Have Not Laid Down In Over 6 Years (Possible Discectomy)

[HalfLife]

Hi all,

Yeah, I have not been able to lie in a bed (or recliner or any other jury rigged setup I've tried) over the years.

Most Doctors and other people think I'm exaggerating but my wife knows... That's just the beginning of the concessions I make to pain. The Doctor who finally performed a partial discectomy understands too. Understands that I can't even sit back in any chair. At this point I know it is not the chairs or the beds -- it's me.

Seeing people here reporting similar problems that I can relate to really caught my attention.

As I only get a few hours of half way pain-free time a day where I can think straight or type, I'll keep this short.

I saw member Molly* mention that pain prevented her from laying down too. Who else lives through that torture here I'd be curious to know? Even with an untold number of advanced Boolean internet searches I've only found a handful of people in similar straits.

It takes such a toll to never lay down and to get but 2-3 hours of sleep at most perched at an odd angle at the edge of my chair.

I'll be back when I can...

Feel better everyone.

halflife

[Justin]

Hi Halflife,

Welcome to the Spine Patient Society.

I can't imagine not being able to lay down. I'm sorry that you have been dealing with this for so long. Are you able to lay on your sides as opposed to supine? What are your other symptoms? Did the discectomy (what level?) provide any measurable relief?

Sorry for all of the questions above. Once again, welcome and I do hope we can help.

[Rebecca]

Hey Halflife,
I am so sorry it has been six years since you laid down. Well I can't say it is the same for me I can say I fear laying down. I put off going to bed every night until I am almost asleep. And every night I moan and whine and sometimes cry in pain. Laying is the worst. I am woken from the pain constantly. Even with the stupid pain pills. If my little girl didn't come in the bedroom every night looking for mom I would probably sleep somewhere else. Not sure where because sitting sucks too. How do you sleep. I heard of an antigravity chair maybe you could get sleep in that. There are outdoor ones that are cheaper than the, out of my range, nice ones made for inside. (wish I could afford one). I am currently looking for an outdoor one and hoping that it helps. I am also really hoping my upcoming surgery helps with this along with other things. Did your discectomy help? Do you think more than that need to be done? I hope you find peace and sleep soon!
Rebecca

[HalfLife]

Hi Rebecca, Justin,

Sorry for the delay in replying but I only get about 4-6 hours of day reasonably pain-free - at least to the point where I can stay in front of the PC. Right now, while I can't sit back in the chair, at least I can perch at the edge and type.

Don't you all be sorry for anything It's not your fault this happened to me. If it were I would sue you I appreciate your questions about my weird plight. As I noted, most people don't quite believe that I really cannot lie down.

Rebecca, I see how I started out in your description of your pain -- don't let it go any further without insisting on an answer and solution from your Doctors. A solution besides simply slleeping elsewhere which is the best I usually got from Doctors.! In my case, it was a gradual decline to where I've been for the past several years.

The first couple of years, if I slept 6 hours in bed, I'd likely miss work the next day because of pain to the point where I couldn't drive, let alone do much else. After a while, I tried to "cop" 2 hours of sleep a night in bed and ask my wife to wake me the first time she got up during the night to use the bathroom. I'd then retire to the chair for a few remaining hours of fitful rest.

Eventually I realized the futility of playing that game -- sometimes my wife didn't wake, by 2004, I had lost the job anyway "You walk too slow and take too long to get out of your chair".

I put off going to bed every night until I am almost asleep. And every night I moan and whine and sometimes cry in pain.

Rebecca, again I fear for you going down my route over the years. Please seek resolution. This has driven me mad over time. Your mention of moaning recalls how I'd ask my wife to observe me during "bed sleep". I'd awake so shuddering in pain, I thought I was perhapss having seizures. Instead, all my wife would note was the moaning and groaning during these tests.

I am woken from the pain constantly. Even with the stupid pain pills.

There is not enough pain medication in the world to bring my pain level down to a 1-2 for very long now. The Doctor has offered to go up on at least the MS Contin, but not knowing where this will lead, I've perhaps foolishly held off. Instead I try to save my "human face" for when my wife is at home in the evening and suffer during the day and overnight. Even sleeping in any chair for long ruins me, so I don't risk more than a couple of hours of shuteye a night.

Not sure where because sitting sucks too. How do you sleep. I heard of an antigravity chair maybe you could get sleep in that. There are outdoor ones that are cheaper than the, out of my range, nice ones made for inside. (wish I could afford one).

Indeed, sitting stinks too. Anywhere I go, I test chairs but never find one that I can get comfortable in to put it mildly. Unfortunately, I can't stand up for more than about 3 minutes either without the back pain. In addition, I can't walk more than a block without pain. Outdoor trips are pretty much off-limits, can't travel far in the car either, so I'm left here in the chair for 20 hours a day.

I've spent thousands on furniture that supposedly can accommodate a "bad back", but it was all a waste. The anti-gravity chairs seem just to be sophisticated, overpriced recliners and I cannot rest in a recliner either. I've faced the fact where it is not the bed, not the chairs, it is me. I should expand on not being able to sleep in a bed to not being able to enjoy any existence that doesn't soon result in a 9-10 (even 10+) pain level in short order. I've found no appliance, no seat or physical position that doesn't eventually aggravate the body part that is causing this pain to flair up something mighty.

I am also really hoping my upcoming surgery helps with this along with other things. Did your discectomy help? Do you think more than that need to be done?

Well, the 13th of 17 Doctors whom I've consulted about this problem and pain over the years participated in the surgery. He was the first to really understand what my life is like -- especially after speaking with my so patient and loving wife of 35 years.

He gives this an 85% chance of working and claims that 6 weeks post sx should be the telling point. Right now I feel horrible, worse than before even with Oxycodone introduced along with my other meds. However, I believe my additional pain now is due to lying down and being jostled to no end during the 2 hour procedure. I always joke with the Doctor that I'm only willing to lie down "for science".

I may require the full discectomy of L4. In your favour is the relatively recent onset of your symptoms. My Doctor said the only thing that works against my recovery is the long duration of my symptomatology. Too many years were wasted by Doctors who essentially ran injection mills, plus several hundred hours of PT, SMUA's and long periods of being sent away with useless NSAIDs. Sadly, back pain related issues are often treated as an industry by Doctors and I was assumed to simply have Sciatica even though that normally causes pain running down the leg and is transient in nature. I also have a rare form of MD that presents some odd neurological symptoms, but doesn't hurt. It was too easy for Doctors to pass me from one specialist (Neuro to Ortho) to the next without realizing that one can have 2 distinct conditions.

Rebecca, I will indeed pray that your upcoming surgery relieves you of your pain permanently. Thanks for asking after me.

*****************

Thank you Justin for your warm welcome.

I can't imagine not being able to lay down. I'm sorry that you have been dealing with this for so long. Are you able to lay on your sides as opposed to supine?

I can't imagine this either. In fact, until last year, each month I would try to lie down for 2 hours each month believing this can't be enduring so long and consistently. In the early days, if I slept a couple of hours in a bed, I'd hurt all day, then that extended to 2 days after a "test", then 3 days, then last year, the pain never went away. Even my best makeshift chair setup fails me more often than not. Often I can't sit either which gives me no safe haven, can't sit, stand, lie or walk. It's robbed me of my concentration over time....

I can neither lay down prone or supine or any other way. Eventually, I'll trip the pain, that could happen during an "accidental" chair nap of 10 minutes. I used to tie myself up in various ways to secure my position but feared accidental suffocation and my life insurance not paying out in the false belief that I decided to "end it".

What are your other symptoms?

Pain accross the lower back where a man would wear a belt. It then extends upward on the left side and will rise like a thermometer if left unchecked (no meds in other words). I've had every manner of scan times 3 and the only clue to anything amiss is the typical disc deterioration that a middle-aged man (53) is likely to show. I've had tests and scans of all othermajor organs over the years.

While I started out with the typical middle-aged spread of being 25-30 pounds overweight, I've been a trim 5'7" 145 pounds for several years. I'd have few problems if not for this.

The form of MD I have was present since birth but not diagnosed until much later. I thought everyone got periodic paralysis now and then for years and Doctors shrugged those symptoms off. It wasn't until I woke up in my chair one day paralyzed from the neck down that a diagnosis was reached. I've since recovered from that bout fortunately!

Did the discectomy (what level?) provide any measurable relief?

Well, not yet as I mentioned somewhere in this tome. It's been 3 weeks and I am far worse, but hope to see improvement after six weeks as per my Doctor. They attacked L4 in my case.

I feel worse for you guys, Rebecca and Justin since you seem so young to be suffering. I enjoyed good health until I was somewhere in my 40's.

Sorry to have gone on so long, but it hurt me a lot (physically!) to write this. A few times I approached this thread but couldn't get comfortable enough in front of the keyboard to type.

I truly appreciate your interest and comments. Great site and people here!

halflife

[Jack-of-all-trades]

I saw on TV about a guy who had similar problems a while back. He built himself a box, like a hinged footlocker standing on end, he rigged it up where he would hang inside at his perfect angle with slings and so-forth. Slings under his arms helped to take the weight off his back just enough to stretch out his spine. It worked for him.

[KBear]

Wow Halflife, I am so sorry you are going through this. I wish I had some wisdom on this; but I have none. I am actually most comfortable lying down and I can't imagine not having that (and my heating pad of course- LOL.... I'm addicted to that thing, like my 8th one in 4 years, I literally wear them out!) Anyhow, I hope your surgery works and you can get rest soon. Pain sucks and it really does just suck the life out of you. I know I didn't want to even leave my house, for fear of the pain coming and being somewhere where I coudn't rest. I still am weary, but I am doing much better and realizing that I can do things again.
Kathy

[Johnny Vegas]

Just wanted to say don't take no from any idiot Doctor until they are willing to act for you. I spent years and years running around making idiots money so they could perfrom their so called "tests" and "therapies," which never worked. Demand answers. Good luck and I feel for you.

[KBear]

Just wanted to say don't take no from any idiot Doctor until they are willing to act for you. I spent years and years running around making idiots money so they could perfrom their so called "tests" and "therapies," which never worked. Demand answers. Good luck and I feel for you.

Me too. I know the injections do work for some people (my husband is one of those lucky ones) and that most people don't end up in our boat; but there is definitely a point to say enough is enough with the conservative treatment. I was told, by my last doctor, that I needed chronic pain management and nothing could be done for me (of course after they wasted a year of my life doing injections and such, and the dr before them did the same for 18 months). I then went looking for a pain management doctor, which is not easy to find, almost every office told me that they only treat pain if you are doing injections and such..... they didn't care that I had already done all of that for 2.5 years. It was only upon finding a pain management doctor, who happened to work at TBI (which I had not heard of), that he asked me if I would be willing to have surgery. I believe my words were "If you told me that there was a chance that standing on my head for 8 hours a day would work, I would do it. I am willing to try anything that has a 50% chance of working". I then found out about ADR and started researching, found forums, researched some more and had surgery.