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  • Do pain management clinics help or hurt you?

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    Old 12-05-2008, 06:54 AM   #1
    Stacy937
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    Question Do pain management clinics help or hurt you?

    I would just like to say hello and introduce myself for starters.
    I'm 36 and have Neurofibromitosis 1 along with the chronic pain.I'm glad I found this board because I need some help.

    I've been on Oxycontin for a total of 8 years now. My current dosage isn't working like it once did. My doc offered to up my current dosage last week. I declined and I suggested maybe a muscle relaxer would be better. He added Flexeril which doesn't work very well, if at all. My toes still cramp up when I twist a certain way.

    I called today to make an appoint for adjusting my medication and they referred me to a pain management clinic.
    I've heard horror stories of people losing their medication and were stuck with enduring their pain. Meditation was the cure all. There is no way I would be able to continue with this pain.

    That is what is troubling me if I should call or not. I also don't want to destroy my current PCD trust either by not calling. I am so ambivalent.

    Thanks in advance,
    Stacy937

     
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    Old 12-05-2008, 10:06 AM   #2
    lifeaftr40
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    Re: Do pain management clinics help or hurt you?

    If you are responsible and follow your contract you will be fine. I was leary of going to a PM Clinic but after making some minor adjustments I have finally got a regine that works for me. yes, you have to sign a contract ( can't get narcotics from anywhere else, use one pharmacy, if meds are "stolen" bring police report etc. That is beacuse like anything else out there that is GOOD, there is one bad apple ( or two or three) that will runi it for the good people. I keep my meds locked up in a lock box and have one key on me and one hidden in my husband's dresser. That way "nosy" visitors can't help themselves.
    Bring a list of your meds that have and have NOT worked, as well as any test results, MRI's x rays etc. I think you will find help. usually monthly appointments for refills and follow ups to make sure everything is working out OK

     
    Old 12-05-2008, 01:21 PM   #3
    Stacy937
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    Re: Do pain management clinics help or hurt you?

    Thanks for the reply. I have no problems with a contract because I have only gone to one doctor for my pain regiment in the past. I just hope he is familiar with NF and knows how devastating it can be.

    This community seems to be really nice and honest. I'm so glad I found it.

    Last edited by M08; 12-05-2008 at 04:26 PM. Reason: Please bring your attention to the board rules located at the top of the board.

     
    Old 12-15-2008, 09:02 PM   #4
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    Re: Do pain management clinics help or hurt you?

    This is whizkid2b, new to this. I've gone to a Pain clinic I would say over a 8 year period. I did the injections, massage, acupuncture, the ultra sounds, the MRI's and the medications. What I was given just this past year was a spinal cord stimulator implant. That and some back exercise did the trick for now. Was able to cut back on the med's but have made the choice not to (that's another story... ) Any way.. I got to the point that I was willing to try anything. Give it a try.. remember your the boss of your own treatment. Take charge. Whizkid2b

     
    Old 12-16-2008, 06:49 PM   #5
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    Re: Do pain management clinics help or hurt you?

    My pain management doctor is great. He listens, as does his staff, and they've been very helpful. It is easiest to work with a PM doc when you can clearly articulate what hurts, what increases the pain, what helps, what you've tried, etc. So maybe write up a list of the symptoms you have, the meds you've tried, etc.
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    Old 12-17-2008, 05:55 AM   #6
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    Re: Do pain management clinics help or hurt you?

    Hi Stacer, I've been through 3 different PM programs or clincs that were 8 hours a day, 5 days a week and 4 week programs. Each tought different methods and had different phyolosophies regarding how to treat pain. That's really no different than seeing a PM doc as far as they offfer what they know and believe works. I did feel the first two pretty much tried to pound every size and shape patient through the same perfectly round hole and if what they tought didn't work their was something wrong with the patient, not the clinic phlosophy. The first 2 clinics were before long acting meds were even available so as you can guess opiates weren't part of their program. However the education and the huge number of methods and modalities a clinic offers, most patient find some things work and other don't.

    These programs do teach you that despite what you say about your pain, in an organized structured environment, People that claimed to be housbound or bed wriden were shown that they can leave the house every day, be on time and particpate in these programs. They all consisted of PT twice a day, they included relaxation techniques where I learned self hypnosis at one, guided imagry at the second and bio feedback at the third. The rest of the day is taken up with education programs where you met with drs, pharamcology experts and learned how and why antidepressants, antiseizure meds and other distraction techniques actually work. I pretty much took away from the first two what worked for me and what didn't help at all. Take what works and use it, and forget about the rest.

    It wasn't until the last program in 2000 that long acting opiates and anything stronger than 5 mg perceocet was even available for non malignant patients. They prety much used the same phylosophies as the first two and incorporated opiates into a patients treatment plans that had come for more than just pain meds. Although the last one did start me opain meds, They didn't pain meds on everyone. At that time they only used them on patients that had no hope of being surgically corected or their condition simply didn't respond to any and all previous atempts and had tried everything else first before determining opiates were a patients only option for increased ability to function. If someone refused to particpate in anything other than swallowing the meds prescribed or refused to do anything unless they were given pain meds, either left the programs or went through the motions but didn't particpate. Docs can tell the difference between someone willing to try anything because thay have exhausted all other options and patients that felt entitled to whatever drugs were available at the time.

    It didn'tmatter what they had tried in the past, if someone knew pain meds worked and refused to try anything else, they never got a chance to try opiates. They certainly didn't treat everyone the same and their treatment was based on DX, observed abilities and attutudes and fortunately I was givena chance to try long acting meds.

    When you say PM clinic are you talking about an intensive daily program that incuded every aspect of pain management whether it was nerve blocks for some, IV infusions for others or TP injections, Epidurals, not to mention the education and psych portions of learnng to live with pain. Or are you talking about a PM clinic I see now that is just a group of docs from multiple speciltes that offer whatever is best suited for the patients DX and what seems to work best for each condition.

    I go to a groups of docs now at a PM clinic for montly medication maintaince and they can offer any therapy I have ever heard of from Botox injections to nerve blocks, Epidirals or basic TP injections, whetever else helps complimanet what medication alone simply can't. They are a clinic, have contracts, strict rules, due UA's and pill counts and demand absolute compliance, but they aren't a regemented daily program that I think of when someone says PM clinic.

    One half the building is dedicated to interventional procedures with sterile surgical suites where all the needle work and pump mamangement is done and the other side is offices where evals and follow ups were performed.

    At every clnic I went to we all did psych evals and met with psychologist. To say there is no psych component to chronic pain or learning to live with chronic pain pain would be like saying sterss doesn't effect your pain level. There is an obvious connection whether people want to believe it or not. That was the one thing along with PT/excercise that all the clinics I have been too tought and believed in and I beleieve.

    So no clinic has ever done harm.They may have tried modalities that simply didn't work and even with modalities like interventional procdures, not every doc is equally gifted. I've met some PM docs that couldn't hit the broad side of a barn doing a triger point injection and some docs that are truly gifted and have the touch to provide great relief. If I had and refused to let their docs try something as minimally invasive as TP injetions when the previous doc had no luck whatsoever, I wouldn't have been offered pain meds that were now available and I wouldn't know there could be sucjh a difference between one PM doc and another.

    They don't force anyone to go through invasive interventional procedures like RFA or nerve abalation or even nerve blocks if someone has never benfited from and these methods in the past they weren't going to make me repeat some of the more invasive stuff that didn't work. But I still use many of the tols I picked up along the way.

    I also wouldn't have realized the doc doing the procedures makes all the difference in the world. So I basically took what I learned worked over the years and incorporate what worked even 2% into the tretment plan I use now. I still use relaxation techniques, I still excercise, because there are too many negative consequences from livng a sedentary life. Like a heart attack on my 36th Bday.

    Si I guess I'm not really sure what you mean by a Pain clinic. It can mean anything from a daily intensive program or simply a group of docs from different speciltes that operate out of their own facilty. They don't have to send you over to the hopital for an ESI when they have an anesthesiologist on staff with a sterile surgical suite. Ether way, neither has harmed me. The last was the most efective method of managing my pain because the combinded both medicatoons and altherantive methods.

    Things are very different know. If someone simply dosn't want to have surgery if it is even an option, doesn't want to change their lifestyle whether it means changing jobs, cutting back hours, giving up recreational things that only make their condition worse. THere are some people that feel entitled to whatever med they ask for and feel they shouldn't have to try anything that doesn't gaurentee instant relief and there are docs that will treat a patient this way.

    That's how you end up wth people that have had pain issues less than a year, never had surgery and are on the most potent opiates available and think they have tried everything else because they spent 6 weeks in PT and tried one epidural steroid injection. That's hardly all that's available but if someone shops PM docs enough I have no doubt they can find one willing to simply write ever increasing doses of opiates. IMO these patients are only hurting themselves. They aren't docs, have no education other than what they read helped someone else and by refusing anything other than pain medication they are missing out on a great deal of relief that doesn't come with the growing price of continued physical depoendence.

    It is kinda hard to go back and try non opiate methods of pain Mangament when someone has already been on oxycontin for 3 years. Nothng is going to compare to the instant relief from high dose opiates but the patient will never know if they could have learned to manage their pain without having to pay the price of physcical dependence. There are certainly docs that believe doing nothing but writing prscriptions is doing harm and creating a generation of entitled patients that feel they shouldn't have to consider anything they don't want even when no harm can possibly come from taklking to a PM psychologist, trying acupuncture or learning what foods can trigger pain and how the mind body conection really works.

    The only thing that has harmed me that didn't work was surgery, but at the time when you have lost bowel and blader control, it's pretty much your only option to go in and decompress nerves or stablaize a spine or whatever the condition calls for. There are no gaurentees with surgery and no gaurentees with pain management. But seeing a doc that doesn't use pain meds, really isn't going to harm someone. They may actually learn non drug methods to deal with their new health circumstance or use different classes of medication like anticonvulsants for nerve pain or antidepressants to reduce the production of substance P. Substance P is a bi- product of living with chronic pain and it actaually makes pain worse because it's a neuro inflamatory agent.

    To me PMi is all about maniplating brain chemistry and staying open to anything and everything that might possibly help

    My answer is simple, Nothng caused any damage but not everything helped. Untill you try, you won't now if something like acupuncture, nerve blocks, Botox, steroids can actually help. Personaly I think if somone is only willing to try pain meds because they gaurentee relief, They are harming themself. Eventuall they will reach a point where the side efects prevent continuing to increase, that is unles they don't mind using a cath to pee or don't mind the impedence and other horomonal and psychological problems lke depresions that high dose use of opiates can cause. .


    Good luck, Anyone else ever actually gone to an Intensive Pm program or is the easy way of just finding a doc wiling to precribe whatever the patient wants the most effective method to manage CP?
    Take care, Dave

    Last edited by Shoreline; 12-18-2008 at 01:55 AM. Reason: spelling

     
    Old 12-17-2008, 08:56 AM   #7
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    Re: Do pain management clinics help or hurt you?

    Stacy,

    I understand you situation. My PCP handles my pain management, and I would be lost without her, but she only agreed to handle my medication etc. and prescriped specific pain medications as only one part of an overall plan that includes many things, after I had tried pretty much everything else without any benefit and in one case a life threatening reaction. It sounds like you doc would like you to at least explore some other options. There are adjunct medications such as anti-convulsant and anti-depressants that can make a big difference, and injections can be helpful in some situations. For me, the side effects of both the anti-convulsants (severe loss of mental function, plus no relief) and anti-depressants (worked, but caused dangerously high BP/pulse rate) are too severe. Things like massage and accupuncture can also be a big help, I see a massage therapist regularly. I haven't tried accupuncture yet, but I may give it a try later, for now we are seeing how far I get with the massage.

    I'd try to keep an open mind and go ahead and give it a try. The PM doc might have something to offer that could help. You can always go back to your PCP and say "this isn't working, can you refer me to someone else, or can we try another approach?". Personally I don't care whether it's an ice pack that helps the pain, a pill, or massage. All I want is to be able to live my life with a minimum of pain, and as few side effects from medication as posssible. If I need to take 30 minutes to lay down with an ice pack when I get home, or strap the ice pack to me at work, do exercises every day, use music or other entertainment to distract myself, and schedule time to see the massage therapist as close to once a week as possible, so be it.

     
    Old 01-26-2009, 08:59 AM   #8
    mrkwass
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    Re: Do pain management clinics help or hurt you?

    My quick history. I've had six back surgeries. The most recent was a double fusion of L5/L4 in March of 2007. Had another surgery in December 2007 to remove some bone that had grown as a result of the fusion. Then had a spinal cord stimulator implanted in September 2008. I am still having chronic pain problems from a bulging disc at L3 and tremendous pain in the middle of my back from where they implanted the stimulator panel.

    I have been to several pain management docs with little success. That is until I went to a new pain doc. This guy is fabulous. He is the most caring and compassionate doctor I have ever met. He put me on Opana, REMOVED twice a day, and has done two injections. I had an epidural, with no success, and a nerve block at L3. The combination of the Opana and the nerve block has reduced the pain in my lower back by 50%. That's a win!

    Now I have to deal with the mid-back pain from the stimulator paddle. The pain is excruciating at times. I am going to ask my surgeon to remove it.

    The moral of this story is that, in my humble opinion, pain management can help. Seek out the best pain management doctor you can find and do everything you can to help reduce the pain. For example, I am doing exercises from a program called the Egoscue Method. I do them religiously twice a day and I am walking about a mile twice a day.

    It can be done, you can reduce the pain. Don't give up. I wish you the best!

    Last edited by M08; 01-26-2009 at 09:04 PM. Reason: Dosages are not necessary for discussion purposes.

     
    Old 06-18-2010, 02:25 PM   #9
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    Re: Do pain management clinics help or hurt you?

    Quote:
    Originally Posted by Stacy937 View Post
    I would just like to say hello and introduce myself for starters.
    I'm 36 and have Neurofibromitosis 1 along with the chronic pain.I'm glad I found this board because I need some help.

    I've been on Oxycontin for a total of 8 years now. My current dosage isn't working like it once did. My doc offered to up my current dosage last week. I declined and I suggested maybe a muscle relaxer would be better. He added Flexeril which doesn't work very well, if at all. My toes still cramp up when I twist a certain way.

    I called today to make an appoint for adjusting my medication and they referred me to a pain management clinic.
    I've heard horror stories of people losing their medication and were stuck with enduring their pain. Meditation was the cure all. There is no way I would be able to continue with this pain.

    That is what is troubling me if I should call or not. I also don't want to destroy my current PCD trust either by not calling. I am so ambivalent.

    Thanks in advance,
    Stacy937
    DONT DO IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!

     
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