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Posted 1/24/2015 12:33 PM (GMT -5)
Hi all...... I am having a hard time with my pain, absolutely no energy. Was doing alright if you can call it that, to where my pain was under control and I could do the bare minimum that my limits normally allow me. Then............. My PM left me to retire and his partner took over.
I have been on 50 mcg of Fentanyl (matrix) for about 3 years with Oxycodone (Percocet) 10/325 for BT pain. I have been changing my patch every 48 hrs and using Tegaderm for better adhesion. This new doc for me has decided that he doesn't want me to change every 48 but rather every 72. I said I would try but it has been a rough road for the past month. After 48, I am getting the flu symptoms, pain has increased tenfold and the BT doesn't help. This doc I have been told would rather do noninvasive procedures than just keep you on chronic pain meds. He prefers to "try" first. I however prefer not to "try" as I have had too many very bad experiences with trying. How do I get it thru his head, "why try to fix it when it's not broke" - another words to change my meds around for his satisfaction when I was at least somewhat in control of my pain before this. I don't want him to leave me high and dry because I wont concede to his ideas!!! Its really hard to find a good PM doc that's not in it for the money and that will take care of your pain med needs.

I am not sure if I am experiencing wd's after 48 or what but I am miserable 2 out of every 3 days now! Any advice would be appreciated!
Posted 1/24/2015 12:58 PM (GMT -5)
Hello SissyPam & welcome to the chronic pain forum. I am sorry to read that you are struggling so with your pain. So many get stuck in this situation when the good dr retires & the new dr takes over.

Unfortunately, you can't force the new one to follow through on a prior drs recommendations. Each of these guys have their own opinion on how they want to treat their patients. In reality you really had no choice but to agree to the change because he is the one that writes the scripts. Not everyone can wear the Fentanyl patch for 72 hours & some drs such as yours believed in his patient enough to let it be changed every 48 hour. The only thing you can do is go back for your next appt & let him know what has happened & how bad the pain has come back. I would probably make some notes about how this change in medication has impacted my daily activities because of the pain not being as managed as it was before. If the dr still insists wearing it every 72 hours then you may have to look for a new PM dr.. I know that is scary thought but you may not have any choice. There again when entering into a new dr relationship there is the chance a new dr will have his own ideas on what type of medications he think you may need & he could put you on something totally different. This is just something that cannot be predicted. I really hope after you see the dr again he will change you back with as before.

Keep checking back, as weekends tend to be a little slow here at the forum. Take care.
Posted 1/24/2015 1:24 PM (GMT -5)
Sorry to hear of your troubles. Hope the doctor listens to you and realizes you were better off before.
Posted 1/24/2015 9:59 PM (GMT -5)
Thanks for the advice........i know i am at their beckon where my treatment goes but what i cant understand is their reluctance to just leave well enough alone! I was so stable prior to my other doc leaving, there is nothing wrong with the 48 hr regimen of the patch....its not illegal, my insurance pays for it, my pharmacy fills it! I will let u know what he says at my appointment. Sometimes it is so depressing and frightening what i have to go through just to survive the pain and incapcitation. I regret ever having the back surgery back when. I was not nearly as bad as i am now, i could hold a job, clean my house, etc. Does anyone else feel this way? I am 54 yrs old and live the life of a 90 yr old. Each day brings its challenges in hoping i didnt walk that 50 ft more than i should, too much sitting or standing. Sorry i am babling --- i just get feeling really low knowing it will be this way every day for the rest of my life - a fight! I am so tired of this.
Posted 1/24/2015 11:33 PM (GMT -5)
We have to do what our pain drs want us to. Even if you changed pain dr, it is highly doubtful that a new dr would start you out on what you've been taking in recent yrs.
Posted 1/25/2015 10:54 AM (GMT -5)
Welcome Sissy and yes we certainly understand and feel like you do some days. Most of us have undergone so many changes in the last few years and more so than the year before due to the changes in regulations from the Dea and fda when it comes to CP and the use of opiates in noncancer related issues. In the last few months alone I have been in three Drs offices,not all for me,that have notices posted as soon as you enter that state they do Not prescribe narcotics for pain other than cancer related. To my way of thinking thats a lot. I have a step granddaughter who is 17 and had 3 teeth pulled last Thursday and was given nothing to take home for pain not even Motrin. The post procedure instructions said simply to use Aleve and Tylenol. I am old school I guess and thought that was almost cruel.

It's come to the point that we all have to find other ways to treat our pain in the best ways possible and not to rely on narcotics ever. Its a plus if you are given anything regardless of how long or how much you have been on in the past. Many come here with very real,very legitimate issues and get no help whatsoever in the way of relief with opiates. As horrendous as that sounds its our reality these days and I don't think that it will change in our favor. Less insurance companies are covering PM Drs and pharmacies when pain meds are the choices. Medicare and Medicaid in many states limit what and how much or any at all.
Posted 1/25/2015 1:36 PM (GMT -5)
Good advise, I'm new here's it's just helpful for me to hear that I'm not alone. I am suffering with shingles pain right now. My pain dr put me on probation because I had an infected tooth and took an old Vicodin to dull pain. It came up on my pee test. He said I don't prescribe Vicodin for you so if your next test comes out positive for anything but Percocet I'm discharging you. I'm a respectable 56 year old mother, and he made me feel like a street drug addict. I understand there are a lot of addicts just looking for drugs yo get high. But Christ that is not me.i sorry I am just tired and sad of always defending myself. The reoccurring shingles for 25 years and migraines for 17 has taken a toll. Thanks for letting me vent. Cin
Posted 1/25/2015 2:07 PM (GMT -5)
Marina kay, if you signed a pain contract, you agreed to not taking any other pain meds than those prescribed by your pain dr. You are very lucky that your dr is giving you another chance. Most drs would have discharged you right then and there with no more prescriptions.
Posted 1/25/2015 4:48 PM (GMT -5)
Your right Mercy, I am lucky, I just have had no real clue about being tested. I really thought you were positive or negative. I'm am learning as I go along thank you for your input. I'm truly trying to do what the dr. Says. Blessings Cin
Posted 1/25/2015 4:50 PM (GMT -5)
Thank you for the ice advise, I will get a few moldable ice packs and see if I can calm down. Cin
Posted 1/25/2015 5:41 PM (GMT -5)
Geez...I guess I'm lucky. I still have my family doc prescribe me opiates for my pain. She listens and if something is not working we try something else. I've mentioned some that she hasn't heard of, and she is letting me try them. I've never been drug tested even though I've signed a contract. I've called for refils early(no questions). I'm taking 2 breakthroughs and 1 extended release. I tell her how many I need for a day, she writes the script for the amount. I'm not a drug seeker, we just have a great patient/doctor relationship. I can email her anytime with any issue and she writes or calls back in 24hrs. I'm so very grateful to have a doctor like this...
Posted 1/26/2015 8:17 PM (GMT -5)
Nvrthesame.......i hear what the point your trying to make but one statement is really not applicable. How can you say that i have to find other means of controlling my pain "other than narcotics"? Most of the things wrong with my back can be "aided" with other modalties of some degree of pain control but not anywhere near to the point that i would be able to endure the intensity of the pain without narcotics! One imparticular was caused by the very essence of having non-invasive procedures done in hopes of not having to take narcotics, adhesive arachnoiditis!!!! This was caused by the very procedures that these pain docs sometimes insist on doing in hopes of alleviating some of the pain. So if it wasnt bad enough to have the problems after back surgery, i now have an incurable spinal cord disease that causes relentless debilitating pain. I dont want to hear anyone say that i need to find a way to control my pain without narcotics!! Dont you think if there was i would have found it! I cant afford any more pm docs sticking needles in my spine, inserting probes for stimulation or burning nerves because of their need to make their wallets fatter! It aint happening....so now i have to deal with the all unfair treatment and unfair practices of pm docs. But who says anything is fair, right?
Posted 1/26/2015 8:46 PM (GMT -5)
There is such a fuss regarding pain medication these days that it has become essential for chronic pain patients to have an extensive bag of tricks for pain relief...

Even if pain medication is the most effective thing in treating your pain, you can't rely on it. Because you never know when something will happen and you won't have access to it.

For example, I use pain medication. But I also use a muscle relaxer, anti-inflammatory meds, OTC stuff, a TENS unit, heating pad, stretching, physical therapy, hot baths, etc. I even lay on a tennis ball when I can't get anything else to help. I combine everything to try and make the day bearable.

Even though I could increase my dose of pain meds and it would probably work better than all the above stuff put together, I don't do it because getting pain meds from month to month is never a sure thing.

I'm really sorry for everything you're dealing with.
Posted 1/27/2015 12:50 PM (GMT -5)
LexiRae, I'm trying to find a previous thread here that asks what everyone does in addition to their pain meds. That thread is full of ideas just like what you said that are so helpful, especially to those who may be newer to chronic pain. I think Backtolife started that discussion. I'm hoping someone can find it and bump it to the top for us to see again.
Posted 1/27/2015 1:05 PM (GMT -5)
My other resources for fighting this CP are all follows: my Jacuzzi (which was purchased after I became disabled), heating pad, and massages.
I cannot use a TENS unit because of the neuro disease I have (adhesive arachnoiditis), I can't exercise - would love the do a short walk but have to use a scooter for that, I tried meditation - that was a no go.
Most of the OTC meds are useless, don't do anything but give me awful side effects.

I would love to hear everyone's idea's of managing their pain aside from the meds!
Posted 1/28/2015 1:46 AM (GMT -5)
I think one of my best investments to help with my pain and also sleep was getting my adjustable beds! Much better than sleeping in a recliner! With the wireless remote I can make little adjustments or big adjustments in raising or lowering the head or foot or both of the bed! The bed also has vibration massage either for the head or foot or both of the bed with a huge variety of different modes from slow or fast wave vibration..to pulsating and everything in between! Although for me I don't use this feature because it induces back spasms in me! But if sleeping in a regular bed contributes to your pain, just maybe an adjustable bed might be worth looking into! I have two extra long singles adjustable beds side by side in a king size sleigh bed frame. Each bed has it's own wireless remote.

Also since I recently (a little over a year ago) moved to a state where being treated with pain medications is extremely difficult if not impossible!. And I had been treated with oral opioid pain medications by my former spinal pain management doctor for well over ten years. So to solve my delema, I opted ( with the help and referral of my PM) to get an implanted pain pump. I got it last June and I have nothing but good things to say about it! I wish I would have gotten it years earlier! For me it was a viable option to replace my oral pain medications. Maybe for some it might also be worth considering????


oh yes one more thing.......SisterPam Welcome to Healing Well Chronic Pain Forum! and also Marina Kay too! I am sorry you have reason to come here but I am glad you found us! I personally think it is one of the best sites of this type on the internet! so again I Welcome both of you!

White Beard
Posted 1/28/2015 11:34 AM (GMT -5)
Whitebeard: My husband and I have considered buying one of the adjustable beds where he can have it firm or soft on his side and vice versa as well as adjusting the head and foot. I have done research on them because they cost so much and there are so many pros and cons, I am concerned about the cons. Because it is so expensive I am scared to invest in one and then have it break down and not have the company stand by it. I don't know...... do you know of other people that have invested or purchased one as well? I am so so tempted to get one.
Posted 1/28/2015 5:36 PM (GMT -5)
Hi SisterPam I have seen the ones advertised with the adjustable mattress from firm to soft plus having the up and down adjustments of the head and foot. But I don't know much about them, I got mine at least seven or eight years ago when I was still married. At that time my wife liked a slightly different type of mattress than what I liked and they were slightly different in thickness and firmness. But it still worked out great because to make the bed even when flat, all I did was adjust the legs on bed ( the one with the thinner mattress) a little higher so that they both matched side by side when flat, with a king size comforter on. Of course with the new type adjustable mattresses you would not have that problem!

Yes they are expensive, even back then, but we had a new furniture store open and they had a big sale on their adjustable beds so we got them. It just so happened at around the same time we got the beds, Kay merchandise store was going out of business and they had all their stuff on sale, including there furniture! Well we found a king size sleigh bed frame that matched our bedroom suit perfectly! And the adjustable bed fit perfectly into the sleigh bed frame! Just blind luck I guess! But even with everything on sale, it was still rather expensive compared to buying a regular bed, but I must admit it was worth every penny! During the divorce because of my bad back ( the reason for getting them in the first place) I got that bedroom set, and she took the other one in the spare room.

If you or your husband have any questions about it, or if I can be of any help about it, just e-mail me!
For me the Pros out weighed an Cons, because of my back I cannot lay flat, and I had been sleeping in a recliner for close to ten years before getting theses beds! And I will tell you the adjustable bed is far far better sleeping in than a regular recliner! ( just as a side note when my youngest daughter got married I got them a really nice comfortable recliner as a wedding gift! Just so when I go up to Minnesota to visit them I have a place to sleep! LOL)

White Beard
Posted 1/29/2015 2:48 PM (GMT -5)
Besides your meds, what is your most indispensable form of pain relief? That's the name of a thread started by Backtolife. It's on page 1 now. Lots of people have added their own ideas to make it very helpful. Check it out, add to it, see if there is something there you can use.
Posted 1/31/2015 10:37 PM (GMT -5)
Thanks Abeline for the referral to the other thread, I did read it. To answer your question, I think my most indispensable form of pain relief would be my Jacuzzi. I am weightless to stretch, the water jets feel good and it is very relaxing.
To Lahaina: I thank you for offering an explanation for one of the responses I got. I wasn't mad or anything but rather put out that someone who in is chronic pain would suggest or even contemplate that advise. It is what it is.
I unfortunately know that I will have to rely on narcotic pain medication for the rest of my life, and yes I will probably at one time or another have to fight for it. I am prepared for that because it is my existence. Sometimes it's very depressing as I stated in starting this thread to know that the future is uncertain as far as our treatment. I want to take a big breathe of relief someday and know that I might live a better life style than I do now. Realistically, it will be just the opposite. I try to keep my chin up and thank god for all I have: my life, my wonderful soul mate, my 2 big puppy dogs (german shepherds) and my family.
Sometimes it's so easy to fall into a ditch of depression, pain and sorrow, but I haven't overcome that yet by a long shot. Many a nights I will lay in bed and think, "why me", "what did I do to deserve this", and how my life as it was ended so abruptly. I want it back, but I can't have it so I must move on. I have to be strong, keep my faith and explore other interests as I live this life.
Posted 2/1/2015 12:44 PM (GMT -5)
SisterPam, I am with you about the jacuzzi. Would you believe that back in 1996, yes that long ago, lol, we bought one because of my pain. The heated water did more for me than anything. I have always been plagued with severe muscle spasms & laying on the recliner with those jets hitting the right spots really does help. My PM dr at the time wrote that it was medically necessary for me & the place we bought it from provided us with a form the dr signed & we did not have to pay sales tax on it. I really like using it in the winter especially.

Many years ago I was using Fentanly patches & by day 3 I was in trouble it never failed. I was having WD's, the pain was not controlled like it was on day 1 & 2. In the summer if I was not careful in the Tx heat it would dump & release too much medication. Anything I did that increased the body temperature the slightest bit would cause the patch to dump. Finally after I was increased to 75mcg it affected my kidney function & I had to be taken off of them immediately. My grown kids quite some time later said it was the best thing that could have happened for me was being taken off of Fentanyl because they said my mood was not a good one on day 3 lol.

We all have gone through the why me & what did I do to deserve this routine. That is just part of learning to deal with chronic pain. I no longer visit those 2 places & hopefully you will stop too. I finally learned that by letting the depression take control & sending me there it had no purpose & was more harmful than helpful. I think we all go through dwelling on our health issues but the key to that is not to linger there or stay long. I think learning to live with pain is like peeling an onion, it peels off a later at a time.

I have an implanted pain pump, that has been my source of pain mgt since 2005. Although the one I have now is either failing or a mass has formed on the catheter my dose has been reduced greatly & life is not so great right now. I am in the process of getting surgery scheduled to have everything removed & new put in. I have watched how all of the changes towards chronic pain mgt has taken place over the past 2 years & it makes me glad that I don't take oral medication. I think what many people on this forum is experiencing is nothing compared to how much worse it is going to get for chronic pain patients. The drs do not want the DEA breathing down their necks & they are worried they can get their license taken from them & the pharmacy can now tell someone how many pain pills a month they will fill for them regardless of the amount the dr wrote the script for, patients should be concerned where all of this is headed. I have seen my own PM dr tell a patient no, I cannot write that script because I could lose my license to practice medicine. I have witnessed this more than once & he & I have talked about this just in general. Its just not good I know that.

Hopefully when you see the dr & explain what is going on something good with happen for you. Make that detailed list of how much it has affected your ability to function daily. Take care.
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