Crippling lower back pain when getting up from seated or bending - 2 years after L5/S1 microdiscectomy

Crippling lower back pain when getting up from seated or bending - 2 years after L5/S1 microdiscectomy

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urbanhim
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Crippling lower back pain when getting up from seated or bending - 2 years after L5/S1 microdiscectomy

Hi, I am a new member, and I have been searching this site, and Google for the past 2 months to try and find someone with similar symptoms to me, but to no avail. If I am making a duplicate post, then I do apologise, please do send me links to the discussion as at the moment, I really do feel like I am the only one in world suffering from this problem. Firstly, let me introduce myself;

I am male, 37 years of age, I'm 6'3" and I have scoliosis and crohns disease. I am an office worker, who sits at a desk and the heaviest thing I lift is my pen!
I have suffered from back pain all my life, but over the past 5 years it has got progressively worse. 3 years ago I spent over £1000 on over 30 sessions at a Chiropractor for my lower back pain, these sessions then led me to have severe sciatica in my right leg. During February 2011 I was admitted to hospital on two occasions for severe pain whereby I could not move a single millimetre without screaming in agony, I was put on a morphine drip and given all the painkillers they could safely give me. I had an MRI which confirmed I had a herniated disc at L5/S1 level, and I was referred to a neurosurgeon. He refused to operate until he was 100% certain that my back would not correct itself, I had to put up with this pain for six weeks (I was laid up in bed pretty much this whole time) eventually after a second MRI when my condition got so severe that I was close to be hospitalised for pain management I was given an urgent L5/S1 microdiscectomy the very next day after seeing him, this was early March 2011.

When I woke from the surgery, for the first time for nearly two months I was pain free. I was so happy. I was home after two nights in hospital, and was walking 10-30 minutes every day for the next 8 weeks before returning to work. For the nearly two years I was the best I had ever been, yeah I had numb right leg and the occasional nerve pain in right calf, but it was short, sharp and sudden so it although it would give me a fright, it was gone and appeared less frequent.

I apologise for babbling, but I'm really trying to build picture here in the hope that someone can help…

So now onto where I am now… I moved house in October last year, and I feel that a combination of bad luck and my own stupidity might be the cause of my current problem. I was doing lots of heavy lifting for the move, including trying to push a heavy wardrobe up the stairs. Also, whilst running down the stairs in the middle of the night to get milk for my crying new born baby, I misjudged the stairs and missed the bottom step and came down with a thud which sent heavy vibrations up my spine. At the time, both the lifting and the stair incident didn’t cause me any problems. The next day though I bent down to load the dishwasher and BANG!! It was like lightening going off in my lower back and it crippled me, I slowly got up but could hardly move, the pain was so bad I eventually got into bed and laid flat for the rest of the day. The next day I woke and I was fine. Now this is where I am at…

If I bend, twist or get up from sitting down I feel like I have been hit with a cattle prod on my lower back, its like lightening going through my whole body and I have to hold onto something and stop myself from moving until it has calmed down. When it calms down I have to slowly get in bed and lay flat, after hours of laying flat or even on my side, say 5 or 6 hours, I am ok again. Until I bend, twist or get up from sitting.

I had another MRI a few months back and it showed nothing abnormal. I have normal levels of scar tissue but I do have a tear in my disc which specialist believes when I bend, jam comes out of the doughnut (the disc) and aggravates a nerve and causes the pain - he therefore sent me to a pain specialist.

The pain doctor said that he believe this has happened, and since then my joints have locked up and I am in a vicious circle. Also, because I have no sciatica pain he said its not likely to be nerve pain! I explained it was like lightening which shot through my whole body but he said he needed to rule out the joints so I had facet joint injections 10 weeks ago, this done nothing - so I went back and had nerve root injection near the disc I had the L5/S1 microdiscectomy on - This was 5 weeks ago and again, its done absolutely nothing, I'm getting worse if anything.

My problem is the pain is not constant, for instance as I write this I'm in no pain whatsoever, but I have to do everything with extra special care, I cannot bend, I cannot twist and every time I get up from being seated its scares the living daylights out of me, as depending on the type of seat or how long I have been seated, I will be struck by the pain lightening and it genuinely cripples me. I've found that chairs that are padded well and keep my back upright are the better ones for me, any that are too firm (such as plastic hospital waiting room chairs) or too soft such as settee's or sofas, when I stand I am crippled with pain.

I really am at the end of my tether, my doctors have given me amitriptylene which I take every night for the pain, it does nothing to help whatsoever. The pain when it comes is so severe its in my very lower back, feels like its right in my tailbone, it is definitely nerve pain as it shoots through my whole body like lightening, once it dies down after about 10 seconds of being motionless, I can move ever so slightly and get in bed, I will then be pain free as soon as I lie down, assuming I do not twist whilst in bed. (log roll in and out of bed). At the moment, I feel disabled, I cannot do anything other than walk on egg shells, I cannot lift, I cannot move very well, I cannot function normally and I have no idea what to do.

I'm really hoping someone on here can offer some advice, some guidance, some hope… anything. Its not getting better on its own, no pain killers or meds or injections are touching it. I'm thinking maybe an L5/S1 fusion might work but I don't want to plant this seed in my doctors mind if its not going to cure my problem. Because I have no sciatica pain, its difficult convincing doctors its nerve pain, but it is, I know it is from the severity off it. Also, I have scoliosis which is quite bad, I'm not sure how successful a fusion is with curvature of the spine.

I'm thinking maybe its degenerative disc disease, I don’t know!? Also, the MRI showed nothing, is there anything else that might show something? Maybe an X-ray!?

I would be extremely grateful for any help anyone can give. I thank you for your time, and I am sorry for the long post.

Liz
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welcome to spine-health

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jacks
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Joined: 12/11/2012 - 4:32am
Hi

Your story is similar to mine. I had the microdiscectomy and then re-herniated, I never had sciatica etc and had good days and awful days. After physio pain killers, nerve blocks etc, my surgeon did a fusion - It was the worse decision of my life. I have unfortunately had nerve damage following the fusion and am in a far worse place now than before. I know how frustrating pain meds, physio etc is and it seems never ending but if there is any hope of this settling without surgery I would advise taking it. You may well be correct in feeling it is nerve pain as you do not always get the associated sciatic pain.
I hope things settle without the need for more surgery and wish you very good luck

Jackie

urbanhim
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Joined: 04/16/2013 - 10:12am
Thank you Jackie, I am sorry

Thank you Jackie, I am sorry you are suffering, pardon the pun but I feel your pain! I have heard more horror stories than good when it comes to spinal fusion, and I do see it as very last resort! I have heard about OPIOID patches which are meant to be good for pain, have you tried these? I have not yet, trying to convince my doctor that I should try them is next on my agenda!

Emma_LC
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Joined: 04/16/2013 - 1:06pm
urbanhim I am similar!

I am 37, female, slim, 6ft 1, S1/L5 lightening/cattleprod spasms but with random sciatica.

Having read your history and present, have you had physio advice on how to move correctly? Nobody should ever twist in their movements, never bend your back in flexion (forward), try and keep neutral spine and always bend your knees to get lower. Best sitting position is with knees lower than hips and use thigh muscles to help elevate self from sitting rather than maybe using a rocking momentum to lever up? It's good that you log roll up from bed - what's your bed firmness and height like for your height? The best thing I EVER did was pay out for the BEST bed I could get, a silent night memory foam with lumbar support king divan.

Amitryptilline takes about 6 wks to kick into your system for nerve pain. It works with some people but jot others. Ask your doctor about Gabopentin, I know people who've had good results from this. Have you tried a TENS machine, heat application and deep tissue massage? - These assist me.

I know it's going to sound patronising, and I don't mean to, but through similar experiences it took me a while to 'train' myself not to tense up when spasming, you've got to talk yourself through the spasms as they're happening, almost as though you are counselling your brain not to panic....because that's aggravating the moment - you spasm and your brain goes 'argh!' and as a result you are locking up and not being able to move.... This happened to me with the god awful cattleprodding/electric whip. I got into a habit of talking to myself in my head "It's OK....chill, you're going to be fine...you're going to move very slowly and stand up, unbend your knees, slowly uncurl from the body cramp...". Deep breathing helps to get oxygen where it's needed in these crippling moments....

I highly recommend you see a spinal physio for movement analysis and rehab exercises. I have cycles of recommended exercises I have done daily since diagnosis in 2007.... Never take no pain periods for granted, always do your back exercises, always think about 'how' you are moving to complete an action.

Sit on extra cushions on the sofa to keep knees below hips, a doughnut cushion may help you. Swimming is good. Walking is good. I notice you said you have a newborn - A friend with lumbar probs is a new mother and got this back supporting wedge thing to carry her baby round with so as not to throw her L5 out..... Try not to put your back into flexion at work.... Could they provide you with a better chair at your desk? A lumbar support cushion?

I KNOW it is incredibly hard to cope with. There is SO much support on this site. You need to retrain yourself how to move correctly and seek physiotherapy advice... It only takes 1000 repititions of one movement for your brain to remember and keep in its memory bank. You are trapped in a vicious cycle because your brain has remembered your fear, panic and rigidity as a response to the spasms......with patience, hope and sheer perseverance, you CAN get out of this loop.... You WILL get out of this loop, you are in control, not your lower back.

I wish you a turn for the better. Kind regards, Emma.

urbanhim
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Joined: 04/16/2013 - 10:12am
Thank you...

Firstly Emma, I must thank you for your response! I really do appreciate all advice given, and some of what you have said makes me feel very re-assured. You absolutely correct too in what you say about the fear making me lock-up, its so true... At the mere thought of my back going, I do get tense, I do lock up and it feels like my back is just made of glass, this doesnt help as I will then get back ache, even before the nerve cattleprod hits me!

I do have a Grahl Duo chair at work, after seeing an Occupational Therapist from Unum on my return to work, this is the only chair I can sit in without getting any pain - I can sit in this all day and i'm fine, I have bought one for home too for when i'm at the computer (like now) and although exactly the same chair, I dont have the same luck, but then again I do not have a proper desk which I guess I need to invest in. My desk at work has been raised, which means now i'm seated in the correct position.

I am seeing a physiotherapist, had one session so far, just given me some bend backwards exercises, they are going to teach me the Mackenzie something or other, whatever that means I don't know, but I will settle for anything if it helps.

My last physio though and the chiro I fear put me in this situation anyway, as they put some machine on my back which pummelled my spine and after that I had the sciatica which led to surgery. I am very fearful of someone who does not have a medical background or who does not know my cicrumstance causing me more grief.

As for bed I have a firm mattress with a 3" memory foam mattress topper on it, this is really comfortable, and I hope correct. I was tempted for a Tempur mattress but the fact you kinda sink into them makes it more difficult for me to turn over in bed, so I do end up twisting more which may cause me more discomfort.

I'm seeing my pain specialist again on the 13th May, he did mention I may be put forward for laser nerve treatment, i'd be up for anything at the moment if it gets rid of this pain.

I will speak to him about Gabopentin too, thanks for this. I will also ask about OPIOID patches which I believe are meant to be good too. As for tens machine, this is something I want to speak to consultant about, funnily enough I have a decorator doing some painting at my home at the moment (I cant do anything in my state), and he broke his back some years ago and has a tens machine actually surgically implanted in his spine, this sounds crazy to me but i'm up for trying that too!

Thanks once again, I really appreciate you taking your time to respond!

Emma_LC
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Physio

I'm only glad I helped with a little reassurance. Listen to your physio, but also listen to your body, if you don't feel you can fulfil the full range of movement for an exercise, don't push it first time, work within your limitations at your own pace.

I totally agree regarding the Temper mattress - I trialled one and found it very difficult to manoeuvre on.

Yesterday I was so stiff after work, I had to walk (shuffle) around the city for an hour before I could get the bus home. I had to stand on the bus home because I just knew I would spasm trying to get up at my stop. Got home. Took 15mins to get on my bed. Couldn't even get down to try and lie. Managed to sit bolstered upright with pile of pillows under my knees. TENS on for an hour and I joined this site, whilst my muscles slowly unlocked. Managed to get up and stand under blazing hot shower for a blissful half hour, then microwaved a wheat pack and got into bed. Managed some very gentle stretching, enough to get me on my side with a huge floor cushion between my upper legs, think I actually fell asleep with the TENS running! Very tender today with mild stiffness in comparison to yesterday's total exacerbation. I usually do physio prescribed dynamic stretching everyday, but not following an acute episode.

You've mentioned twisting in bed to change position....stop thinking 'twisting' and instead think 'controlled mindful movement'. What the mind is trained to think, the body will follow, is, the mind can, over time assist in mastering the body ( it's taken me a LONG time to figure this out, nearly 3 years to get over a rational-irrational fear of ice!).

I have a friend with fibromyalgia and Crohn's. She finds some relief with meditation because she says any physical stress worsen's her Chrohn's.

I recently came off amitrypilline because it was making me very absent minded at work ( not good!), and didn't,t touch the nerve pain. However, it did give me a decent night's sleep, which I'm battling with at the moment! I'm considering asking my doc to prescribe me low dose diazepam to help with sleep as it did used to work well for me as a muscle relaxant.

Anyway, I hope you find some relief soon. Never give up hope and try to master your fear. Have a good browse around this site, there is so much good info! Take care, kind regards, Emma.

urbanhim
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Update

Well, after numerous trips to hospital and numerous physio sessions, I am a little better but standing up from sitting or bending forwards can trigger excruciating pain, as too can standing for long periods of time (30 mins or more). A blood test showed I have super low Vitamin D levels so I am on Vit D tablets (for life) now. Because of this I have also had my Sacroiliac Joints MRI'd this weekend so will wait for results. I don't believe this is the cause of my pain as it feels like nerve pain, but shall wait and see!

My Pain Management specialist did say that an orthopedic surgeon would want to perform a spinal fusion on me, but he himself has stats that show people in a similar situation as me are no better off in a years time after surgery to those that did not have it. Therefore he believes the right route for me is pain management as apposed to further surgery! I'll see how I get on, because surgery offers no guarantee that it will cure my pain anyway, i'm keen to avoid this if I can. So far I can get to and from work, and I guess that is the main priority. I just wish I could explain to the medical professionals that I have seen how bad the pain is when it comes, its not like normal nerve pain that I had in my back before I had microdisctomy, this feels 100 x worse, and really goes into the core of my spine and makes me paralysed until after 5-10 seconds it settles down and I need to hobble to bed and lay flat for a few hours which then seems to reset it! Very weird and very hard to get diagnosed!

benjaminahelvie
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Joined: 06/17/2014 - 10:10am
Another update?

I just began experiencing all of the mentioned symptoms within the last 48 hours, but have no history of back pains or surgery. I'm hoping it's temporary. Do you have any updates or thoughts to offer me hope? Smile

sandi
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Hello Benjamina, welcome