Alrighty my fellow cpers, I have lots of work to do now between Monday. This new PM doc that is giving me one appt to stabilize me wants to see me Monday at 9:50 a.m. If you believe, please pray for me especially Monday morning. I pray that this is my answer to finally receiving the care that I deserve.
I plan on drafting questions today and will post late tonight or in the morning my thoughts and bounce them off you. If I ever needed you more, now is the time.
So please, please check back in ---- there will be sweet treats for all. LOL
Hey Pepper, I'm glad you have this appointment. Since this is the guy who seems to be making the decisions and relaying them to your GP, I think this is definitely a crucial appointment.
I don't know if you are looking for suggestions/opinions, and if I'm interfering, just tell me to zip it, OK? But I have a few things that I would like to bounce off of you.
(And this also kind of goes for Sammy too.) I think you need to be very sure that you don't give this guy any mixed signals. I know in the past that you have said to your GP that you don't like being on the meds, but have no choice. While I completely understand what you are feeling and saying and the reason you have felt the need to say it, I think you have to be careful that you don't give him any reason to reduce, or God forbid, stop your meds.
Remember, this is just my opinion, and how you decide to go about this is completely up to you, but what I would say is something like........ "I didn't choose this life. I never thought I'd be in this position. And I feel that I have done everything that is in my power to help aleviate this pain. But in the end, the one thing that has given me even a glimmer of a semblence of quality of life, is the medication."
If he tries to tell you that medication alone is not the answer, then I would remind him of all of the other things you do every day to help you deal with the pain. Things like the meditation/relaxation tapes, the spa, the ice and heat, a healthy diet, accupuncture etc. And you have every intention of continuing these things.
And the most important thing, in my opinion, is to remind him that you have young children, who you home school, that deserve to have the best and most involved mom that they can. And a husband who is unbelieveably supportive, but who works hard all day and can not take on the reponsibility for the entire family, day in and day out. Let him know how important it is for you to be the best and most present wife and mother that you can be to this family that mean the world to you. Then say to him, "Is this really such an unreasonable thing for someone to hope for?"
Again, these are just my thoughts on the subject. I'm sure that the others will have many suggestions as well. I am not trying to tell you what to do, at all. I just want to help, in any way that I can, because you really do mean so much to me. If I'm off base, please just tell me and I will understand. I hope it helps a little. Gentle hugs and lots of prayers coming your way, CMP/MM
Last edited by cmpgirl; 08-08-2008 at 09:46 AM.
If I were in your shoes I'd mix what she has offered with the "quality of life at 5" plan we worked before, and, if you do that, IMHO you will have represented yourself as best as you can. Your husband must be in the exam room with you.
Please pay special attention to MM's guidance regarding not saying things like "I don't like to take meds." That is a defensive statement, and until this doc gives you a reason to be defensive, you do not have to adopt that posture.
Get this doc to agree that 5 represents an acceptable quality of life, then tell him that unless he does everything in his power to get you there, that nothing will have changed by seeing him. This doc needs to understand that immediate changes are needed to your pain therapy. Meaning, you need to be walking out of that appt with a solution in hand - hopefully that means script(s) for more aggressive opioid therapy.
I know you wouldn't do this, but never badmouth a doc to another doc. Even if you don't mean to convey it, what this tells the doc you're visiting is that you will eventually say the same thing about him to another doc, if he doesn't treat you right. You can always say your GP has done his best, and is now relying on the PM to handle the more aggressive treatment.
One special caution. And I have used this. Some specialists don't like to make a move w/o checking back with the referring GP. This can spell failure for any new therapy. If he seems to want to do that, just say "you know, he sent me to you because he trusts you, and what he wants is to follow your lead." I have been able to fend off further interference by an unwilling/incompetent doc by using this strategy.
If you can think of anything else I can offer, please tell me so Pepper. I desperately want to hear that Monday's appt was a winner, and that you walked away with script(s) that should help.
Final Word of Caution - Do not play down your pain, or convey that you are afraid of escalated doses. If you do that, you will most likely kill any further chances with this doc and your GP of ever seeing 5 on a regular basis.
Steve, I understand what you are saying. I have been told that he will not write any of my scripts. He is meeting with me as a favor to my GP and acting as an advisor to my case only. This is a one time meeting. My GP will continue to write all my scripts. I have also been told there will be no changes in scripts until my next appt in early September. I have been told that my meds need time to balance out on the 3 doses of 20 mg. My GP was very firm.
Right now I can barely focus my pain is bouncing all over the place. I saw a "5" for the first time but then I fly up to a "9" just from being on my feet. I am really starting to suspect that when that wave knocked me to the ground that it actually hurt me someone how. What is weird is I am now having pain in both legs.
As I said in another post.....I think going back to your surgeon is reasonable. He knows your case, has seen all your films, has been in your back several times and if anyone can see a change in the way things look it should be him. It certainly sounds like something has changed with your pain escalated as it has. You are a smart lady and you know you may or may not like what he has to say but at least you can get the MRI. Then if you decide to take all your records and get a whole new team you have the latest info.
The pain in both legs now.....that is an issue for me as well. I never had pain in the left leg until a few months after surgery. Now the pain is always in both legs but the right more than the left. They blamed mine on scar tissue but admit they really don't know. It has been frustrating because everyone looks at you like they don't believe you.
I jinxed myself...pain is a 7 tonight with meds
I think at one time you had kept a pain diary......maybe you can put one together by recalling the past week and continuing on through the week-end. Like someone else said, include the extra things like ice, hot bath, accupuncture Type it up and give him a copy to look at. Sometimes docs do better if they have something they can read, just the facts, no emotional component. Not that it isn't important.....I just think docs tend to sometimes dismiss us if we get a little teary while relaying important facts.....and when you are discussing YOUR pain and how it affects YOUR life, who among us wouldn't be emotional?
Good luck Pepper.
I will pray for you with all of my might. I want to add that being a mom af a 12 yr old, I have drilled across to my doc and openly played the sympathy card when it comes to being able to take care of him.
At his age, I am running him to golf, friends, to his dad's who lives a 4 hour round trip every week....the list goes on. I feel like if a doc cant see what we women go thru then they need to be reminded.
I broke down in tears to my doc this week. I didnt feel bad about it, and I just had given up. I think there is a fine line between being a huge drama queen, or hysterical, to being tastefully open and honest, and emotional about what your needs are.
Docs probably see everything, and crying and pleading, but if you go in with your pain journal, and documation, and the backing that you have been a stellar patient, I dont see how you can lose. You certainly wont come across as a seeker with your hubby there and your relationship with your other doc at all...
I know that when I feel the worst is when I KNOW I need to ask my doc to up me to help me be even productive. Not OVER productive, heck IM not even golfing right now, but just to friggin get by. And if you have a doc who cant help you at least have some form of a normal life what do you do?
You almost have to sell yourself, Pepper. Youre not being dishonest, or anything, but you want to put your best foot forward, and drive the point home. And if you have your hubby with you, I know this doc will listen to you. Youll be fine...You are such a good lady, youll be rewarded, and get the help you need. I dont see how you cant. So try not to stress too much, [I know when I want to ask my doc for more help its impossible] but I always find out Ive stressed for nothing.
Just hammer home the fact that you ARE the mom...the center of the home. Without you, nothing can be done and your FAMILY suffers as well.
Ok, Ill step off of my soapbox! Just BELIEVE, Pepper! Just believe that this time it will work out, and the Lord wont let you suffer. You are such a good lady.
Ill be there for you~Ask if you need anything else~. Sorry if this is repetitive, Im just exhausted. Hugs, my girl~
I just checked in this morning and did not see this post til now. I wanted to let you know that I am here for you and praying praying praying. Lord knows you just need a break! beliieve me when I say I understand about how you get down to a 5-6 and then if your up on your feet the next thing you know the pain is at a 9 and your nausiated and sick to your stomach! I get that.
I hope this PM will be able to make a good evaluation and come up with a plan that will best fit your life style as a home school mom etc. I don't have kids, but it would be of the utmost importance to be able to be there for my children. They are so inosent and vulnerable and they need us to guide them...well you already know all that...lol
I like the things that eveyone is suggesting and I am reading reading reading because I have my own issues with doctors at this time. Especially after the appt. with the neuro yesterday.
Hope you have a good day and if I think of anything else for you I will post. I feel I am having a tough time comminicating with doctors right now so my job is to pray I guess. GOD Bless ...
Pepper, I just feel awful for you, 5 to a 9. I cant stand that not knowing or being fearful if the pain will shoot up, so I feel for you. I am done my friend down playing & realize through these wonderful people the PM is new to me & I need to be careful about innocent statements such as "I dont like taking meds", it has no bearing at this point whether we like it or not, it is a must to function. I am upset that I will gone until monday afternoon but you can bet I will be coming in & getting on this computer to see how your appointment goes.
We both are due for some relief & need to be taken seriously. I am laying it on the table my next appointment. I am letting this PM know I am willing to continue other methods of PM but would also like to have some better quality to my life. Also he needs to know this is not just about me but about my loved ones & I am taking my husbund, if an emergency comes up then another family member who knows my suffering. No way am I going in with out being prepared. I know you will do the same. My greatest wish for you is to finally get some relief. You deserve it & it is time for someone to accomadate you. Everyone has given you great advise thus far. I dont think I could bare to hear you come on hear & say nothing was done, it would break my heart & I want you to have some better days right along with me, so you better believe you will be in my prayers & in my thoughts till I hear from you. You just be honest & let that doctor know you just want a life outside of pain, you are tired of suffering. I am with you all the way my friend. God be with you, Sammy
I have been told that he will not write any of my scripts. He is meeting with me as a favor to my GP and acting as an advisor to my case only. This is a one time meeting. My GP will continue to write all my scripts. I have also been told there will be no changes in scripts until my next appt in early September. I have been told that my meds need time to balance out on the 3 doses of 20 mg. My GP was very firm.
Sounds to me what we've said and speculated all along that this Doc is in over his head. On one hand, I admirer him for getting help and recognizing that it's not his thing, but on the other, I think @ some point he needs to get on the phone with this insurance company and see if some type of compromise can be worked out and get you to someone more qualified. There has to be some common ground. I have to admit that I don't understand HMOs @ all! Very said that in this day and age, something like this is happening. You are @ the mercy of this under trained Doc. I'm very sorry.
Nevertheless, it is what it is, I guess....Hopefully, the PM Doc will have compassion for you and make some good recommendations to your Doc. I assume he'll send your Doc a letter of recommendation(s) for the file. I think this is as much about CYA, as it is informational (for the 1st Doc).
I would point blank ask the PM Doc @ the end what he would do if you were his patient. This may be much different than the regimen you're on now.
Hopefully, things will work out for you. Keep pushing!
Here is my list - please give me any other things I should be prepared to talk about - tell me if I need to change wording.
I am debating about handing him the paper/reading directly from this paper.
What I want from this appt:
1. Assistance in finding a better way to manage my pain so that I don’t feel like a ping pong ball. At this point my pain is all over the board and I can honestly say I don’t know what it is like to have pain less than 5. I very rarely see this number on the pain scale and I hope that as a team everyone is agreeable to keeping me at a “5” and below instead of the daily pain being at a 7/8/9.
2. Assistance in reclaiming my life as a mother and wife. Without severe pain, I want to be able to:
- play board games
-take my children to a movie
- take a walk over 300 ft without severe cramping and burning in my legs.
- not rely on my children/hubby so much for cooking and cleaning (they are my backbone for lifting, bending). I am finding that to cook dinner and not bending at all my pain climbs simply from being on my feet. We tag team daily tasks - I simply can't do laundry or cook without assistance because of pain.
- be able to worship with my family at church but I can’t sit / stand for longer than 10 to 15 minutes before pain flies up to 8/9.
-be able to watch my children on the side lines playing with their other friends
3. Find out more about Spinal Cord Stimulator and if it would be suitable for someone like me.
4. Opinion about other nerve medications. It is my understanding that one should be on nerve medications for nerve pain such as topomax, lyrica. Because of my reactions to neurotin and elavil, my GP and two spinal surgeons all are nervous about trying it. Dr. Narayanan requested that I ask you your opinion.
5. Opinion on seeing a neurologist since I have nerve pain and to date have not been examined by one.
I have included a body diagram marked to depict where pain is located at on a daily basis.
*oxycontin 20 mg x 3
*percocet 10-325 mg. as needed for breakthru
*soma as needed for muscle spasms
*cymbalta 60 mg. per day
*Listed other meds for cholosteral, HRT
Meds I have tried in the past
*Lithoderm patches - did nothing
*reflan - helped a little
*motrin - helped a little but ate the stomach
*Flexeral - unable to function on - knocks me out and feel still out of it 24 hours later.
*Robaxin - helps when I have muscle spasms
*elavil - allergic reaction to - swelling of hands and feet - joint aches
*neurotin - allergic reaction to - face swelled as well as hands and feet - coughing, problems catching breath -
palemor - swelling of hands and feet
*narco - helped a little but not much
*morphine - vomiting of blood - hives
*dillaudid - vomiting and itching
*laying on right side - sends pain into orbit
*any motion involving movement of legs
*sitting with feet flat on floor
*riding in a car even with step stool keeping my legs elevated (15 min legs cramp and ache but after that start screaming with cramping, aching, and burning).
*walking more than 300 ft.
*getting up and down from chair multiple times
*standing on feet more than 10 minutes
*waking up after laying down for 3 to 4 hours – upper back is burning
*driving - leg collapses
Things I do to ease Pain Flares:
*Non-prescription medications (biofreeze, thermacare wraps, Tylenol)
*hot packs - very helpful
*heating pad - very helpful
*cold packs - sometimes helpful
*Walking out the pain - sometimes will increase pain
*Changing positions - sometimes helpful
*lying down - sometimes helpful
*spa – stretching/soaking - very helpful while in - on exiting pain spikes
*pool – have a lumbar belt which allows me to walk in the deep end of the pool - helpful while in - pain increases on exiting
*sitting in recliner with elevating legs - very helpful
*Counseling with Dr. Dill - some - simply provided reassurance
*Working thru PM workbook – self help books - some help
*music - some help
*relaxation tapes - some help
*Breathing Exercises - some help
*visualization - some help
*acupuncture - short lived 1 hour relief - 10 sessions to date
*resting - some help
*watching a movie - some help
*talking to chronic pain spinney buddy via email 20x a day - Very helpful
*chatting on chronic pain forum - Very helpful
*moderate chronic pain forum - very helpful
*prayer - helpful
*Art - chiropractor break up scar tissue - sent me into orbit
*nerve block - 8 hours worth of relief 1st time; 2nd time 6 hrs leg relief increased back pain
Please let me know if I have forgotten anything or need to change anything. All suggestions needed and wanted. Love ya.
Pepper, you continue to amaze me with your strength and endurance. I will, as always, pray for you but will pray with extra vehemence for the help you need from this doctor.
No one, but no one, should have to live with this much pain. All of us deserve to have some quality of life; if not, why are we here? Certainly it isn't meant for us to live in a cloud of continuous pain and suffering and doctors need to learn how to help us.
After reading through your last couple of posts (I was behind because of my own issues..not able to sit) I find that your first name is the same as my favorite cousins. And let me tell you she ROCKS, you both do.
Certainly, you are giving this PM all the information any doctor could ask for so if he is any good at all, you should get some help.
And with all the prayers going up for you, I have high hopes that this will go well. You've gotten some wonderful posts and there is nothing I can add but prayers.
Wow, you sound like me, I too have been suffering with severe pain for quite some time and am a mom and wife. Some days I too get so very frustrated and tired of the pain. I am on meds and quite frankly they do help but have so many side affects that I don't know whats worse, unfortunatly without the meds I cannot function and would be in bed all of the time.
Do write back and let me know how your doing.