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MD Decided That I No Longer Need Pain Meds

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Comments

  • Robin - I apologize to you. I was in a hurry and wanted to add to what terror had said previously about pain Drs and such.

    BUT I did not read your last post about coming home from work and not being able to do anything.

    I just got back home and read it and can't find the edit button.

    I sure don't want you to feel attacked and I am very sorry for my post coming off that way.

    I have been in your shoes!!! I found this site while trying to decide if living like this was worth it any more. My pain was not being managed very well. I could not put my own socks on or do much of anything.

    It was through the members support and the information/knowledge they gave me that I was finally able to stand up for myself to my Drs.

    I think some here are puzzled by what your doing, some think your nuts ;)and also some are worried not just about the withdraw effects but as I am sure you know being in high levels of pain effects our BP and can create other health concerns.

    I honestly could not do what your doing.

    I hope that even with this topic getting different views expressed about it that you feel supported here and keep us updated :hug:

    PS: Hi Deano :wave: & Welcome to SH!!





    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • oddly enuf i was on here because i was having a bad day with pain, but certainly remember bein in robins shoes and even though im unrepairable and still go through this more often than not, i remember when i was going through that, the horrible constant pain, couldnt sleep, couldnt even walk to another room. and drs not listening to me was the worst nitemare ive ever lived. i really dont know how i made it through that time, but i did. it kinda helped me today just to try to help someone else make a decision to see another dr. before it gets worse. nobody should have to go through that.
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  • Hi Robin,

    That's very nice to hear. I wish for your full recovery.

    Standards agreement and posting rules
    Please note that Spine-Health reserves the right to edit any messages posted or submitted or e-mailed to the Company and use them for content on the website or in other company materials. No e-mail solicitation or advertising of other companies, products, services, or web sites is permitted in the Spine-Health.com forums.

    Post Edited by Authority Member Liz
  • Ugh, you make me cringe hearing your story. I do not know how you can do that! You must be one tough chick, there is no way I could hobble out of the house, let alone to work with no pain meds. Doll, are you sure you shouldn't just find another doctor? I mean really, nobody, and I mean nobody should have to suffer like that. It is insanity. I don't think it is safe for you or good for your body or sanity in any way shape, or form. Your BPB has got to be thru the roof at times, your body has got to be freaking out hurting like that with no relief. Oh, I wish you would reconsider this whole idea of yours (I KNOW, I KNOW - it's none of my business) but it just sounds so terrible and painful and so very unnecessary. Dear Lord I hope you make it thru o.k.
  • thats kinda what i was tryin to say, i just hope robin realizes this. Ive been there, its a helpless, hopeless feeling and although i wish i wasnt on a bunch of pain medication, i realize there isnt a choice in the matter, and to subject yourself to that constant pain will only lead to more problems, depression and worthlessness is what i felt. Please see another dr. and hopefully he cares. they are out there robin.
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  • MrsHD, there's no apology necessary. I certainly did not see your previous post as an attack of any sort. I appreciate all your input.

    No worries. ;)

    Sorry I haven't been around to respond for the past several days. I'm now on about half as much pain medicine as I was when I started this weaning process a few weeks ago and my pain has been awful. By the time I get home from work, I haven't felt much like getting online. All I've wanted to do is to lay down on my heating pad and not move. This afternoon, my pain is about a level 9 and I'm finding it almost impossible to sit in my chair, yet walking around or standing is unbearable as well. I'm not sure I will make it to the end of the day. I may have to leave work early so that I can go home and lay down.

    Tomorrow, (Friday) I am scheduled to go back onto the "torture table" as I call it to get another 6 injections into my spine. I'm not even sure why I'm doing it since I didn't get any relief from the last set. But like I've said, I always try to do what the doctors ask of me because I never want to be accused of not trying to get off of pain meds. This weekend is pretty much shot for me because if it's anything like last time, my pain will be horrible for 2-3 days after the injections. And this time I'm doing it with half as much pain medicine. Last time, I was still on my full dose and could barely tolerate the pain after the injections, so I imagine this time will be worse. My lower back was SO bruised and discolored after the last set of injections and it literally felt as if my spine was swollen or something because it hurt so bad with any movement at all. I am NOT looking forward to going through that again.

    I had a really weird episode last Friday that was new for me. A friend of mine at work just had shoulder and hip surgery due to a car accident she was in. She asked me if I wanted to go for a short walk with her since neither of us can really walk very far so I said "sure." So we set off to this little boutique that's about a half a block up the road from the hospital where we work. After being in there for about 10 minutes, my legs suddenly started feeling weird. Then all the muscles in my legs started spasming at the same time and I felt as if I was becoming paralyzed or something. I told her that something was going on and that I felt like my legs weren't going to hold me up much longer. She helped me to sit down on a step in the store but my legs didn't get better like I thought they would. I've had leg weakness and numbness before, but never this suddenly, this bad, and in both legs at the same time. She asked if I thought I'd be able to walk back or did she need to go get the car. I told her "no" that I would try to walk back. So I had to hold onto her and walk VERY slowly back to my office. Fortunately, I made it back, but by the time I got there, both feet were completely numb.

    I left shortly after that to go home and I had to get one of the guys to walk me out to my car so that I wouldn't fall into the middle of the street or something. I even had trouble driving because my right leg felt so heavy and weak that it was difficult to pick it up to push the gas or the brakes. But I made it home and I went and got into the bed and hoped that the bilateral weakness would wear off soon. It didn't. My legs didn't "wake up" until about Sunday and then they began to feel normal again and I could walk without holding onto the furniture or walls. The strange thing though is that all the muscles in my legs were so sore because they'd all gone into spasms when it happened. I don't believe it had anything to do with the distance that we walked either because it was actually a shorter distance than what I have to walk in the hospital at times. When I came back to work on Monday, my legs felt ok.

    I think maybe when I was walking to the boutique, something must have shifted onto a nerve or something and then maybe lying down over the weekend got it back off the nerve. That's the only explanation I have. Has this happened to any of you before? If so, what did your doctor tell you about it?

    I sent my doc a message after I got home that night and then sent him another one Monday morning to tell him that my legs seemed to have normal strength again. He just basically said, "Glad to hear you're better. Let's just hang tight and watch things for now. Let me know if it happens again." So he didn't sound too concerned, so I guess there's no reason for me to be either.

    Sorry I write such long posts.... :D
  • Robin,

    My heart is with you. I have no idea how you are managing. You are strong beyond belief. I hope you find relief soon- somethings got to give.

    Very gentle cyber hugs & encouraging thoughts from me >:D<

    Feel Better,

    Julie
  • Julie said it perfectly. I can only echo what she said, Robin. :hug:
  • Robin I sit here shaking my head, I KNOW I could not do what you are doing and live to tell about it.

    Special prayers/thoughts going out to you today (fri) as I am sure by now you have had your shots. I can only image your state of mind.

    PLEASE don't push your body to deal with the pain too much longer.

    Find a new Dr :)

    I hope I am wrong & your shots are working well for you :D

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • Well I survived another set of 6 injections! (medial branch blocks) God it was awful! There was a different resident doing the injections this time while my main doc watched. Which is really fine...I understand that I go to a teaching institution and residents do a lot of the smaller procedures so they can learn. Most of the time, they do a great job...sometimes better than the more experienced docs because they're trying so much harder to be careful and do it right. The guy that did the injections this time wasn't quite as good as the woman who did them last time. He actually had more experience because he'd been in private practice for several years and had just started another fellowship to learn the interventional pain procedures. So I guess he was sorta new with the spine injections. Anyway, one of the needles he put in was apparently wrong and it shot pain into my right groin area like you wouldn't believe! I jumped when he did it (which you're really not supposed to do when they're putting needles in your spine) and he asked what happened. I told him that I was having terrible pain in my groin. He asked if that was the same kind of pain I usually had. I said, "I don't have pain in my groin normally, so NO this is not normal at all!" He had to pull that needle out and try again. It took him three tries in that location. The other five locations went smoother I guess, but I still cursed a lot and yelled some. LOL

    Afterward, one of the guys was taking me into the recovery area and told the nurse in there, "She didn't have any sedation so she should be good to go." The nurse said, "Yeah I heard." I said, "Oh no, you heard me yelling? I hope I didn't scare all the other patients." There was a little old man behind another curtain in recovery and he pipes up and says, "You scared ME!" LMAO!! I cracked up at that and told him I was sorry. :))(

    I also had a really good discussion with the pain management doctor before we started the procedure. I spoke with the resident first, but I think he wasn't quite sure what to tell me since it was his first time seeing me. So when the attending came in and sat down, I told him what I'd been doing as far as weaning down off the meds. I also told him that I didn't think that the previous injections had worked for me because my average daily pain levels had gone from 3-5 up to 6-8 since trying to wean off the pain meds. Plus my blood pressure was higher than it's ever been when the tech took my vitals, which was obviously because I was hurting so bad. (my BP yesterday was 148/96...my normal is about 100/60) He said, "Why are you weaning down so quickly? I thought I told you to do it over 6 mths." I said, "I just figured that I might as well get started on it because I don't see my pain magically going away at the 6 mth mark." He said, "So you're EXPECTING our treatments to fail?" I said, "No, I didn't say that. I hope that they will work because obviously, I'd love nothing better than to be out of pain." He said, "Well the reason that I gave you 6 mths as a goal is because I thought that would give us time to try a few things to see if they would work first. Getting rid of your pain isn't going to be an overnight thing or a one time deal. It's going to be a process that we have to chip away at until we find what works and what doesn't. But if you've already got it in your mind that nothing is going to work, then you're defeated before we ever start." I felt like an idiot after he said that. I've never been a quitter. In my defense though, pain can make you a really negative person. (as I'm sure you all know)

    He went on to explain to me again why the medial branch blocks are necessary. They're basically diagnostic and not therapeutic so of course they're not meant to get rid of my pain for any length of time. (which I completely misunderstood previously) They're meant to isolate the nerves that may be causing the biggest problems and after that, we do the radio frequency ablation of the nerves that are to blame. I thought the injections were supposed to give me some sort of pain relief like the ESIs and SI joint injections do. I guess I thought that since I didn't get any lasting pain relief from the last MBBs, that they were a failure and there was no point in delaying the inevitable by getting off the pain meds. I knew that the insurance company required two diagnostic procedures, which I've now done, before they would approve the RF ablation. The doc also told me that it's normal for my pain to be worse for a few days after the procedure because they're sticking needles in through my muscles and stuff and irritating everything. He told me this time to try and really pay attention to the pain in the first 6-12 hours afterward to see if I noticed a difference in the deep bone/spine pain because after the first few hours, the numbing medicine would wear off and the pain would come back. He said for me to not worry about the muscle spasms and pain from the injections, but to focus on my deep pain that I normally had.

    So I did that this time. I understood better what to expect and yes the deep pain WAS better for the first few hours. In fact, at about 11pm last night, which would have been 12 hours after the procedure, I got up to the bathroom and suddenly had the severe left-sided pain again that takes my breath away and makes me feel like I'm gonna pass out. So it does appear that I got relief from that pain for about 12 hours. But today, I'm hurting like hell, as I expected. Any of you who've had spinal injections know that the day or two afterward are terrible. Sometimes even a small movement feels like the needle is still in your back. I think I'm bruised again too, but I haven't taken the bandaides off yet since I wasn't supposed to take them off or get the area wet for the first 24 hours. I did drive up to the store a little while ago and just touching the car seat with my lower back felt like it was bruised. So it probably is...just like last time.

    Overall, I guess I feel better about things and maybe my doc isn't planning on abandoning me just yet. Maybe it was my fault for misunderstanding and assuming that he just didn't care. He told me that if my average daily pain is at 6-8, then that's way too high and that I need to take pain medicine when that happens. He doesn't expect me to suffer and ideally he wants to get me to the point where my average daily pain level is 3 or below without pain meds. He also told me that based on the problems with my back, I'll never be completely pain free, but if we can get it down to a manageable/tolerable level without pain meds, then that is the goal.

    I'm scheduled for the RF ablations on 4/13 and 4/27. They do one side and then the other. I have no idea why they don't do both sides at the same appt but I guess it's because they're doing three levels on me and it would be way too incredibly painful to tolerate dying nerves on both sides at the same time. (at least it sounds like it will be) I did some reading on the procedure and everything I've read does say that the pain is going to be a lot worse for a few days to a week while the nerves are dying. (doesn't sound very pleasant does it?) So I guess about the time I recover from the first procedure, it'll be time to do it all over again on the other side. :S

    So as of now, on my doctor's recommendation, I will probably add back one of the doses of pain meds that I'd cut out, at least until after the procedures are done. He said there was no point in allowing my pain levels to stay between 6-8 because it'll just get me depressed and I won't be as motivated to get better. And he doesn't want my blood pressure staying that high either.

    Has anyone had the RF ablation before? I'd love to hear your experiences with that. How bad was the procedure? (yes I'm getting sedation this time!) How bad was the pain afterward? Did it seem to work to get rid of or reduce your pain?

    Maybe I'll post a separate thread asking for feedback on this procedure so it'll be easier to see and respond to.
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