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How do you deal with the pain I feel like I want to

ellineellin Posts: 188
edited 06/11/2012 - 8:27 AM in Back Surgery and Neck Surgery
Hi all, I am in 10 plus pain. Many of you know my story about all the injections I have had trying not to do the surgical thing. I have gone to 3 pain Dr's only to get injections because you are only allowed so many. My hands show the signs ie thin skin, brusing my hands look terrible. Had the nerve burn worked well, for 3 months until a hospital stay for 15 days in a bed not even made for a dog. My org. Dr. said can't do anything until the 13th of Feb. oh friday the 13th whoo whoo. I had this other Dr. PM that I am to go to get a 3 level facet injections done this wed. but, I am out of meds that I have had for a long time and went to see this Dr. because he will not give you meds without seeing him I pay $50 copay and he tells me no more shots nerve burn and he will do one side than the other in 2 weeks I am like no I want the facet done he did not know that I go to my org Dr. on the 13th for the ablation and all I wanted was for some relief until than. Well, than I get perocet I am like no I need oxycontin he says no way. So, if I did not go to get meds my appt. would still be on for the facet injections. I am in the worst pain ever. Not even wanting to live like this. My friends all are gone due to all my pain issues and all I have now is my folks who are not in great health and when I tell them anything they get sick. If I go to er well they will give me meds IV and than what happens tomorrow. I am off work until this Fri. what a 4 day off time I am having. I am so so very tired of all of this at 49. My job well bending up and down which is not good I know. SO, Question for you all what do you do in the meanwhile. My surgon says not a surgery candit because full of arth. I have 5 her. dics in the lower back middle never scaned 3 in my neck stenosis my left leg goes numb. I have to hang in until the 13th how do I do this?? PLEASE HELP


  • By the way I have tried the ice, heat patches OTC and lidoderm, gel rubs, bengay you know all that stuffand get this one the Dr. who canceld my injection today well, I went in his office with a back support on and he tells me never to wear that due to it weakens the muscles. Also this nuro surgon told me about a spinal cord stimulator maybe I will need to try that because this pain is not good. How do you even funtion with every day stuff with pain like this??
  • I'm so sorry you are in so much pain. I'm trying to make sure I understand your situation. You go to 3 different doctors who don't know about each other so you can keep getting more injections than are safe? Does only the one doctor give you meds (or do they all?)

    I hate to say more until I understand fully.

    Take care,

  • I got the meds from my primary Dr. about a year and a half ago and do not take them because I do not like to take meds. they make my stomach sick the next day I feel like poo, but due to all the pain I have been having I have been taking them and now I was out. So, I needed some pain pills to get out of this 10 plus pain range. The other issue is this I went to a nuro Dr. years ago because my leg went completly numb at this point I am scared he says the injections will not help me that he can refer me to a surgon. I was so scared mind you I have a major fear of become paralized. I did not go to the surgon I went to a PM dr and did get the epideral injections only held for a week got 3 shots than I am in pain and he would not do anymore because that is the limit for 6 months so I go to another Pm Dr. and not tell him about the number one Dr. and he is a nice guy he does 2 s1 injections and 3 facet injecions total of 5 visits I think the s1 injections were 2 levels both sides and the facets were 2 levels both sides so lots of injections I know well than it comes time when the pain comes back and now I get the ablation done on the lower back than the neck injections one time 2 or3 levels than the nerve burn end up in the hospital for a bad headache ok 3months no LB pain feeling great and blam go to the hospital with a appendix taken out and 15 days later I am back in pain so, number 2 Dr. says he is done so, off I go to number 3 Dr. 2 times 3 levels 6 shots each time. I know what your thinking what am I doing. I know all the risks but to me the risk is better than the pain. Ok than off to the nuro surgon differnt one than years ago and this Dr. tells me that surgery will not help me because of all my arth. I am just so tired of this pain. My life is 0. He did tell me about gettting a spinal cord stim. but I am a bit scared about it. Now I am to the point of I dont care if something happens because I can not live in this pain. Nobody could nor should. My #2 Dr. said he will do the nerve ablation again Feb 13th so in the mean time I was trying to get some relief with the injections which was canceled. Sorry so long. Hope this makes more sense to you.
  • Oh my, it seems that with all the pain you have been making fear-driven choices?? I know you don't want pain, but what do you think will happen when the effects of all these injections (sounds like way over the safe, yearly limit?) come crashing down on you?

    You know, I guess, that if the doctor's found out, you would be thrown out of their clinics and blacklisted if there is such a thing? Then you would really be up a creek.

    All I do know is that when you are feeling a 10 level pain, you honestly can't think straight. I know I couldn't. I wish you had one really good doctor you could count on instead of all this doctor shopping. You've been making the decisions for these doctors by deciding how many and what you will agree to. And when they disagree you go to another doctor?

    If you can get this pain calmed down and you can come to a place where your mind will stop freaking out, you really need to find ONE doctor you like, one doctor you trust. And admit it all so you can be treated appropriately.

    For me, injections did not work and were so painful, there is no way I would have run around trying to get more!! How odd! Did the injections not hurt you?

    I just spent 10 days in the hospital in December in 2 different visits, and the first time, my bed was awful. The 2nd time, much better, so I understand about hospital beds and back troubles!!

    I wish I could help, but all I can really do is support and pray for you. I am hoping with time your back will calm down. Can you shut your life down even more and just relax and give a few weeks? Or have you done that?

    I have a spinal cord stimulator and it is wonderful, but I am scared for you to go forward with that until you come clean to one doctor with whom you trust. Are you able to spend some more time online researching the different options you have for the future and the things you have done in the past so you know where you stand? For me, education is power and always makes me feel better. I feel that some people just tell you what you want to hear, and I demand - tell me what I need to know, NOT what I want to hear.

    Good luck and take care,

  • Well, listen I get differnt opinions from 2 differnt nuro Dr's and one is from a high standard hospital. I did tell the nuro Dr's what I have been doing. What do you do go to fifty million nuro surgons until you find one that tells you what you want to hear. NOT!!! Why so many Dr's tell you diffent things many some want to make money??? This nuro Dr. I went to he could have told me he wants to put a cage in or? but he and his team Dr's (thats how mayo works) not sure if I was to say that sorry site if I was not) told me that surgery is only 50% succuess rate and that is terrible I was thinking but, he told me no surgery is going to help so, yes I should of let him refer me (well I do not need a referral due to PPo Ins) or maybe this is how this hospital works) to try the SCS. As of your questions of the injections do they hurt well you answerd your own question why yes who could get a injection and it not hurt???? silly. Well, getting a bit upset over this maybe I took your reply wrong??
  • One more thing. You tell me if you went to a Dr. like me for treatment and you were still in 10 plus pain range after 3 treatments and the Dr. said ok now ablation and you say ok and than you go back to a 10 pain range you would say oh ok Dr. I will stay and be in pain for another 6 months until you can do more injections or ?? I have tried it all even PT massage therapy what the heck is left???????? Now went to nuro Dr and he gives me a differt opinion than the first it will make your head spin. Guess you were lucky that you got you SCS and it worked can you imagaine if it did not what would you do next more surgery??
  • the only person I did not tell about my injections was the PM Dr. Nobody seems to know what to do to help me. My primary Dr. know all of this he is the one who orderd the MRI If I can be kept out of 10 plus pain rage from ONE DR. that would be great but that has not happend to me. What I am going to do is go back and talk to the nuro Dr. who wanted to get me over to the dept. that does the SCS that was just freaky to me. I must give in to that and give that a try. I hate getting all these shots!!!!!!! People look at my hands and my boss is like what happend? I just can't live in this pain level don't you understand this??????
  • One more thing before I go offline. Cheri I see you had surgery? You now have perm. nerve damage and have to be on meds and limited on so much in your life, is this all due to the surgery you had?? If yes this is why I am so, worried about all the differnt opinions with me relating to surgery. Yes, their will me millions of Dr's who will operate just for the heck of it and than some Dr's who will tell you that you will not have relief from surgery why is that?? Who do you trust?? The one you feel comfortable with?? That could be the wrong one tho. Well, have to go thanks for getting my mind off my pain for a while. I wish all of you a pain free and happy life each and every day. G-D Bless
  • will your primary dr prescribe you adequate pain medication to get you through until your next NS appointment/procedure?

    That is how I got through this last year up until my surgery, but I was only able to get strong enough narcotics because I built a relationship with my PCP and he felt comfortable managing my pain.

    Lets face it, alot of pain patients Doctor shop to get the narcotics and so Dr's have a fine line between treating pain & playing detective as to who is abusing. (I know this because I was a manager at a big chain pharmacy & helped "catch" many patients abusing the system).

    Look, I don't think this is what you are trying to do, I believe you are in pain, but I agree with Cheri, if you do not stick with 1 doctor you could be blacklisted.

    The main issue at hand is getting your pain managed so I would start with the doctor you trust most & go from there.
    It doesn't sound like the injections were giving you much relief anyway. If they were lasting less than 3 weeks, its time to do something different.

  • I really hate that you are in the position that you are in. I know how hard it is to get one good doctor. I went for a second opinion today because I just didn't think my surgeon was taking my shoulder pain seriously enough. I didn't go in and ask him for anything just explained my situation and of course he has a different course of treatment that he wants to try than my original doctor. I don't know about everywhere else in this country but in my state Doctors now have access to a database and they can look up any narcotics that a patient has been prescribed and by whom. My PCP warned me when I was seeing a Neurologist and my Orthopaedic surgeon and they were both prescribing narcotics and making me look like I was doctor shopping to any doctor who did not know me. So I stopped taking all of it. I don't want to be blacklisted should I ever need another surgery. That doesn't sound like your issue though. I think I've read enough of Cheri's posts that I can sort of enlighten you on her condition. Cheri went through a lot of pain until if I'm not mistaken and had surgery didn't happen soon enough and lead to her permanent nerve damage which happens to MANY people who put off surgery or like you and Cheri can't find a doctor who will agree to do it. The good news is Cheri is feeling great now because of her SCS implant. She has her life back. I wish you would at least seriously consider it if it is being offered to you. There are plenty of success stories on here about the SCS implant. Just think about it. OK?
    Oh and one more thing. I know that Cheri only responded with your best interest at heart. She is kind and caring and just doesn't want you to hurt yourself. That's why she was concerned about the number of injections you are getting. And I have to agree with her. That's a lot and there has to be another way. Maybe the SCS is the answer and you will never need another shot the rest of your life. I wish you the best and hope you will be thinking about giving the SCS a try. If the trial doesn't work out they will remove it. You may find it an answer to your prayer for a pain free life though. You'll never know unless you try though.
    Best wishes,
  • dilaurodilauro ConnecticutPosts: 9,865
    with pain levels of 8 and above, you shouldn't even been trying to take care of this at home. People with pain levels over that should be going to the Emergency Room and possibly be admitted.
    It is unsafe to do anything else.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Today I feel better than yesterday Thank G-D pain level at 7 I must let you know that I have only got 2 scripts in 3 yes 3 years so, I do NOT ask for MEDS. So, now you know how I feel about taking them. Like I said in my post I do not take meds because it makes me feel sick and the next day I feel blah. I work with hospice pt's all day I need not to feel under the ? Now that we have that all cleared up. Maybe if I took meds and not shots I would have been an addict who knows?? I was just looking for the thing I know would help me and did not care of the problems I would have down the road. When you are in PAIN and I mean PAIN you will do what I have done. Ok enough of that.

    Dilauro has it right. I should of gone to the ER. Well, hope you all have a great day today. I am going to have a massage today and funny thing my poor mom comes over and she is not that well, because I was crying so on the phone telling her I just wanting to end it all I can't take this pain and she knows how icy-hot patches give me some soothing feeling so she brought over 5 boxes of differnt brands for me to try mind you I have gone threw 3tubes of bengay 5 BOXES of icyhot patches so I stuck on this wallgreens brand and the big Exlarg patch and it was heaven. I gave all the others back to mom and she is going to buy me more wallgreens brand. Can you even think of wallgreens brand helping like it did. WOW well, now in 7range so can think better and deal with life better. G-D Bless
  • I just got done reading everything here, and what strikes me the most is that you need help, you can't go on like this. Everything needs to come to a stop and you must start all over again by choosing one neurologist to follow up with. I agree with everyone that said you shouldn't be maxing out on injections. It's apparent that your pain is out of control and you need medication to stabilize it. What pain medicines have you tried in the past? You must understand that there are many your doctor can have you try out. There will be a period of time your body must adjust to it before calling it quits. You can't go on having injection after injection especially when it has to do with steroids, they can cause so many health problems like osteoporosis, diabetes, heart disease, etc. if you take in too much. That is why doctors limit the number of ESI's you get in one year. Please understand what you're doing is dangerous and we all have your best interest in mind.

    So please, take control of this situation. If you go back to a pain level of 10, go to the ER, get stabilized, and fill whatever script they give you. Follow up with 1 neurologist. If he doesn't prescribe narcotics, have hime refer you to 1 pain specialist.

    Have an open mind, there are many long acting medications that will keep the pain under control throughout the day that won't leave you zonked out. I use Fentanyl patches and they are 80 times stronger than morphine, and I never feel "high". I feel normal on it and comfortable to drive. Also, your doctor can give you a combination of meds to deal with certain aspects of your pain for example, a muscle relaxer, anti inflammatories, nerve pain meds (neurontin, Lyrica), a short acting medicine for breakthru pain (vicodin, percocet, oxycodone) and lastly a long acting narcotic to control the pain all day (Fentanyl patches, oxycontin, morphine, methadone, etc).

    Work with your PM doctor and neurologist to get a handle on everything. There is no need to be going on feeling this way, and we're just trying to help you. Just because someone takes pain medicine doesn't mean they are addicted. All of us take medication so that we can function and have a better quality of life. The meds keep me from having pain crises that land me in the hospital and it allows me to get up in the morning. The chances of a person with chronic pain getting addicted to pain medicines are very slim.

    Well, I can't think of anything else to say other than I hope you consider what we have advised you. I really do want you to feel better. Take care
  • Well said. Ellin I hope you read that post. It' full of good objective advice.
  • Wow THANK YOU for all that info!!! It really puts it all together for me. Today I am at a 5 been taking the percocet only problem is I could not sleep. Do not know if this is a reation to the med. or just me. My Dr.#2 (Pm) I like talked with the office and I am going to do the ablation on the 13th the Dr. did want me to go to he friend Dr. also a PM to get me meds because he does not give any. So, my plan is to have the ablation done #2 go to this Dr my PM wants me to go to and if the pain comes back again I will try the spinal cord stimulator. I am going to not have any more injections. I cant stand them for what they have done to me. I am border diabet. have high blood pressure and my skin is so very thin and cuts and bruises all over. I am done done done!!!!I remember when I had a surgery and the nurse went to start the IV and the needled bent because my skin was so THICK now paper thin. Ok well, this is my plan and thank you all so much esp meydeu for all that information that just put it all together. You are a very kind woman to take time to write and read all this. G-D Bless you all.
  • That is a great start. I hope you get a good result from the nerve ablation. When life spins out of control, the best you can do is simplify. Please keep us posted on how things go for you. :H

    Thanks Tonya. Your posts always hit the mark B)
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