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New Here-Need Advice

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:25 AM in Lower Back Pain
Hi everyone, I'm sorry but this might be long. I have read many of your stories and read the replies. You all seem to be able to help each other out. I'm hoping someone can give me some advice and help me out. Here's my story. On Oct. 18, 2004 I was in a car accident that broke L-2. I wore a brace for months and used crutches also took pain meds. On Oct. 31 of the following year I had to have C-4, C-5 and C-6 disk's removed, had cadavor bone put in and have a plate and screws in there. It took a year and a half for my neck to heal but today it seems fine just a little stiff and tender at times otherwise I'm a success story as far as a cervical fusion goes. All the time I was dealing with that my lower back was still giving me fits. I was going to a dr. in my town that was giving me pain meds, muscle relaxers, nerve meds among other things I will list below. Problem started on a routine visit with my pc doctor. I always had to give a urine sample everytime I went in, I had no problem with this because I knew I took my meds. This morning in particular I was very willing to give my sample, couldn't wait to do it because I had to go really bad. I practically grabbed the cup from her hand and went to fill it. Went back in sat down and waited for the dr. to come in, when she did everything was fine. She briefly talked with me gave me my scripts and I left. 2 weeks later, I get a registered letter saying I had failed my drug screen everything had shown up but my xanax. I was shocked because I know I took them on schedule. I called the dr.s office, no help. I called the lab that checked my urine-they admitted mistakes could happen and often do. I asked them to retest my urine they said they only keep it 7 days it was already gone. I had no way to prove myself. Believe me I tried, I searched and printed everything on the internet explaining why xanax would not show up, took it to the dr.s office. They told me I was banned; could not come back. I left.(peacefully) I then got a referal to a neurosurgeon from another doctor. Had an MRI the MRI report said I had a bulge at C-7, bulge at L-3 and L-4, old compression fracture at L-2, and a small right paramedian disk herniation at L-5 and S-1. The neurosurgeon said after looking at the report, "surgery at this time will not do anything to improve your quality of life." He said I had fibromyalgia, gave me Lyrica and sent me on my way. I tried the Lyrica it did not work. After hearing it was "only" fibromyalgia I decided this cannont be cured and gave up doctors and all my meds (meds were: Lortab 10/500 6xday; Robaxin 750mg 4xday; Lamictal 200mg day; Seroquel 200mgs bedtime; diovan 320mgs daily; cozar 50mgs daily; xanax 2mgs 4x day) I took myself off all them by myself. It was difficult but I did it. That was Sept. 2007 since I took anything. 2 weeks ago I couldn't take the pain no more and went to the er the dr. the intern i saw there was wonderful and very understanding he seemed to feel my pain he knew it was sciatica; he said since things have gotten progressivly worse since my last neurosurgeon visit a year ago he wanted me to go see him again. I agreed. They told me I would need a family dr. to send me for an mri. I told them I didnt have a family dr. they gave me a number and told me to call and make an appt. and that dr. there would send me for an mri. The intern sent me home with lortab and robaxin, it was the first time I had not felt pain in a year. I saw the new family dr. today; she pushed a few spots, checked a few reflexes (I have lost some of the reflex in my right leg) gave me blood pressure meds; gave me predisone told me she agreed it was sciatica, didn't think it was a disk problem and came to this conclusion w/o even an xray! She said I should have the neurosurgeon to set up the MRI; and according to the ER that was what I was supposed to go to her for. She was no help at all. So far the predisone is not working, It's almost 3am and I can't sleep. My back feels like its being compressed by a block of concrete and my leg hurts. After all I have been through with doctors I think I have developed "white coat symdrome" they make me nervous now. I know I need pain relief; I need something; I can't take much more of this. I can not get a doctor to belive that I hurt (except the er doctor). I can't shop in stores, because it hurts to walk. I avoid visiting because I hurt, I avoid people because I hurt. My husband shops for groceries because I hurt, I do everything I can do in the house but it hurts to do it. I have to have my house neat and tidy, but I hurt doing it, he helps me all he can with his full time job. I'm very lucky to have him-but he gets stressed with doctors here too. He wants me ok and I want me ok too, but I just don't know how to manage this pain on my own. I can't do it anymore. I will take all advice and ty for any I get in advance. I know it's rough reading such a long post, but please read it and give me some help before I loose my mind. :''(
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Comments

  • first welcome to spine health! :H
    i am so very sorry you had to go through all of that.
    that is amazing the way drs work these days. but due to all the new rules out there sometimes its impossible to find the right care which is very sad and frustrating.

    im really surprised they did not have you come right back in. i mean it was not like there was something in your system that wasn't supposed to be :? :? :? thats what im having a hard time understanding.
    we all know urine and blood work gets mixed up sometimes.
    the day before my surgery my protein was high. dr wanted it rechecked they did so and BOOM it was fine.

    what does it feel like when your walking?? is it constant pain? on and off pain?
    is it your whole back or just lower?? does it go away with rest in your leg??
    private message me and i will tell you my story with that and being dx with fibro etc...

    its so hard to find the perfect dr that treats our symptoms and looks like you had a good one. so sorry they discharged you. mabye you can fight that one???? just a thought.

    i feel ya on the hubby thing. mine also works full time plus some and he does it all. groceries, cooking , cleaning. and i think whoever is above i have that also or i would be down a creek without a paddle.
    stay here with us and will help you get through this tuff time your having.

    if it means dr after dr, test after test thats the way we have to do it sometimes ;) ;) ;) till we get answers ;)

    hang in there!!
    terri >:D< >:D< >:D<
  • Welcome to Spine Health. I'm very sorry that you have had such a rough journey and may have some hills to climb still. The key is, not to give up and get out of the car before you reach the top of the hill.

    As Terri mentioned, sometimes we have to fight and fight until we get the right doc to listen to us and do something to help us out. I know that a lot of docs adopt the mindset that if a patient comes in for an appointment and leaves and never calls back or makes another appointment, that obviously "they weren't as bad as they were trying to get the doc to think". They forget about the fact that we get tired of the runaround and sometimes feel it's easier to just suck it up than fight an seemingly never ending battle.

    Don't give in to that.

    If you hurt and know that things are messed up and that you need the attention of a neurosurgeon, then find someone to refer you to one.

    In the meantime you can come here and we will listen and do our best to help you through the day.

    "C"
  • Terri and haglandc ty both for replying to me. I do try real hard not to give up but sometimes its hard not to. Terri, if the dr. had of asked me to come back in I would have been back in that same day for a retest. There was nothing in my system that should not have been there. I was only taking the meds prescribed. C, you are right, I for one do get tired of the runaround..go here, go there, see this one, go to this one for that, we cant do that here, but u can get that done here. It just goes on and on. I will try very hard not to give up on finding a good dr. that will listen, but after yesterday, I'm at a loss as where to begin to look. If any of this sounds jumbled or such, please forgive me. I have been up for 27 hours straight, my back and leg are keeping me up..I can't sleep at all. Ty again. :)
  • Sorry that you can't sleep. Does ice help at all? I'm a big time ice fan. Heat always seems to irritate things more and ice just helps numb it up long enough for me to get to sleep before it wakes me up a little while later.

    A crazy thought. Is there anyway that you could possible talk to the ER doc that gave you the number to the PCP and ask him if he can suggest another doc. Let him know what happened and see if that will motivate him to help you find a better doc.

    I believe in the premise of "you never know until you try".

    "C"
  • Couldn't an ortho help out here? My ortho did my surgery I didn't even know about Neuro surgeons until I met you guys.
    I mean couldn't pains see an ortho instead for a different opinion? My ER doc sent me to the Ortho. Does that sound like a viable alternative?
    Pains, many here have been through exactly what you're going through so hang in there you will find help.
  • As long as it's an ortho who specializes in spinal issues. With as complex as PIMS condition is, it may be out of the experience or expertise of even that type of ortho. However at this moment just getting her to a doc who is interested in helping is the key.

    Usually orthos that work on spines stick to structural problems.

    "C"
  • Ok, I got a whole 1 hour and 15 minute sleep. After, I woke up somewhat I decided to go ahead and call the neurosurgeon's office and tell them that the PC dr. I saw yesterday, wouldn't set the MRI up for me and that they (neurosurgeons office) would have to do it. Anyway, I talked to them explained things and they said that my insurance would not approve an MRI set up by the neurosurgeon's office, it had to be a PC dr. that gets the MRI appt. Now, I have to find another PC dr. to go to so he/she can get my MRI appt. I'm starting to think this is all just a pointless game they are playing with me just to see how much one person can take! I can answer that for them, it's not much more. Now, I'm gonna have to manage to get the energy to go see another dr. and pay another co-pay just for a referal. This is just not right! I don't understand their logic at all. I just think they are all stupid and maybe they are all the ones that need to see a PC dr. As far as ice goes C yes, I use it until it starts to melt and wet my undies. I have used a heatpad until it burns me. I've tried hot baths, herbal supplements, massages, heat wraps and my tens-unit. Not alot works, unfortunately, but the ice does numb it up-actually that sounds good right now. I think I'll use some. Thx for the idea. Hopefully, the predisone will kick in soon. Thank you all for the advice. I'm so glad I decided to join this forum. I look forward to knowing all of you and making new friends.
  • Can actually be part of the reason that you are not sleeping. When I have taken the prednisone it always keeps me awake and stimulates my appetite. That part will lessen as you go down on the dose pack. I went through much of the same as you in my first two years. Only, I did not have a hard time getting the meds. That is all that anyone offered until I finally found my current PM. Don't give up! There is someone out there that can and will help you. It sounds like you will really do well to find a GP first. One that listens and you are comfortable with. Since they are the ones that seem to manage most referals and care they are important. Good luck to you and please keep us posted.
  • Ok, last night I finally slept some. I got a whole 6 hours in before waking compared to the 3-4 hours a night I was getting the last few weeks. I'm thinking/hoping the prednisone is starting to work somewhat. I noticed, last night, as I was lying in bed watching tv that I was able to tolerate the pain in my legs and back as long as I was laying down, but as soon as I got up to walk to the bathroom the pain was right back, that aching, tingling pressure I had been feeling for weeks! Does it mean the prednisone is starting to work since the pain is not as bad when I'm laying down? It still hurts to walk or be up on my feet. I really want to get up and do some things in my house but I'm so afraid to. I'm afraid I will aggravate something and the hurt will start all over again. Should I take this as a sign that I'm getting ok enough to get up and move around or am I just getting a false sense of security from the prednisone? I have 2 more days left to finish on this pack. How long will the relief last after I finish the pack or do I have to keep taking this stuff to keep relief going? Any feedback will be appreciated. Btw, I have 3 new doctors on my list to call today. Hopefully, one of them can get me in by the end of next week and get an MRI scheduled for me before I see the neurosurgeon in Dec. I need a PC doctor so bad.
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