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Posted 1/6/2011 3:36 PM (GMT 0)
Greetings one and all.

I'm fairly new to the forum, though I am not new to pain. For over 3 years now my life has been completely altered, turned up side down if you would, and, as my Doctor said to me, the life I knew is gone.

I was wondering if anyout out there might have some words of wisdom on how to deal with one major issue that keeps coming up between me and my pain doctor.

For the last few years they had had me on Loritab to try and ease my pain, but as time went on and my condition got worse the loritab ceased to be as effective. I had recently had my physician up my doseage but trying to get them to up my pill count is still something they steadfast refuse to do. As the loritab continued to not be as effective they recently switched my perscription to Percoset. However they lowered the doseage. Plus our cold snap finally hit, which adds a whole other layer to my exsisting pain.

You see I have CRPS, stage 2. Basically the nerves in my neck are constantly sending pain signals down my right arm, my dominant arm. I have constant pain with flare ups or spikes throughout the day. In the summer I have horrid swelling so that my hand is twice the size it should be and in winter even inside I wear special crocheted fingerless gloves so I can still somewhat have the use of my hands. With the weather turning cold the pain has gotten to a nearly unbearable level, and for me that's saying something; I have an extremely high threshhold for pain. But of late the pain has become so much my body just shuts down and I end up asleep for a couple hours bundled up in a blanket to try and stay warm at the same time.

I'm only supposed to take 4 pills a day, and my life revolves around my pill schedule.   sad   On a bad day I frequently take an extra one, or double up on my doseage. The bad thing about this is it causes me to go through my pills faster, and as most of you are propbably aware given the nature of narcotics they are strictly controlled. Even if you're willing to pay cash and have a brand new perscription if it's been less then 28 days they will not, can not, fill your perscription. This has caught me short once before; I was facing a week without /any/ Loritab. I hate the fact that people like myself, thanks to those lowlifes out there (doctors and people alike), are denied our meds when we need them.

So the arguement has become trying to get my doctor to up my daily alottment. I have tried to tell him for the last year now that my pain has progressed to the point where I simply can not afford to skip a dose, and if I am supposed to use my arm regardless of how much it hurts (a lovely side effect of my conditon -- use it or lose it basically) then I need some way to keep myself from ending up curling on the couch bawling my eyes out and writhing in pain. The last time I tried to skip a dose I was reduced to a mewling child, thrashing about because I couldn't take the pain. So much fo "Cowgirl Up!". But my doctor refuses to give me more pills.

Now I am in that pickle again. I picked up my perscription on the 20th last month, but I only have enough pills, at 4 a day, through the 17th, which is at least when I'm supposed to see him again. How can I convince a man, who's been seeing me for over a year, that may pain is getting worse and that I need him to change my perscription. As it is if I have a bad day between now and then oh well. And as a single Mom I really don't have the option to just curl up and cry when I have an 8 year old little boy relying on me to be there for him.

What can I do? Suggestions? Input? Please... help.

Posted 1/6/2011 4:36 PM (GMT 0)
I only have minor pain compared to yours, but I found that for fibromyalgia less is more. I don't mean fewer pills, just ones the docs don't worry about so much.

You've probably already tried everything else in the book, but for my condition tramadol works better than Vicodin or Percocet.

Vicodin's great for when I have surgery, helps some for my tendonitis, but tramadol works better for me - and the docs will prescribe it more willingly. I guess they think it's less addictive, which for me it is. I can get off it for a day or two and not feel withdrawal, when I am having a good day.

Another suggestion, which may not work for you, is saving up pills on the good days. Some days I even forget to take my mid-day pill, so I end up with extras.

The main problem I have with tramadol is it wakes me up, so I can't take it at night. My doc doesn't like me taking diazepam, which helps with muscle relaxing, so I'm trying some Percocet I had leftover from trying that. The problem with that one was I have to take Zofran with it because it makes me vomit if I don't. I see the pain doc Monday and will discuss what he wants me to do. I've been willingly trying all his fibro meds without finding one that works AND I tolerate.

Wishing you well -
Posted 1/6/2011 4:40 PM (GMT 0)
Can you see a pain management doctor? Also, do you keep a pain journal? That would be a good start, I think (if you don't already do it). Really, it's much better to see a PM doctor ( a physiatrist, an anesthesiologist).

Hugs,

Flower
(p.s. I'm sure that others will be around with more and/or better advice...don't have much time to write now:(
Posted 1/6/2011 4:42 PM (GMT 0)
Sorry to hear you are in pain. Maybe you should be on a more time-release medication? My Dr had me on Vicodin for a year for my knee pain and then switched me to Morphine ER 15mg twice a day. The ER gives a much more stable release, and you can stay on top of the pain. (not after the fact) I was really hesitant to go on morphine, but it made it so much easier for me. Plus, being ER I usually don't have any need to "take an extra" pill. Sounds like you either need to have a talk with your DR, or maybe start looking for a new one. ( I know that is easier said than done) good luck
Posted 1/6/2011 5:49 PM (GMT 0)
The best thing to do is to simply tell your doctor that your current pain management is not working and to be specific on how it is not working (ie. it is not providing enough pain control, it is not lasting long enough, both, or whatever it is).

A few things to keep in mind about pain meds. You can not compare doses mg to mg for each type of med. A 5mg dose of one med may be as "effective" as a 100mg dose of another. I qualify effective meaning based on standard conversion charts doctors use when figuring the "strength" of various medications.

In addition when talking about pain meds it is often more about using the right type of med for the pain you have.

Finally it is about what works best for you...which really goes hand in hand with the using the right type of pain meds.

As far as what is best for you...I can't offer any real suggestions. Perhaps you can talk to your doctor about trying an extended release pain med along with an immediate release for breakthrough pain.

What I can and will tell you though is that when it comes to pain medications doctors tend to get really upset fast if they find out patients are not taking them as prescribed. Even if you are not on any kind of pain contract it really is a good way to find yourself without a doctor who will prescribe them.
Posted 1/6/2011 6:33 PM (GMT 0)
Rhaevin, if the pills are causing some stomach problems due to the tylenol then maybe you could get the Roxicodone 15 mg. That's what happened to me.. I started on Lortab 10 mg. then the pain got worse and my tolerance got higher...then the percocets....then stomach trouble, then the Roxicodone 15mg. now I'm on the 30 mg. Roxicodone and they work better.... Your tolerance will get higher but at least you';ll have something better then Lortab or Percocets...
Posted 1/6/2011 10:30 PM (GMT 0)
Hello Rhaevin and welcome to Healing Well's chronic pain forum. I am sorry that you have to be here but very glad that you have found the forum. As you can see there are plenty of us around that suffer daily with CP and understand many of things you speak of and live with. It seems never ending sometimes.

I really am sorry to hear that you have been dx'd with CRPS. It is a wicked disease indeed and can be debilitating as you know. Treatment wise many on here receive different types of blocks that helps with some of the pain. Unfortunately because it is nerve pain the standard pain medications have very little effect on calming the pain down to a decent level. Most of our members here on medications that are specifically for nerve pain such as Lyrica, Neurotin, and Cymbalta these are a few right off the top of my head. Does your PM dr treat many patients with CRPS? Have you considered getting a second opinion with a dr that may specialize in this disease? It may be something to think about.

Getting pain medication is getting harder and harder these days. Yes, the drs are limiting the amount of pills per script. If one finds a patient is running out early, many times the dr will fire the patient. I have seen PM drs do this with patients. Of course this goes in your chart and follows you around. I think this is only going to get worse instead of better. You mentioned a SCS unit. Have you done the trial for one yet? You might want to do a search here at the forum on the SCS units, there has been lots of conversations about them here. The search is at the top right side of this page and if you type in SCS units it will pop up all sorts of posts on this subject.

Anyway, I wanted to pop on and tell you welcome aboard. Take care.
Posted 1/6/2011 11:33 PM (GMT 0)
I had this problem for over 3 years till I finally got a physiatrist. He finally listened and is qualified to know what works for each and every individual patient. He also has been trained in Eastern medicine as well as Western, which makes him seem kooky at times but well worth it, I think.

You have to get away from primary cares because they typically fear upping the dosage on pills.
Posted 1/7/2011 12:32 AM (GMT 0)
IMHO your situation is not going to improve by yet another discussion with the same Dr. You've apparently discussed the same increased pain several times and after a while it's sort of in one ear and out the other with Drs. Perhaps a specialist can give a new perspective on your issues and your pain concerns. There are so many in your case that you can consider. You can consider a Pain Management specialist, a nerve specialist, a specialist who deals with your exact condition, a psychiatrist (if you might be depressed/anxious from your situation), and/or a research hospital team.

I am not suggesting that you seek more than one, but that you may have needs that are not being met by the Dr that you have right now. In that instance (and especially if he/she is a PCP), you can ask for a referral and he/she will likely give it. I've even found with my PCP when I got to the point of needing a PM and psychiatrist to deal with the issues that she was more than happy to send me to them and to keep me as a "regular" patient. She was happy to have the prescriptions left to the specialists and to make sure that I was happy with the service I was receiving.

I hope you find an answer and can have relief without having negative notes put into your medical file. Asking for the referrals may help to prevent that from happening.

All my best!
Posted 1/7/2011 3:28 AM (GMT 0)
Thank you, everyone, for all the wonderful comments! I am sure when you all first joined you felt a sence of freedom to finally meet someone(s) who understood what you were going through. Finding this place has been such an incredible thing for my spirits.

Alcie -- I have taken Tramadol in the past, though I have to take quite a bit of it. I will have to see if I can get my doctor to perhaps write a second perscription for when I need that little extra something. In the past I have saved pills/skipped doses, but in the last few months my condition has progressed to the point where I can not miss a dose; I tried that a few days ago and found myself writhing in pain and whimpering on the couch. I'll not be repeating that any time soon. Perhaps when my doctor realizes I can no longer skip and save that will change things.

Flower -- Yes, I do indeed keep a journal though I am perhaps not as deligent about it as I should be. However the doctor I refer to is the only one I really see, and he is a Pain Specialist, one of the best in my area. Infact he's the one that figured out, after two years, what was wrong with me.

JNO2 -- I did the vicoden thing for a year, and so far they have said they won't put me back on it. However the morphine ER sounds like one option to look into. Thank you!

Jim -- You are the second one now to recommend ER. I definately need to look into this. But yes, I need to seriously discuss things with my Pain doctor about what we can do to help keep my pain at a more manageable level.

uniquelymek -- Thankfully I don't have stomache issues unless I'm taking NSAID's, but I'll do some research into the Roxicodone before my appointment on the 17th.

straydog -- I have tried many of those drugs; I remember the Cymbalta made my heart race, but no, unfortunately alot of the stuff they use to treat RA or Fibro aren't as effective with CRPS. And you are a first! It's so rare to meet someone who knows what I have. I have had my diagnosis confirmed by a second doctor, but saddly aside from the Pain specialist I see there are few better then him, and no one in the area who specializes in what I have. I have not yet done my stim trial -- that probably won't happen till next month given on the 16th I have to do my mental eval to even qualify for the stim trial. Then it's a two week mandatory trial basis. I've a TENs unit I wear from time to time that does help, so I am hopeful that the SCSU will do likewise. But I will definately search the forums for talk about the matter as well. Thank you!

retiredmom -- The only problem I face at this point with that in mind is that there is really only one other Pain Specialist, outside the one I see, who could treat me. My biggest fear is that once I sign the documents to have my file transfered from one pain doctor to the other the intial one, the one who diagnosed me, will turn his back on me. I hear this other doctor is really good, and he did my friend's SCSU surgery. She says he's really great. I guess I feel I owe my pain doc an ammount of loyalty as without him I may still be wandering around without a diagnosis. Oddly enough, the PA I used to see to get my pain meds written... he was a dream. Up my dose, more pills, no worries, Tarrant wrote them for me. He even wrote me refills so I didn't have to waste my time with an office visit. Unfortunately Tarrant is on permanent medical leave due to his terminal cancer. That forced me to see the Doctor who took over his patients, or my Pain Doctor. In some ways I think I was better off with my normal doctor, he was at least willing to up my doseage. It was shortly after he upped my doseage that my pain doctor however took over the writing of my scripts again. Now I feel I am right back where I was a year ago, only my condition has progressed, both in the areas it affects (it started in my wrist 3 years ago, now it's my entire arm) and the severity. Like I mentioned earlier, there used to be a time when I could skip a dose so that when I needed extra I had it. Now... I don't. Thank you for the info though about the potential for negative notes, and the possibility of forcing my doctor's hand by opening his eyes to the reality of just how bad I've gotten.
Posted 1/7/2011 9:38 PM (GMT 0)
Have you had stellage ganglion blocks? I developed RSD (CRPS) in my shoulder after a reconstruction, which then spread down my arm, hand, and finally fingers, with massive atrophy throughout the entire limb and shoulder. I was at a more advanced stage than you are when I was finally diagnosed so I do understand the pain levels.
Are you doing any therapies? What about aqua therapy? All of those would substantially help with the pain, although it is painful to do but it absolutely necessary to help prevent the spread and the total loss of the limb.
Along with what everyone else has said, you can find yourself getting into huge problems with your prescribing doctor as well as any you might see in the future if you are found not to be taking meds as they are prescribed.
A long acting base pain med might help and then possibly a short acting for the bursts of pain, but if a long acting is used solely, the dosage can be adjusted to cover most of the pain levels.
The other problem that you may run into is with your pharmacy and/or insurance company. Pharmacies and insurance companies track the number of pills you are given and base those on either 28 day cycles or 30 day cycles. So if you filled the last time on the 20th, then you should have enough meds to cover your doses until the 19th of this month. If you get a new prescription on the 17th, the pharmacy and your insurance may determine that you now have enough pain meds for 32 days now, and if you get it filled in February on the 16th, now you have an additional 4 plus days of meds according to their records. For each month that you fill early, they just add the additional number of days that you should have left over to the number of days that you would have meds for. Eventually, the insurance as well as the pharmacy will refuse to fill the new script early, once it comes close to you having a week's worth of meds.Paying cash would set off the alarm bells at the insurance company and the pharmacy.
I agree that talking about how the pain levels are effecting your ability to function is a better approach than asking for an increase in dose or asking for an increase in the quantity of pills daily. Part of his concerns I'm sure are the quantity of acetominophen you are taking a day. The recommended daily intake for long term users of acetominophen is no more than 3 grains a day ( 3000 mgs) and most pain doctors prefer to keep it well under 2 grains because of the long term effects on other organs.
And he is already giving you 120 pills a month, which is pretty standard for short acting meds. I think talking with him about using a long term base med is a much better option than asking for an increase in strength or quantity.
Posted 1/8/2011 2:52 AM (GMT 0)
It's a horrible thing to suggest, but it worked for me ... on the day of your doctor's appointment, skip your meds for a day or part of a day so your doctor can see what it's like for you to go without medication. I know for me I would have to take extra meds in the morning so I could make the long drive out to my PM's office. As a result, I would come in complaining of horrible pain but he would see me at my most comfortable-est.
Seeing how much pain I was actually in radically changed what he & his nurse thought about the severity of my pain. Course, I had to take a bus there & get a ride home so it was less than convenient ... but at least he could see that I wasn't exaggerating.
Posted 1/8/2011 3:13 AM (GMT 0)
MrsM123 -- You are the first person I have ever "met" who has the same issue I do!!! I could weep to no longer feel so alone. Someone who has kinda been there, done that. Yes, I've had the blocks done... twice, both with no results. That was how my doctor knew I was non-responsive and why we're looking at doing the SCSU. I do perform physical therapy in home -- there's no option for aquatic therapy, not in the town I live in. And the closest place is an hour away. I have been well aware of the need to do my exercises, for the sake of keeping my arm. I never had the atrophy problem as my original diagnosis was tendonitis, so I was in physical therapy right off the bat. My doctor always stresses to me how important it is to use my arm, as did my physical therapist. These days my horse is my physical therapy as well as emotional therapy.

I intend to talk about long term release, and thank you for the pointers on talking about quality of life. I forget frequently to tell him that my quality of life has deminished greatly, and that more and more often I spend time curled up pain. I don't like taking the extra pill a day, but given right now it's that or curl up and cry, unable to do anything. Unfortunately even with using my arm and doing my PT I have had it spread; 3 years ago it started in my wrist, now it's my entire right arm.

Do you use a SCSU? What do you do for your pain? Are you just on long release meds and PT? Where abouts are you? Is there a doctor I might want to speak with? There's no one really specialized in CRPS out here, and while I have a good pain doctor if I could find someone who's specialized in this maybe it would help.

Thank you, oh thank you for being here!!!
Posted 1/8/2011 4:36 AM (GMT 0)
Rh you mentioned owing your dr some loyalty. I think most patients feel some sort of loyalty to their drs. However, with that being said keep in mind that the drs work for you. I learned the hard way when a dr refused to change up my treatment program for 2 years in a row. During that 2 year period my condition was progressively getting worse, yet he changed nothing. My current PM dr stated that was not practicing good pain mgt care and I believe her because now I have some permanent problems as a result of not having good pain mgt. She says if a patient does respond to the care it is time to change things up

Have you asked your dr how many patients he is treating that has CRPS? If not I would. Another option for you may be going to a teaching hospital for a consultation. Many times we as patients have to advocate for our care and there is nothing wrong with that. I have found that when most drs stick their head in the sand and will not budge an inch, that is pretty much the writing on the wall as to how your care is going to go with that. Its almost as if they have hit a brick wall and cannot find a way to get around it. I learned about this condition back in the old days when they first started dxing it and it was called RSD.

We do have other members here at the forum that I hope will pop on and say hello that also has CRPS. At least by coming here you know that you are not alone. Take care.
Posted 1/8/2011 4:09 PM (GMT 0)
StrayDog -- I have seriously thought of changing doctors recently when my current Pain Doc and I hit a brick wall. When he gave me my diagnosis in November 09 he told me pretty much my only option was an SCSU, but because I had state Medicaid they wouldn't cover it. So I was forced to wait till SSD Medicare kicked in. Well, that did a year later in November of 10. I was all excited to return to this man who figured out what was wrong with me after seeing so many others. He asked if I had any other coverage aside from my Medicare and I said no.

His office only took PPO's and the only PPO offered to my area was one that had the same surgery coverage as Medicare alone, and they wanted an additional $116 per month on top of the $110 already garnished from my pay. So I opted to stick with strait Medicare.

My doctor, upon being informed of this, told me that he would not perform my surgery until I got suplimental insurance. I was flabberghasted, appalled, and hurt to the core. I found another pain doctor, but as I stated, to get even seen by him I was going to have to drive the 65+ miles to his office, fill out the forms neccissary so they could request my file be transfered ot their office, and then wait to get seen. I had a hard to wanting to do this, not just from the drive standpoint (at least my Pain doctor, while located in Las Vegas like the other one, makes a trip once a week out to my town) but from the fact that I had no guarentee I was going to like this doctor or if he'd be any better then my current one until after I transfered my file. And then, if I transfered it, and this doc was just as bad if not worse about working with me, would I ever be able to transfer back? I hit panic at that point and decided to not take the risk. I've come so far.

I looked into Medigap, but again, for my area what's offered is only if you're over 65. So when I next saw my doctor (last month) I had informed him I didn't qualify. He asked if I had any other options and I stared him down. "Doc, I'm a single Mom who's permanently disabled. Where the hell am I supposed to get other options without totally bankrupting myself?!" At that point he did finally conceed to do my surgery. I know he was just looking out for me financially, but his original refusal back in November had seriously hurt. Now I'm so close to getting to do my trial unit I wouldn't dare try and change doctors. I can only hope that when I meet with him on the 17th that we can try and reach an agreement.

And everyone here has given me so many wonderful suggestions about things for him and I to talk about. I will be doing my research first and take my notebook as usual -- it tracks my pain on my bad days and usually holds notes of questions I always forget to ask once I'm there.

I hope you're right Straydog, I hope other CRPS members step forth. The fact that I am not alone has been so comforting for me. I have wept so much, in happiness to be honest, at no longer feeling so alone and not understood about my condition. It's been a great comfort to be able to come here and talk to everyone.
Posted 1/8/2011 8:11 PM (GMT 0)
Rh,
I was able to finally get my RSD into remission but it was after more than 7 years of devastating disability. I actually became pregnant with my oldest son and once he was born, he was determined that he had to lay on my left arm but I had to hold the bottle with my disfigured right hand. In time, another pregnancy and a ton of home therapy, as well as aquatic therapy and warm wax therapies, and a couple of very determined little boys, I was able to get off the pain meds and other than for some limitations in my arm and sometimes my hand, I have most of the use back , and regained most of what I lost to atrophy and disuse. I won't kid you, it was sheer agony most of the time, and there were times that I just wanted to curl into a ball and die. I felt like a failure as a wife, as a mother since I couldn't even manage to open my infant's baby food jars or change their diapers on my own. My doctors at the time said that they thought that somehow the pregnancies stalled the progress of the RSD, as they said when I got pregnant that it could stabilize for a while.
I know it's painful but I can't stress enough to you how you need to keep it moving through the pain and keep your hand and wrist from becoming so hypersensitive that no one can walk if you are in the room. I can remember vividly my husband and kids not being able to walk across the floors because I felt each step like a bolt of fire shooting through me,so much so that I wanted /begged my doctors to amputate. In fact, at many points, I was ready, willing and able to do it myself. That is no exaggeration, I was that desperate for some, any relief. It's okay to give yourself some time each day to just curl up and cry if you need to but don't let that become a way of dealing with the pain.
I did the stellate ganglion blocks, many times and never got relief for more than an hour if at all. We did all of the testing as well and it was so bad that if the sheet touched me at all, I would be in agony. I wore tank tops outside in the winter because I couldn't bare to have anything touching me.
RSD(CRPS) is a pain like no other, I won't kid you and scs was not an option that was so readily available then. My doctors did suggest it but because it was a relatively new option for RSD, and not as much was known about implanting it or it's outcomes, I was afraid to try so we opted not to.
The best advice that I got was to get myself to a major hospital and luckily we live outside of NYC by about 60 miles one way so we did. I found a RSD support group, back then the internet was not as full of all of the information as it is now , but I do believe that there are some really good resources to help locate doctors.
I even consulted with Dr. Hooshmand in Florida who was the premier physician in treating RSD when I developed it and he was able to help me get in touch with doctors in NYC who were able to help me.
I don't know where you live, but I'm pretty sure that there are doctors within some driving distance to help you.
http://www.rsds.org/index2.html
http://www.rsdhope.org/
Posted 1/9/2011 12:38 AM (GMT 0)
Rhaevin why not ask your current drs office for a copy of your medical records. All drs offices as a rule has a certain person that handles copying the medical records, you do not ask the dr for these. You are entitled to them and they may charge you a fee for this service. All you need to say is that you are keeping a copy of all your medical records for a file of your own at home. You do not have to say anything else, just that. They cannot deny giving you these records either. They can leave out some certain ones like psychiatric records. Next thing I would do is get online and look for the closest teaching hospital to your home. If you find one then call them and ask what needs to be done to be seen for a consultation and advise them you have Medicare. A consultation does not mean you are changing drs or going in asking for medication. By having a copy of your own medical records a copy of those can be given to the facility.

I understand the fears associated with changing drs, its like a taking a big gamble. All of us have been there at some time. I just think you need the very best you can find when it comes to dealing with an animal like RSD. The nice thing about of the teaching hospitals is you don't have to deal with the big egos so much like what we do in private practice. Take care.
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