~~The Bedridden Club~~

[[lo...]]

Thinking about all my bedridden Buddies on Christmas Day.

 

Next year will be better.

 

Hugs

 

LF 

 

 

 

 

[[Co...]]

I hate to be negative but this has been the worst Christmas of my life! I was better last Christmas when I was still in acute. Well actually I'm feel like I'm worse than acute for the last 6 weeks now. I laid in bed dying all day and my wife and kids went to my mom's house. What a great holiday it's been. I'm glad it's over!

 

I hope everyone had a good Christmas and sorry for the negative post.

[[pr...]]

sorry cool, it will get better.

 

i lay on the couch all day after 3 nights in a row of absolutely no sleep. i hate the hard core insomnia when you can't even relax with your own thoughts and feel rested even if you don't get any sleep. brain was wired and amped so i just lay there not even being able to think. it was truly horrible and i'm scared for tonight -- i don't want to take anything.

 

i truly hope that all on this thread will be able to be up and around this new year.

[[gr...]]

TY PD for the post. Yes i need PT for sure. Problem is my depression, which is why im in bed for 16 hrs every day, has me so lethargic i never know when i can find the will power to go to  PT. ...plus acute is kicking my ass.

 

I did contact my Doc and told him i need PT.

 

It hurts like hell and im afraid im damaging it more by not taking care of it and getting it corrected.

 

It hurts so many places, my bicep, back of arm and whole shoulder...stabbing sharp pain.

 

Its wd plus the damn bed, its the shoulder i lay on the most. I knew something severe would happen after 17 months laying in bed for 16 hrs every day.

[[pr...]]

TY PD for the post. Yes i need PT for sure. Problem is my depression, which is why im in bed for 16 hrs every day, has me so lethargic i never know when i can find the will power to go to  PT. ...plus acute is kicking my ass.

 

I did contact my Doc and told him i need PT.

 

It hurts like hell and im afraid im damaging it more by not taking care of it and getting it corrected.

 

It hurts so many places, my bicep, back of arm and whole shoulder...stabbing sharp pain.

 

Its wd plus the damn bed, its the shoulder i lay on the most. I knew something severe would happen after 17 months laying in bed for 16 hrs every day.

 

i was in acute as well when i had the frozen shoulder. i had to force myself to go to PT twice weekly when i could hardly get up or even walk to the bathroom. i got scared though because i had read a post that said something about having some kind of surgery if the frozen shoulder got really bad. now, i don't know if that was true but this was over a year ago and in acute wihtdrawal it scared me so that's why i forced myself.

 

if you can force yourself to go at least once weekly it may help with the depression. i know how hard it is though.

[[lo...]]

Pretty, Cool, Groove

 

I am so sorry things are still so bad for you all.

 

Pain and insomnia are so awful.

 

Praying you will all get some respite very soon.

 

There will be other Christmases to enjoy when this is all over.

 

Hugs, my friends

 

LF 

 

 

[[Co...]]

Thanks LF! Hope you're doing well and had a good Christmas

[[gr...]]

TY PD for the post. Yes i need PT for sure. Problem is my depression, which is why im in bed for 16 hrs every day, has me so lethargic i never know when i can find the will power to go to  PT. ...plus acute is kicking my ass.

 

I did contact my Doc and told him i need PT.

 

It hurts like hell and im afraid im damaging it more by not taking care of it and getting it corrected.

 

It hurts so many places, my bicep, back of arm and whole shoulder...stabbing sharp pain.

 

Its wd plus the damn bed, its the shoulder i lay on the most. I knew something severe would happen after 17 months laying in bed for 16 hrs every day.

 

i was in acute as well when i had the frozen shoulder. i had to force myself to go to PT twice weekly when i could hardly get up or even walk to the bathroom. i got scared though because i had read a post that said something about having some kind of surgery if the frozen shoulder got really bad. now, i don't know if that was true but this was over a year ago and in acute wihtdrawal it scared me so that's why i forced myself.

 

if you can force yourself to go at least once weekly it may help with the depression. i know how hard it is though.

 

Yes...surgery is probably already needed. It feels so damaged and i continue to lay on it in bed. Sleep is almost zero and i have to semi lay on right side if i ever want to fall into my normal micro sleep. Sometimes i just give up. Everything is stacked against me. The depression makes me so lethargic i cant function. Its near impossible to shave, shower get dressed and go somewhere. It sounds like im exageratiing...but i am not. Its like i have a elephant on my back, like im trying to fight the Hulk with one hand. I just cant win the fight. Depression is the worst when its this major. WD is hard enough without it, with it its like why do i even try anymore.

[[pr...]]

TY PD for the post. Yes i need PT for sure. Problem is my depression, which is why im in bed for 16 hrs every day, has me so lethargic i never know when i can find the will power to go to  PT. ...plus acute is kicking my ass.

 

I did contact my Doc and told him i need PT.

 

It hurts like hell and im afraid im damaging it more by not taking care of it and getting it corrected.

 

It hurts so many places, my bicep, back of arm and whole shoulder...stabbing sharp pain.

 

Its wd plus the damn bed, its the shoulder i lay on the most. I knew something severe would happen after 17 months laying in bed for 16 hrs every day.

 

i was in acute as well when i had the frozen shoulder. i had to force myself to go to PT twice weekly when i could hardly get up or even walk to the bathroom. i got scared though because i had read a post that said something about having some kind of surgery if the frozen shoulder got really bad. now, i don't know if that was true but this was over a year ago and in acute wihtdrawal it scared me so that's why i forced myself.

 

if you can force yourself to go at least once weekly it may help with the depression. i know how hard it is though.

 

Yes...surgery is probably already needed. It feels so damaged and i continue to lay on it in bed. Sleep is almost zero and i have to semi lay on right side if i ever want to fall into my normal micro sleep. Sometimes i just give up. Everything is stacked against me. The depression makes me so lethargic i cant function. Its near impossible to shave, shower get dressed and go somewhere. It sounds like im exageratiing...but i am not. Its like i have a elephant on my back, like im trying to fight the Hulk with one hand. I just cant win the fight. Depression is the worst when its this major. WD is hard enough without it, with it its like why do i even try anymore.

 

i couldn't do anything and showering was extremely tortuous and difficult for over 2 years. it's just starting to get easier and i am going into my 29th month. i know how you feel. you just gotta hang in with all these symptoms -- they will change at some point. if they can start changing for me, they will start changing for anyone. i do consider myself a horror story. i know you're not exaggerting.

[[lo...]]

Thinking of all my bedridden friends who are suffering so much.

 

I can't stay awake - have slept so much since Christmas Day - it is like being heavily drugged.

 

When I do waken up I have brain squeezes, head pressure and muscle contractions in legs and bum!!  :'(

 

Nerve pain has gone so symptoms are just uncomfortable now.  I wonder if these symptoms are happening whilst I am sleeping. Hope so and hope it means more healing.  :thumbsup:

 

I can't complain about sleeping too much . It is preferable to lying awake all night. I hope that does not hit me next.

 

I just want to emerge from a deep sleep and be all better. 

 

It is nice to dream.

 

Hugs

 

LF 

 

 

[[An...]]

I had chronic fatigue before benzos for 6 months, I think it was related to ssri tolerance setting in but can't know for sure. I can't seem to find descriptions that match the type of weakness fatigue I experience. Would anyone else describe their weakness/ fatigue as verging on painful/ hurts, feels like i'm weak deep into the bone level?

Would really appreciate some feedback, I'm thinking I may have some permanent damage here 4 years down the track.

[[lo...]]

Hi Annahita

 

It is sometimes very difficult to describe how we feel. I have been in bed 16 months. I can't function because of downward pressure on my brain. At least that is how it seems to me. For months I could hardly lift my head off the pillow. Any attempt to do anything was torture. Pain, sweating, breathless etc. I wonder if what you have is maybe different. Is it primaily symptoms in your body rather than your brain? I could not even do a little dusting or stand in the shower. If I tried the pressure inside my head increased.

 

It must be difficult for you as you had chronic fatigue before benzo withdrawal.  I suffered constant fatigue and depression for 40 years on nitrazepam and ADs. Every day was a struggle to get up, get dressed, get to work, get through the day, get home. Much of non work time was spent sleeping. It really was a half life. No energy for anything except the necessities of life.

 

Now I just feel ill most of the time rather than tired.  You are much further down the road than I am at 22 months off.  I am sure your brain is not permanently damaged. Other folk are taking a very long time to get better and many have already done so.  It gets harder to keep optimistc as time passes and we don't see any improvement. Have you had other symptoms which have subsided?  Have you had any windows however short?

 

I occasionally get a glimpse of feeling better, it lasts a couple of minutes then disappears.  :'(  It is a feeling I have not had for 40 years, a feeling of wellness rather than just an absence of symptoms.

 

I hope you will get some positive signs very soon.

 

Hugs

 

LF 

 

 

[[ra...]]

Hi bbs. I've put off posting on this site until now because I was hoping things would have improved for me sooner, as when things got really bad at the 9 month off stage and I had to take to my bed, I truly thought it would only be a temporary measure - not that 6 months later I would still be bedbound feeling so unwell and still unable to participate in real life yet.    So I'd like to ask you: Is the following still withdrawal or is it me having some sort of physical breakdown:

 

FIRST: The positive side.  Although I still have problems upon waking and through most of the day, the dreaded constant Nausea, dry heaving and physical anxiety of the past 14 months, began  to lessen 2 weeks ago for a few hours some evenings, giving me a little break and allowing me to eat better and feel somewhat more human and relaxed. I even posted this improvement last week to encourage others with these GI problems. But that happening has come at a price:

 

I am now, in addition to the dry heaving etc.., waking up to a horrible PHYSICAL SENSATION which is so hard to describe, but making me feel so ill all day long: It's like a sort of TENSION / ANXIETY / SICKLY FEELING/  & WHITE HOT FLAME FEELING in my throat, chest and all over my body, which then makes me feel as though it's hard to breath and swallow, although my breathing isn't laboured as it would be in a panic attack. 

Obviously I try hard not to buy into this by adding my OWN anxiety but it's hard not to be afraid as it's driving me mental. I do appreciate this condition isn't linier, but one minute you can have a better couple of evenings with something getting easier, only to be followed by a sensation which makes you feel ten times worse.

 

The other thing I notice now is that although I've been one of the lucky ones who can sleep at least 8 hours each night, I also feel the need to sleep for a couple of hours during the day when it all just gets too much.

I know I'm no Spring Chicken, but surely at this stage I should have more energy and be feeling well enough to be up and about instead of spending my days in bed with a choice of staring out the window or looking at 4 walls, because all reading and watching T.V. went out the door when I reached the 9 month stage. (Thankfully a little reading during those better evening times is slowly becoming possible)

 

Can anyone empathise with any of this and maybe recognise this sensation as blood tests done a few months ago show up normal - so quack has put it all down to anxiety - mine, and nothing to do with withdrawal, which, did you know folks, only lasts 'A FEW WEEKS'  according to my G.P.!!!!!!!!!

 

 

I wish you all Healing

 

Racksha.

 

[[lo...]]

Hi racksha

 

I know it is really hard to believe how long this all takes.  I don't have your symptoms but they sound horrible. It is a crazy journey. I only ended up in bed at six months.  Still there 17 months on!!  I am sure you won't be in bed that long.  I sleep a lot when my symptoms are bad. Just accept the relief it brings.  It will all sort itself out.  I can't read and TV makes me feel worse yet a few months ago I was watching TV quite a bit.  My main pastimes are posting on BB and doing word puzzles.  Is there anything you can do to pass the time?  Jigsaws? I did loads of them a few years ago when I was in bed for other reasons.

 

All this will pass.

 

Hugs

 

LF 

[[ra...]]

Hi LookingForward _ I love your name, so positive and I really must do some PMs to you and a few others as Iv'e said I would when I'm feeling a little more human. Yes, like you, I used to be an avid reader, almost a hobby, and I cold watch tv. But for some weird reason when I reached the 9th month out and got really ill, it all went out of the window, because my brain just couldn't handle it anymore - Any stimulas just brought on all the damned symptoms. But when I get those few hours break some evenings, I have just, these past 2 weeks, started to read a little a few chapters at a time. So thank goodness the reading is coming back -  don't mind so much about no tele. That can wait.

 

I think your idea of jigsaws is a good one, so might give it a try. The only problem I have at the moment with that in mind, is that when I am feeling sooooo unwell most of the day, I don't want to do a damned thing - no interest, just  bundle of symptoms. But I will try.

 

Hugs - hope we can chat again  soon. I JUST WANT TO GET OUT OF THIS BED AND START LIVING LIKE A NORMAL HUMAN BEING.

 

                          I know - Don't we All.

 

                            xxxxxxxxxxxxxxx

[[Je...]]

Raksha, I hope you and everyone else on this post heals up soon. I feel incredibly sad that you are all hurting to this level.  :'(

 

I send you many hugs, :hug: and love.  :smitten:

 

I know words can sometimes come off as sounding cheap or unimportant at times, especially online, but I truly mean it when I say that I care.

[[lo...]]

Hi Jenn

 

Words are also very powerful and heartwarming.

 

Thanks for your kind wishes.

 

Hugs

 

LF 

 

 

[[Je...]]

Hi racksha

 

I know it is really hard to believe how long this all takes.  I don't have your symptoms but they sound horrible. It is a crazy journey. I only ended up in bed at six months.  Still there 17 months on!!  I am sure you won't be in bed that long.  I sleep a lot when my symptoms are bad. Just accept the relief it brings.  It will all sort itself out.  I can't read and TV makes me feel worse yet a few months ago I was watching TV quite a bit.  My main pastimes are posting on BB and doing word puzzles.  Is there anything you can do to pass the time?  Jigsaws? I did loads of them a few years ago when I was in bed for other reasons.

 

All this will pass.

 

Hugs

 

LF 

 

Hugs and love to you. :hug:  :smitten:

[[Je...]]

Hi Jenn

 

Words are also very powerful and heartwarming.

 

Thanks for your kind wishes.

 

Hugs

 

LF 

 

Thank you for your kindness. I want all of you to get well, and soon. I know that not everyone on this board is religious, but I want you to know I am praying for all of you, every night. Not saying it to boast. Saying it because I care for you, and I want healing for all.

[[ra...]]

JennWantsZen Thank you so much for your very kind and caring thoughts. The world needs compassionate people. So am so grateful.

And it's so nice to be having contact with all the lovely people I am getting to know on bbs.

 

Lots of hugs

 

Racksha xxxx

[[Je...]]

JennWantsZen Thank you so much for your very kind and caring thoughts. The world needs compassionate people. So am so grateful.

And it's so nice to be having contact with all the lovely people I am getting to know on bbs.

 

Lots of hugs

 

Racksha xxxx

 

Thank you for your kindness. I pray that you get well.

[[pr...]]

FIRST: The positive side.  Although I still have problems upon waking and through most of the day, the dreaded constant Nausea, dry heaving and physical anxiety of the past 14 months, began  to lessen 2 weeks ago for a few hours some evenings, giving me a little break and allowing me to eat better and feel somewhat more human and relaxed. I even posted this improvement last week to encourage others with these GI problems. But that happening has come at a price:

 

racksha,

 

i had on-going nausea for 19 months and then it went away. i also had on-going extreme fatigue for about that long too and that all changed. you are healing and need to rest and sleep. i promise it will change. age has nothing to do with it. i wish i could rest and sleep more, now it's kinda changed to where i'm agitated and "up" all the time and i need to relax more but the constant head pressure makes it difficult to ever relax unfortunately. can't wait until it goes away.

 

pretty

[[Wi...]]

What a relief to see I am not the only one! 

 

Here is my jam:

 

My meds were prescribed for physical pain after an injury, not for mental health.  My incompetent doctors never sent me to the right kind of physical therapy, so my pain never got better, and they bullied me into going on meds by telling my I had some kind of permanent pain disease.  I eventually learned, after four years on meds, that I had been misdiagnosed and there WAS a special kind of physical therapy that could help me, so I asked the docs about a taper plan to get off the meds that had been giving me side effects, anyway.  The docs told me I would not experience withdrawal.  I was SO excited to get off the bad meds and start my physical therapy for the recovery I had been told would never happen.  I was so happy and relieved and excited that my deep muscle injury had finally been discovered and that I didn't have chronic pain condition.  Then, I got hit with disabling withdrawal after removing the meds.

 

Here were my meds:

2011: 1 mg lorazepam nightly

May 2012 - December 2013: 30 mg nortriptyline nightly, 1 mg lorazepam approx. once a month

January 2014 - October 2014: Switched from nortriptyline to desipramine 

January 2014 - October 2014: 1 or 1.5 mgs lorazepam approx three times a week

 

I was told I could move from 1.5 mgs lorazepam down to 0.5 down to 0 in one month and I'd be safe, so I did that.

 

At the beginning of January 2014, I was at 60 mg desiprmaine.  Was told I could move down 10 mg each month, so I did.  When I was down to 30 mg, I held for a while, then was told I could safely go down from 30 mg desipramine down to 0 mg by reducing 10 mg every 2-4 days, so I did that.

 

So, I ended up accidentally cold-switching from one TCA to another, then accidentally cold turkeyed a benzo AND a TCA at the same time.

 

It's possible that my withdrawal began when I was switched from nortriptyline to desipramine.  Whatever, anyway, I'm obviously going through triple withdrawal: 1 benzo plus 2 TCAs

 

-Anyway, at this point, I can't walk because of leg jerks and curls

-Can't chew and swallow solid foods

-Myoclonic jerks, awake and when trying to fall asleep

-Face scrunching 

-The left side of my body is excessively rigid and the right side of my body is weak. 

-My right leg drags. 

-My arms and hands curl up into balls. 

-I have become stupid

-I am now suspecting the beginnings of stomach pain

-body zaps

-brain zaps

-everything looks too far away

-legs jerk when I walk

-need to use a walker

-lethargy

-bladder pain

-constant sensation of bladder urgency so bad that I swear the thing is going to tear open

-right foot drop

-right leg dragging

-loss of fine motor control

-food sensitivies

 

Off everything as of October 29, 2014.  It's now February 17, 2015.  So, I've been off 3.5 months.  Ugh.  Help.  I'm sure if the physical symptoms cleared up, it would help me with the emotional and mental symptoms.  I've never been depressed, angry, or dumb in my life until now.  I'm so jealous of the people whose bodies function during withdrawal, because mine doesn't.

 

I used to be an athlete and college prof.  Now, I receive 24-hour care, including assistance eating and bathing.

 

Has anybody on this thread STOPPED being bedridden?

[[lo...]]

Hi Wigglelt

 

OMG! I cannot believe this has happened to you.  I am so very sorry.

 

I am still in bed at 23 months but I am so close to getting better.  Everything is improving. No pain and cog fog clearing now. Left with mild symptoms only - brain squeezes, contractions in legs and inside my bum.  :'(  Bowel problems have been one of my worst symptoms. When I get out of bed my legs are so very heavy so can't stay up long.

 

At my worst I had nerve pain all over my body and could hardly lift my head off the pillow.  I wasn't as badly affected as you clearly are.

 

I was put on nitrazepam for myoclonic jerks 40 years ago and suffered 40 years of depression as a result. I am now free from depression, free from myoclonic jerks and plan to make a full recovery.

 

I am sure you will too, in time. 

 

Hugs

 

LF 

 

 

[[ra...]]

If anyone had told me when I first came off that small amount of drug (2mg Diazepam) that I would still be laying  here in my bed feeling sick and ill 14 months later, I would have said they were Mad. But here I am and I just don't know what to say or think anymore regarding this damned awful state we're in. And  Iv'e completely given up trying to work out all the why's and wherefores as it's wasted energy, because other than TIME itself there seems to be no positive answers as to when, as individuals, we heal. The fact that our journey consists of the many ups and downs of waves and windows is such a cruel part of it.

 

Sometimes I have hope and can eat as if I've been starved for a 100 years,  other times I am in utter despair planning my own funeral, unable to keep even water down. Then there are the times when the anxiety lessens a little and I think 'oh great it's going' only to have it return later out of the blue, leaving me sitting on the bed frozen to the spot like a rabbit startled in headlights.  It's like being on a never ending merry-go-round, or being awake in a physical & emotional nightmare.

So,as said, I no longer know what to think anymore . I just eat, sleep and exist and cling on by the skin of my teeth to the thought that others have fully recovered so why shouldn't  we all in TIME.

 

I wish Good healing for all and say thank goodness we have eachother to help get through it.

 

Racksha.