred as the 'MS' is no different from that day. and in fact, as i heal from this my feet for the first time in over ten years are starting to feel differently, like maybe they could come back. i don't know? that has been my ultimate complaint over a decade until my brain symptoms started to make their appearance.

if there really is healing from this benzo stuff, i need to take it all the way this time so i never ever get 'led' back to using benzo's again!!

i do believe that i am kindling. i cold turkey'd from klonopin and soma on 4/26/12 and my brain feels like it's been blown out on the bottom left side.

all of the other symptoms i have are all from my brain. i have purple 'brain' lines on my face.

when i wake up the first thing i do is look at my hand as they are filled with 'brain' lines.

my brain just pulses and beats and floats, and fly's around constanfkingly. it's getting so annoying. and i undulate back and forth. but this morning i felt like i was all healed because my brain was calmed until it started up again. if i have to be on a date with a man and my brain is pulsating to the point where my neck goes up & down and cluck's like a chicken and plucks a duck

i will be very embarrassed.

i hope it heals.

thanks, prettydaisys

[[wo...]]

Josh,

You asked for others symptoms.  Listed below are mine, some of which sound a lot like yours.  I too have been checked and they

say nothing is wrong.  Next I'm going to have a brain scan LOL, because they think all the symptoms are in my head.

 

SKIN:

Summer tan from 2011 around ankle below where slacks end when sitting, that won't go away.

Horrible itchy scalp when I get up in the morning, redness on some areas of scalp

Intermittent hand clamminess (no reason for it)

Raised ear scab located in back of ear (if you pull ear forward) in the crevice where ear is attached to head ...

hurts when I lay on that side.

Bruises appear where there has been no injury.  Takes forever to go away.

Intermittent clamminess of hands.  No rhyme or reason to it.  When clammy, hands will stick to anything you touch.

 

INSIDE:

Intermittent drooling (white sticky mucus) and dry mouth.

Tingling in frontal shins.

Difficulty in swallowing (feels like a knot in upper throat on right side which comes and goes).

Burning urinary tract.  Had it checked .. they said it was nothing.

Ears and jaw click when yawning.

Head pressure (when I put a finger on the back side of skull above ears, I get a zap of pain).

Enormous weight loss and benzo belly.

Insomnia.

Arthritic-like pain in finger joints.

Blurred vision.

Fingernails that were always flexible are now so hard you can't bend them.

Mornings are my worst - wake up with adrenaline rushes - stomach pain, hoarseness, hard to breathe, body weakness, extreme fatigue, weak lower legs, muscle pain in myback, heart palps, tightness of middle upper chest (can hardly breathe).  These adrenaline rushes happen during the day intermittently.  I can always tell when they're coming, as my tinnitus increases to the point of not being able to hear.

 

Woe

[[gi...]]

Hello!

I have to join this group too. :'(

I quit klonopin in august 2010..it was really bad.

In march 2011 I started to see some improvements but I was never feeling 100% good.

My sleep was improving, my benzo rage was improving, I would go out and walk 4 or 5 days a week.

Then from december 2011 thing started to become worse, the more time is passing the more is my condition worsening.

In 2011 I used to go to bed around 1-2 am, now I go to sleep 6 am, sometimes evan 8-9-10 am.

Benzo rage came back, every little stress will make me feel bad that's why I cant make any plans, I dont go out, dont meet with other people.

I started to have some new symptoms like vertigo, occasional tinnitus, occasional GI tract problems.

I started to feel fatigued and exhausted.

Some day I manage the symptoms pretty good thinking that it is the wd and it shall pass, other days I'm in despair thinking it wont pass and Ill be like this forever.

I started also to stay awake for 30 hours or more, and this is quite often, and never happened to me on a regular basis.

If I dont sleep I cant function at all.

I see problems that I didn't have in my first year and that makes me think that I'm doomed for life.

I try to have a very healthy diet, I juice, drink tee but this is only when I feel good, when I feel bad I dont care or dont have the energy to cook and juice.

Also I dont go out to walk as often as I did in the first year.

Is this normal, instead of becoming better to become worse?

I am desperate. :'( :'(

 

Wow, Verona, you must be scared out of your wits!  I am for you, too.  I haven't read further to see if you've answered this question, but have you been to your regular doctor?  I've never heard of anyone have this kind of crash so far out. 

 

I know your appetite is in the pits but please, at least have a couple protein shakes every day.  I don't know where you are, but in the States many grocery stores have organic/health food sections where you can find some.  Whey is better than soy for digestion.  You can blend it with milk, with half juice & half milk, or just water - add some berries or banana.  There are some that are pure protein with no added amino acids if you're sensitive to them.

 

I hope you find answers that will help!!

 

I'll keep you in my thoughts.

 

Hang in there -

 

ginger