looking for info on medication holidays

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merrygirl
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   Posted 10/23/2010 4:42 PM (GMT -6)   
In another thread, medication holiday was mentioned. I would like to hear from those who have done it. What exactly do you do? Can you stop it early and take your meds? Do you wean off, or stop abruptly? I am thinking about doing this as my meds are not working so well and I would liek to see where my baseline pain is like. My PM docs do not want to change or increase meds so I think this may be my only option. I would at least to look into it.
 
Thanks
 
 
 

ReactiveConstellationNE
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Date Joined Dec 2005
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   Posted 10/23/2010 4:47 PM (GMT -6)   
You may want to look into Ultra Low Dose (not just regular Low Dose, aka LDN) Naltrexone, aka ULDN. That plus Dextromethorphan (DXM, the main ingredient in OTC cough medicine) can help you have your cake and eat it too, as it were, by reducing or even reversing your tolerance to opiate agonists.

I've had fairly good results not just with modulating my tolerance, but in allowing me to taper down off of opiates (morphine, currently) much faster and less painfully than I ever could without them.

straydog
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   Posted 10/23/2010 4:49 PM (GMT -6)   
MerryGirl, Frances does this with her drs supervision, hopefully she will be online soon and can answer your questions. Please do not stop taking you meds abruptly, that can lead to all sorts of problems.
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Mrs. Dani
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   Posted 10/23/2010 7:01 PM (GMT -6)   

 

  Dear Melissa,

    I am sorry your meds are less effective. Is your doc resist changes for a reason? Or is there any way that you can talk him/her in to medications that tolernece doesnt or rarly occurs? You know, like Baclofen?

     I don't know anything about medication holidays first hand. Most of my meds are resistant to tolerence and effective at the same level for prolonged peroids of time. Many members do take medication holidays though. It seems effective?

     I hope you and your doctor are able to come to a compramise of some sort? Just make sure if you do the medication holiday, you do it with doctor approval & guidance.

*hugg*
  dani 

Reverse Tolerance

~~> http://en.wikipedia.org/wiki/Reverse_tolerance

Drug Holiday

~~> http://en.wikipedia.org/wiki/Drug_holiday

Drug Tolerance

~~> http://en.wikipedia.org/wiki/Drug_tolerance

 



TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Tirzah
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   Posted 10/23/2010 9:35 PM (GMT -6)   
Advice #1: DO NOT do a med holiday without doctor's supervision. That is a bad idea for a lot of reasons from your doctor's no longer trusting you to you finding out you have some kind of underlying condition that causes permanent injury or death.

Also, for comfort reasons, I would suggest asking for meds to manage the withdrawal symptoms. My PM prescribes Catapres patches but I know others have been given multiple meds for each symptom (anti-emetic, anti-anxiety, etc.).

Please, please, please, though, talk to your pain specialist about how to do this safely. Personally, I found out I have an extra heartbeat that 99.9999% of the time is totally benign. about the only exception to that is that if I go through withdrawal at the "normal" rate of speed, my heart has to work way too hard. I get sooo exhausted & it's really bad for my heart in the long run. My PM always makes sure I have a few doses on hand so that if I am really feeling terrible I can tear off the Catapres & after a bit I can take a partial dose of meds. But that can be lethal due to lowering bp too much so really you need to be very careful.

I'm not sure what you're on ... different drugs need to be "holiday-ed" in different ways. I've only been on ultra short-acting meds in the past but now that I'm switching to methadone, my PM said that we would switch to a short-acting med for a month first & then withdraw off of the short-acting med. Sorry I can't be more clear. It's just really a very tricky subject. There are a ton of caveats so really you just need to rely on a trained professional. Just know that the couple of weeks that you are on the drug holiday will TOTALLY SUCK. You will be miserable & in horrible pain & will feel like you have the flu. It is not for the faint of heart (literally or figuratively). For me, it's a good choice b/c it's kept me on a low dose but it's not a fun time.

best wishes,
frances

PS -- personally, I've never gotten my tolerance reset for the short-term. Holidays have kept me from having to increase my dose, but they haven't made what I'm taking work any better immediately afterward. But others have reported that it lowers their tolerance. Just depends. Even if you do get a "boost" it seems to be temporary -- one month, max. So keep that in mind. Have they recommended any other non-pharmacological treatments? That may also be something to look into.

fatherjohn
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   Posted 10/24/2010 12:59 AM (GMT -6)   
Merrygirl, I have taken holidays and they have been approved by my pcp. I don't do it to raise the effectiveness or tolerance. What I found when I did not think my meds were working as well as they were, it was not a tolerance issue. When I took a short holiday, it gave a good reminder of what pain was without the meds. Then when I start back up, the drugs have no greater affect, but I know that they are working better than I thought they were. I believe we not only are suseptable to tolerance issues with meds but also with pain. We grow weary of the same pain day after day and that alone wears us down and even if the pain may not be any different, the way we view it does. In short, I learned that there was a reason I was on the pain meds and even if the meds don't relieve it all, it was still better than without the pain meds.

grainofsalt
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   Posted 10/24/2010 11:20 AM (GMT -6)   
Merrygirl,

I have to agree with straydog. Consult your doctor first (most doctors have no issue, but they can tell you the best way how and if you should tapper down first), especially if you've been taking the medication for an extended time.

With some medications, you can literally just skip a day once or twice a month, if your dosage is moderate and the medication is of a moderate potency. With these medications, you could also do a 4 day holiday weekend. Tapper 25 percent each day until the 4th day in which you don't use any at all. Then day 5 tapper up by 50 percent and day 6 go back to full dosing.  Still consult your doctor or at the least a pharmacist first.

These are just examples and different medications or dosings my require different tappering requirements or require more "holidays" to really have an effect. Its all dependant on your dose, frequency of dose, type of medication, and how long you've been taking it. As White Beard said though, never abruptly stop taking your medication unless your doctor says its safe to just "skip a day" because withdraw can be severe and cause panic attacks, mental confusion, irrational thoughts, cold sweats, nausea, and other flu like symtoms that feel like having a stomach virus and the flu at the same time.

If you tapper *correctly*, your symtoms should be more mild and feel more like a minor seasonal cold and an increase of fiber intake :P
 
As said above, a holiday also reminds you of the why you are taking them. Sometimes we forget that we are on potent medications and have a decreased pain spectrum, even when we are still feeling pain. If your drug holiday is approved, you should definately feel a differance, although you should try to schedule it when you expect the least pain.
 
It can definately help reverse some of the additive tolerance that can pile up. Don't expect it to take you back to almost never haven taken the medication, but you should notice your tolerance dropped back a little. The tolerance differance will be more noticable with some medications (example: tapentadol, codeine as they build tolerance slower), and less noticable with others (example: tramadol as it has a longer half life)

MRI - bulging disc w/gel lost at L5 and touching nerves, causing sciatica. Diagnosed w/ Arthritis which is responsible for joint inflamation pain. Treatment: Nucynta 50-150 mgs every 6 hours (no longer on this... painstakingly tappered off), Celebrex 100 mgs, Klonopin .5, Epidurals, Radio Freq nuerotomy (sept 8th, oct1st 2010)

Post Edited (grainofsalt) : 10/24/2010 10:27:59 AM (GMT-6)


merrygirl
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   Posted 10/24/2010 11:40 AM (GMT -6)   
Wow thanks for the detailed responses.
 
I will not do this without docs approval and advice. I am on a fental patch and oxycodone 3x a aday.
The more I think about it the less I want to do it. For me withdrawl effects are runny nose, watery eyes yawning and electric tickly shocks in my legs. That soes not sound like a good time to me!
 
At least now I have the knowledge of what a drug holiday is and whats involved. I guess I am mostly curious as to what I would be like without pain meds.
 
I just wish we didnt have to be in pain at all.

straydog
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   Posted 10/24/2010 11:47 AM (GMT -6)   
MerryGirl considering the meds you are taking , I am glad to hear you will do nothing without your drs advice. I already know how much pain I still have with a pump and I sure don't want to know what the pain would be like without it. I am afraid it would be way more than I could deal with. One thing about CP, we will always have pain no matter what meds we aer on, we will never be pain free unless we are zombied out on the meds. That is hat my PM dr told me.

Have a good weekend.
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grainofsalt
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Date Joined Aug 2010
Total Posts : 215
   Posted 10/24/2010 12:20 PM (GMT -6)   
Merry,

After hearing what you are on, first off, I hope you have a low pain week :)

And secondly, you might want to talk to your doctor about reducing your medications for a short time IF tolerance is an issue and if the "feel again" issue is of concerning, but yeah after knowing what you are on, especially concerning the patch, I would personally not recommend completely going off the meds. Like I said, you could talk to your doc about a temp reduction as a suitable alternative :)

Soul search on this, and if you choose to keep everything the same, remember its your body and its your choice. Your pain being controlled properly should come first and any decisions should not cause unbearable pain (severely uncontrolled pain has been proven to cause more physical medical issues, so its also a physical issue)
MRI - bulging disc w/gel lost at L5 and touching nerves, causing sciatica. Diagnosed w/ Arthritis which is responsible for joint inflamation pain. Treatment: Nucynta 50-150 mgs every 6 hours (no longer on this... painstakingly tappered off), Celebrex 100 mgs, Klonopin .5, Epidurals, Radio Freq nuerotomy (sept 8th, oct1st 2010)

flower123
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   Posted 10/24/2010 12:57 PM (GMT -6)   
Hi Merrygirl. Thanks for posting this. It's interesting and you've gotten great responses. Has your doctor ever talked to you about a medication holiday? Do you know if your doc does this with other patients?

If you don't mind me asking, what does your doctor say when you tell him about your increased pain? Why does he not want to move your dose up? I know that doctors don't usually want patients to have frequent medication increases, but if you've been on the same dose for a long time then I think that it's expected that you will eventually need an increase.

Have you recently told your doctor that your pain is higher?

Hugs,

Flower

grainofsalt
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Date Joined Aug 2010
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   Posted 10/24/2010 3:43 PM (GMT -6)   
I have only one thing to add to Flower's comment, which is that some PM doctors might not increase your normal dose, but they will give you a few extra in your next script so that you can increase your dose if breakthrough pain happens and the normal dose isn't working.

Definately take Flowers advice and talk to your doctor in detail about this though :)
MRI - bulging disc w/gel lost at L5 and touching nerves, causing sciatica. Diagnosed w/ Arthritis which is responsible for joint inflamation pain. Treatment: Nucynta 50-150 mgs every 6 hours (no longer on this... painstakingly tappered off), Celebrex 100 mgs, Klonopin .5, Epidurals, Radio Freq nuerotomy (sept 8th, oct1st 2010)

Tirzah
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   Posted 10/24/2010 4:06 PM (GMT -6)   
There are meds like Catapres that can manage the runny nose & such. But you will be in pain. I have been on Actiq or Fentora when I went through withdrawals. The good news is that fentanyl is ultra-short acting so the withdrawal symptoms usually start to improve dramatically after Day 3 (by that time much of the medicine is out of your system).
The research is conflicting at this time about medication increases. For many years results seemed to indicate that the vast majority of chronic pain patients could have steady relief from the same dose of medication for decades if tolerance was managed. In recent years, there seem to be some studies that suggest it may be only about 50% of pain patients who would get steady relief (people with cancer and other rapidly progressing conditions were excluded. Obviously if you have a rapidly progressing condition, you will need more pain meds to manage the extra pain). Some doctors & researchers still believe that it is 90+% of patients who can stay on a stable dose while others believe it may be even less than 50% who are able to do so.
Personally, I will say that although my condition got slightly worse I still get the same relief from the same dose of medication that I was on 7 years ago. And many of my PM's patients say they feel the same way. But in fairness, we have also added in more adjunct treatments -- traction, farther along in PT & a brace on occasion. I still have my tough periods and on occasion we will up the dose for a couple of weeks (maybe once a year) & then I will go back down to the lower dose.

good luck with your decision!
frances

merrygirl
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   Posted 10/24/2010 5:56 PM (GMT -6)   
For the last few months I have had a gradual increase in my pain scores. I would say I went from a 5 to a 7 sometimes 8-9. I mean its a ll documented. I always pass my urine tests with flying colors. I do their procedures they reccomend and accupuncture and pt. I have been told I am the perfect patient when it comes to compliance. My gut feeling is that they wont increase my meds or change them due to the severe depression I have. I think they feel that if I can get that and my sleep under control I will not be in as much pain. They keep telling me to push through it. They wonder why I am so depressed, but some mornings I cant get outta bed due to pain. Thats depressing. I also think that because I told them about my family history of drug addicts (never myself) that they are more leary. I also think my age has something to do with it. I am in   my early 30's. I was telling my pm doc that I tried to take my 14 year old dog for a walk and how we both didnt make it far and limped and hobbled all the way home and how we must have looked like a mess. She told me "You are too young for that". So maybe thats it.
 
  I am  a large person, as I am pretty overweight. I feel as though a 200 lb person does not get the same meds as a 100 lb person. In my veterinary experience, a dog gets 1 mcg per pound (roughly) of fentanyl patch. So a 75 lb dog gets a 75 mcg patch. I mean they are not on it long term like I have been.  Dont get me wrong I am not looking for 1mcg per pound or anything I just want to function.  Its not like I am faking my issues either. MRI evidence of 3 bulging discs, stenosis, spondolosis (sp?) DDD. Lyme disease, nerve damage, diabetes fibro, CFS.
 
 I am also open to cutting back when my pain is better. So I wish they would have bumped my fent patch to 75, then we could always goo back down to 50.
 
When one of my docs was talking to me about pain meds he said something to the effect of "holy crap" you are on fentanyl! I dont walk around all high and stuff.  I am also grateful for what I DO have. I just worry what the future holds.
 
I appreciate the advice and the shoulder to lean on.  I have been so isolated with out a computer. Only people who Have chronic pain and chronic illnesses understand what I am going through.

straydog
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   Posted 10/24/2010 6:35 PM (GMT -6)   
MerryGirl after reading the above I believe you have answered your own question as to why the drs re not willing to increase your medications and I personally think your drs are wrong. You are not receiving proper care for your pain or for you as a CP patient. I would be doing some searching for a new PM dr, seriously. It is not uncommon to run into PM drs like them that have their limits of what they will rx to a patient regardless and thats wrong. You re entitled to quality life, and if you are having trouble getting out of bed some mornings, the answer you are too young for that is the wrong answer. I see lots of red flags with this group and I would not hesitate one bit to start looking for another dr. I can see you in the same boat 5 years from now and getting the same answers from these people. I do agree with you on the weight issue, I know when my husband had surgery, he was in the recovery room and in horrible pain, his nurse commented for his size(he is a large man) the dr had him on a very low dose of pain meds. She called the dr and got the dr to give an increase to get him more comfortable. So, yes there is something to that theory.

I just hate seeing anyone get rotten care, dealing with CP is bad enough and rotten drs on top of it all sure does not help.
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Tirzah
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   Posted 10/25/2010 10:46 AM (GMT -6)   
Merry,
I agree with Susie about looking for a new clinic. It makes no sense to me that they would write you for any dose of the MOST addicting medication on the market if they suspect you could develop addiction issues. People get addicted on low doses & then doctor shop or buy off the streets to increase the meds on their own. Addicts don't take low stable doses of medication on a routine basis.

I'm not a doctor & can't say whether a higher dose would be appropriate or not, but they should at least explain why they are nervous about writing for higher doses (maybe there IS a good reason, but it is a bit suspect that they won't tell you. My PM says he wants me on a low dose b/c I am still very young and he wants to keep options available to me for later in life. With my new med, he wants me to stay on a low dose due to heart risks & the fact that my family has all had multiple heart attacks at fairly young ages. So there are reasons, but your doctor should be able to articulate that.).

As for being overweight, my PM's deal is that if a patient is making an effort to participate in more physical activities that will improve their overall health, he will write for a small, short term increase in meds to get them through the initial pain increase. It is not much & the pain is still substantial but it is enough to be able to work on PT & walking around a bit. All of the research recently (past 5-10 years maybe) shows that increased physical activity provides more than enough benefits to outweigh the negative effects of taking pain meds. You do still get the long-term negative effects, but there are very negative impacts of being sedentary -- obesity, diabetes, heart disease, etc. So both sides need to be taken into consideration.

I will say that sleep does make a HUGE difference in pain levels. Have you been to a sleep specialist? They can run different tests to see if something is going wrong that is keeping you from sleeping (blood tests, EEG's, sleep apnea tests, etc.), can give you strategies to promote sleep & usually can prescribe meds to help you sleep if needed. Might be something to look into.

best wishes,
frances

straydog
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   Posted 10/25/2010 3:10 PM (GMT -6)   
MerryGirl my PM dr see's patients with pain pumps only. She has been wonderful to me as a PM dr and I do not believe I could ever get any better care. My prior PM dr that handled my pump would not increase the meds in my pump the last 2 yrs I was his patient. He claimed I was at my maximum dose and that I was on the strongest pain medication that was available. I had no quality life at all, was able to do very little activity wise. When he quit PM he referred his pump patients to this dr and she was shocked at the condition I was in, along with 44 other patients. Her words still ring in my ears that not only was I under treated as a CP patient my pain was was grossly under treated. By this time I cannot stand straight and I walk bent over with a cane. I still cannot stand straight and I still walk with a cane and probably always will. And no I was not at the maximum dose in my pump, in fact the dosage he had me at is where they start pump patients out at originally in the beginning!!! You do not have to settle for poor medical care.

My dr says the point of good pain mgt is to reduce a persons pain and to get them back up able to move around and do normal things in our daily living. We will always have a certain degree of pain but it should be at a level we can tolerate. I am able to do so much more now than whn I was with the other dr.. I am still getting increases in my pump, even though they are tiny amounts, but I am so much more active and as long as I am being active she will not have a problem increasing my meds either.
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merrygirl
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   Posted 10/25/2010 4:53 PM (GMT -6)   
I really appreciate everyones honest replies. I will  say I feel anxious about looking for a new pm. I think its because I dont want it to seem like I am doctor shopping. I suppose it would be like  a second opinion. I think I will see what my options are.
 
I am doing everything that is available and I feel like they are holding back on me. therefore making it more difficult to live my life. My pain is definitely NOT tolerable 75% of the time.(although I have to say I have had 2  good days with my new Lyme treatment) Sometimes I just sit in the shower or bath and let the hot water run over my hurt body. I will Take 4 shower/baths a day.
 
Thanks again.
 
Hugs.
m
 
 

Tirzah
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   Posted 10/25/2010 5:49 PM (GMT -6)   
Merry,
You should not be getting scripts from 2 doctors at the same time. That is doctor shopping. If you are looking for a new PM to replace your current one & are open and honest with them about what meds you are on, have them to bring with you to the appointment, and are willing to give your new PM access to your old PM's records, there's nothing wrong with that.
If your PM had given you a valid reason on why you cannot be on a higher dose & you decided that even though it was for a good reason (like safety) you were going to try to see how much medicine you could get another PM to give you & were totally unwilling to try any other non-phamacological treatments that would be a major problem (and a red flag for most docs) but you're just trying to find a competent doctor with a wider range of treatment options.
I imagine that you would be just as happy if there were some non-drug treatment that could get rid of your pain. Tell your new doc that (& be open to trying new things). Any doc who would turn away that kind of a patient is not going to be any better than your current PM (and maybe worse) so don't worry about it. I have to believe there is someone out there who can help you.

My first PM was a moron. Only wrote for Ultram & Neurontin. Unfortunately, I got covered head to toe in itchy hives every time I'd take a dose of Ultram (which for obvious reasons was not very often). He did get me a cervical collar, but that was the extent of his alternative treatments. Basically, he sucked. I went without a PM for a while & was nervous when I started a new one about telling him I couldn't tolerate Ultram & my neurologist had tried me on a bunch of other options that likewise caused allergic reactions. He was really great. Looked through my records & agreed that they guy was not likely to win PM of the Year. He tried a whole bunch of different things. It took years to get my pain well controlled, but we made pretty steady progress all along. I was just in horrible shape when I started with him. My muscles were weak from not moving very much. I couldn't stand & cook meals from scratch so I had basically been living on junk. I was sick, malnourished, weak & it took quite a while to undo all that. But he set me up with aqua therapy & I was on a number of meds for a while (17 at my peak - don't recommend that, it was mostly meds for side effects & then meds for the side effects of those meds) and really struggled. Landed in the hospital for a couple weeks. It was just really rough. But we stuck to the plan, with a few modifications along the way, and sure enough I got steadily better.

Hopefully you will find someone who can do the same. Whether its meds or pain pump or SCS or whatever, a good PM should take more than 5-10 minutes to listen to his/her patients, should set out the plan so you know where you're going & should respond to basic questions about why they are choosing a particular treatment/dosage.

Also, I'm not sure what the scores mean with your doc. With my PM, based on the Mankowski pain scale, he will medicate to get someone down to a 6-7 and then they either need to add another (non-drug) treatment or learn how to deal with the pain (e.g., pain psychologist). As long as you're able to get out of bed, aren't throwing up & aren't dizzy, he feels the negatives of pain meds outweigh the positives. I'm not saying whether that's right or wrong for you, just that it may be something to take into consideration. When I can't get out of bed & can't talk b/c the pain is so severe & keep throwing up every bit of food, that's when he will up me from the 200's to the 400's. In any case, I don't think the way your PM is handling it is right. Just wanted to make sure you realized that there are PM's who won't up meds unless you're physically sick from the pain; I'd hate to see you go from one PM who won't help you to another who might explain things but still won't give you the relief you're seeking.

blessings,
frances

merrygirl
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   Posted 10/25/2010 9:19 PM (GMT -6)   
Frances,
 
I would never be dishonest with my doctors, nor would I hide what meds I am on. I am not getting 2 scripts or multiple scripts from pain doctors. I see one facitily for pain management thats it. I am simply thinking that it might not be the right fit.
 as far as non medicine routes to ease my pain. I stated that I see a (maybe I ididnt list all of them) psychologist, psychiatrist, sleep doc, physiatrist, accupuncture, and warm water PT. If there is something non narcotic I do it already (most likely)
 
My doctor has not given me a great rerason why not to change things. Maybe I havent been that clear about wanting more answers. Infact this thread is about coming OFF meds, not seeking the highest dose I can find./
 
Thanks for your advice.

straydog
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   Posted 10/25/2010 11:48 PM (GMT -6)   
MerryGirl whatever you decide its your choice. But to be handled the way you are is not right. Sometimes just changing medications around will do the trick with some people without even changing the dose. You seem to have a dr that is set in his/her ways and those kind are always trouble. You cannot expect a patient to remain on the same medication because that patient will eventually over time become tolerate to the medication and it will no longer be effective. My PM dr tells me this all of the time. This holds true with other medications as well. I can usually take blood pressure meds about 2 years then have to change because they become ineffective. When a patient stops responding to treatment the drs ar suppose to change the treatment plan not leave us sinking.

I think Frances must have been reading something else or misunderstood somewhere in this post. I saw nothing about you getting meds from two drs. If your drs are not helping you that is reason enough to find other care. Pain mgt is not a one size fits all either. Usually how you are treated by who ever answers their telephones in these drs offices can be an indicator as to how they treat patients. If you have a crab on the phone you sure don't want to go there, lol.

If I came off strong about changing drs, I apologize but I have had bad care before and I hate to see that happen to anyone. Good luck.
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merrygirl
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   Posted 10/26/2010 8:28 AM (GMT -6)   
straydog- No worries. I appreciate your advice!  I think I got a little upset with Frances post. but feeling not as grumpy this morning. lol.
 
I am going to try to find a support group for chronic pain and see if they can give out referrals to a new doc. I think I would really like the support group as well.
 
 
I will keep you all posted.
 
Hugs
m
 

Tirzah
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Date Joined Jul 2008
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   Posted 10/26/2010 10:55 AM (GMT -6)   
Merry,
I'm sorry for the misunderstanding. My point was that you are clearly NOT doctor shopping & I couldn't understand why you were worried about coming across as "doctor shopping". You are just looking for someone who's a competent doctor. There's nothing wrong with that. :)

straydog
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Date Joined Feb 2003
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   Posted 10/26/2010 2:24 PM (GMT -6)   
MerryGirl I think it would be awesome to find a local support group for CP and a wonderful way to find a potential new PM dr. Getting the scoop straight from another patient would be the very best no doubt, so I do hope you can find something like this. I once looked for a local support group for crohns disease and the closest I could find one was driving to Dallas. Well, I don't drive to Dallas ever, thats a foreign country to me, lol, so that idea was out.

Please let us know if you come up with something.
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