Does time ever heal ? I have a herniated disc l5 s1 the pain is driving me nuts -- 1 year in

I feel like I'm banging my head against a brick wall, at the very beginning my pain presented in my right hip. The doctor was good at the time, he thought it was bursitis and treated with injections etc a long story short they didn't work but the pain was bearable. I am a nurse and was working 50 plus hours a week. The pain at this time was bareable. During Christmas 2016 my symptoms became much worse I could no longer walk due to the sharp pain in my hip and lower back, the pain radiated down through my groin and it was horrific ( worse than child birth) no position was comfortable and there was lots of pressure . I had MRI scan of my lumber which showed a bulge in the l5s1. At this point I thought I would get the help I needed. This was in January we ar now in July.

I am on oxy, nurproxin, lyrics, baclefen and diazepam to help with the pain, I think it dulls the pain a little but I am still in agony and can only walk with a frame for a few minutes at a time before the cramp gets me. The major pain is down my legs right down into my foot, pain that no words can describe. ( I forgot to mention I am now doubly incontinant.

I have just been to see the muscat consultant who has said that the bulge is not operable but it is most certainly the cause of the pain down my legs. She has also said that she dosnt think that it is the cause to my incontinance. She has not referred me to the pain clinic !! does anyone know what this is ??

I have an ot that comes out on a regular basis and have had an appointment come through from the incontinance team.

Just to complicate matters I have recently had new symptoms which include numb hands with pins and needles and weekends in my left arm, my neurologist has ordered a full neck back and brain MRI which I'm still waiting for the results. My next appointment with him is in October.

I am so frustrated as I am trying so hard to be mobile, I do little exercise in the morning but by lunch the pain is so bad I have to lie down, lowing down does relive some of the pain but then when I get back up it is so so painfull in my legs , my thighs and lower back. I'm so don't know what to do for the best .. rest: walk ??

The consultant. Couldn't answer the question she just said you know your own body.

All I want is to get better any body have any s advice ???

Thank you in advance

19 Replies

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  • Hello 9711katie

    I followed your last post although I didn't comment.So many chronic pain patients never get diagnosis although you seem closer than most.

    Your tests should be back with your GP and he should be able to tll you what the report says. You shouldn't have to wait til October.

    You mentioned pain cliic. I am there umber one fan. I know many have had unpleasant experiences but you must get a GP referral and go with open mid. There is no magic cure or pill sadly. My husband broke his back over 30 years ago and still prays for that pill.

    If you can get an appointment, and there may be a wait, keep a pain diary for about a week beforehand. They will look at meds you have taken, how, if at all, they have worked. Offer you alternative therapies and tons of advice. One thing they always say is pain managemet. This is what it says..teaching you how o manage your pain. Coping, pacing....very important....exercises long term and maybe psychologist. Thinks that's the one.

    Hard a it is your whole life has changed. You can no longer do what you did pre pain. It is like a bereavement and you go through the same process. Anger, blame, sadness, grief, denial and maybe one day acceptance. That is the hardest but we always say what you used to do is past. Leave it there.

    Sorry this is long winded ut hope you can glean something from it

    Gentle hugs

    x

  • Hi Katie.

    Haven't time to read all your posts through now properly, but just briefly:

    This is really bad. I agree , you should not have to wait til October for MRI results. Two options: phone Consultant's secretary and ask for sooner appointment in clinic or phone call back from the Neurologist or letter explaining results. 2) See GP, ask if they had results/letter through yet from Neurologist.

    The Diazepam should help as a muscle relaxant. Problem is - not good idea to take them for more than two or three days at a time. They lose effect - and become addictive after 7 days continuous use (according to my former GP who gave me 7 per month).

    Do you know of a good private physiotherapist or sports physiotherapist in your area?

    If this were me then I would keep going back to or phoning GP regarding this pain. Something needs to be done.

    As you are a nurse, have you had any help or advice from Staff Health? If not, would you consider phoning them?

    When are you seeing Continence Nurse. Some have bad experience of pain clinics some good. Depends which area you are in and how busy they are I think. Following change of staff at ours, not much help to me. I'm managing now though. You need immediate help from someone. Hope you get it soon love.

    Thinking of you. XXX XXXX

    🐥

  • Thank you for your reply, I have now a appointment with the pain clinic so that good news ( I hope) I have now also been referred to MH services. I don't understand what I have done so wrong to get this much pain. All I get from the GP is more medication which I hate taking and like the diazepam will only take if I really need too, that is one advantage of being a nurse .. although sometimes it dosnt help because you know too much .

    I'm in a rut again today, guilt etc as I feel a burden on my young family and can honestly say I know they would have a better life with out me.

    Thanks for you advise though x

  • Hi again Katie. You haven't done anything wrong to cause this pain. Please let go of the guilt and all negative thoughts. You know it causes stress and makes pain and suffering worse. As you say, being a nurse can be helpful. but also, you can know too much (sometimes things best not to think about or dwell on). You have absolutely nothing to feel guilty about. Your family would be devastated without you , you may feel like a 'burden' but you are not. Ask them! Talk, apologise, get it out in the open if you think that's a good idea? Maybe, - maybe not. Then you can all move forward, perhaps with a plan of how every one can help? Might help with the way you are feeling?

    It is so wrong that you are left in this pain. When is the pain clinic appointment? The Anaesthetist should be able to see the MRI scan pictures and the report on the computer.

    Where exactly did you have the injection? Is there any possibility of infection at the site of it? Did the incontinence start since then? My brother got Transverse Myelitis following infection at the site of his spinal anaesthetic injection for hip replacement surgery.

    Are you able to eat well and drink plenty of water with all your pain. You know how important it is to keep bowel function at best. Constipation caused by pain medication will also exacerbate pain, put pressure on the circulation and spine.

    Hope you have a better day today.

    X

    🐥

    ps

    Don't know what MH services means?

  • Hi again Katie.

    If you Google Transverse Myelitis there is a lot of helpful information. The T M society has good info and you can email to get in touch. If you wish, you can give a phone number and someone will call you. It might be good to talk with someone who has suffered same symptoms as you are having now, even if this is not your diagnosis.

    There are a few websites and list of symptoms.

    Hope this helps.

    X🐥

  • Hi I just read your blog .I have some of the symptoms that you mention which I talked about in earlier blogs.I am having awful groin pain I have been told that its referred pain from my back and spine.Lately it has got worse and is affecting every thing I do.I have been told from mri scan before and ultra sound I have a hernia and this is not causing my pain as hernia is deep down in my groin and has fat in it so it will never be a danger to my life.My own gp saw how much pain I was in after having physio.Apparently she is not pleased as consultant from yc hasn't even sent any thing to tell them this.She said she is going to ring him then she will ring me.I'm so sorry with every thing that has happened to you.I have appt Sept with MSK Team at Leyland.I am waiting also for appt if capability to work assessment.You know what I feel like saying to them.I have pain in my neck going down my spine numbness lumber spine left buttock and down left leg pain .I have Bursitis in both shoulders with one of them told frozen Shoulder.Had injections in both shoulders.I have awfull pain in left groin which is getting worse.I had a accident September last year I fell through a floor board small fracture left wrist.I had mri which showed I had damaged 3 discs in my lumbar spine and my nerve roots are impinging on my spine.You have all my mri report scans spoke to my go .After my fall I worked for 3 months then I had to give it up through I'll health.I have worked all my life .I have a accident which is affecting me still .Why do I have to come here when you have all my evidence.And people like me its obvious we can't work why put us through all this.I got a bit carried away then Soz. I think next week you should go back to your go and say look I am not getting any where my pain is worse.I want you to go through every scan or seen specialists .Maybe some thing has been missed.Can you help me.If I was in your shoes this is what I would do . Only you know your body and its obviously telling you something is wrong??????.Good luck let me know how you get on especially if you take my advice .

  • Thank you for your reply and I have to say totally agree on the essesment part, they are all gits waisting money.

    I have booked an appointment g with my gp so will keep you posted x

    Thank you

  • I have exact same as you but I'm having the op but I have fibromyalgia now due to mum back look into it I'm on Facebook if you want more info Samantha slater or nannyslater41@gmail.com

  • Hi Katie, has anyone suggested pudenial nerve impingement re the incontinence?

  • Hi , no I have never heard of it. I will look it up before my urology appointment Wednesday.

    I can't stand it I'm getting a uti everything the antibiotics are finished from the last .

    I on it now

    Thank you

  • It's more knowledge to arm yourself with when you see your Drs. Good luck and best wishes.

  • If the disc is bulging, would it not be worth having removed and a spacer put in. I had this done around 20 years ago as they could not push the disc back in and the nerves had become trapped by the bulging. Worth asking. Pain clinic I'm my opinion is about as much us as a chocolate fire guard. They are a big fan of trammadol and you don't want that stuff. The doctor there said she could do nothing for me. I honestly felt I had more knowledge than they did.

  • I had the same experience with a pain clinic in January, I had a referral and dudnt really know who they were or what is was , they told me my go was trying to kill me ( exact words) and that my pain was made up ! I left deflated and very pariniod I then refused to go back.

    I have had my MRI which concludes the bulge at L5s1 with nerves being compressed, degeneration of a few more disks etc and a tear in the anulus but although this confirms the pain they say it won't effect my incontinance.

    I'm still waiting on another MRI ordered by nurology as I had been struggling over the past year he found I was severely anemic / not helping matters and god knows why it haddent been picked up before. He suspects problems further up or in the brain.

    I personally think the other symptom I,e numb hand etc is from the way I have to hold myself or the amount of medication the go keeps chucking st me.

    Sorry for the rant, thanks for your reply

  • Hi Zelda I have only just read your post.Mr I shows 3 mild disc bulges with multiple nerve root impingement at three levels.I didn't know they can remove discs.What is a spacer??????? lol Chrishawr

  • Hi

    It's just a metal disk (usually titanium) that they put in place of the disc before the fuse. It helps keep the height the same. Less painful than bulging discs as long as they do not trap a nerve.

    ZELDA007

  • Hi I am to scared to even consider surgery.Msk Dr has revered me to pain clinic to consider injections. I have damaged 3 discs lumbar spine and nerve root impingement 3 levels.Dr put me on gaberpetin but my face swelled.now I am on Pregabalin 1bd.So far no problems .Still in loads of pain.I also have Bursitis both Shoulders have had injections not working Dr referring me for ultrasound.I fell through a floor board last year.I also had small fracture left wrist..February this year I had to give my job up.I couldn't cope with pain.Awaiting assessment by uc sent my form to them June 2017. Lol Chris x

  • Hello 9711katie, I live in the states and I am not an expert or doctor for giving medical advice on matters such as yours. However, my problem was almost like yours which I lived with with for over 13 plus years. It was on a Sunday morning when I woke up and did not have the ability to walk. This experience was a result of a herniated disc at L5, bulging at L3 and L4. Prior to this, my symptoms consisted of all your symptoms tingling, sciatic pain down left and right legs, numbness in both feet, and a feeling of having to use the restroom all the time. The only relief in the prior days were pain killers and muscle relaxers. Using medication is only a band aid, this use only takes away pain and reduces swelling in the back muscles for a temporary amount of time. So, the only resolution to my problem was immediate surgery because of not having the ability to walk on that given Sunday morning.

    The problem with herniated and bulging discs is that it applies pressure against the spinal chord that creates all the pain, tingling, and muscle spasms. An operation was immediate, which called for a laminectomy:

    Low back pain can range from mild, dull, annoying pain, to persistent, severe, and disabling pain. Pain in the lower back can restrict mobility and interfere with normal functioning. Laminectomy may be performed to relieve pressure on the spinal nerves, treat a disc problem or remove a tumor from the spine.

    One common reason for undergoing a laminectomy is a herniated disc in the spine. A disc may be displaced or damaged because of injury or wear and tear. When the disc presses on the spinal nerves, this causes pain, and sometimes numbness or weakness. The numbness or weakness will be felt in the body part where the nerve is involved, often in the legs. The most common symptom of a herniated disc is sciatica (generally, a sharp, shooting pain along the sciatic nerve called radiculopathy, extending from the buttocks to the thigh and down the back of the leg).

    This is what you are experiencing, if the problem is not taken care of, further complications can result post operation. In my case, my bladder and bowels do not function normal. Procedures are now used in being able to void as well as discharging bowel matter. Consider this a matter of emergency and being proactive in getting the problem resolved. Do not wait any longer, find a doctor who will perform the necessary procedures. Take care!

  • Thank you

    I do fear the worst but at the same time know that if both legs go numb then I will be out of pain.

    I actually wish some days that I could cut my legs off.

    I will do my best but here in the uk it seems no one cares enough xx

  • katie, if the legs go numb, you will still fill the pain in your sciatic nerves. The l 3 disc controls most everything from the waste down. In this case not having anything done to resolve the issue will complicate matters as explained in my scenario. This includes bladder control, if the nerves to the bladder become damaged, you will definitely have some problems in being able to urinate. Same with the bowels. You need to find a doctor who will take you under their wing and get the problem resolved.

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