i wanted to write this to you last night but was unable due to my stay on the island of bandment.But i am back now,and so very thankful as there are so many people that I had wanted to post to and just had to sit and hope they got some good advice, which of course they did.
Now, getting back to you.please post as soon as you can,as i am thinking of you at your pM appt and am truely hoping that you have a really positive outcome.remember, this is going to take a while to find just the right therepys and meds to finally get your pain under control.Patients is the key.I really wish I could have sent you off with a little pep talk root,but i think you already knew what to do.please get back to me asap.hope everything went well for you! Marcia :D

Root, i have been going crazy here just wating for you to let us know how it all went with the PM doc .i am hoping that everything went well.please post as soon as you can.If you didn't get really great news, we can discuss it,okay?Please let us know when you can.We all really care. Marcia

Thanks you guys for asking about me. I didn't write yesterday because I did not have a good time with the pain doc and I was very depresed. He was very mean and made me feel very bad about my self. He tole me that he knows I have pain but I shouldn't be on any narcotic pain medication at all ever. This is because I wrote on the paper they gave me that I am an alcolic. I didn't have nothing to drink for 8 years and I just quit by my self because my dad was a alcolic and I knew that was where I was going. So I just stop and have never took a drink since. The pain doc said an alcolic can never have a narcotic pain medcine. I ask him if he thought I was just a junky and making up the pain. He said no and that he knew I had pain and that the pain would get worse when I get older. But he said no mater how bad it ever got he would never give me a narcotic pain killer. He said he would do physical therpy and pain psycology and may be stiroids. I told him I didn't care about being on a narcotic but what about the pain and how would it work doing what he tole me. He said it wouldn't work as good as a drug but I should just get over it and lern to live with it. He said a alcolic can never take a narcotic pain medcine.

So I don't know what to do. My reglar doc put me on the hydro and I don't want to be on it or any thing else narcotic but I don't know what to do. I am going to see my reglar doc tomorow and find out if I should go to a treatment center and get off hydro but I am woried about the pain. My big hope is that may be I can be ok with out narcotic because that is what I wanted all along. The docs were the ones who tole me that I would have to take some kind of narcotic probly as long as I live. So that is where I am at. I will see my doc tomorow and I will do what ever he says. I don't know why they tole me I need narcotics and put me on it and then the pain doc was so mean. I think he could have talk a lot nicer because I never ask to get on hydro to start. I will let you know what the reglar doc says tomorow. I would be very hapy if I could go to treatment and be off narcotics but they have me very confused now and I don't want to hurt to bad. I don't mind hurting some but the pain doc makes it sound like it will be a lot of pain with out much help.

Sorry you had such a bad experience with you pain doctor. Doctors can be very insenstive at times. And one tells you one thing and one tells you another. It can be very confusing- I am sorry you are having to go through this.

My psych doctor has diagnosed me with anxiety disorder with agrophobia and prescribed Xanax- he said it was likely that I would have to be on this the rest of my life. He prescribes 1mg three times a day, but I only take 1mg daily. The addictionologist I saw (for the sub) said that Xanax and its "sister drugs" are like poison in a bottle and should be banned. When I asked him what to do about my anxiety...he said learn to live with...find ways to work through it...
That is kinda hard with three little ones. If I have an "attack"...I can't just go for a walk or hop in the car for long drive or whatever to "work through it" so to speak.

Well, I said all that to say, doctors can confuse you and I know how you feel. Hope things go better with your regular doctor. Let me know what he tells you and how he reacts to the pain doctors comments.

Take care and God bless,
michelle

Hey Root,I am so sorry you ended up seeing one of the "bad"ones.You didn't deserve to be talked to like that.Especially since you have had such a kind and caring GP all this time.it is quite a change.
You know, there is no law that says that you have to stay with this doc.You are doing the right thing in talking to your GP about this uncaring Dr.Remember what i told you before about if you didn't like or feel comfortable with the pain doc that you were going to see,you could always find another?For a dr to admit to you that yes I agree that you have pain but you just have to live with it is really a cruel statement.I was told this by my NS about six weeks after my spinal cord surgery.He didn't want me to stay on the narcotics for long because of "cognitive issues".He told me that while i know that you are suffering some really severe pain,long term narcotics just aren't the answer.My jaw just about dropped to the floor,as he knows what the severity of central pain syndrome is like.i couldn't believe he had just told me that.when i asked him just what he suggested in place of the meds he told me i needed to have that neurostimulator implanted.This is an option that should only be used by someone suffering with severe pain and has tried everything else out there first.there was no way i was going to have it implanted.that is when i had a long talk with my GP and we decided that I really needed a good pain doc. I feel very fortunate to have found one that really cares and wants to help me control my pain.you need to find a new one Root,thats all.not every PM doc is like the one that you saw,I promise.
i know how you are feeling right now,that things look really bleak for you at this point,but after you talk with your regular doc, you two can come up with a better plan for you.i sure hope that your insurance lets you see a different doc.i was fully prepared to walk out of my first appt and directly to my GP if i didn't feel the pain doc really wanted to help me.there are truely really good,caring pain docs out there root,who will really try and help you in getting some control over your pain,you just have to find one. Please keep us posted after you see your GP.we really do care about you and want you to be happy.take care, Marcia

Hi Michele and Marcia and thank you for being so nice about my visit with the pain doc. I went to see my reglar doc today and he is not a GP he is what I think they call Internlist Medcine. He is very kind and I think he cares about all his patients. Well, he tole me he thought it would not be ethical to not give medcine to a alcolic if he needs it. He remind me that he tole me from day one that what is wrong with me is not going a way and will probly get worse. We talked for more than a half hour and he felt very bad about what hapen with the pain doc. So he will be the one who will help me with pain from now on and I will have to see him at least once a month.

He said he thinks I will know what he is talking about if I take the medcine he put me on for at least one month. He tole me about hydro and why it is not good to take that for chronic pain. So I agree to take the medcine he orders and do all the other things he wants me to do. And then if at the end of a month I still think I need to go to treatment he will agree and let me go. But he said he knows there is no way I can not take narcotic medcine and the only way for me to know is to prove it to my self. I thought that was prety nice that he would let me make some decision to. So I have a pain medcine and a pill call Lexapro and Celbrex. Then I have to see the physcal therpist for a evaluation and see what hapens with that. The best thing is that he was so kind and took a lot of time to talk with me.

So that's my story for now. I hope I stop feeling the guilt and things work out but ether way I know they will. I will keep sending evry one positive enrgy and prayers.

Oh Root, i am so happy that you talked with your reg doc and he is taking care of you.Root, this is how my pain doc is.and luckily my GP also.I felt so terribly bad for you when i read your post after your PM doc appt.i was really hoping that you would find the help there that you were so desparetly seeking.My cousin, who suffers from fibromyalgia, is one of the unfortunate ones who has a pain doc who is exactly like the one that you saw.I wish ,just for one day,drs like that could spend one day in their patients shoes.then they would really understand just what it is like to live with debilitating pain 24/7,and they sure as hell would know how to treat it after that eye opening experience.

Can you please relax a little bit now?i know you were really stressing about that appt,and were driving yourself a little crazy worrying about it.now it is over, you tried him, he was an absolute a**,and now you are back with a dr who really cares about you.Just take it all day by day, and don't worry right now about what you cannot control,Just give everything that he suggests a try before you discount it okay? I am very releived for you Root.you really were on my mind, alot.Hopefully,you two will find a really effective combo of meds that will work. take care Root, Marcia

Hi Marcia. Thank you so much for your positive thoughts. I am taking them to heart and I am working on leting go and leting God take care of me. You know this was not the news I realy wanted to have to take narcotic medcine but may be I am just supose to learn some thing from this. I agree that the pain docs and a lot of the ones who deal with adicts should spend just one day in our shoes and they would be singing a difrent song. Thank you again for being so intrested in me and for caring.

Root, you sound so much better.You are right in just letting god guide you through all of this.Taking things one day at a time really sounds rather cliche',but it is so true.just know that you are in good hands with your doc.he sounds so much like my GP.very caring and a huge comfort in the face of some rather overwhelming situations that i have been through over the past few years.Maybe it was just ment to be this way Root.your most recent posts just sounded so sad.You really do sound a whole lot more relaxed.Glad to see it.hang in there,things will get better,and you know that I am always here for you,okay?take care, Marcia :wave:

Marcia I do feel better and not so depresed any more. I know things are working out the way they are supose to. Thanks for all your positive enrgy and for being my frend. How are you doing? I know you have lots of pain and i am just wondring if you are geting what you need. I hope you know I am here for you to.

Well, things could be better but i also know that they could also be much worse.I am finally at a point where i am feeling a little bit of an edge off of the pain now.there is no way that i would possibly be at this point if I had decided not to go to the pain doc.i am truely thankful that I was lucky(and it is pretty much a luck of the draw situation as you know)enough to find a good caring PM doc that is really concerned about all the seperate areas and different types of pain and totally bizarre sensations that i am dealing with.i have tried the stellate injections for the upper torso pain which unfortunetly did not work even just a little bit.But I had to at the very least, give it a shot. I had an epidural steroid inj about a month ago that didn't really work on the pain in my legs but it helped emensly with the spacticity in them.so i am going to have another ESI on thursday.any little improvement helps you know?the anti seizure med that they are trying,the Gabitril? i still don't really feel any difference yet as it took so long to get up to the thereputic dose of 20mgs as it makes me sooo sleepy,but that is getting much better now as my body is finally getting used to it.My other pain meds are being constantly rearranged and adjusted still until we find the right timing and dosages.Some days all of this feels just soooo overwhelming you know?I try to keep those positive feelings alive but sometimes it just dosen't work real well and we spend the day having a little pity party, and then I am good to go for another week.i don't want to lose that ability to have the positive thoughts as once i let myself to do that, i am screwed.You just have to have faith that eventually things will get better Root, without hope, we would all just be these walking depressive zombies you know? I really do appreciate your caring Root.it really means alot.You are such a genuinely caring person.I was really hoping that things would have gone so much better for you at the pain clinic,but things happen for reasons that we don't always understand.you just have to go with the flow and pray that things will eventually work out. Take care Root and know that I am in your corner here hoping that things continue to go well for you and you will finally find some peace.it already sounds like you are on the right track.As you already know, i am always here for you too.thanks for the caring and concern Root. Marcia

Marcia I am sory you have to go through so much. What you go through makes my picture look like a bed of roses. I am glad you have some caring docs because that makes all the difrence in the world even if the pain isn't that much better. I am sending special enrgy your way and I am praying that some how they find some thing that will help you more than what you have now. I hope you know that I do care about you from my heart and I am all ways here for you if I can help you some way. I am glad we are frends even though we never met.

I do think that things hapen the way they are supose to. I still wish I could not take a narcotic and may be one day I won't have to but I am so great full reading your story because I could be in so much worse shape. I'm sending you that energy and prayers.

Pain is pain Root.what we feel about our pain,and how we feel it,and just how it affects YOUR life is what is really relevent.Your pain might not be at the same level as mine, but just the fact that it is affecting you and your life,and what you are able to and not able to do is what is the most important.The pain that i was having before my first surgery(the C-spine fusion?)Was pretty bad,and i thought, "boy.it cant get much worse than this".Wrong.I was still working up until i had the first surgery,and went back to work about eight weeks after,still in pain but was fairly tolerable.things were still quite painful as unknown to me, I hadn't fused and was walking around with basically,a broken neck at that point.trying to get my NS to believe that something was wrong, was a nightmare in itself.it took about 7 months to convince the idiot that something was wrong.I mean come on, is it normal to have your neck actually 'crunch" everytime you turned your head?And the pain and numbness was back again too.The little bone plug in there was a boppin all over the place hitting different nerves.what a joy!After the surgery to place hardware, my pain level just shot through the roof,Nothing made it better,it was at a now almost constant(or what I felt at the time)about an eight on the old pain scale.Keep in mind now that when using the pain scale, with ten being the worst that you have ever felt,in comparison to what i HAD been feeling before, this was definitely an eight.little did i know at the time, the worst was yet to come.

while i was having ALOT of pain and really bad inflammation in the R side of my neck and shoulders,there was an even worse pain that I had been experiencing under the R shoulder blade that was absolutely unrelenting.It was a rather hidious,gnawing pain that was there 24/7,and no matter what i did, I would get at least a little relief in the neck and shoulders,but nothing in the shoulder blade area.i kept trying to convince my NS all this time that something just was not right in there.I kept asking him if it might be the hemangioma inside my spinal cord that was causing the horrid pain,I also kept asking him if the hemangioma had bled at all and he kept telling no.At this point, i was in a major depression, my pain was still at an eight, i could not go back to work and was basically just miserable.That is when I asked my GP to refer me to the U of M.

I HAD to have a second opinion on this as my NS was an absolute jerk,and no help at all.I went to the U as when my son was there for his transplant in 2000,he was so well taken care of by everyone there,and i felt that a teaching hospital is up on all of the latest procedures and would be the most helpful as i was dealing with something that could have huge ramifications if not treated correctly.By this time, my pain was devistating my life,and was running about an eight to ten, with the flare ups from hell.The first thing that the new NS told me was that #1,the hemangioma HAD bled,and was now taking up one third of the cord space at the C-7,T-1 area.#2,it was indeed,the reason for the horrid,gnawing pain that I was having and it needed to come out as if i had another ,even small bleed,i would become instantly,and completely paralyzed from the chest down.

One of the things that this NS told me was that after the surgery, I would have what he referred to as "extreme pain".i didn't think at the time that my pain could possibly get much worse than what i was already feeling.Oh my god, when an NS tells you that you will have extreme pain, he means EXTREME ,totally beyond description,feeling like you just want to die, pain!On a scale of one to ten, this was a definite twenty!I was on a dilaudid PCA, and i was constantly pushing the button,and was also having morphine bumps every hour on the hour.for the first two days in the iCU, i had absolutely NO control over the pain, i was constantly thrashing all over the place as the pain was just running amuck. i kept thinking back to the pain i had had in the past,and in comparrison to what i was currently having, that old pain that i had felt was at an eight to ten,was about a two when compared to what I was having now.

So you see, when you have a certain pain, and nothing to really compare it to, you think that it feels just so overwhelming at the time.I actually started really longing for the days before the surgery when I tHOUGHT that i was feeling the worst possible pain ever.If your pain is taking control over your life, if you cannot do the things that you once were able to,and are not getting the proper pain control,this is a really huge deal for you.No matter how bad you think someone elses pain is when compared to yours, if it is devistating every aspect of YOUR life,and making you just miserable,that is what matters here.i know for a fact that things could have turned out much,much worse than they did for me,and feel very thankful for what i still have.Don't ever feel guilty or bad for having pain that is less than someone elses and feeling devistated sometimes because of it.pain is pain.and the way it affects you and your quality of life is what really matters the most.If you are suffering in any way because of it, you have every right to feel bad.sorry this got a little longer than i planned,but you need to put your pain in perspective root,how YOUR pain affects YOU and your everyday life is what determines just how bad it is,not when you compare it to what someone elses pain is like.just be thankful for what you still have,as it can always be much worse.thinking this way is what really helps me the most in dealing with what i am going through.

I am very glad that we are friends too root.Keep on sending that positive energy my way, every little bit helps you know.I'll use it and send more right back at ya.take care Root, Marcia

Thanks for more of your story Marcia. I am so impresed with your atitude and how much courage it must take to keep on keepin on. You are one brave lady. I will keep on sending the positive enrgy and I hope one day they will find some thing that will realy help you. I am doing AOK on the new med and I am working on not feeling guilty. Thanks again for taking time to write so much. You give me a inspiration to work to.

Root - just checking in on you. So help me understand - I know the first Pain Doc was a jerk and out of the question so you went back to your internist who put you on lexepro and celbrex? Are you still taking narcotics as well? If not, what about withdrawals? I was a little confused with that whole part of it. You WILL find relief... sooner than later and it sounds like it's going to be coming soon. It sounds as though your doc has basically told you that you are going to have to be on narcotics for the rest of your life and i would hope that you will reconsider that option and just try to entertain a solution without narcotics. I feel if the pain management doc had been a better communicator - then you would have considered his recommendations but he ruined it by being such a jerk.

I think we've all had docs that just don't understand and are just there to make money. You are in my prayers and please if you don't mind, elaborate a little on what your plan is for this next month and then long term, depending on the outcome of these next four weeks. We are all here for you if you need us. Take care of yourself.

Hi Banker and thank you for writing. You have the story strait. The pain doc was very mean and probly the worse person I ever met. My doc put me on a narcotic, celbrex and lexapro. We agree this will be a one month to see how it goes. I don't have much pain but I hate the way the medcine makes me feel. Its not a high but it just makes me feel like my head is thick as if it isn't thick enough, lol. I am checking out some other things. So far I found 3 places that work with people who have chronic pain and adiction from it. I talk with 2 of the places and I haven't made up my mind yet. To tell you the truth I am very scared. I don't want to be on narcotics all my life and honestly I don't know if I could control it. Like may be I will like it and start wanting more and then what? I am afraid I will just be a real junky even though I do have pain. I don't know if I'm making sense but I'm trying to say that I am scared I will just get more and more adicted. Even on this narcotic I think about sneaking a hydro in. I don't know what to do and I am already praying and going to meetings. I'm going to talk to the #3 place and then make up my mind quick. In my heart I still beleve I could go with out a narcotic even though my doc is so good and he is defnitly not out just for my money.
You know I send positive enrgy to you all and pray for you so I hope you will do the same for me because I have to make up my mind or the nervusnes is going to be worse than the pain, lol.

Hi Evry One. I know you are all busy but does any one have any thoughts for me from my mesage? I could use some of your ideas if some one has some thoughts. Thanks.

Root - first of all, isn't Meredith just amazing? I truly love her. Secondly, I cannot imagine being in your shoes. I would have to say that if I was forced to take narcotics (I mean the kind that can be abused), there would be no way I could stay strong every single day and take exactly as prescribed. I think you need to talk to your doc and at the very minimum - do what Chef does. Go in every week and pick up your prescription... This way you won't over do it because you will only have one week's worth. If that's too little... then go in on a Monday and a Thur. You can make this work. I've got to know why your doctor has not discussed methadone since it's almost an automatic that it will be prescribed for addicts with chronic pain? It just doesn't make any sense. Now methadone can still be abused (it's what Chef takes) but for whatever reason, I think it's easier... but now that I think about it - I don't know why?? Anyway - the doc is going to have to have some kind of control over your meds or there is no doubt in my mind that you WILL abuse them. That's what an addict is - they cannot control pills... no matter what. Therefore, they stay away from them and attend meetings with CLEAN friends... Just like what Meredith is saying. I would go immediately do my doc and talk to him about your concern. Can you tell us if you guys have discussed using methadone? My brother in law takes it and is doing wonderfully on it. I know Chef is doing great. The thing is - you are going to have to hit those meetings as well... and I mean frequently. I swear, during the times we've talked I truly do feel like we are friends and my heart goes out to you so much during this and your history will all of this mess. Please write us back and let us know how you are doing... And by the way - how is your dog? Do you love him anymore now than you did before? Did I mention that I don't have the love for my cat that I should? She's mean... lol

Merdeth, I can't thank you enough for taking time from your own problems to send me a mesage. I realy needed it. I am so amazed at what you said about my enrgy waking you up. You probly know that I beleive in enrgy and that I think of God as enrgy. So I say I pray for people because most can understand that but I realy send a very thought full enrgy. It's like my conection to God and one or even more than one person. It is my form of prayer. What you wrote put so much ease on my soul. Things are not clear but they are geting clearer as to what I should do. I do go to meetings at least 4 times evry week but it is hard to talk about drugs at AA. I also have a frend who was the one who took me to my first AA and I trust him and love him like my brother. I will read and re read your mesage. I know with out any doubt that you have a power full conection with the Divine. Thank you again.

Banker I want to thank you to because you have your own hands and heart full of your own troubles. My doc talk to me about meth some time back but I don't want to go on a drug that might could be even harder to get off than hydro. I still have that beleif that I can do with out narcotics. So when I saw him last week that is why he put me on what I am on which is a long acting morphine because I think it would be easier to come off than meth. I am starting to realy bond with Luke. At first I just kind of liked him like he was some one else's dog, but now he is worming his way in to my heart and I kind of don't like it because I know he will go the way of Joey and I don't want to live through some thing like that again. But if I don't let him love me and love him back, then I will miss out on a lot of years of loving. So we are doing good and I have a traner who is helping me to teach him how to behave. He is smart but he is still a baby so I have to be patient with him just like he is with me. Banker I hope you are doing good and I thank you and Merdeth for caring about me. You know I am sending you positive enrgy and prayers.