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physical pain keeping me back


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I thought i was proceeding towards recovery until my back suddenly went out abut a month ago and I've had excruciating pain down my legs, pelvis, bladder.  I hate that word, "excruciating" but I'm afraid it's apt.  I had back surgery in 1993 and now I feel the way I did  post op!  Xrays show only some arthritis and the docs want to do the usual steroid shots.  I go to P.T. and am now even taking dilaudid.  I can barely walk now.  I am loathe to take  any pain meds but I'm in agony by 5PM.  Now I'm going to have to taper off 4mgs diluadid - not much but another taper. 

 

Up to this point I think I've endured almost every physical sx on the w/d list.  I just don't have any more mind tricks to stay motivated - "accept" bla, bla  - because I don't even know if this is w/d .  I don't know how to comfort myself anymore at this point.  I am not imagining the worst.  I feel like I'm in it.

 

I'm slowly headed towards being bed bound due to pain.  The depression I have these days is a reaction to this condition.  I know how to do depression!  What is happening?  BB Veterans - I am praying this is w/d.  A couple of folks have kindly comforted me with their own experience with the back/ leg/nerve stuff and getting past it.  I am desperate for support.  :'(  WBB

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It's w/d and I couldn't barely walk in February, back pain has been one of my worst issues during tolerance and after my jump. I broke my lower back in an accident many years ago and it is said that benzo symptoms are targetting those spots that are from before a weak point on us.

Stay strong, don't worry about the depression it's a part of the w/d and it's on,y natural to feel depressed in this situation we are enduring.

All my love and big warm hugs :smitten:

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Thank you so much, Elbetter - you are a salve, for sure -- I have been losing hope.  Today I fell apart on my physical therapist gal.  Tears of exhaustion after months of misery.  I haven't cried really at all during all of this - so today the dam burst.  She was really sweet to me in this compromised state.  I'll accept this pain if this is w/d.  Trying to stay motivated after so many months of sxs - is so hard. 

 

How cool your artwork is, btw.  Tell me your influences - pm if you want.  Thank you dear.  WBB

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I'm so sorry you are going through all this WBB.  I'm glad you got it checked out.  I've heard too that benzo withdrawal can aggravate our weak points.  I've had various knee, back, old operations, etc pain that I hadn't felt in years going through all this.  I really hope your pain calms down again soon and your depression lifts.  Sending you lots of hugs  :hug: 
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I'm so sorry you are going through all this WBB.  I'm glad you got it checked out.  I've heard too that benzo withdrawal can aggravate our weak points.  I've had various knee, back, old operations, etc pain that I hadn't felt in years going through all this.  I really hope your pain calms down again soon and your depression lifts.  Sending you lots of hugs  :hug:

Nice to see you again, Burned.  I definitely don't know how to keep track of kindred spirits on BB -- we all are -- but I mean the ones with all of this physical stuff.  Are you over your physical pains now?  I see you jumped just before me. 

 

Are u over your pains, Elbette? 

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You might want to check out Dr. Sarno's books about back pain and others about the mindbody connection.  Your pain is real, but it has more to do with your brain misfiring signals than it does with anything wrong at the perceived site of the pain.  Too many people spiral downward from "a bad back" by having surgeries, getting on pain meds etc. I've been there and I know how impossible it seems to think you could ever NOT be entirely bummed out and depressed when you're in constant pain.  The trick is, when the depression goes away, THEN the pain will recede. I wish you luck and healing.
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Sorry, WBB, for your back pain.  Are you taking other meds besides the Dilaudid now?  Same thing happened to me months ago with my back and leg.  I got my 8' ladder out of the shed and got on the roof to caulk it and did something to my back, leg and hip, then.  It hasn't been the same since, and I walk with a constant limp now and can hardly walk.  I had lower lumbar surgery in 1996 for a herniated disc and now I've reinjured it, I think.  The constant state of anxiety I'm in each day from the drug damage makes it hurt all the time.  I'm in excrutiating pain, too, alot, so you're not alone.  I cry and howl at night in bed and at other times. 
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I'm so sorry you are going through all this WBB.  I'm glad you got it checked out.  I've heard too that benzo withdrawal can aggravate our weak points.  I've had various knee, back, old operations, etc pain that I hadn't felt in years going through all this.  I really hope your pain calms down again soon and your depression lifts.  Sending you lots of hugs  :hug:

Nice to see you again, Burned.  I definitely don't know how to keep track of kindred spirits on BB -- we all are -- but I mean the ones with all of this physical stuff.  Are you over your physical pains now?  I see you jumped just before me. 

 

Are u over your pains, Elbette?

 

:laugh: No im nowhere over my pains dear. They come and go and i often feel like you, But im trying to Facemy pains and observe them and analyze them, is it really so painfull, where is this coming from and this and that and then after I kinda try to ignore them and move on. Whenever I'm in a bad wave the pains are often worse and I think I'm serious I'll and my brain won't think logically, I've been much better with coping skills and to stay calm, because deep inside when I think back after my jump, I see how it all started.

My despair and crying spells comes and goes, I think the fact when you've been in tolerance for years with the same miserable state and still are in agony nearly six months out can make any person depressed exhausted and totally miserable. But the pains are a part of us our body and brains, so I'm trying to take care of every part of it, never try to avoid your pains it just creates a agitated energy inside you and produce more pain.

Like now, the back pain is at the same time giving you pain, but also frustration because you can't do anything  and that again creates a lot of negative feelings and thinking ohhh I'll never be well, I can't take anymore, it's probably not benzo and so on and on, you're then already in a such negative spirale and your brain is firing of adrenaline and pain is increasing even more.

Stay calm and cope, like ohhh I have a back pain, my body tells me I should then take it easy, I'll lay down for a while, it's benzo w/d it will subside, I'll try listen to some meditation music and it'll take the time it will take.

It's not easy, and I'm a doer, I have to do stuff all the time, and this journey has kinda learned me that it's ok to not doing anything all the time, sometimes we are sick and we need to rest and nurture ourselves.

To stay calm will make your heart beat calmer, to accept will make your mind calmer and more relaxed, those together in peace will make the journey easier and make the healing appear maybe faster. We can only hope :smitten:

Hugs and all my best thoughts to you all ;)

 

And thanks for the nice words on my art  :) I never really know what influences me making my art, it just starts to pouring out thoughts and visions from inside and I put it out on something :o  :)

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It's most likely from the Benzos, as a lot of people say wd hits pre existing weaknesses. This is why I make sure my S/O avoids Benzos at all costs, because like you, he had spinal surgery and has chronic pain. I wouldn't worry too much about needing the Dilaudid, you're taking it because you're in a lot of pain, which is what it's for. Opiates are, in my opinion, a far calmer beast to Benzos. If you are able to stay on the lowest possible dose, and taper off it once you no longer need it, you'll be fine.  :smitten:
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Looks like you jumped close to the same time as me. I didn't really have much of physical pain until around 3 1/2 - 4 months, then it was relentless until now (a week from 7 months). Nerve pain, legs / arms, all over. It got really bad around the end of month 6 and start of month 7. It has slowly started to ease up a bit and this week I've had 2-3 days now without any. I am really hoping it's gone now. I was in tears many many times so I can relate to how you feel. Almost 2 weeks ago I started taking Alpha Lipoic acid. Not sure if it helped or not but I'll continue for a little while just in case.

 

Wishing you well..

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Thnx Elb and Dapple for the reassuring words-- Looks like we have all jumped around the same time.

 

I have a new jewelers scale to begin cutting the Diluadid only because it is now creating the interdose w/d thing and some headache.  Unfortunately, I can't take Advil now because it aggravates my bladder so much - always something.  So, Becks - yes - Dilaudid is the only thing now.  I triggered this pain from doing a small amount of treadmill to get some weight off since it worked in the past and helps sleep.  Well - no more of that.

 

This morning I couldn't walk at all but forced myself a bit and i pretend things are alright so that I can interact with my teenage son who, luckily, has decided to learn card tricks and practices them on me while I'm in bed.  One silver lining!

 

I guess I wonder if I should keep moving or get bed rest.  I feel like every movement is aggravating my left leg.  The PT gal feels there are spurs in this left hip socket because of the limits and pain response.  This was interesting because it was only after I asked the hip doc last week, "What is this stuff here I see on my xray?"  He responded it was some spur which is compensating for the arthritis.  Why the hell don't they tell you this stuff in the first place?  Needless to say I'm getting a second opinion and also ask for an MRI.  I know this is my health anxiety on overdrive but since the left sartorius muscle has been an issue for many years  I just want more info to rule out (or in) hip joint osteoplasty.  Believe it or not I am more afraid of a cortisone shot in there than surgery because of the bad reactions so many folks here on BB have had to cortisone injections or by mouth. 

 

yes - 63 - I know there is a head component to this pain.  My acupuncture guy does alot of the interrupting signal stuff and I think it helps over time.  Luckily insurance covers it but I need to find someone closer so I don't erase all his good work with a long drive.  Thanks for reminding me about this. 

 

I know I need to wait on everything.  I know 18 months is sort of an arbitrary number but I'm willing to tough it out if this is all w/d.  I've sort of made 18 months the deadline. I really can't see how I could live this way for that long so I try not to project. 

 

Was it you S 63 who coined, "the no plan, plan"?  because the other thing I'm struggling with is the loss of goals.  I have been in this health crisis so long, I don't have any.  I've managed to do a few little things in life lately that have nothing to do with health or w/d stuff but I am usually acting in the service or benefit of other people and their ambitions.  I should be an agent!  So today I'm just despondent about the fact that this leg thing takes so much attention.  No plan today.

 

Right now looking out the window at all the gardening I can't do.  Oh well. 2 landscape helpers have bagged out on me already.  Guess it's going to have to look like Miss Haversham's out there. 

 

I love you all.  I would be beside myself with fear if it weren't for your support.  Thanks for reading my perseverations (my new word  - ha - is that a word?).

 

WBB

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Yes, Wannabe, that was me with the No Plans Plan.  And it totally worked for me.  But as you come out of this, you hit a point where it's time to start trying to push forward again with baby steps.  If you don't push forward, you draw the circle around yourself narrower and tighter.

 

But I can't tell you how good it feels to once a gain be a person who puts stuff on my calendar without a second thought.  Yesterday I was thinking, "People!  I have a calendar and I know how to use it!"

 

Rushing off to Barre3 class now.  At 66, I'm pretty sure I'm the oldest person in there and that's great.

 

Hang in there.  You WILL get through this!

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Well, I've been struggling against it but the fear is taking hold.  yes, I want to move on and I definitely want to think about something other than the pain but it is so distracting and now all-consuming!  I haven't begun to cut the diluadid yet.  But I haven't increased it.  I'm just feeling very trapped.  I can't wait for this  condition to go away - or at least abate but I don't really know what's wrong in the first place. i pray everyday: "its just w/d"

 

i went to a new and closer acupuncturist today but of course in one visit its too soon to tell.  i am losing motivation and rather remain in bed.  I came home and could barely sit since it feels like knives shoved into my hips.  I ' m worse 4-7PM so I just try to be productive during the other sort of painful hours. 

 

One thing I have to get honest about is my diet.  I know I can control what goes in my mouth but the feelings take over.  A year ago I thought I would never be able to eat what I wanted- I was so sick. Well now I eat for solace - the good and the bad.  The recent extra lbs cant help this back condition and so i am railing against the fear so i can be mindful of the diet.

 

yikes - have to drive son somewhere -- sorry to vent.  WBB

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I hope the acupuncture can take the edge off your pain WBB.  That, hypnotherapy and cranial sacral/visceral massage have all helped my GI pains and neck pains.  GI pain been worse lately-not sure why.  Hard to determine if WD or previous issues...or both...ugh.  Right there with you about hoping "its just w/d" for sure. 

 

 

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Thanks Burned - you've definitely suffered.  Well - this accupuncturist listened to my history and interpreted it as I needed to detox and treated me as if I had to "clear" toxins or something.  The next day I was in serious w/d from the small dose of from dilaudid I take.  At least I knew what was happening and rode it out.  She is not as experienced as my other guy but she accepts my insurance and is closer so I'll try again.

 

I'm thinking that massage is the next thing.  I think I could tolerate a short one.  Today was the first day I felt less hopeless.  When does life start?  DOes anybody know?WBB

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Well - I would love to report that this pelvic back pain thing is lifting but it's not.  I'm thinking it s a pelvic floor dysfunction problem after reading here:  http://www.beyondbasicsphysicaltherapy.com/pfd  - this place is 2 hours from my in NYC.  Not up for that yet but I can't find a pelvic p.t. nearby.

 

My p.t. therapist latches herself on to my left leg to open p the left hip a bit.  Man, it's like she is trying to crack open a human walnut.  And it feels great but only while she is doing it.  I walk better for awhile and then its back.  It's very hard to think about something else.  Despite the bed beckoning me, I just do everything in pain thats all. 

 

The interstitial cystitis is back and vaginitis is clenched like a fist -- like my whole pelvis is in pain or on fire or both.  My quality of life is almost nil.  I am barely taking the dilaudid since it was turning on me and is a dead end.  Acupuncture is just not touching this  - not this time.  Tylenol, Advil -- nothing.  What the hell?

 

I've read through archives so I know this is possibly a thing in w/d.  Prayin.

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thnx, Becks -- i'm pretty miserable i guess.  I hope this chapter ends soon.  Wbb

Hi there WBB

I certainly feel for you, and as you might know I had huge issues with back pain, lower and upper and kinda every where, together with exstreme neck and shoulder pain, joint and muscle pain, tightness in all muscles.

I've been going to my chiropractor ever since February, it's been helping a lot, but to find a good gentle chiropractor ain't easy, because it's essential that they understand what we're going through, or they can do more damage than good. Well mine do, but what I want to say is... I also started swimming 4 weeks ago, once a week, very slow sometimes I don't even swim I just move around like a crazy maniac seal in the water for half and hour or so. ( I do get strange looks from others, but who cares, I just imagine they're jealous on my big cute seal eyes :laugh: and my incredible swimming skills  :D) after I take sauna and cold showers on and of for half an hour or more.

And it has helped enormously, everything has started to loose up, my neck pain is barely noticeable and I sleep so much better.

I think that when moving around in water you're kinda moving every muscle and fiber in the body in a very soft and gentle way, just as we need. :thumbsup:

I just have to mention that the first and second time I was completely shattered the day after, but not in w/d way, just like when you've used your muscles after training way.

Well it's just a suggestion you could try if you have the possibility to do it :thumbsup:

Take care and may we all heal :smitten:

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WBB,

 

Sorry you are having the pelvic floor pain-it can make sitting or doing anything really rough.  I had some issues before wd but, nothing like after getting off benzos.  Seems like benzo withdrawal can really hit our weakest spots for sure.  I hope you will be able to see a specialist before too long.  They can give you some gentle stretches that help a bit.  Yep, the IC can definitely be WD related.  I take aloe vera caps and drink marshmallow tea and find they help sooth the IC pain and burning and can even keep flare ups at bay.  I read a couple of really helpful books about IC:

 

--Along the Healing Path-Recovering from Interstitial Cystitis by Catherine M. Simone

--The Interstitial Cystitis Solution by Nicole Cozean, PT, DPT, WCS, and Jesse Cozean (it also addresses pelvic floor dysfunction and has some stretches)

 

Elbette:  I love reading your posts!  You have a great attitude and are so funny-"I just move around like a crazy maniac seal in the water...I do get strange looks from others, but, who cares, I just imagine they're jealous of my big cute seal eyes and my incredible swimming skills",  :laugh:

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WBB, It's interesting that you mentioned the IC.  Hope4us who had so many autoantibodies in her system and at high titers also got IC when she got off the pills. 
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