Pain Management Dr’s.

    • Anonymous
      August 10, 2008 at 2:37 am

      I was wondering how many are forced to deal with Pain Management Clinics in addition to seeing their Neuro.

      As I stated on another thread, I bounced around Drs. trying to get by “on the cheap” and it came back to bite me. Now I am back to my old Neuro at the research University and having to deal with “Pain Management” for the first time.

      I had my first appointment at a suitable Pain Management Clinic last week. I had a good visit, The Dr. first wanted to do a block but instead opted to change my pain meds. Off one narcotic and on to another. He felt like I wasn’t getting the benefit I should have at the dosage I was taking. Maybe so… my pain was getting worse and I had been on the same drug for 3 or 4 years. So it is off the one….work through the withdrawl.. and on to the next habit forming narcotic. Whee!!!!

      I truly wish I didn’t have to deal with the pain I have. The Dr. asked me what my goals were– I said to keep walking !!! In fact, the longer I am on my feet, and the less I am needing this wheelchair so much the better, if you know what I mean. I do realize that I will never be pain free, just hope that I can tolerate a level where I can still be nice to my family, and kind of get along with everyone without being so darn irritable.

      The Pain Management Clinic certainly has a pile of rules, none are impossible to live with. They seemed genuinely concerned and were nice to deal with. I previously went to a different Pain Management Clinic in another county (recommended by the neuro I left). My first visit was marred by their misinterpretation of my desire to protect my privacy where medical records were concerned. The second visit they asked me “How my BACK PAIN was. After I told them AGAIN that I had a peripheral Neuropathy, they said they did back and neck pain, and referred me away.

      Good Riddance !!!!

      Would anyone else share about dealings with PM clinics? I know that not all cases of CIDP result in the level of pain I have to deal with, but I know some of you do.

      Thamks for sharing and your help in advance

      Dick S

    • Anonymous
      August 10, 2008 at 2:41 am

      Oh, by the way, I was not intending to pry into anyone’s pain medication, only your dealings with these clinics. Are they effective? Do they stay “available” when you are in dire need? Do they stay attentive to changes? Do they view you as druggies needing a fix?

      Any of those kinds of things, and whatever I didn’t think of

      Dick S

    • Anonymous
      August 10, 2008 at 7:20 am

      Hmm! I am not sure about this question but hope you get an answer soon.Pretty sure someone here will have the answer. I do know alot of doctors are trying to give their patients meds that are not as addictive. But when I need something I don’t care if it’s addictive or not.
      I am one where I am pretty good about not taking those meds but do have two narcotics I take. But I try to not get addicted to them or abuse the RX’s.
      Pain management actually helps many and some don’t. I wish you my best!

    • Anonymous
      August 10, 2008 at 8:35 am

      i deal with a high level of pain everyday, mostly in my feet and legs. i usually describe the pain as, “well, i would prefer to take a chainsaw and just whack them off”. knowing that would be too messy i did goto a pain clinic. my mom had been going to the same clinic for some time, as she has had multiple back surgeries and now rods in her back. the clinic seems to be great for my mom with a back problem, but i didn’t feel comfortable there at all.
      where i live the clinics are able to make up rules that are above and beyond state laws and they strictly abide by them. i understand there is a large population of drug seekers, well according to the pain clinic.
      i had to sign away so many of my rights just to be a patient there. the doctor didn’t know what CIDP is and when he seen a positive THC in my urine he really showed his true colors. i was not even allowed to explain my stance. i was wrote off as another “junkie” in his book. he then told me, “well all i can do for you is start you on methadone once you have a clean urine”.
      the contract that they wanted me to comply with was to goto their office once a month for a visit and the refill of whatever narcotic they have you on. you are subject to pill counts and urine screens based on rolling a set of dice.
      i seriously write off that whole exploration to modern day REEFER MADNESS!

    • Anonymous
      August 10, 2008 at 9:38 am

      I would like to say several things that I hope help.

      First if one is on the same pain medicine for a long time (like years as you were), it sometimes loses its ability to work as well because the body gets used to it (all the pain receptors are filled and the body is used to the metabolism). Often pain professionals talk of drug rotation–changing to another drug that acts a little differently or is metabolized differently so that you get better pain control with less drug and therefore less of the side effects.

      Second, I do not know the answer to this, but would think that a block would be really hard to do–blocks work when there is one major nerve or nerves coming from one area and CIDP is usually a pretty diffuse problem–lots of peripheral nerves.

      Third, keep working with the pain clinic. One of the biggest things I have found is that (at least in kids), the pain specialists really treat pain as a complex, life-impacting illness. A whole lot of people hope that a medicine will be a magic cure to take away the pain, like a lot of us hope that a medicine might be a magic cure to make us thinner. More than any place (except I hope where I work), the pain clinic at the hospital I work in treats the problem as a problem of life-impacting consequence and trys to find a number of ways to improve the pain, but mainly to help people to keep living life despite it. I have not been to a pain clinic, but I have taken care of kids that have been there and heard the parent struggle with this difference. I try to tell them that the pain doctors are not saying that the pain is in their heads when they require psychologists to see the kids–they are trying to say that pain is hard to live with AND that we all have a lot of power in our brains to impact life. They try to teach biofeedback sometimes and relaxation techniques sometimes and let the kids vent, as well, about how hard it is to not be like the other kids in activity and ease of movement. The pain clinic here also requires evaluation by PT–not as a statement that kids are lazy, but because often gentle stretches or slightly different ways to move or walk can help a lot. When we hurt, we automatically do things differently and this may not be the most efficient or “normal”. I do not know if this approach is what the place you went to uses–a whole body approach, but since you are a practical person, I hope you can see that “these caring” (as you state) people may be trying to care in a different way.

      My fourth suggestion is to work with them. Tell them how changes and trials impact your life. They may have suggested it, but perhaps writing down once a week what the pain was like in “level”, but more importantly on how that impacted your life both when it was worse and when it was better. What you were able to do when the pain was less and wanted to do but could not when it was worse. Everyone has different perception of pain and different way to express it. Sometimes the most effective way to communicate is not a “subjective” level, but how “objectively” it impacts life. I hope this is clear because pain clinics can make a big difference if communication can happen both ways. But for it to work well, it takes time and it takes effort on both sides of the “table” as well as medications.

      Fifth, I know there are many places that do not understand how much impact this kind of pain has on life. Just what you said, Dick, makes me think this pain managment clinic might be one of the good ones. I am not trying to justify all of them or the approach, but I have come to see the benefit in it over years of working with children with significant pain (mostly from cancer or cancer surgery). I also have seen how hard it is at first to make the connections and establish the communication for it to work well (and to sometimes set aside years of not communicating well enough or the me vs them approach that can lead to). A new place is a new place to start again with all putting the emphasis on trying to help the pain. My small, gentle suggestion for Flower is to put aside the Medical Marijuana issue. The pain clinic you went to has as you state, said that they cannot/will not deal with this. You are not going to change their minds and they are not going to change yours about this issue, so why not make it an issue on which you agree to disagree and try to move on if both sides can. You could give up or work with them to see what they might do to help your pain keeping the emphasis always on pain and its management separate from the issue of MM. It seems your pain is really bad and you need a different approach. Methadone is a really good narcotic pain medicine–it is just hard to get right as a pain medicine. But it is convenient to take because of its long half-life and sometimes has fewer side effects such as sleepiness at an effective dose. It also seems to have less tolerance build up so it is good for long term use. Our hospital is beginning to use methadone in children more and more because of these positive aspects.The biggest problem with it is that people still think of it adversely because of its use in the past for prevention of withdrawal rather than its real use as a pain management medication. But again, it is a really good pain medication.

      WithHope for a cure of these diseases and a better life despite them until then.

    • Anonymous
      August 11, 2008 at 9:05 pm

      I see a pain management doctor along with my neuro, and many others. I take avinza ( a control release morphine) and percocet every day. I’ve been seeing him for at least three years. I don’t know what I would do without him!I also have back problems though…so I have to have the pain medication for that plus the pain caused from the CIDP (I have a lot of leg pain). The pain management doc understands that I have pain caused by the CIDP…not all doctors believe this, I think. The bad thing is, that I have been taking it for so long at such a high stength, that my body has gotten used to it. I have a high pain tolerance, but now, I have a high pain medicine tolerance also…not good. You probably know about this…getting used to a medication so that it doesn’t work as well anymore.
      My docs are still trying to figure out what treatment to give me for the CIDP since I was just diagnosed in June. But I was already having IVIGs once every three weeks anyways for CVID. I have my first appointment with UT Southwestern Medical Center on September 2nd. My neuro is transferring my care to them.
      I know it’s really hard to deal with the pain and weakness a lot of the times…I truely understand. If I don’t have to deal with a lot of pain, it’s not being able to walk…I hate it! Pain management has really helped me…I hope you find something that helps you just as much. -Amy-

    • Anonymous
      August 12, 2008 at 3:21 am

      I had a doctor mention to me one time about possibly sending me to pain management. But the clinic here in my town only deals with certain diseases and mine did not fit in their criteria. Lupus!
      I hope I never have to sign papers for the drugs I take. I’m not a drug seeker at all and know many in here are not either. But when I am in pain, I want something to help it. There are day’s I try to tolerate my pain without taking alot of meds. But when I hurt! I want my drugs, need my drugs and will tell my doctors I hurt and need something to help it!

    • Anonymous
      August 16, 2008 at 11:59 pm


      It has been a challenging ten or eleve n days. First I had o get down off the methadone, which is what I was taking. I had been taking it for almost four years. I was somewhat dealing with my pain. prior to this appointment.

      He took me off methadone and put me on MS Contin. He said methadone is getting a bad rap, and its effectiveness can diminish over time. WithHope, you were on target about that.

      Friday morning, I was totally suffering. I was having so little relief. I did have some breakthrough meds, but I was so far behind in managing the pain. It was bad. I was going to call them when THEY CALLED ME!! I was shocked. They actually called me to check on how I was doing. I relayed my concerns and they upped the amount I could take. It is Saturday night/Sunday morning now. I am still suffering. I have not slept more than three hours in a row, mostly through the night it is every two hours. I have been feeling so bad. They said they would call me back Monday to check on me again.

      After having such a terrible experience at the other Pain Management clinic I went to, I was totally suprised about these folks. I am sure they will work with me to cover the pain and get me going in the right direction.

      I did have to sign papers about narcotics, taking narcotics. and will probably have to take pee tests for other drugs for a while to establish a history with them. I do understand that people will try to take advantage of pain clinics. Like everything else, if you are who you are and take what you need, things will be fine.

      Right now, the pain stinks, I would like to chop my legs off. But I know there is hope somewhere.

    • Anonymous
      August 17, 2008 at 10:42 am

      Dick, hang in there. It sounds like you have found a clinic that is patient centered and willing to work with you, not against you. if you can get through to tomorrow, hopefully they will be as helpful again as they were yesterday.

      Thinking of you and hoping the pain abates quickly.

    • Anonymous
      August 22, 2008 at 8:54 pm

      OK, So I went back to Paon Mgmt Clinic today. I had a terrible week. My family was sympathetic, but I was really a butthole. I didn’t mean to be, but when the pain gets so bad, it dominates your life. Anyhow…

      I took my wife with me. She explained to the Dr. how I was.

      After today, I found out a few things that explained a lot.

      1.) replacing my old perscription with the new one was analagous to trading in a NASCAR engine for a VW.
      2.) The potency of my treatment has been more than tripled in two weeks.
      3.) It is no wonder I was hurting, I was not getting more medication, I was getting WAY LESS.
      4.) The pain clinic is starting to understand that I am in real pain, and not looking to sell my drugs for profit or get a buzz or whatever. I suppose that people do abuse these clinics and it makes it harder on legitimate patients. I really suffered for a couple of weeks.
      5. I hope this is enough. If not, I will call and talk with them. My wife really helped the understanding.

      Is this something anyone else has had to deal with?