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Chronic pain - and severe, recurrent episodes of low back pain

CoyoteCCoyote Posts: 120
edited 06/11/2012 - 8:51 AM in Chronic Pain
I posted this a couple of days ago - with no response - so I'm just trying to re-word it to see if there's anyone out there with the same problem.

I have chronic pain from L4-L5 ddd, tear and bulge. I have to keep my activity level very low (about 4 hours of "light" activity a day is my limit), because the pain builds and builds, the more I do.

Aside from this, I also have periodic "acute" episodes of pain - It's not a "flare-up" - It's where I make a movement (usually standing up) and my "back goes out" - When "my back goes out" I can barely stand or walk, and I can't straighten my back at all - It takes a few weeks to recover from. This happens every 2-6 months - This is with me being very careful not to "hurt my back".

I'm just writing to see if anyone with chronic pain out there has these "acute" episodes as well. I am disabled by the chronic pain, but when these acute episodes happen, my legs just get pulled from out under me and I am in agony (unless I lie perfectly still).

Thanks - any ideas will be appreciated. I have had chronic pain (including these episodes) for four years (and have been unable to work) - had pretty well all conservative treatments/injections/therapy.



  • dilaurodilauro ConnecticutPosts: 9,877
    knows what you are talking about.

    I have just always referred to that as the occasional, sometimes more frequent flare outs that we can get between flare ups.

    To me, acute pain is brought on by something very sudden, ie hitting your thumb with a hammer, stepping on a nail,etc.

    The flare outs as how I coined it is when you stand up and you get a stabbing pain in your lower back and you cant move until that subsides. Or when you are getting in a care and all of a sudden one leg goes completely numb, followed by pins and needles. The description of those sometimes daily events can go on and on. And they can happen several times a day.

    But, also to me
    A flare up can last from 3 to 3 weeks
    where in a flare out lasts normally for a short period of time, perhaps minutes only.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Yes - I do have these kinds of things. Monday morning, at 0530, I had a twinge in my back. By 0630, when I got into my truck, I could barely walk. I got to work a few minutes later and sat in a chair, for most of the day. Yes - I did hobble around once or twice, but I could not lift a pencil.

    This is the way it works for me, no rhyme or reason for the action. It comes and goes, with a mind of its own.

    It has been a long time since I had this kind of issue, but it remains as possible, in the back of my mind, because I have had this pattern for almost 30 years.

    Take care!
  • Thanks for letting me know I'm not alone in limbo - ha-ha! Using your terminology, I guess it's a "flare-out" - It is acute, sudden onset. One difference however, is that it doesn't last a short time - I get that stab of pain (from the disc, I presume), and then it's like all my muscles/tendons/whatever in that area go into total "spasm" - So that I bend to one side - If you pushed me to straighten up I would scream in pain (I'm not a screamer, but - the pain is so bad, I feel like someone else is screaming - not under my volition). I think I must hit that nasty super painful spot on my disc, and then the muscles react. I usually am bent over for a few days, and then I gradually improve - takes a few weeks to get back to the baseline.

    I do also have "flare-ups" - where - usually it's because I've done too much or the weather or sometimes no reason at all - I just have more pain than usual - and I stay home and don't do much for a few days and then it dies down.

    So - thanks, Ron. I guess I'm kind of floundering right now - The 4th anniversary of when I hurt my back is coming up - with no change to my condition. Just don't know which direction to turn anymore - But I suppose that's for another post!
  • So if you used all conservative means now. What about surgery to correct it?
  • Mine is pretty frequent - 4 or 5 times a year - And I need a few weeks to recover from each episode - It is exactly as you describe - a twinge, and then gradually - you feel it and realise - I'm done. When it hits me, wherever I am, I just have to lie down (or get straight home to lie down), get the icepack and the meds - and I'm flat on my back for the next few days.

    It makes it very hard for me to commit to things - even I was helping out in Sunday school for 1 1/2 hours per week. At the last minute - my back can just go out - and I can't get to the class for two weeks after that. So I tell people - I'm not a reliable person anymore.

    Well - I guess I'm not alone! Thanks.
  • For some of us, surgery is not even considered. The issues are too severe. There is not much for a solution, in some cases. Mine is like that.

    It normally is 4 to 8 weeks, before it calms down again.

    I am as reliable as I can be and never make excuses. You can see the sweat rolling of my forehead, when I am walking and I have to throw my hip, to get the leg to fling forward, and move. The spasms are the worst, for the first 12 hours or so.
  • Nevertheless, I do feel a fusion would help me - it's movement and pressure that causes the pain (or the most of it) - so fusing would stop the movement/pressure. But - the negative discogram means they don't know where the pain generator is. I think the test was wrong, not me - I really feel my pain is discogenic at L4-L5. All my other discs are perfect and beautiful - when I get needles, they always say how easy it is because I have such a great spine. I don't know why the pain didn't show up on the discogram - It's the riddle of my life. I don't want to have another discogram (one surgeon offered this) because they can damage discs - and they inject healthy discs.

  • Well, you described my 'episodes' to a 'T' and that is good because I'm not having a great day--plus I am a fairly slow typer. Whenever I feel that pain which is more acute than my regular CP..that is usually when my normal upbeat personality takes a beatin', and I feel somewhat helpless. Especially frustrating when there are things that I need to get done and just can't without major pain. No, you are not alone.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    but I think I would have another discogram by someone different. And go from there. Or have you been offered a CT Myelogram with contrast?
    Personally, I don't like mysteries like that.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I guess there are a few of us Robin - I haven't really ever seen people post about this - these unpredictable, acute episodes. At least I now know it's something "real" - Dr's seem to pay no mind to this aspect of my chronic pain. But - yes - when it happens Robin, it is very hard - I just have to let things go - There's nothing I can do, about anything, for a couple of days until my back improves.

    Jim, after I had my discogram, I went home, simultaneously passed out and vomited, and smashed my face so hard into the bathroom floor, I knocked my front tooth out. My husband found an emergency dentist, who JAMMED my tooth back into my head. I had no additional medication for this - other than whatever they gave me for the discogram and a percocet they gave me on the way out. Anyone who's had a wisdom tooth out knows how painful it is - just imagine having it jammed back in a couple of hours later! But I didn't feel anything - until the next day. I think they drugged me too much for the discogram - or SOMETHING was wrong.

    I had the CAT Scan afterwards with the dye, which showed that the dye filled the bulge of the disc, but did not leak from the tear in the disc.

    But maybe you're right, Jim. Even if I just get them to do it at one or two levels - I found another Dr who said he would do it, without any sedatives (some Dr's do it this way). I don't like mysteries either - it's driven me crazy for two years.

    Thanks all, for the input.
  • It is so hit and miss it is very irritating. Since my doc upped my pain meds a couple months ago, it is much better and easier to control but it is still so frustrating. I went out Saturday and raked for about 20 minutes to get the leaves off my tulips that are coming up. I knew last year I raked later and it ripped the leaves and plants so I thought I'd be smart and do it as soon as they started coming out. Twenty lousy minutes and I have had a new burn in the middle of my back since. When my pain med wears off, the nerve pain hits like a sack of dead cats and then this new burn too. Hope it goes away soon. I think everyone here experiences similar things, you just get so used to it maybe you don't say that much about it? Just another annoyance in the grand scope of things... As far as fusion, be careful. I really had no option except fusion at the time, but it really didn't pan out very well for me. I would do it as a last, last, last resort. Best wishes, feel better soon - Marion
  • I hope your tulips are grateful for the pain they incurred, and pop up especially large and beautiful for you. We pay very dearly for each little "project" we engage in. Love your latest descriptor, Marion - "the nerve pain hits like a sack of dead cats" - ha-ha!! Laughter/humor is such good medicine! Thanks, Marion. You feel better too - and enjoy those tulips!
  • I love to garden and my flower garden is fabulous. A work in progress for about 20 years now, with walk thru walkways, ponds, all the bells and whistles. I just cannot keep up on it like I used to and it is so frustrating I could just bawl. O.K., I have bawled. Then my son says well, I'll do it for you which is sweet but "I" want to be the one doing it!!! Very irritating so I can relate to how you feel buddy.
  • I've never seen anyone else descibe episodes like this before- this is how my back pain started way back when I was 7 or 8 :( It would come and go... when it came, it was ON!! It was like that for about 25 years...

    Up until recently, I did not get them like that anymore... pretty much I "just" have constant, consistant pain without the going out on me issues.

    Lately however I'm getting them up around my mid back (bra line for the ladies) It creates a kind of grinding, needling like pain, sort of like someone with a rough concrete nubly knuckle is pressing it into the space between my vertebrae there... and it can lay me out for hours.

    Not sure what to tell you, but if you can, I'd definitely try getting a more up to date view of what's cooking back there, maybe there is something that can be done to help you.

    It sucks to be afraid to do something... and then find out it's too late anyway...
  • Hi Coyote, that pretty much sums it up for me. I would have an episode where my back would go out 4-5 times a year with at least one week to recover. Last June was the last episode I had and it didnt get better after one week it progressively got worse and worse. My GP sent me to a ortho-spine surgeon who had me get an MRI which showed 3 areas of concern L2-L3, L4- L5, and L5-S1. At this point my symptoms were pain shooting down both legs into my feet,and lower back felt like someone was stabbing me. I had a hard time standing, walking and sitting the only comfortable position was laying down.
    They started with epidural injections, I had 2 they wanted to do a 3rd but I didnt see a point as the other 2 didnt work. I also was doing PT but nothing was helping. After about 3 months my symptoms got so bad I could no longer get out of bed. I asked what was next and he said surgery would be best. At this point I said yes because my quality of life didnt exist and I wanted some of it back. I agreed to surgery and went to have a discogram done to figure out which level was giving me the most pain. The discogram is no fun, nothing like torture!!
    So on 1/26/2011 I had TLIF L4-L5 spinal fusion with rods and screws and they removed my disc and replaced it with a spacer. The moment I woke up I knew the pain was gone, wow what a relief!! I am now 7 weeks post-op.
    At week 5 post-op I started PT and that is when I started to feel all the pain again. I have to say it is not nearly as bad as it was before surgery, but it is there and the more I move the worse it is getting. I have pain shooting down both legs into my calfs, my legs feel like they are burning and I feel like I need to get up and move. I can only sleep for a couple of hours because of the pain. At the incision sites the pain is the worst, it feels like someone is pounding a hammer into both sides.
    I havent called my doctor yet I wanted to wait and see if it doesnt get better over the next week or so. I'm hoping it will get better as I do more and more PT. I'm still on the meds thank god!!
    This is my first post, but I have been here reading and learning for sometime now.
  • j.howie said:
    I hate to say it but I think I would have another discogram by someone different. And go from there. Or have you been offered a CT Myelogram with contrast?
    Personally, I don't like mysteries like that.
    Good luck, Jim
    I agree. 4 years of this and you are not going for more diagnostic testing? Why continue to suffer? Yes disc get injected and sometimes that causes problems. For the vast majority it doesn't.

    Get a completely different person in a different setting. See what the outcome is. I had 2 done like that and the information was different. It did correlate the main problem, but the 2nd one was much more detailed and highlighted something else to pay attention too.

    Just because the disc doesn't leak doesn't mean you are ok. Just because it bulges doesn't mean you aren't. It takes a skilled diagnostic person to do it right and get the answer.

    The first guy was an orthopedic surgeon who does all his own ESIs, tests, and surgery. The second guy is not a surgeon and is listed as a PM doc. However he spends all his time either doing diagnostics like discograms or doing ESI type shots. His approach was also with next to no medicine. I will say it was very painful. The answer was also very clear and detailed at all levels he tested. After the test he doped me up with morphine and sent me off for the CT Scan. He made sure the moment he had his info to get my pain under control and keep me comfortable. So the pain only lasts as long as it took to do the test.

    I never had lots of pain after either discogram. Some people complain they do. I went to work the next day after both of them.

    Like Jim I hate mysteries that put my life on hold. It's one thing if you know why. It drives me crazy not knowing. So I did those tests and the myelogram and whatever the heck they wanted to get an answer BEFORE they did any surgery.

    I'm almost 18 months out and I'm definitely a success story. It wasn't luck and it wasn't a fluke. Do something about it. Don't give up.
  • Hello Coyote,

    I can totally relate to those spasms.For me it was in the lower right side L4/L5 right next to my spine.It felt like all my back muscles from my shoulder blades to my hips were being pulled extremely tight to that one spot then tied into a knot.

    My spine would get contorted into the letter C and bend me over until I was only 4 ft tall I'm normally 6 ft.I would be locked in that position for 8 to 12 weeks at a time I also couldn't walk it was more like hobble having to swing my left foot forward in order to ambulate and then having to grab hold of something every few steps,the longer I stood the more intense the pain.

    After 4 years of pt, injections and ever increasing pain meds and various muscle relaxers at the end nothing worked, not even close.

    My last major spasm I managed to drive myself to the ER I parked in the handicapped parking closest to the entry doors, and feeling guilty about it,its funny how ones mind thinks when in severe pain.
    I managed to hobble about half way before collapsing on the parking lot into a twisted ball my whole body was quivering violently tears streaming down my face.
    When the ER staff came rushing out they thought I was having a heart attack.I managed to tell them in one word sentences what was wrong as they took me to the ER,they shot me up with a couple doses of dillaudid in my butt right their on the er floor.
    After what seemed like an eternity the pain came back down to the familiar 8 to 10 scale.

    I was a construction worker I've had numerous broken bones pulled muscles you name it,those were all bee stings compared to this.I will never forget for the rest of my life the pain I had that day.

    Anyway I ended up having alif l4/l5 did it fix me? no,dealing with a non-union at the momment,but on the other hand I've never had another spasm since and for that words can't describe how gratefull I am.

  • Hi there-

    19 years ago I had an anterior/posterior spinal fusion. I am fused from my hips to above my shoulder blades. I have only 6 vertebra that are not fused. I have constant pain every day, especially when the weather is humid...if the humidity is over 65% I am in agony. I have spinal stenosis from my arthritis and the bone growth is growing so rapidly that almost every nerve in my back is being pushed on and I have mostly pain everywhere but I have nasty flare ups where I can feel shooting pain inside my body and it is just unbearable! I am diagnosed with Spinal Stenosis and Degenerative Disk disease as well. It doesn't seem like Dr's know how to deal with people like me, who have such complex problems, except for labeling us as Chronic Pain sufferers and handing us drugs.

    I started seeing a pain management doctor about two years ago and had been getting Marcaine/ Kenalog injections every three weeks, sometimes I only got relief for five days and then it was back to square one. I have been diagnosed with Chronic Myofasial Pain too. I keep a pain journal and have only had 3 pain free days this year. I am 39 years old and sometimes getting out of bed to make coffee is an ordeal. I live alone and can only bring up one bag of groceries up my steps at a time. It's not a good way to live and very frustrating.

    Above my fusion I have a lot of wear and tear on my vertebra and a few bulging disks. I feel most days that someone is hitting me with a baseball bat and the sensation never goes away, unless I am asleep. I was reluctant to take any pain killers but now I take Vicodin but only 3 per day as I know they're addictive. I work full time and I sit at the computer all day long. By lunchtime I cannot feel anything below my hips...just numbness.

    I saw a neurologist for a while to do trigger point injections but they didn't help. I have bone pain not muscle pain so it was a waste of time. I am on FMLA at work and take almost one day a week off which stinks but when I can't even dress myself or get down my steps for the pain, it's the only thing I can do. Just rest. But that is depressing in itself, just laying around alone does not help and people really do not understand. Do I have to live like this forever?

    The Vicodin only takes the edge off that's it. I thought it would do more but my pain is deep and persistent. When I take the Vicodin it feels like I am taking Tylenol but I am afraid to take anything stronger as I do not want to get addicted and be a zombie. That is not a satisfying life for me as I am as active as I can be. I get Chiropractic care for the disks that can move and do a massage every week but it's only a temporary fix. I do light exercises at the gym, I stretch everyday and since it will be summer soon I joined the pool near me and try to swim everyday, if I can drag myself there!

    I had facet point injections in my neck and they gave me about a months relief so my PM Dr did a Radiowave Ablation right above my fusion and it cut my pain right there from a 10 to about a 8. This was hopeful, I thought to myself. When I went back to him on Tuesday I asked about getting the rest of my neck done like this and he said he was reluctant to do it. He said I am like a crumbling brick building, that once he fixes one area the others will have to be fixed again, so that was VERY discouraging.

    I feel your pain and hope that we only have good days ahead!
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