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When will this ever end???

jellyhalljjellyhall Posts: 4,373
edited 06/11/2012 - 8:54 AM in Chronic Pain

These spine problems can consume you!!!!

I just want to forget all about it and get back to my life and who I was.

No wonder people with these problems are prone to depression.
I think my family thought after my surgery, that I would be back to my old self, but I am not. They are fed up with me being like this. Well, do you know what, I am fed up with it too!!!

I still hope that one day I will be able to forget about my back, and get back to doing other things again.

I am so grateful to have a place to come and be 'real' about how I am feeling and not have to try to pretend that I am fine.

Hope that you are having a good day.

>:D< >:D< >:D<



  • dilaurodilauro ConnecticutPosts: 9,865
    Thats almost an impossible question to answer.

    For many spinal patients, the answer is YES and they have gone back and done just about everything they did in the past.

    But for many of us, its not the same. I've come to realize a long time ago, that my situation will never end. My spinal condition will be with me forever.

    But that is not really a bad thing, perhaps not what I would have liked or chosen, but I can deal with it. You know why? We have to! The other options are just not that attractive.

    We need to adjust, we need to bend, we need to find ways on how to make the most out of every day.

    Part of that is also communicating with our loved ones, that this is the way its going to be, maybe for a while, maybe for life. But that cant stop us.

    You always want to fight and fight hard for what you want. Its an uphill battle and sometimes it appears that we are all just climbing a mountain that is made up of 10 feet of wed mud!

    But just never stop, giving up would be like having that huge mountain of mud just come sliding down like a landslide and burying you with mud.
    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

  • We mustn't give up.

    Usually, I am a positive person, and am able to find the bright side to almost any situation.
    The last few days, things (particularly my spine!) have been getting me down.

    I have not given up hope of feeling 'normal' again, but perhaps I will have to get used to a new 'normal'.

    I was told before my fusion that I would always have back pain as there were other problems throughout my spine. I don't think that I really took on board what that meant, and am just starting to realise. I feel that my family feel like I am obsessing about my spine, but it is very hard not to think about it when there are almost constant symptoms from it.

    I must look on the positive side. I am very much better than before my lumbar fusion. My pain in very much reduced and I generally can manage my pain levels. I know that there are very many people here that are much worse than me.

    I need to adjust to how my life will be. At the moment I have not accepted this and am fighting it on an emotional level and feel that I have to try to hide it to protect my family. It is so wearing though, and I am so tired of this struggle.

    I haven't slept well for over 2 years and I think that is taking its toll on me.

    I have seen a neurosurgeon about my neck this week, and he wants to 'wait and watch'. Meanwhile I have to try to continue with my daily routine. It feels as though I have a ticking time bomb hanging over me. As I already have some cord compression, this condition is unlikely to go away and is likely to progress.

    Perhaps my visit to Pain Management will provide some relief and enable me to sleep properly. I wonder how many months I will have to wait for that appointment. I had to wait 8 months to see the neurosurgeon.

    Today is not a good day for me. Have you noticed?

    Thank you for being a listening ear to my frustrations. Hopefully, in a while, I will feel more positive again.

  • **Hugs for you***

    Just try to keep your chin up......lots of caring people here! :-)

    Feel Better!

  • Jellyhall, you will feel positive again, I'm constantly reminding myself that better days are ahead, when I'm having a bad day (which also happens to be today, too). Don't ever give up that hope and positivity!! We're all here to remind each other when we need it. Hope tomorrow is better for you!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own

  • Thanks Charlie :-) and Kelly too :-)

    Trouble is, keeping my chin up hurts!! ;)

  • Howdy!!!

    Given the "wait times" you guys have over there, getting "down" makes sense. I don't know how you do it.

    It takes a while to come to terms with being a spiney to include the pain that comes with it. We can't always control the cards dealt to us, so like playing cards, we have to play what we get.

    I use to be able to come on here for a couple of hours at a shot, now a few posts and I am done for a while. Changes to the negative, sure, but I just adjust again to make it work.

    Here's to hoping your days get better!! *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Sometimes I wonder that myself when I am having a bad day. Then a good day comes along and I feel better. Just wish there were more of the good days. But it does help to remind me that there ARE good days.

    It also helps to talk about it and this is why this forum is so great. Sometimes, a lot of the time??, the people in our lives just don't totally understand.

    I'm so glad we have each other!!! >:D<


    Spinal stenosis, spondolysis, spondolythesis, L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion with instrumentation and bone graft from hip, L1/S1 fusion with replacement disc put in and a nice bolt from my spine to my pelvis; PT, accupuncture, prolotherapy, many cortisone injections, 4 rhizotomies. Currently on tramadol.
    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Wow, eight months to see a neurosurgery....that is a long time. jeeeezzzz

  • I've not visited the forum much over the last couple of weeks. However, I saw this post from you and wanted to let you know that I totally understand what you mean.

    I could be saying exactly the same words as you right now.

    Does it ever stop? I thought it would, but recently two doctors have told me that it won't - that I'll have this pesky back pain for life now and it'll probably get worse as I get older. I've heard it many times before, but thought, after the fusion, it would be like starting again with a strengthened back, therefore, less pain.

    I've been fighting 'acceptance' of this back pain for the last 6 years. It is slowly sinking in that it is affecting so much of my daily life. I'm totally fed up, the same as you, that it seems to consume everything I do. I'm fed up with talking about it, taking medication, having to lie down when I don't want to (when I get home from work) etc. It's so intrusive and stops me doing what I really want to do.

    As for work. We both work in an educational environment and I really think that is the heart of my pain problems at the moment. I've now been given new duties of working with babies and toddlers ON THE FLOOR!! I do not understand why my managers would do this to me when they know I have back pain issues at the best of times (whilst at work). It sometimes feels like everyone is against me and it does pull me down. So I really know what you're going through right now.

    Your comment when someone said 'chin up' made me smile. But we just have to be positive on our 'good' days (mine are usually at the weekend when I have the luxury of time and can rest up properly and recouperate - just long enough to be able to be fit to go back to work on the Monday). It just seems like my circumstances now are exactly the same as they were before my fusion surgery - it all seems to have been a waste of time.

    Like you, I'm also a positive person, but having back pain on a daily basis can sap your strength to the point that sometimes it's easier just to 'give in' to it rather than to try and conquer it. For me personally, I suppose I've just got to try a little bit harder and push myself a little bit more.

    Are you seeing your Occupational Health doctor at work? If not, can you ask your manager to make a referral on your behalf? Perhaps your occy health unit can support you whilst at work IF the duties you are doing are sometimes making your back pain worse? I don't know, it was just a thought.

    I really hope you feel better soon and can get some pain relief and some sleep!!!!! I'm forever saying to my hubby that when I lay awake each night, at least my body is resting! Like it's the same as having good quality sleep - it's not, but at least saying it makes me feel a bit better. I'm amazed sometimes how our body just functions even when our sleep pattern has been disturbed for years.

    If you want to offload and have a good moan about things - you can always PM me. I know that it's difficult to express your feelings to your family when it just sounds like you could be moaning all the time. But it does help to let off steam occasionally.

    Let us know how you're getting on OK?

    You take care
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!

  • I can't believe that they have changed your job to working on the floor with babies and toddlers, knowing about your back problems. It does make you wonder what they are up to.

    My school is going to get an Occupational Health doctor involved to help them do a risk assessment on me. A couple of weeks ago I stepped between some boys. 2 boys were being aggressive with another boy and I was telling them to move away. I shouldn't have done it, but it was just my instinct. I wasn't hurt in any way, but they are worried.

    I saw my neurosurgeon last week and he said no way I should be on duty in the playground. He was amazed to hear that it was just outside the classroom, in the cloakroom. He told me I mustn't do that again! I knew that. I think the risk is because I have 2 disc compressing my cord and a heavy jolt could make the situation much more serious. He told me I mustn't do contact sports like Judo, Boxing, Rugby and football. He said breaking up fights counts as boxing!!

    Now I am waiting to see what Occupational Health will say. It is rather upsetting as it makes me feel like I am a problem to the school. I have worked there for over 10 years, so I hope they think I am worth it!!!

    I hope that you are having a good weekend.
    Where is this hot weather they are predicting?

    Take good care
    >:D< >:D< >:D<
  • No, it will never end. I don't mean to be Debbie Downer, but realistically, for most of us we'll be dealing with pain the rest of our lives.

    As you know, I have a job that requires lifting, bending, etc., all the things I probably shouldn't do. But I do it and am surprised that sometimes I don't come home in more pain. Other days, well, it's the recliner for me all night.

    I try as hard as I can to keep my mind off my spine and my pain until it kicks my butt and I have no choice but to deal with it - meds, stretches, relaxing, whatever it takes.

    My surgeon has never said I'll be in pain the rest of my life, in fact he's been quite positive about my future, but is never surprised when I go in with more pain and he has to mark the record that I'm taking my max dose of meds.

    I guess we do what we have to, like Ron said, and just go on with life as much as we can. You're doing well having OH come in and assess your situation. I now you were scared about going back to work and then to have this happen is really unthinkable. But perhaps they'll reassign you to something that suits your situation better. I'm sure hoping so.

    Take care, Jelly, I'm thinking about you and also realize that my spine problems are forever, it's just sometimes mind over matter to an extent. Keeping the mind rolling and trying not to have it roll in that direction.

  • HI Jelly,
    Sorry you're in a funk....sometimes that just happens but I hope you are feeling better today... We here on this site, know how you feel, and sympathize with you. Hell I feel sorry for myself on a daily basis, but life goes on, so I give myself 10 minutes in the morning to complain to myself, then get on with the day. Sometimes it's tv and the couch for the day... It's just the way it is for me, and many others, I'm sure...
    That change in jobs...what are they thinking?? Hopefully that will change for you, to something that won't make you miserable... Can't believe that happened to you...
    You know, it's too bad that everyone here is from around the world,,,think of the fun picnic we could have with everyone, doing what they can and meeting face to face...would be very cool, I think...
    Anyway, hope things are looking up for you and I'll keep you in my positive thoughts for the day!
    Take care, and keep us informed!
  • Well here we are again, a year later and our spine still irritates and bothers us, so I guess like you at some point I have to accept this is part of who I am. I can only make it the best it can ever be but it will never be perfect.

    However, our loved ones around us have to view it the same way and my situation is like yours, they don't! My husband was aggravated with me this morning when I told him my back hurt, (I am 12 days post op from fusion) he threw his ands up I'n the air and said well that's it another surgery failed and another waste of time!!

    It's really challenging because family members look at what they have missed, what sacrifices they are making and if they don't think you are better after all the treatments, injections and dr visits, medications, surgeries and your still not better.....what was it all for, well that's not everyones situation but that's how I see it and why we feel our loved ones don't understand what we are going through and I like you Jelly, say I am nit happy either, I am the one going through all the pain and I am just as frustrated!

    Please know Jelly you are not alone, we all understand you and I do hope that things will get better for you. Your family and co workers love you and just want you to be well and not in pain, they worry about you because they care about you.

    The surgeon was frank with me yesterday when he told me I needed realistic expectations about my back recovery, I will never be 100% and as long as it's not worse, it's a good day!! I know I have a long way to go in my recovery, but being patient and doing it right is hard because I feel guilty that I should be doing more with the family and to help around the house, it probably sets me back but what choice do we have when we have a family depending on us and things need done, how much time can you really take to yourself......I took a week of doing nothing and now I feel I need to step up.

    Jelly I guess I just want you to know that you are not isolated with your thoughts, pain, depression, anger, guilt.......vent away.......we get it.

    All of this aside I sure hope it's just a bad day and things get better and better and soon you'll be laughing :)

    An old friend,
    Sandra xx
  • Jelly,

    I think your normal in your thought process, as many of us wonder the same, and like you have bad days, then move onto the next day, hoping it gets better. Like you my surgeon has made it clear it will never get better, it is what it is, or the damage is done. Living with damaged nerves is very tough, just when you think you see a light, bam the pain comes. But we all have to get up make a go of it, someway, and do what we can.

    I understand the part about your family, and till they felt the pain, it is even more harder for them to understand. I had a family member recently pull a muscle in their back and acted like they were dying. They said "if this is what you feel daily you can have it". Of course I had sympathy for them, but as the muscle healed they soon forgot those words.

    For some of those reason I only elect SH and my doctors to discuss my condition. I figured for the most part the others can't relate so why bother kind of thing. Anyway hope your feeling better today.
  • I have been dealing with middle and lower back pain for over a year now. i've tried chiropractors which help if i go weekly and decompression which also help. but right now i'm in at school for a couple more weeks and not being able to go to the chiropractor weekly makes a huge difference. I've tried many different things to make the pain go away (some of them i'm not proud of at all) but like the others have said. this will get better eventually and tomorrow will be a brand new day! keep your head up..if you are a christian i would recommend reading the book of Job.
    have a good day
  • Jumping in late on this thread.... hadn't seen it previously.
    So sorry to read your post, yes you are a very positive person and I think that may make the down days harder for you. It's like being hit by a giant wave of reality and can be oh so overwhelming. It's hard to be brave & smile every day whilst in pain. A good positive attitude can really help but there will always be those days when's its just too much, too much too will it away, too much to pretend its not there, too much to fake it inside & out, and that's ok, no more then ok, its totally normal.

    I hope by now you are feeling a little better, both mentally & physically.

  • Sorry to hear how things are going right now for you. Do you wear a brace at school? I would be very over protective of my back especially worrying kids could take you down by accident. I hope he Occupational Dr. does a risk assessment and they should be grateful to have such a good worker in their school. I haven't had surgery but I get it when it comes to back issues day in and day out. Vent away and hope things do get better for you. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • So sorry to hear that you had to have a fusion.
    Hopefully it will be the answer to get you back on track with your life. You are so early on in your recovery. Please take good care of yourself, especially for the first month. My physio in the hospital after mine, very quickly realised that I was someone who wanted to get going, and she warned me strongly that in the first month, it would be very easy for someone like me to set my recovery right back and even mean that I wouldn't recover as I should. Well, that did make a difference to how careful I was, and I think that in my lumbar area, I have made a good recovery. Please be very careful Sandra - you are worth it!! >:D<

    Your message really did help. :D This place is great for making us feel in great company and because of that, somehow it helps to strengthen us to deal with our problems.

    Thank you friend >:D< >:D< >:D<

  • for the supportive message. :D

    I do feel more positive again, and am resolved to make the best of things and be as active and normal as possible.

    I have to keep telling myself that I have much less pain than before my lumbar fusion and decompression, so that must be good.

    My family have been great in many ways, especially soon after my fusion, but I think they are tired with all this and just want to get on with life, without having to think of my problems. So do I!!

    I need to learn to not mention my back on an everyday basis. The trouble is, people keep asking me how I am, and I tell them! It seems so wrong to say 'fine' when I am not, but I guess I will be able to get used to it.

    I am just trying to get my head around, and adapt to my new 'normal'. For so long I have believed that I was going to get back to my pre-back problem stage, but I am adjusting to the fact that it doesn't look like I will.

  • Thanks for your support.

    I have read some of Job just recently.
    My faith is what got me through my fusion surgery (I was very scared, but got amazing peace the week or so before my surgery. My husband was amazed at how calm I was, even as I was being wheeled off for surgery.)

    I have got peace again over the last few days by asking God and trusting Him to give me strength and look after me.

    Hope you are having a good day :-)

  • Thanks so much for your input and encouragement.

    I am feeling more positive now and am trying to get on with things, and not worry too much about the future but to wait and see what happens.

    Take care. How are you doing now?

    >:D< >:D< >:D<

  • Thanks, as usual, you have supported me through some difficult days. :-)

    I don't wear a brace at school. I expect that there will be along wait for the Occupational Health doctor to do the assessment (This is England after all!!).

    Hope that you are doing well Charry. >:D<

  • Hang in there Jelly, support **hugs** for ya!


  • for the support.

    How are you getting on?

    Take care :-)

  • I'm hanging in there, I suppose--my primary care physician prescribed me Tramadol for the time being until surgery, so it has helped a little bit in taking the edge off. Not a high dose, 50 mg tablets just as needed. Thanks for asking and great to hear from you! :-)

  • I am taking tramadol too, 325 mg but I cut them in half. They seem to only take the edge off like your dose.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Howdy Jelly,

    Just checking in. How are you doing? Keeping you in my thoughts woman!! *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • but I had an x-ray today, and the radiologist said she thought they would want me back to have more x-rays!!!

    I have no idea why, but it sounds rather worrying!

  • jellyhall said:
    but I had an x-ray today, and the radiologist said she thought they would want me back to have more x-rays!!!

    I have no idea why, but it sounds rather worrying!

    Try and stay positive. The pictures they got might not be clear enough is all. I got called back for an MRI redo once for my knee. There was one area that wasn't "good", and clear, so they redid that area.

    I'm glad you're more positive. =D>

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Sorry that you are still suffering; I was so hopeful for your recovery.

    It seems like everything stops when you are experiencing such intense pain and immobility. The days of making plans for the future are put to a scretching halt. That is very disheartening for me; I'm sure for you as well.

    As Ron mentioned in another thread, coming to a point of acceptance of the reality of our limitations is vital...though so incredibly difficult getting to that stage.

    Keep up the faith!!

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