Medication Nightmare, Feedback Please

Discussion in 'Fibromyalgia Main Forum' started by lilac123, Jul 13, 2008.

  1. lilac123

    lilac123 New Member

    Hi All,

    Haven't posted at all lately but check in most every day.

    I will try to keep this breif but am wondering if any have had this experince.

    I was diagnosed in 2004 with FM,Degenerative Disc Disease, Osteoarthritis, Coccyndia, etc. etc. some i'm not remembering at the moment. Besides, the FM symtoms the majority of my pain is in my low back, hips and legs.

    I have tried everything from water aerobics thru the arthrits foundation, chiropratic is how this all was found when he looked at xrays and said he couldn't help me. I went to physical therapy so happy to have something to try, that was not the answer and would set off my FM when they started pushing too hard. So, in the beginning my PCP sent me to a rhuemy. He has always managed my pain meds which were 120 mg AVinza, hydrocodone, and generic flexeril.

    Well, stupid me had blood work done by PCP and he is handling other things, like high cholesterol, depression etc. so i thought it would be easier if he could take over my pain meds. WRONG!!! Both doctors said this would be fine and I could see the rhumy less often. Oh, rhemy sent me to pain specialist last yr who orderd the PT and when that didn't help said the only thing left would be an ephidural or surgery.

    The "recipe" of meds has been constant for 4 years now. I voiced to both docs I would like to get off the Avinza eventually. The rhuemy said if I did it would have to be gradual, 120mg down to 90mg, to 60mg, etc. I saw my PCP and we decided to change the hydro to oxycodone for the breakthru pain. I went to pick up my prescriptions and the Avinza was written for 60mgs. That cut it in half right away. The oxycodone was prescribed one every 6 hrs as needed. That was a joke as one was like taking a baby asprin for me. I called the office multiple times to let him know this was not working. No phone calls back ever!! So, I continued taking them as I always have with the hydro.

    Sorry for the long post i'm almost done. The problem is when I thought my refill of the oxy was due last week, he cut it off and said no it's too soon! So, I was left with only the 60mgs of Avinza and the flexeril wich i never really take too much as it makes me to weak and tired.

    Besides just the problem of cutting off my meds, the office personell was so degrading and rude to me when I was calling trying to find out what I'm to do and trying to explain all this to them and having to "justify" my pain over the phone. My vitals show my level of pain, blood pressure goes way up, pulse, heart rate. They said, all they could do was make me an appt to see the doc on MOndya. I am not sure my nerves can handle seeing him as I have so much to say and am so angry.

    Of course all of this just sent me into a flare and my stress level from having to deal with them and never getting a returned phone call was giving me so much anxiety.

    Anyway, I called the rhuemy's office to let them know what kind of problems I was having. The gal was so nice and understanding and the got back with me right away. I made it clear that I wasn't looking the the rhuemy to prescribe anything just wanted to them to know and get an earlier appt or a referral to a pain clinic or something. (may try the ephidural as a lst resort.) Really can't afford it and have not heard very good results for most people.

    I get home friday and there is a message from a Doctor who looks like is with a "Behavorial Health Systems". I have no idea what in the heck this means! I am so lost and confused and upset that we are treated this way. I have read or heard horror stories but I have always followed the "rules" and didn't think I was doing anything wrong. That is how they are making me feel like I"ve done something wrong.

    Just ranting and wanted to put this out there and see if anyone has any feedback.

    Again, sorry so long. Best to all and Peace.

    I've been praying alot!!!

  2. simonedb

    simonedb Member

    I hear you, I have always disliked having to be at someone else's mercy for medication. I understand why the system is that way as some people abuse it etc but for people who are responsible about it and really need it its really the luck of the draw (with docs).

    I too have a hard time having those conversations with the practitioners about these things and fortunately I lucked out in that what helped me with my pain my primary has been willing to prescribe for me(darvon) but she doesnt seem to like it I don't think as she just always cuts my visits short, doesn't want to talk about things...
    I have private ins. so I just found other docs to consult with too in and out of her system when I want to explore other options. Pain and its rx make a lot of people and docs uncomfortable.

    At our clinic/hospital they have to ask you to rate your pain every visit and they are supposed to work with you to treat your pain, its a guideline there. I would think it is at most mainstream places. If you have never given them any reason to distrust you I would try to have the conversation calmly, maybe someone can practice with u and give you feedback on how to sound rational and to get your point across effectively. Its a shame we have to worry about that but so it is. I recall at another listserve some years back, harvardbrainchat spinal issues, there was a thread going for a long time with advice on how to talk to docs; ie dress professional but not overly flashy, have an intellectual book with you in the waiting room, stay unemotional, get to the main point in first couple minutes etc
    anyway, I have to go soon but hopefully other people will come along with ideas.
    I decided just recently after reading some posts here to review pain meds and try low dose naltreoxone for awhile instead to see if it will help pain, fatigue and immune system. I am a little nervous about it but now is a good time because not in a bad flareup with spine; the test will be the next time my neck gets tweaked if I can handle the pain or if I can find a non-opiate I can tolerate if its not so can stay on LDN too. you might want to do a search on it like mamadoves posts. I went to a dif doc than my primary to try this and if it works I will tell her at my physical, but if it doesn't I dont want to mess with my regular prescription for pain yet.

    I have some similar neck pain as you and I know it can be the worst when its bad.
    [This Message was Edited on 07/13/2008]
  3. lilac123

    lilac123 New Member

  4. Janalynn

    Janalynn New Member

    So you can get in tomorrow? I'd get in there as soon as possible. Are you totally out of your medication? That can't be good -

    The not returning phone calls is what really bothers me. When doctors that change doses/quantities or medications without discussing it first - well that doesn't seem right.

    I would very calmly and nicely say that if he is not going to help control your pain that you do need a referral. Then I would ask if he could continue to prescribe something for you in the interim.

    I'm really sorry that you were left in that position. Gosh this kind of stuff just makes my blood boil.
  5. lilac123

    lilac123 New Member

    Hi again,

    Short update here as I'm still a bit off balance mentally, and physically yet today. I haven't taken my Avinza yet and am waiting to gather some more infor before I do.

    I did receive a call from the Behaviorial Health Doc this a.m. and I explained my situation to her and she told me some of the things they do at her office. (Bio-feedback, some kind of electricall things she can hook up and see where my pain is and to what degree???) I made an appt for THurs with her. I am open to all kinds of treatment if something will help. I just really don't need to run up any more bills. Still trying to pay off the PT that wasn't covered.

    In the meantime I called a Doctor in our area I had learned about here on the boards. I met a lady who lived in my area and she used to see her. She is an "Integrated Health Center", she specializes in female health wellness and is also and M.D. or Internal Medical Doctor. so, could do rx meds if thats what it's going to take as it always has so far or it sounds like she gets to the root of the problem as far as the muskoskeletal problems. (????)

    Anyways, gives me some hope. I just don't know about seeing the PCP doc today at 2:30. My aunt wants to go with me and be a witness and also help me communicate my concerns of lack of treatment and take notes.

    I haven't had any major withdrawal yet as I did have some mild codeine from and old tooth extraction to take (it's real old). It didn't do much for the pain tho.

    I missed so much fun stuff with my grandson this weekend. Just broke my heart, he is such a joy in our lives.

    I will see how I feel and if I can keep my emotions under control (without just bawling) I would like to make it to this appt. today and let him know how wrong he was. I have also printed out alot of articles about pain management vs. abuse, and other things I think his office personeel or even him need to be educated in.

    Will keep this updated as possible.

    Prayers and peace to all!
    Have a Beautiful day,
  6. lilac123

    lilac123 New Member

  7. lilac123

    lilac123 New Member

    hi all,

    Thought I would update after my appt. with PCP yesterday. What a scary joke that was and so unneccessary (SP??) that I went thru what I did for 5 days!

    My Aunt went with me and I took all my notes and even phone records of all the calls I've made to his office. ( our phone bill jsut happened to come in the mail ystrdy before we left)

    I didn't take anything all day cause I wanted to see if I could get by, well by 2:00 I could hardly walk and just about ready to have a seizure or something. My whole body was shaking. Anyhow, I kept it together and those gals in the office were probably hoping I wouldn't show up. Once we did and they didn't know who the person was with me you should have seen them all at attention!!! I've never seen them be so proffesional!

    All of this was just as I thought a total miscommunication and the doc was not even getting my messages! Just thought I was someone trying to get drugs early. I was really so mad I didn't want to have him give me any prescriptions but after talking with him and the state I was in It was obvious my pain level was off the charts and I had to have something. So, we discussed all kinds of things and I had to remind him it was me that wanted to wean off the AVinza and try the percocet rather than the hydro. He got out his drug book and talked about maybe pain patches, and I said I thought I read somewehre one kind had been pulled off the market. His response, "Oh, yeah I think I saw something like that". So, we decided on something called "Zybon" 7.5/400 (sp???) He apologized on our way out, loud enough for the office personell to hear.

    We get to the pharmacy across the street and they dont' ahve that strength but do have the 7.5/500. Pharmacy called the docs office to get an ok to change that and it took them 45 mins to get back. We could have taken the prescription back to the office and had it changed sooner than that! It was so scary and crazy!! The pharmacists couldn't believe it either and all there at CVS could see how much pain I was in!

    Finally got a call after 5pm and ok'd it. I left with the same thing I've had for 4 yrs. Hydrocodne 7.5/500!! How weird, don't know what happened to the Zybon?? I don't thkn these docs know as much as we think they do at all!! Well, and then there is the problem of the DEa trying to monitor this stuff because of abusers. WE discussed that too and I showed him some articles I printed out that might educate his staff.

    I almost felt sorry for him if I hadn't suffered so much for so long and been in such danger of just stopping these meds. What a nightmare! But, I would love to be a fly on the wall when they have their meeting of minds!

    Today is a new day and my pain is under control (still there but manageable)so I will give thanks to the lord and start again today.

    Best to all and I will keep us all in my prayers that no one else has to go thru this.

    God Bless,
  8. padre

    padre New Member

    Sorry to hear what you have gone through.

    I am reminded of something I have posted before. I have a good friend that is a retired doctor. He warns with a grin: "Remember that half of the doctors in America graduated in the bottom half of their class."

    Not very uplifting, eh?