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Thread: The Need To Vent

  1. #1
    Join Date
    Dec 2010
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    Talking The Need To Vent

    I'm new to this forum and am so glad to have found it. This is a difficult condition to endure alone. I feel like I'm screaming with pain, sadness, frustration, fear, anger inside while smiling on the outside out of pride or even a kind of shame at this horrible infirmity. I'm a 35 year old female, was diagnosed at 13 after I badgered my doctor for about 2 years that there was something wrong with my back, and had a fusion at 14. My body feels like it's at least twice my age. This is such a horrible condition to live with constantly. People may know that you feel pain, but really, unless they're living with it they really don't understand what this is like. I feel at the end of my rope often and feel like there's no one who understands what it's like to live in constant and often high levels of pain. There's no relief no matter what time of day, not even sleep gives any kind of respite from it; it wakes me up if I have to roll over or if I sleep in one position for too long. When I get up in the morning it's the worst, I can't even stand up straight, so I get up, get my kids up and get them breakfast then have to sit leaning to one side till it passes which can take anywhere from one to 3 hours. I can't sit for too long and I can't stand for much longer than 10 minutes. Taking a walk.....might as well forget that idea, and I limp almost all the time now. There isn't one part of my life that isn't affected by this. My husband of 6 years has been for the most part sympathetic but lately that seems to be diminishing also. As the pain becomes worse the less I can get done as far as house chores; I hate that because I used to be the person that everyone used to say had the spotless house. I just can't do it anymore, not even half of what I used to be able to. I know it frustrates my husband and I can even understand it to a degree but it's horrible to feel so awful then in a moment of anger have the person you love make you feel worse by calling you lazy. I have scoliosis, rotoscoliosis, spondylolisthesis, spinal arthritis and I think pinched sciatic nerve (the numb pain in your pelvis and shooting down a leg). I don't even have the words to express the despair I feel at living like this.

    To anyone reading this, thank you and I'm sorry to go on like I did. I really needed to though because I have never been able to before.

    I really would welcome your stories as well. I look forward to getting to know you all.

  2. #2
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    Nov 2010
    Location
    British Columbia
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    Hi Annabelle, venting is good! Sorry to hear you are in so much pain with your back and it's causing you so much grief and frustration. I don't have back issues but I have had other issues over the years and it has really caused a lot of strain on our family especially between me and my husband and it felt like when I was really down he gave me a good kick and I was so angry and upset. Men can be so insensitive at times. Anyway, nice to meet you and I'm sure there are plenty of others who have similar experiences to yours and will gladly share them with you.

  3. #3
    Join Date
    May 2009
    Posts
    3,745
    hi annabelle
    i retired early in 2007, due to pain...i, too, have scoli, degenerative disc disease, spinal stenosis, spinal arthritis, hypokyphosis, listhesis, etc etc...and havent had surgery...yet...
    i am much older than you are, and my scoli didnt bother me too much until i herniated discs, about 7 years ago...
    i left 2 jobs in NYC that i loved...day and nite...just couldn't handle it physically anymore...especially the 100+ year old building with 5 flights, no elevator!

    i take hydrocodone, oxy on some days...botox shots for thoracic spasms, which work, but nothing has worked for the lumbar pain...have tried most all the shots, epidurals, facet blocks, etc...

    soooo...you have all my sympathy...i know how the morning feels when one is so stiff...i need a few pills and a few hours to "loosen up" a little! then the end of the day, once you sit down, and the pain and fatigue come flooding in!

    i don't know if it helps to know you have company...in a club no one really wants to join....but you do...

    jess

  4. #4
    Join Date
    Aug 2009
    Location
    St. Louis Missouri
    Posts
    48
    Quote Originally Posted by anabelle75 View Post
    I'm new to this forum and am so glad to have found it. This is a difficult condition to endure alone. I feel like I'm screaming with pain, sadness, frustration, fear, anger inside while smiling on the outside out of pride or even a kind of shame at this horrible infirmity. I'm a 35 year old female, was diagnosed at 13 after I badgered my doctor for about 2 years that there was something wrong with my back, and had a fusion at 14. My body feels like it's at least twice my age. This is such a horrible condition to live with constantly. People may know that you feel pain, but really, unless they're living with it they really don't understand what this is like. I feel at the end of my rope often and feel like there's no one who understands what it's like to live in constant and often high levels of pain. There's no relief no matter what time of day, not even sleep gives any kind of respite from it; it wakes me up if I have to roll over or if I sleep in one position for too long. When I get up in the morning it's the worst, I can't even stand up straight, so I get up, get my kids up and get them breakfast then have to sit leaning to one side till it passes which can take anywhere from one to 3 hours. I can't sit for too long and I can't stand for much longer than 10 minutes. Taking a walk.....might as well forget that idea, and I limp almost all the time now. There isn't one part of my life that isn't affected by this. My husband of 6 years has been for the most part sympathetic but lately that seems to be diminishing also. As the pain becomes worse the less I can get done as far as house chores; I hate that because I used to be the person that everyone used to say had the spotless house. I just can't do it anymore, not even half of what I used to be able to. I know it frustrates my husband and I can even understand it to a degree but it's horrible to feel so awful then in a moment of anger have the person you love make you feel worse by calling you lazy. I have scoliosis, rotoscoliosis, spondylolisthesis, spinal arthritis and I think pinched sciatic nerve (the numb pain in your pelvis and shooting down a leg). I don't even have the words to express the despair I feel at living like this.

    To anyone reading this, thank you and I'm sorry to go on like I did. I really needed to though because I have never been able to before.

    I really would welcome your stories as well. I look forward to getting to know you all.
    Hi Annabelle:

    It was good to read about your pain. Not that I am glad you have it but because you sound so much like me. I too have daily pain. I am 55 (a lot older than you) but most days I feel like I can't make it any longer too. You are so right when you say no one really understands our pain. It's true but I can't blame them. You need to do whatever you can to minimize or help your situation. ie: Find a ortho doc that specializes in scoliosis. I got most of my relief with nerve root injections. I am now fused (T3-S1) so I am not able to bend. But still have the same pain as before the surgery. Not sure why. I have laid out my house so everything I use is up high. I have grabbers hanging in everyroom. It looks a little messy to the outside folks but I don't care. I use many different size & shape of pillows to give me relief. I do get relief in bed and when I am in my recliner. (A Queen Anne recliner - higher up so it's easier to get in and out). But with both I use cushions and pillows. I only have 2 positions in bed - both require pillows to help me. Under my knees, of course and when on my side between my knees. Must keep hip and shoulders aligned at all times. Cervical pillow helps keep the head in proper position. Do whatever it takes to get you some kind of relief. I only get about 2 hours of total relief a day. Besides when I am sleeping soundly 7 hours (with 3 or 4 position changes). But even the shortess relief makes a difference. Just keep the faith and remember, God doesn't give us more than we can handle. Take care.

  5. #5
    Join Date
    Apr 2009
    Location
    Aspers PA
    Posts
    19

    In the Same Boat!!!

    Hi there! Please do not feel bad for venting! I have all the same problems you do and I am 31. I too feel much much older. My husband while he tries to understand...is at the end of his rope with me being in constant pain and unable to keep up with the things he feels a wife should do. I totally understand! Its soo hard to keep going each day when you have pain and feel like you can't even get out of bed in the morning. I also go back and forth feeling like a bad mom because i can't do the things a mom should do. I suffer with depression and it always gets worse during this time of year when my pain is worse...i guess due to the weather. Please feel free to email me on a more personal private level and we can talk more. kidbusiness2@localnet.com I think we both need someone good to talk too!

    Sending Prayers your way,
    Julie

  6. #6
    Join Date
    Dec 2010
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    6
    Wow, thank you all for the nice replies! Having even one person who really understands goes a long way. I'm really glad to have stumbled upon this site, the support and information on what's worked and hasn't worked to help is incredible and so necessary. You all can't even imagine how nice it was for me to pop back in here and find these replies. The venting helped, the kindness and words of encouragement were the extra nice bonus.

    Thank you all

  7. #7
    Join Date
    Nov 2010
    Location
    cambs england
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    Anabelle, just came back onto the site to see if I got a reply to help me with my back pain from scoliosis but I got none. I felt so alone when I posted my 2 threads, + realised I got no help, until I just saw this thread you posted. You see, I had scoliosis at 13 & am now 36. I get frustrated with how things are, & I feel like I'm doing less & less every year. Worried about what the future holds all the time while my confidence & self esteem gets lower. What sort of help do you get, do you see any health professional for support? Can't any form of exercise help prevent our problems getting worse? Do you get any treatment at all? Surely we just can't be left alone. How do you cope?

  8. #8
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    Hi Annabelle, if you are open to the idea of a revision surgery I *highly* recommend Dr. Lawrence Lenke in St. Louis, MO. He takes the cases no other surgeon will touch. For more info on him see his website: http://www.spinal-deformity-surgeon.com/.
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  9. #9
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Quote Originally Posted by mwright View Post
    Anabelle, just came back onto the site to see if I got a reply to help me with my back pain from scoliosis but I got none. I felt so alone when I posted my 2 threads, + realised I got no help, until I just saw this thread you posted. You see, I had scoliosis at 13 & am now 36. I get frustrated with how things are, & I feel like I'm doing less & less every year. Worried about what the future holds all the time while my confidence & self esteem gets lower. What sort of help do you get, do you see any health professional for support? Can't any form of exercise help prevent our problems getting worse? Do you get any treatment at all? Surely we just can't be left alone. How do you cope?
    Dear mwright-- I'm so sorry you felt slighted. Sometimes people just don't know quite how to answer, or sometimes a post happens at a time when not too many people are reading posts... whatever the reason, please know that there are caring people on the forum. It sounds like you need to see an SRS revision specialist to see what is going on with you. There are different problems that can have happened to you since your surgery, but you need to see someone who is a highly trained specialist, not just an orthopaedic surgeon. There are many members on here who have had revision surgeries and live lives now that they once dreamt of having back when they were suffering. Best wishes in your journey.
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  10. #10
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    Nov 2010
    Location
    cambs england
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    Susie*Bee, thanks for getting in touch. I've got to say, I've never heard of a SRS Revision Specialist in England-is it Scoliosis Revision Surgery Specialist or something. What does that entail? It made me think about asking who else I can maybe referred to rather than who we just get sent to. Cheers, Michelle.

  11. #11
    Join Date
    Dec 2010
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    6
    Hi Laurieanne, honestly I had never heard of SRS till coming to this site but I am absolutely going to look into it now. I wonder why something like this has never been mentioned before as a possible option from ANY kind of professional?!? All I've heard is another fusion to lower spine as an option but they mean years from now (which is fine with me because I'm not willing to lose what motion my spine has left). M.Wright....I feel exactly what you're saying. It's just so awful to feel like this isn't it? I know what you mean about the self esteem deteriorating, it doesn't matter what clothes you put on or how nice you can get yourself to look on the outside, the inside always seems to make you feel like you're not worth much at all huh? I feel like that more and more. As for treatment, I've spent the last 5 years running between Ortho specialist, GP, physio and most recently went to see a pain specialist and nerve conduction specialist. Ortho told me that he wouldn't do a thing for me (pain management wise) unless he had been the one who did my surgery but did write my script for physio, worked with physio for a few months to no avail, would be almost immobile all day after a visit with them and the exercises were what you would expect, strengthen core but it wasn't helping, was actually hurting my lower back like crazy from laying on anything harder than a bed or sofa, gp has me right now on oxycontin for pain (I can take up to 3 a day but limit myself to 1 when I get up when it's the worst for me because I'm afraid of dependency on them), but even those don't do a whole lot for me, lyrica for the nerve pain in my leg and now the pain specialist put me on topamax to help me sleep through the night and counter any weight gain from lyrica as I can forget getting out for some cardio exercise. So in a nutshell, nobody has been able to do anything but manage pain poorly. I've pretty much been told that this is what I've been dealt and I'm going to have to live with it. I honestly don't know how I'm going to do that because everyday becomes harder and harder physically and I feel more sad and scared all the time. Maybe this SRS is the push that some of us need to keep going when we thought we were out of options.
    Last edited by anabelle75; 03-03-2011 at 10:01 PM.

  12. #12
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    May 2009
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    as far as i know, pain management treats the symptoms...the folks who treat the cause, in my opinion, are the surgeons...
    since i have not opted for surgery..yet..and need fusion to pelvis..i stick with the pain guys, for now...
    botox has stopped the muscle spasms in upper spine...nothing has helped the pain in lumbar spine for me...not so far....
    i take oral pain meds for what they can do...which is take the edge off the pain (in my case)...

    jess

  13. #13
    Join Date
    Dec 2010
    Posts
    6
    Hello Jess, thanks for your posts to my thread. As awful as I know it sounds, unfortunately misery does love company. I'm not saying I'm happy that anyone here has these problems also, just glad to have people who truly understand what I'm saying and how I'm feeling. Your earlier post sure does sound an awful lot like how I spend my days and I'm sorry to hear that you're living that way too. Right now I'm just waiting to have an MRI done before doing epidurals, I noticed that you mentioned having done them also, did it work for you? I'm really keeping my fingers crossed about it because I'm just tired of ALL this. I just want something that can make me feel normal. All the best to you.

  14. #14
    Join Date
    May 2009
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    3,745
    hi annabelle
    thanks for the reply...it is OK that misery loves company...that is one of the reasons AA & other 12 step groups work...just part of human nature...

    the botox shots worked to stop muscle spasms in upper spine...but my worst pain is lower spine...and no treatments there have given me more than 3-4 weeks relief from pain..usually 3 weeks...
    i think it depends on what is going on in your spine...besides scoli, i have listhesis, hypokyphosis, spinal stenosis, spinal arthritis, and degeneratvie disc disease...bad discs can cause a LOT of pain!!
    several doctors have told me that steroid type injections work best on nerve related pain...structural pain, like scoliosis itself, is not relieved as much...at least, that is what i was told...
    i got the most relief from sacroiliac joint injections...3 weeks of complete TOTAL pain relief! epidural injections didn't do much for me, and i've had them 4 times by now...nerve ablation helped a little, as did facet blocks...
    i am due to try lumbar injections soon...i haven't decided if i will ask for SI shots again...my next appt March 23rd in Manhattan is for botox upper spine...we will discuss lumbar then...i can only hope SI shots would work again....

    my opinion...it really depends on what is going on (i.e discs, stenosis, etc) besides the scoli...and WHERE...

    jess

  15. #15
    Join Date
    Dec 2010
    Posts
    6
    Hi Jess, thanks for your info on what's worked for you. I'm going to ask about sacroiliac joint injections next time I see my doctor. Why don't they do them for you all the time since they give you total pain relief? Is it something that can only be done every so often? If that worked for me, I would be pushing for it all the time. I envy everyone that can just get up and go and not even think about it.
    Last edited by anabelle75; 03-05-2011 at 09:13 PM.

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