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  • Multiple Back/Spine Problems - docs say I'm a mystery??

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    Old 01-03-2009, 03:21 AM   #1
    BeautifulMess37
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    Unhappy Multiple Back/Spine Problems - docs say I'm a mystery??

    Hi....this is my first time posting a new thread on here. I'm currently on a mission to try to figure out what exactly is going on with me. I figured, if maybe I could share my story...I could possibly find someone who is either going through the same thing or could try to help me lead to any answers I'm looking for.

    Almost 2 years ago, I was diagnosed with osteoarthritis in my spine. I also suffer from chronic migraines and borderline RA (rheumatoid arthritis). Along with that, I have herniated and bulging discs in several areas of my spine. My C4-C5 is practically bone to bone and my T12-L1 has a pretty bad bulge. Last September, my spine doctors wanted to send me off to another hospital to get a procedure done that injects steroids in between the joints in hopes to relieve any pain I was experiencing. But before that happened, they gave me a prescription to take Prednisone for 10 days to see if that could help any pain in the meantime. The first night I took the pills, I end up having an allergic reaction. I had internal itching EVERYWHERE (from my palms, down to my legs, etc.), rapid heartbeat, slow breathing and throat swelling. I immediately took some benadryl and discontinued the medication. I saw my doctor again and he had a confused face, basically scratching his head because he wondered if it was even possible for patients to be allergic to prednisone. From there, I was sent to see an Allergy doctor. I was tested to determine which steroid could be used for the procedure in the other hospital.

    To make a long story short, I was tested on 4 different types of steroids. Each one, I had an allergic reaction. But I did end up going into anaphylaxis. From my blood pressure rising up to 166/102 then within 5 minutes, my blood pressure went down to the 50's. I felt extremely cold and was shaking uncontrollably. Thank God the clinic was able to stabilize my vitals, but after that visit...I was told to make sure I get a medical bracelet. I was told by the allergy doc, that I fall into this 1% category of patients who are allergic to steroids (which they say is very rare).

    So, since that craziness...my spine doctors basically have to go a different route and think of another plan. Since I cannot have any kind of steroids(which is what they usually give to their patients with the same condition), they prescribe me numerous medications to see if that will help my problem. But you know what....I'm honestly tired of taking pills. I feel like a medicine cabinet and there's so many different ones to take. They currently have me on Norco, Valium, Nortriptiline, an anti-seizure med (I forgot the name), indocin....just to name a few. I have to admit, I have not been faithfully using all the meds as I'm suppose to. If anything, there's just too many of them and I am scared to even take all of them at one time (even though the pharmacist says it won't really interact with each other).

    Surgery is definitely the last resort and the doctors feel that it is not that necessary to go that route at this point. Which is great on my end. But what I'm trying to figure out, is what I can do to help me get through both the physical and emotional pain that comes with all this. It has been extremely difficult to function day to day, especially when you don't know what kind of day you're going to have. I've had experience what the docs call a "flare-up" back in October, which basically had me on disability for a few weeks. The best way I could describe that pain....it's like my back was broken in half. I couldn't get up out of bed or walk...just felt stiff all around.

    I have done physical therapy, accupuncture, chiropractic, massages...you name it. But to me, nothing feels like it's helping and my body continues to get worse. This past Christmas eve, my back was feeling really stiff and sore and then I started feeling a tingling, numbing sensation going down my right arm to my fingers. I then experienced soreness in my calves, thighs and both sides of my ribs and sides that weekend. I end up seeing my medical doctor on Tuesday and she basically didn't know what more she can do on her level of care. So, she set me up to see my neurologist again to possibly do an EMG test. And in the meantime, she ordered some lab tests for me to do to see where my blood levels are at.

    I just found out yesterday morning that the lab tests I got done this past Tuesday showed that I have an extremely low Vitamin B12 level. What a great way to start the New Year huh? I now have to get a B12 shot once a month for the next 6 months and also take Vitamin B12 pills daily. Crazy huh? Neverending....*sigh*

    I'm completely drained emotionally and physically. I don't know how much more problems I can handle. It's been such a journey and I wish these doctors could figure out what's really going on with me. It seems like everytime I go in to get checked, they find something new. I don't know what to do anymore or even know what more my doctors can do to help. They say my body is a mystery. They say I have what people get as they age. They say I'm going to have to live with this for the rest of my life. I feel so confused and lost. But how did I even get all this?? I'm only 29!!

    If there is anyone out there who either knows someone or who is dealing with somewhat the same issues as me....would you mind responding back? I'm still young and I wanna stay strong and get through whatever I'm going through for my kids. Since this condition, I haven't been able to do alot of the "Mommy Duties" I used to do. I'm very limited to alot of things now. I just want some answers....or at least more of an understanding on what's going on with me. Is there anyone out there that can help?

    Thank you and God Bless....Happy New Year

    Last edited by BeautifulMess37; 01-03-2009 at 03:41 AM. Reason: forgot

     
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    Old 01-03-2009, 07:41 AM   #2
    themommaoffour
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    Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    BeautifulMess37

    Well my friend I do not have much to tell you on the advice end all I can say is I hear ya , I have a very similar story other then the allergies. I am 36 years old and a mother of four little ones age 2 4 8 and 10. I has stenosis and L5 L4 heniated discs. I did have the surgery lamenectomy and discectomy. It was a bad idea, in my opinion, the pain is way worst and I now have a left leg and foot that is completly numb. They told me I had no choice to have it done cause I would have lost all bowel and bladder control. I know how you feel it is very hard to be a patient loving mother when all you can think about is how to get thru one more minute of the day in all this pain and frustration. The docs try there best but with back issues and pain it is very difficult because they don't really have all the answers. Pain when it is chronic is very hard to treat. Then with me there is the crap of dealing with the judmental uneducated asses that asume that if you are taking all these strong narcotics that you must be an addict. Even people that claim to be your friend and don't understand what you are going thru, think " well if you had the surgery you must be all better, you must just be taking the meds because you like the high. Well I'm sure as you know that at this point on these drugs there is no high just a little pain relief, very little. Well I 'm sorry I was not much help but I just wanted you to know you are not alone, there are alot of us moms out here in pain and very frustrated, but we feel your pain on all levels. You are in my thoughts and prayers and I hope you get to a point that you can manage it all to the best of your abbilities. Hang tuff, we are here for you if you need to talk or vent. My email is [email]*removed*[/email] if you wnat to talk more. Good luck.

    Last edited by moderator2; 01-03-2009 at 01:19 PM. Reason: posted contact info

     
    Old 01-03-2009, 04:28 PM   #3
    BeautifulMess37
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    Thumbs up Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    Themommaoffour...

    Thank you so much for responding to my thread. It mean so much to me that I could share the same experiences with other wonderful moms who are going through the same challenges. I'm sorry to hear that your surgeries weren't a success. That is my biggest fear if the docs ever decide to go that route. I mean, my husband works in surgery and he's always told me to try to avoid getting surgery in the back or spine. Unless of course it's the absolutely only way to go. I think what makes my issue alot more difficult for these doctors is the fact I cannot have steroids. You don't understand how many times I've seen numerous doctors scratch their heads or have this completely confused look when they notice I cannot have steroids at all. It makes me wonder....so there's no plan for the patients who can't have it? Does this mean, we are pushed off to the curb? It's very very difficult. And yes, I do have 4 children myself. I have my two wonderful boys ages 13 and 6 and I have two beautiful step-daughters ages 9 and 7. It's hard for me to see all of them watch me go through all this pain. At one point, my eldest son asked, "Is mom going to be okay?" "Will mom be able to get out of bed?" or "Why is mom so sick and weak now?"

    I do understand what you mean about the uneducated and judgmental individuals who don't understand anything we're going through. Especially me being young and having numerous health issues, they think it's impossible to be active one day and then be a complete mess after. And as for the meds...yes, those individuals think it's the joys of being "high". You're so right, it's not...it's just a temporary fix and it barely helps. If anything...it makes me completely sleepy and not functional. I do not see any enjoyment in any of that. I fear for the other things that these meds could be damaging in my system. Like my liver? How's my liver doing?

    THANK YOU AGAIN for responding thmommaoffour! You've made my heart smile and I am very happy to hear that there's other mommies like us who could encourage each other. We may not have the same issues, but it IS a great help knowing that there's people out there like you around. I hope you and your family a wonderful new year and may we all have a pain-less year and a year with more strength. I am continuing my journey to find some more answers. And when I do....I'll keep you posted.

    Stay Wonderful.......

    Last edited by moderator2; 01-03-2009 at 07:16 PM. Reason: too much quoting - please consider clicking "Quick Reply" instead of "Quote Reply"

     
    Old 01-04-2009, 09:28 AM   #4
    feelbad
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    Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    when you have gone thru all of the more conservative forms of trying to treat what you actually have going on within your c spine,surgery unfortuently really IS pretty much your only option,sorry to have to tell you that. i don't really understand your docs take on this actually. when you simply have NO disc left,things will not just get better on their own,you know what i mean? you just have a major disc loss up there that is casuing your ongoing symptoms. it needs some fixing before you even have a chance of losing the ongoing symptoms or the pain as well. this is just the point where some of us end up at when we have tried and failed with all other conservative modalities.

    you simply need a bone graft fusion to repelace what has been lost in that disc space. it would help alot in what you are experiencing here,really. there may be other possible surgical otions for that disc as well,you need to speak with a good knowledgable neurosurgeon about all options at this point. it sounds like your last MRI was like two years ago? is that correct? if so,you REALLY need a brand new one done now just to really see how things are up there at this point. even as little as six months time can really change certain spinal issues. it doesn;t take long with some types of problems. you could have some level of actual slippage there or stenosis that is what has created your latest symptom with that numbness? "something" is now affecting a spinal nerve or even more than one at this point or you would not be feeling actual numbness and tingling in that arm. geting that updated MRI really IS what you should do at this point,then see possibly a different neurosurgeon for an eval and consult? it really sounds like the docs you have been seeing really have grwon tired of just dealing with this so they are not really as good for you as a brand new NS with a possibly totally different appraoch to your situation may be.

    as far as your reaction to the pred and the steriods,honestly it is possible for anyone to actually be allergic to just about any type of med really. it all comes down to reactivity and overall body physiology in just how we as an individual will actually react to any given med,you know what i mean? its not rocket science and your docs should not be like shocked over this, ya know? it just 'happens' with certain types of meds in certain people. pretty basic and simple. pred is a pretty strong med in and of itself(my son is on this for his liver transplant),i am not suprised that anyone would/could have a reaction to it,or other steriods too as they do hit the body pretty hard in alot of ways. so you are not some sort of freak in your reaction to this particular med. it just happens. the problem for you is it is a very helpful med to use when there is actual inflammation going on within our bodies. it just takes some options for you off the table so to speak,but there are others that can help with inflammation that are not "in' that steriod group. your docs just have to really get a bit more creative and do some simple research for you. that IS part of their job to just do for you as a patient.

    the very first thing i would ask your docs for right now is that updated MRI. you really have no clue right now,today,just what changes have taken place up there over a very long period of time. getting that new MRI would kind of dictate what your next or realistic options actually are at this point. honestly,i really cannot see any other way for you to truely obtain any real relief without getting some level of real surgical intervention. you have no real disc left up there from what you described,thats simply not a good thing for you to be living with and feeling the consequences of like every single minute of everyday,ya know? if you don;t feel that your current docs are truely doing all they can for you,i would simply get another opinion and possibly move onto different docs who would look at your situation in a very different light. but getting that new updated MRI right now,really IS a must. you have simply had changes,i can almost guarentee you that given what your initial findings were and your latest symptom. it shows. you just need to know what those actual changes are at this point. the only way to truely see that is with an MRI again. just when are you going for that EMG? that would show for certain whether or not you have actual nerve impairment going on. that is pretty much all you can actually tell with that particular type of test,just compression or flow impairment. but having a 'normal" test does not mean everything is okay,so keep that in mind too. my first emg was totally normal despite my very herniated disc that was irritating the hell out of the spinal nerve. becasue it did not actually impair the nerve flow since it was merely just really angry,it did show as 'normal'. that MRI is where it would actually "show" the problem areas the best.

    i do wish you luck with your situation. but DO obtain that new MRI,i just really cannot stress enough to you the very real importance of finding out how much has actually changed up there for you. please keep me posted bm37. marcia
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    Old 01-04-2009, 09:49 PM   #5
    BeautifulMess37
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    Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    FeelBad...

    Thank you so much for sharing your spine story with me. It was very helpful and gave me alot to think about. As for an updated MRI, actually, back when I had that "flare up" in October, the doctors did send me out to get another MRI done of my whole spine. They did find minor changes, but nothing where they felt was extreme. They did find some bone spurs in my L-area. Again, they didn't do anything but give me more medications.

    I am in the middle of trying to get myself seen by a neurosurgeon, but since the insurance is HMO, I have to play the waiting game and wait for the referral to go through. It is in a another facility, so it might take a while. So, that's where you could say I'm at right now. Just waiting.

    But....we'll see what happens. THANK YOU AGAIN and I'll definitely keep you posted on any other updates I get. Have a wonderful New Year and God Bless!!

    Last edited by moderator2; 01-05-2009 at 10:48 AM. Reason: that huge quote - please try using the "Quick Reply" button instead of the "Quote Reply" button.

     
    Old 01-06-2009, 07:22 AM   #6
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    Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    B37, I really feel for you. I feel compelled to respond for so many reasons.
    First of all the thing that bothered me the most when having to deal with chronic pain was how it interferred with my family/kids. That depressed me more then anything. So you are not alone there.

    The fact that your allergic to steroids I would think would be a huge issue when it comes to treatments, perhaps that has something to do with the doctors reactions to you. I cant tell you the number of times I was put on steroids over the past 4yrs. Also before & after surgery my surgeon gave me injections of what he referred to as huge doses of steroids. Must of indeed been because my face was pretty puffy after surgery. So in your case I am not sure how that would be dealt with.

    I want to also tell you I have simulair problems both in the Cervical & Lumbar, although recovering from cervical surgery now. I can tell you what the surgeon found when he went in was much more then what was on the MRI, the MRI was the second one & although I was in agony the first MRI did not show much. I have heard others say the same what was on the MRIs was minor compared to what was found during surgery.
    I am not sure if it has ever been suggested or if you are in pain managment but perhaps a good PM may be able to give you some better quality in your every day life. If not for my PM I would have thrown in the towel & stayed in bed. I was on norco & it did not touch my pain. I feel the exact same about meds as you but heck I want to have some kind of life here.

    I also know how people can judge & that hurts. EVen my husband & close family worry about the meds & I suffer as it is trying to take the lowest dose possable. I just pulled out one of my scripts to show my husband that it could have been filled over 2wks ago. Just so he would stop worrying so.
    I have been able to stop one of the pain meds since surgery but then again I cant do much so we will see.
    My heart goes out to you, I know & so do others how much this effects your life. If your interested there is a chronic pain board, its a subboard under the pain managment board & there are some wonderful people there who walk in your shoes. I hope you can find some relief, I feel fortunate now to know at least I could have my surgery & get a shot at it. You were given some great advice here so I'll leave it at that but just know we understand & there have been some success stories from people who were told they would never improve. They just did not give up & eventually found some help, thank god.
    Please keep in touch as I think these boards will help you more then you know. God bless, Sammy

     
    Old 01-07-2009, 01:24 AM   #7
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    Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    hello. sory to hear your story about the chronic pain. it's horrible, i feel for you. i have the same things going on but it's on my neck. for me, they say it's the muscles, not the bones etc. but what that matters to me? it's still a chronic pain. i've tried physical therapy to no avail. it all started after a car accident. is that what happened to you or it all started all of a sudden?
    i'm now on lyrica for chronic pain and for sleep. didn't start it yet but gonna go to get it now. i've tried percocet but it doesn't help 100% help a little, i'm still on percocet half a pill a day only. i know how you feel, believe me. there is no single day without pain.
    i believe it's better to take medicine for chronic pain, cause suffering is too bad. i didn't take medicine for 2 years, that was horrible. better have a better quality of life than suffering. take the vicodine, that's my advice and ask your doctor for lyrica or cymbalta. i've heard it helps. not too sure. i will update you after a month. all the best. and again, i feel for you.

     
    Old 01-07-2009, 08:47 AM   #8
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    Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    hi there,

    wow..i can relate. i too haven't taken every med faithfully because i felt like i was living on pills! started out with 5 day steroid pack, then vicodin, skelaxin, naproxyn, robaxyn and mobic. i took all of the steroids but they didn't help. skelaxin made me sick, naproxyn gave me the worst heartburn of my life, robaxyn didn't work and by the time i got to mobic, i was done! i only take vicodin when i can't take it anymore, but sometimes i have to take 2 (at my doc's suggestion) and i can still feel it. i just spoke to my mom last night and she was like "you're not taking the pain meds all the time are you?" i am tired of having to justify my pain meds.

    as far as your kids, i can relate, too. my son wanted to go biking with me and i couldn't. i can't rough house with him or play around like i used to. he keeps asking me when i will be better and i don't have an answer. i hope that things get better for yuo because i know how it feels being young (i'm 33) and dealing with chronic pain. good luck.

     
    Old 01-07-2009, 02:15 PM   #9
    themommaoffour
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    Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    When you need pain pills on a steady basis it is better to take at a regular pace, if you let the pain get so bad that you can't take it anymore then your meds will not work as well as they should. You should never let any other person make judgment calls on your med intake. You are the one dealin with the pain, you need to be able to deal with your child no you should have to live in pain all the time. Only you know with your doctors help what is best for you. Your mother might meen well, but is only causing mor harm with her opinions. Do what is best for you, not to many people understand chronic pain very well, not even the expect in the field. Go with your heart and do what is best for you. I feel your pain (in many ways) be strong. Remember, dependence and addiction are two very different creatures.

     
    Old 01-07-2009, 05:55 PM   #10
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    Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    Quote:
    Originally Posted by themommaoffour View Post
    When you need pain pills on a steady basis it is better to take at a regular pace, if you let the pain get so bad that you can't take it anymore then your meds will not work as well as they should. You should never let any other person make judgment calls on your med intake. You are the one dealin with the pain, you need to be able to deal with your child no you should have to live in pain all the time. Only you know with your doctors help what is best for you. Your mother might meen well, but is only causing mor harm with her opinions. Do what is best for you, not to many people understand chronic pain very well, not even the expect in the field. Go with your heart and do what is best for you. I feel your pain (in many ways) be strong. Remember, dependence and addiction are two very different creatures.
    thank you....

     
    Old 01-07-2009, 08:09 PM   #11
    themommaoffour
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    Re: Multiple Back/Spine Problems - docs say I'm a mystery??

    I wish I could to do more and your welcome.

     
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