Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

What have you learned and how is it helping you now ?

JohnJJohn Posts: 964
edited 06/11/2012 - 8:44 AM in Matters of the Heart
I am now more aware of what I have learned here and smile at some of the thoughts and attempts I made without the skill or knowledge to make the best of them. We sometimes say if I knew then what we know now, how things would have been different.

My help and support should have come sooner on my journey before those traits and behaviours developed.

What have you learned and how is it helping you now.



  • dilaurodilauro ConnecticutPosts: 9,865
    If I knew back in the early 1970's what I know now, I probably would have avoided a couple of surgeries and for sure eliminate so many flare ups.

    Besides just the technical/medical information that I have gained from this site, the support from other members has been so rewarding.

    For me, what has helped me the most is reading posts regarding different member problems and then trying to offer some level of advice. If I can just help one person deal with their spinal problems now and in the future, then I feel satisfied.

    Besides that, just being able to communicate with others on this site, especially those who have been through a lot and have a better understanding of all what this is about.

    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
  • That there is still so much more TO learn, as of yet there are many paths of thought yet to discover, and to find "new" is its own reward.
    We are progressing as a site, a global family, and as a culture of shared knowledge no?
    Every generation builds on the groundwork of the last, so the solutions(if we can) the the warm ungerminated seeds of hope as yet burst from the fertile ground we water with tears and emotional wrack, and the little lights we each carry, which, in turn, collectively begin to light the night, which one at a time gather and coalesce into a brighter beacon for those as yet on the journey.

    We build a viable and self sustaning fire, a self sustaining community built of the common and shared knowledge each one of us carrys.

    that is what Ive learned from here,

    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    I've learned that you always have something good to say. Even though sometimes I have a hard time keeping up with your intelligence and intellectual skills. Keep it up I love reading your posts!
    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!

  • Apart from a whole lot about spine problems and that I could manage to face fusion surgery,

    I've also learned that you can build really good relationships with people across the other side of the world, who you have never met, just through shared pain and experiences. :D
  • I've been on this site for about a month now and I've learned how kind strangers can be. And also, it is comforting to know that all that I'm going through isn't so unique after all (not that I wish this on any of you!). I feel less alone.

    This community here is very warm, friendly, and comforting to read, even if I'm not conversing.
  • Great thread! Thanks for starting it. I have learned that I'm not alone with this battle. There are too many of us dealing with all kinds of spine problems and pain daily. The good news is that when I found this site/forums it gave me place to relate,care, share, find answers, ask questions, and that I'm normal, it's ok to feel like I do and now I feel a special bond with other spineys that have become my friends. My family and friends didn't understand because I was the first one to become a spine patient. Sadly, some of my family and friends have joined this journey over the years but luckily they can talk to me and I can lead them to spine health.

    Another thing I have learned on a more personal level is that I had years and years of pain and problems that I always blamed on so many other things, never thought about it being my back because I didn't even know those symptoms could be my back at the time! I never had a dr, specialist, or anyone ever say maybe all my little problems might actually be related, one problem with many symptoms combined. It started years ago(early 90's, actually about 1993 when we think back) with my feet and legs hurting and I'd get cortizone shots thinking arthritis that runs in my family, When my feet/legs hurt really bad I thought it was being on my feet working at school with kids all day, arthritis like my mom and her family, the ligaments in my feet so I tried shoes of all sorts, celebrex and other meds both over counter and prescribed, exercises,ointments,heat,ice and orthos gave me shots in my feet too! Then I had problems just to stand or sit with pain,not just standing and walking, but to walk would hurt so bad each day was a challenge but I would do it and come home to bed and heat,etc. Then my groin pain kicked in and with all that only 2 times did my back hurt bad which was when I thought I had done too much lifting,cleaning,etc. and one time they said it was infection. Then I had bladder problems which seems to go with women at menopause/after kids,etc. so my gynocologist gave me meds for that. I would go to my primary and he would see me walk with a gait or hear my problems and get me into a specialist for any problem I had. But he nor any other dr put it all together.

    Then we had 3 hurricanes hit us in 2004 and through the pain I helped deliver water,food, supplies, stand all day to make sandwiches,etc to help in our community and then months of fixing our home from damage inside and out....that alone would give anyone pain, right? But 10/2005 was when it all hit at once, excruciating pain in any position. I couldn't walk, sit, lay down, cauda equina(I never heard of that before!) and after a useless trip to emergency my dr took one look, told me it might be my back and requested an mri, then he told me I needed surgery but no dr here could do it, so then we had to search to find a dr to see me. The good dr. we found did surgery asap. The first surgery was a success for a short time but then I continued to have severe pain until excruciating pain returned and my dr did my fusion in 2008. Yea!

    Another thing- I have also learned to not take symptoms of my family or myself for granted, ask questions,ask our primary if any/all symptoms can be related, ask for tests and treatments, risks, never assume it is an inherited disease,disorder!

    I tell everyone I meet that mentions their feet and/or legs hurt that it might be their back, please get it checked out!

    I am thankful for spine health! I have learned so much from everyone here! It's also a great place to vent where others listen and help you!

    Thanks friends!

  • I am with you in not attributing my various symptoms to my back for years.

    Since being a teenager I couldn't stand for long without being in pain, and even would sit on the floor if there wasn't a chair available. My children remember me lying on the floor to relieve my back when they were young. I suffered with sciatica and cramping toes, numb areas and stabbing pains. I had a scans of my ovaries and bones because of pain. I was amazed to discover that I had spondylolisthesis. My doctor was amazed that I had carried 3 pregnancies and had not been diagnosed. I had difficult pregnancies with back pain and sciatica, but thought that was normal in pregnancy.

    I always thought it was my husband who had a bad back, not me! Now it all makes sense!
  • Having attended a four week residential PM program I would have preferred that learning opportunity to have come sooner rather than later which although I coped adequately, still managed to illuminated some individual issues beyond reasonableness that subsequently required damping down and within confined parameters. My own rollercoaster has less amplitude than it did have and although the peaks are less over time, the lows more shallow or flatter.

    I feel obliged to share that knowledge so that those familiar problems can be eased in the knowing that they are on the horizon, we can plan and reduced the overall impact that they could have, my depressive episode has never returned on the basis that it I know the signs and signals of its development, I am not in the same place that would allow those symptoms to develop now, stronger and wiser.

    This is a team event I have only credit for surrounding those best placed to help and support me, although this does seem contrived, I have squeezed the best and usefulness out of all those who could help and even those who were reluctant. Nobody here can foretell the future and we have to live with chronic pain as best we can, encourage and support ourselves, developing that coping strategy as we go, while living in it.

    It is possible to survive on a rocky road but it is not advisable, time and experience makes the road smoother even if it is not the one we would prefer.

    Take care.

  • John - so right on the point, about the road having ups and downs, but the amplitude of it seems to decrease as time goes on. Agreed, over time, much has been noticed on my part, about a gentle decrease in those "ripples" that use to be hills and valleys.

    I remember looking at this, like a battle for years, then I noticed - that I was fighting with myself? Why?

    I will invite pain into my house, but I will only allow it to visit, I wish it to know that it is welcome, it is here, so lets learn from it, but it will not be fed or nurtured here.

    I welcome it only to teach me a lesson for today and then we part again.
  • Centurion,
    Your comments initiated a wry smile in that I remember at the start of my own journey attempting to tackle the pain head on, in a very masculine way, that strategy was ineffective although it may have seemed a valid idea at the time. Someone said, that it takes equal effort to be negative and over time I have learned to seek improving ways.

    I only accept the reality of my situation that enables me to move to the next objective, we do not have to accept pain in its totality, to enable us to achieve short term objectives, if we take small attainable steps then the accumulative success is greater than we may have initially surmised. Attempting those bigger steps from our healthy persona is a plan for disincentive and frustration. It is always hard to know if those ups and down have actually diminished or just our current perspective of the same issues, presumably thinking they are less is progression, which acknowledges some of our developing competence.

    Managing pain is about us against ourselves, those subconscious notions that we can still perform beyond our current capability or reinvigorate achievements from the past are not the measures for our new normal, where simple things are now so more difficult. My improved strategy is to be more subversive, in letting the pain win sometimes; knowing when to push or regroup is always an issue when we are looking for improved consistency, from an inconsistent condition.

    Those here who have success radiate an inner calm and have made friends with themselves, that aura is infectious, they like swans, serene to the outside world while paddling furiously below the water line. I have not lost the fight only become more selective in how to survive this marathon, we are all winning and can only aspire to addressing one issue every day or that our pain allows, every day really is a new one an improvement on yesterday and hope for the future.

    Take care.

  • John congrats on completing this program and for even starting it. I'm wondering if you would share more on what got you to that point, how you found this program and what the program is about? Sounds like a 12 step program for pain. I've often thought there were similarities between addictions and chronic pain but never knew there was help out there.
  • Kris,
    This one is similar to the one that I attended, it also lasted four weeks every day.


    Take care. John.
  • Ive learned that all Drs dont tell the full story of sideeffects that realte to certain medications..

    The Specialists are certain now that my bones are so fragile due to chemo, not to mention that it slowly wears away your teeth and leaves all other sorts of nastys to deal with..

  • John - yep - smiling too. The thing is- masculine or not, some have a masochistic bend on their relationship with pain, sincerely, I wish that was an answer for myself. I have no side to my personality, that allows me to "free" it in that way. Time, butting heads, agendas, life and just the daily grind has lead me to embrace a lot of change, years ago.

    Does that means I am a lump on a log, not in the least. In the past, I have managed to put myself on an exercise program that saw me moving my heart rate up to 155bpm - for 60 minutes - 3 times a week. It took 18 months of work, to get there. I kept losing weight at a rate of 4 lbs per month, for 16 months after I stopped. Could I do it again. I actually am working at it, although at a much slower pace, because the body is 14 years older, it is not as over-weight as it was, when I precipitated an intervention on myself. I was alone - no spouse - and therefore could and did push myself so hard that I was in pain, a good amount of the time.

    The thing I hope that is noticed, is that once I stopped "beating" myself up for all kinds of emotional reasons, and trying to live up to others expectations, I found that my pain levels migrated down. As well, I gained the incite that my activity level at many times, controlled the pain level. High movement and I was in agony. Moderate - and I could move all day, and even with that today, I am continuing to work on just increasing muscle and dropping a little, due to age and knowledge that I am going to lose more mobility,, unless I keep as active as possible.

    Sincerely - my reason for commenting, is to save someone from bashing their head on some of this, the way I did for a time. Now - I don't care if I have to drop on the ground and take 20 minutes to meditate. I just do it - get my rest - get my bearings back and then slowly move again, after I am feeling fine. This summer has been an eye opener for my own parents, who have watched me for all these years, and now - 40 years later - they are seeing me get better and feel like spending time with them too.

    As I have said before - this disease-issue has lessons for myself and learning to be transferred to myself. To think that this is just a gamble, as to who gets hurts and why, well, that whole mess of thinking, kept me from growing up and learning to improve myself.
  • 1 - That back pain really does exist. A seemingly normal person may be screaming on the inside.
    2 - Get all your records and get organized.
    3 - Write it down!!! Before, during and after your doctors visit.
    4 - Take a buddy. Whether it is spouse, friend or even child (teenager or older)
    5 - Organize your meds and keep them secured.
    6 - Research, ask questions and think.
    7 - Selectively listen to those who "know" what you need to do. Keep the good and ignor the rest.
    8 - Step back and think about what is going on. Ask yourself if this is the right answer for you. Don't latch onto a doctor just because he has the answer you want.

    This has been a long hard journey. And the journey is far from over. Treat yourself well on the journey with frequent stops for ice cream....
Sign In or Register to comment.