To my Friends - Thanks and a couple more ?'s... - Pain Management Message Board

Lei · 10-20-2001, 09:39 AM

I am doing something wrong, I keep getting internal errors - maybe my post is too long - will try it in pieces.OK, I hope this doesn't post twice (there was an internal error).

Hi, everyone. A little calmer this morning. Sorry I kinda freaked out last night (on my other recent post).

PLEASE - may I get your your advice again? Your thoughts and experiences are SO important to me!I have a few more questions in this post. PLEASE FORGIVE ME.

Hey Rock, thank you for your reply. I agree with you so much about treatment we deserve, but there doesn't seem to be too many docs out there that do. I completely agree with Marge when she said in another post the crap we have to go through to feel what everybody else gets to feel everyday - just normal and just functioning.

I guess I just thought this doc would understand, since he was so willing to prescribe oxycontin on the first visit with no proof of anything, I figured he must realize how life-threatening chronic and severe pain can really be. Then he told me he really has no clue, he has never had pain. He said once in a while, he'll be watching a baseball game or something, and he'll remember that "oh, Johnny can't do that because of this or that causing him pain". Wow, that's a sudden epiphany.

Yes, thank you, Rock I am trying to be a little aggressive with him. As a matter of fact, the first time I went in, I said I'm tired of doctors giving one treatment of something, one script of 30 of something, then I'm on my own for the next 2 months before I can see them again, and if I'm in horrible pain, too bad, I'm on my own. Told him I needed a doc who would be with me every step of the way, and did he want to do that? Even when he did the treatment, and he said I can see you again in three weeks, and I said "ok", then he said "good, you're ok with that". I really thought he cared.

But it's like, he really expects me to get well, even "cured" with these treatments, and by some miracle I hope I do, but he seems not to have much patience if I don't respond, and I'm afraid he'll not believe me if I don't respond and ask for more meds or tests.

The last time I came in a little more educated about things because of all you guys, he made it clear that he's the doctor, and I said, "I know" and he said "I know more than you, a lot more".

I have never questioned him, I was just talking about getting an MRI, and that's when he said it might show something that may not be the cause of the pain, and then I would argue with him, but he's the doctor...etc. Since I don't know what else is wrong except degeneration, and I've been told the same thing, that many people have that with no problems, there is a good possibility that his treatments won't work. Gosh, I'm right back to we need tests to see more.

And David put some fear in me about these injections, so I will be asking my NP to order an MRI Monday.

I did something else yesterday. I had seen a real pain specialist back in July, who gave me steroid shots on one side of my neck, (because it was too agressive to be given on both sides) and saw that the NP was prescribing Soma and Vicoprofen, and Maxalt for migraines, and said he wasn't going to do anything with my meds because I was on enough.

So, shots only on one side, then see ya for a month for shots on the other side next time, even though it should have been clear the meds were not helping, that's why I was seeing him. I only stopped seeing him because I was at he end of my rope, ready to lose my job and my life, and I needed help now, with my WHOLE neck and back. So I saw the doc I'm seeing now. Anyway, I made another appt. with the other doc, but it's not till December. He's one of those that is so booked you just can't get in to see him. You really can't get anywhere very fast with treatment on one side and not getting in to see him.

Please see next post for continuation!

Leisa

Lei · 10-20-2001, 09:48 AM

Sorry, boy do I ramble.

I just really need to get things off my chest. I guess if I bore you to death, you can quit reading me!!

I'm a little embarrassed about all this talking. I don't mean to be a pest with all these questions, but I really respect your advice, and you can see that I definitely take your advice VERY seriously, and act on it, and because the pain seriously affects my life so much (as you all are personally aware of), I REALLY need your help again, PLEASE! (if you guys have the time).

Some day I know I'll be able to help someone else as I have been helped - it finally happened in another area of my life, and it feels wonderful to make a positive difference in someone's life.

Your answers make a difference in my life.

********************

I am reading posts on the back problems forum, and looking up words and terms in a medical dictionary. I read about a pain diary, which I kept, but it was words. I read about the pain scales, and Fredo had mentioned a standard form. Is there a website that has a this standard form?

DAVID please(or anyone who has been on methadone)if you could tell me a little about methadone, if there's joint/muscle pain, side effects, good pain relief, I could really use that info, because very soon I may ask to be swithced, and he may feel better about that, and maybe I'll get enough to get real pain relief. It sounds like you feel it didn't work well for you? Maybe you have a much higher tolerance because you've been in pain management for longer than I?So do you think it might work better for someone like me? Also, how should I ask for an increase for the oxy - like when I talked about should I go from 20, 20, 20 to 40, 40, or would he probably keep it on a tid schedule, and should I ask for 20, 40, 20 - is this reasonable and appropriate? He doesn't want to write a script for 3 narcotics - oxy 10's, oxy 20's, and msir. I don't want to be unreasonable and look like I am seeking anything other than pain relief, and I'm afraid to offend him or sound inappropriate.

I hope you have found something helpful for yourself, David - have you? Also, I'm going to put a link to an article you may be interested in in the helpful links thread. It may not be "helpful" but it is a good article about a study with all the opiates and it goes by "steps" - from weaker to stronger opiates.

See next post!

Lei · 10-20-2001, 09:50 AM

Dayna - Thank goodness for your answers! It really helps me. Maybe I can cut these in half and take 25mg to start? How are you doing anyway? I care about you, too. Oh, thank goodness some positive feedback, thank you! Marge, if you could let me know how much Elavil you're on, how much you started with, and side effects and how severe they are, because I may ask him to precribe a much lower dose at first. He's wrote for 50mg, start with one at bedtime, then in a week if I tolerate it , go to 2 (100mgs!)

And - how are you doing now? Please let me know! I'm interested in your wellbeing too, ya know!

Jane - still no luck in finding out what causes your horrible muscle-spasms? I don't know how you do it. Like I said, I guess we are just forced to - if we don't want to do the alternative. How is your pain? Is it improving at all?? My doc gave me 5 msir's a month, 15mg, to take one daily. You know, it never touched this pain. Should one msir 15mg make SOME difference? I couldn't handle more oxycodone.

********************
:embarrassment: I hope no one is mad at me for my extrememly lengthy and horribly detailed and boring posts.

But you have no idea the PEACE it gives me to be able to confide in you all, and the HOPE and COURAGE your answers to my questions give me.

Thank you all with all my heart.

You are TRUE friends. Leisa
(I hope all these smiles turn out, or I'll be even more embarrassed!)

OH, GOSH, GUYS, PLEASE DON'T BE MAD AT ME, AND I WILL SHORTEN THE POSTS FROM NOW ON. SORRY!

paI'min · 10-20-2001, 10:47 AM

Lei,

You know, just thinking- usually dr. are the exact opposit about running tests and such, I think it has something to do with covering their own rear ends, you know if they are running tests and documenting then they are trying to find the root of the problem not just throwing prescriptions at you.

My dr who likes to lecture by using other patients as examples, ( I think I mentioned this before) told me the other day that they have a new policy - you miss two scheduled appointments or test that they have scheduled for you and you get fired from the practice- (I have never missed an appointment for anything as my health seems to be my life! ) so unless it is a hmo type insurance that you have where he is afraid of losing a bigger slice of his allocated pie or you were referred to him by a primary and he doesn't have the authority (with out going back to the primary) to send you for tests then I just don't get it! is it just that he thinks these injections of his are going to handle it all?
I hope you don't mind but what exactly is your "story"? I probably just missed the post where you talked about your experience. do you mind sharing with me what got you to this life of pain.

thats it - no answers just thinkin' out loud!
take care now!
Marge

dayna5 · 10-20-2001, 10:48 AM

Lei,

First and foremost, you must never, ever shorten your post. You have never posted a post that I have felt has been too long or "greedy" with your words. I love (really love) hearing what you have to say. Everyone loves to be needed and I, and I am sure everyone else, loves to hear how much you appreciate us. Noone understands what I do on this board. (family and friends) They ask all the time who I am writing to, or reading. Think I am writing email, I guess. Try to explain that this is a posting board. Still don't get it. How about a "venting" board, then their eyes light up...oh...I see. That is what we do here. We vent, we cry, we complain, we share, we learn, we also learn to love others, even people we haven't met because they share things that most don't...pain.

It is so hard to explain to someone who asks what's wrong with you, and you reply, "back hurts", than they look at you, again...like because we feel it every day, we should get used to it. When i used to get migrains everyday, people really thought that I should be used to the fact that it was a normal thing...just except it, what's the difference, you have one everyday. Well guess what??? Whether I have one once a month, or twice a week, or every day....they still hurt. Yes, we do sort of get used to them, and except the fact that we have to live with it, but it doesn't change the fact that it HURTS!!!!!!!!

Lei, you are so sweet, that people can't help but care about you. Actually everyone here has a personality that is special. (like the rock, rocks this place) And everyone turns to David, because he has so much experience and always takes the time to share it. Everyone (not meaning to leave anyone out) has a quality in here, that makes it work. Kind of like a family. Now everyone knows I have five kids, but you would think that they would be sort of alike, but weird thing is, not one of them is. Some of them are very serious and caring, one is a wise a*#, but he keeps us on our toes, the other is funny as hell, but they all make this family work...just like this board.

Please don't ever apologize for being you and needing help. Cuz if we all didn't need help, we wouldn't be here. So don't, please don't, ever change cuz we love you the way you are. Post three pages if you want, cuz you are funny and cute and I love to read what you have to say.

Sorry for the long post, Just kidding,

dayna