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Needing support

juliejjulie Posts: 213
After 4 surgeries since Feb 07, I ended up with a numb/painful left foot. Recently, after getting an MRI for my ankle and foot I was told I had tarsal tunnel and completely torn ligaments on the outside of my ankle. I had an EMG and Nerve conductivity test that showed that I had nerve issues in both legs. Within the last month my right leg that held me up has been becoming weaker and painful. Today while walking up outside stairs my right knee pulled weird and I couldn't walk. The pain was incredible and I was outside and had to get back into my house. A friend took me to my DO who said my knee capsule had folded (I think) on itself and pulled muscles and nerves into my hip and foot. He is trying to get approved an MRI for my back and head. My bladder is involved in this too. He worked on L4/L5 which was slightly herniated before these surgeries, but we are now worried that has herniated.
My legs just keep getting weaker and weaker. I am so tired of all of this. The pain is draining me. I worry about my nervous system and what is going on. I certainly don't want to go through any more surgeries, let alone another fusion.
I feel so alone all day long as I deal with all of this. I have a great support staff with all the doctors who are really trying hard, but in the end I go home after each appointment and have to survive until the next appointment. I wish I could get another body on ebay or somewhere that would work and not be in constant pain. Thanks for listening. Just needed to vent.
julie
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Comments

  • I know exactly what you are talking about. Wouldn't it be great if we could trade in on a new model. I am so sorry that you have had all of these issues. Are you currently on pain meds? There are so many nerve/ER pain meds out there that can at least help us to have minimum pain. Do you see a pain management doc?
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,728
    I'll take one new back to go. thanks =))
    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!
  • Sorry you're going through a rough time. Try to find something that makes you laugh, movie tv etc. spend some me time pampering instead of thinking of yourself as failed surgeries. You're a human being with needs wants and goals. It's difficult with these set backs and hard to ask why. You'll know victory one day even in the smallest things in life. Set tiny goals for yourself and baby steps. Take care. 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
  • Julie,

    rmember you are never alone in all of this, there is always someone on here day or night, or pop into the chatroom, you will be most welcome.

    Constant pain, yep all of us knows what that is like. The falling over, hey I'm a pro at that. My mum and I went for a little walk, I got my cane outtta the car and she she said 'you are not using that, you are too young (32). I said 'Mum, I don't like it but I need it, otherwise I will fall. Well mum just wouldnt let me take it and I had a fall. She ssid, 'get up, you are embarressing me'. We went into a grocery store and it happened again, this time she walked off. She cannot deal with it, she can chooose to walk away, the difference is I can't. People like me can't get up and walk away. Emberessing, yes. Want the ground to open up and swallow you whole? yes probably.

    However, the issue is hers, not mine. I have to deal with it. I have a sense of humour, crying doesn't solve things, (lubricates the etes quite well though :D). My sense of humour has helped educate people about what having a bad back is like.

    So I know you have had a rough ride, but head up, shoulders back and take little steps to where you want to go. You have all of our support either side of you in case you fall, we are here to pick you up.

    Do you have a hobby? I make cards, I do cross stitch, I read, I paint, if I have a real good day I go to our local steam railway - helped paint a wagon - its got my name on it somewhere lol. One evening in the summer they held a Volunteers Social evening - had a barbeque and chance to gather together and have a natter, or learn how to drive the steam train. My hubby was there as quick as anything. Me, I held back. They made me have a go, I thought everyone was still alking out of the way, no they were all stoood on the platform cheering me on, there to help me off the steam train..that was a good evening, a happy memory. Thats what you need, small things, family over for dinner (whether you make it or not) art stuff, just let yourself relax and try do stuff where the focus is on positive stuff and hopefully you will be able for an hour or so to forget your ankle/foot pain. Poaitive thinking really does help.

    I am thinking of you and sending you lots of love and positive thought for you to have a good day with as least pain as possible.

    Hey this is turning into a long post, sorry!

    Lots of love
    Danni xxxx 0000 xxxx
  • Julie,
    Well said Charry, distraction is always another strategy and historically we may have been used to having some control of our life and future and chronic pain reduces this by varying imposed degrees and it is difficult to find out who we are.

    We all need to feel that we are doing something for our situation and thinking about what may be possible may well not be reality and impose deeper thoughts of despair. I have many strategies and much experience in how to deal with my pain at every level and an alternation one when a flare up occurs.

    What you want to do and what you can do may be far apart and we can only use those windows of opportunity for any improvement, we have to change and adapt as never before and continue while in pain to find the most optimum route, which is never easy.

    As has been said develop small attainable goals within your capacity now, not what is was and give yourself credit for having reached them and some reward. Chronic time is different than normal time as everything slows and the effort to do the simple thing take more effort than it should. You have started off well by asking and sometimes this is the hardest of things. We have all been where you are and do understand how it feels and the relative frustrations, a bit lost and looking for direction.

    Take care. John



  • I really appreciate your post. I am on pain meds. My podiatrist is currently trying to get rid of my neuropathy pain with a mixture of medicines. Today's visit with him went so much better then the first one. I have a great team of doctors and they all work together, but we haven't yet figured out what is happening. Next week I have an MRI of my back and head. I hope they find something that explains all my symptoms. I worry my head one will be blank. lol. I do not have a pain doctor as of yet. My other doctors are handling my pain meds at the moment.
    Thanks again for responding. If I find any new models of bodies that do work I will let you know.
    Julie
  • your post was great. I use my cane all the time. I am 49 and at first it bothered me, but now I am glad to have it. I am taking a weekly course at my church which deals with individual growth and I certainly have plenty of time for journaling. I haven't thought of hobbies in a long time. Now that my sons are in grad school or on their own as of 3 months ago I haven't really done much but work on healing my body. With recovering from the four surgeries in 11 months the medications really kept my brain from focusing. I have my two dogs that keep my going.
    We have no family close and all but a couple of friends are left cause of the time it is taking me to heal. My husband is my strongest supporter. I am lucky to have him.
    Your train episode sounded wonderful. I do stay positive most of the time. I just seem to have a day every once in a while when it seems too much for me to handle. I now can accept those days and work through them to the next. My post was on one of those days. I really appreciate the time you took to write. It means a lot to me and I am feeling your positive energy.
    Today was a good day. I hope you had a good day too with less pain and no falls. Use your cane and tell your mom to get over it. My mom is a long way from me and can't handle what is happening to me.
    Julie
  • for writing. I do work on getting through each day with a positive view, but sometimes as was yesterday I had more on my plate then I could handle so i reached out. I was hoping someone could relate and I found out there were people who could. This helps me feels not alone.
    I realize my future is in my hands and I also realize that it helps to have friends to remind me of that. Thanks for taking the time to respond to my post.
    Julie
  • and I really do try and find beauty in even the smallest things. I do need to work on those goals and I do get frustrated when even though I have tried to do my best to heal things aren't getting better. I will keep on though. With support from SH friends it makes it easier. I hope that you get help soon and your pain gets reduced. Thanks for writing and helping me get back on track.
    Julie
  • I SURE CAN IDENTIFY. AND I, FOR ONE, THINK YOU ARE ALLOWED TO FEEL BAD AND, YES, EVEN CRY, FROM TIME TO TIME. I THINK THE CRYING RELIEVES THE STRESS. ONE WOULD THINK THE MEDICAL ESTABLISHMENT WOULD HAVE COME UP WITH SOMETHING FOR US BY NOW. MAYBE WE NEED TO ADVERTISE MORE---YOU KNOW, LIKE PINK RIBBONS OR A WALK FOR CHRONIC PAIN. (IT WOULD HAVE TO BE A VERY SHORT WALK, MAYBE A 1K.) WE'RE LUCKY TO HAVE EACH OTHER AND, IN MY OPINION, YOU DID JUST THE RIGHT THING WHEN TIMES WERE BAD FOR YOU, LET US KNOW. WISHING YOU BETTER DAYS....SUSAN.

    P.S. JOHN: WHAT DO YOU DO TO DISTACT YOURSELF DURING A PAIN FLAIR?

  • ;) Julie you are not alone. I am currently on the computer in the middle of the night, putting in time till I can take my next pain meds. I have a weight problem and normally cannot wait for my next meal, this I cannot wait for my next pills.

    I am 40 and in rough shape. The pain is bad enough I would like to do surgery, I am sure the first thing said will be to lose weight so that will be one item to tackle int he wait to see the specialist. I am depressed from almost 2 years worth of waiting to ssee someone who may help. It is as if no one cares.

    I know my respiratory illness slows them from wanting to operate, I am doing my best.

    rae






















































    then
  • Julie - Pain is the great leveler - you are among young, old, rich poor - like cancer and all those other challenges in life, pain doesn't discriminate. So you are among many, many people, some better off than you and some much, much worse.

    I know I spent a lot of time in the neurology dept. of a famous hospital, and sitting in the waiting room there made me very thankful for what I do have and made what I don't have seem small in comparison to the children, young adults and others who can't move, can't swallow, and some near death.

    Easy to say - I know that 24/7 pain is almost impossible to ignore - but try to get your mind off it whenever and wherever you can. I find animals, both pets and the critters in my yard, really help. Hobbies help. Listening to other peoples problems helps (I think that's why many of us are on these forums so often - it's good to try and help those who need it).
    And never give up hope. That's most important - even if it is hope that you'll be happy, no matter what your circumstances.

    You're among friends here - we understand, and I think chronic pain is the great, silent problem in the world - we need to get heard and maybe there will be more help from t he medical world in our future! Rosa
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