Pain Management, and a New Friend

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Fri, August 31, 2007

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Today at work I met a woman who suffers from chronic pain. Two total strangers with a common bond. I think we were both starved for someone to talk to, and could have gone on all day. We had a very interesting conversation about how it affects our lives. She as a sufferer, me as a caregiver.

We both agreed that one of the most difficult aspects was getting people in the medical community to understand the difference between someone in real pain and someone who is a "drug seeker." Neither of us had an answer. She told me that on several occasions, out of frustration she stopped taking her pain medications all together. But the pain became unbearable, and she immediately went back on them.

Another issue we discussed was inadequate treatment for pain relief. It seems that medicine has not only the knowledge, but also the technology to prevent, as well as relieve most pain. Why then is poor pain management so rampant? We also discussed how important it is to stay on top of your pain before it gets on top of you. I can honestly say that the majority of ER visits that Stacy makes is because her pain gets the best of her. It becomes a vicious cycle; as her pain escalates she tends to sleep more and doesn't eat enough or drink enough fluids. The end result is dehydration, and nausea from taking the pain medications taken on an empty stomach.

I have accompanied Stacy on many of her pain doctor visits, and it surprises me that a multidisciplinary team approach is not used. Why isn't the pharmacist more involved in the treatment plan? I would think that pharmacological strategy would certainly require his or her input. What about the complex psychological factors? One would expect that a psychologist would also be a part of the pain management team.

It is so sad that we have learned all these things after so many years of trial and error. Perhaps this is where patient advocacy steps in, and I must ask... Why isn't there a patient advocate on the management team? We could have avoided so many mistakes if we only knew that we needed all these things to properly treat her chronic pain.

So, Stacy is San Francisco trying to put together a team, and I have found a new friend. It was a good day!

-Candy

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Bill

9/ 5/07 10:19am

Hi Candy, Thanks for putting up such an honest post. How to get doctors to take an in-pain person seriously as not someone who is simply drug seeking.

Not easy in my experience but these are some things that have helped me all the way through and now, with a great doctors help, I about to do a one month trial of a pain pump (if you want to know more about that go to medtronics.com - Intrathecal drug delivery).

I am a father of two girls (17&20) I can imagine if this was going on for them my wife and I would be all over this BUT Stacey really needs to get involved(with your continued support) to get the partnership of a doctor that she needs.

Take meds only as prescribed

Drink a lot of water

Take meds with food - always

For this part, in other words - don't end up in the ER because you, the pain patient, didn't do your part of the pain care. It sounds so judgemental and for that I am sorry but helping Stacey to take charge is the best gift you can give her.

Other thoughts -

Always have someone with you at meetings with doctors. Sometimes when the doctor is talking and explaining the next painful or difficut thing I have to go through my brain shuts down. I am blessed to have a wife who has really been there for me. Being the mom of an 18+ year old is a very different relationship. Could someone else serve as her pain support partner in addition to you? Maybe a team is needed?

If you have a Doctor who won't get on the team. Find a new doctor. Get to a pain center. The doctor is an expert on the team but she/he should not be in charge. The pain patient has to have a clear and strong voice.

Are there things that make it worse? I know the answer is yes but I also know it is difficult to have pain stop things in our lives. However, part of taking charge is altering our lives so it doesn't go from bad to worse.

Last thougtht and you've probably already walked this issue through. Has she been treated for the depression that so often accompanies pain and pain meds? If you look on the site this is a big issue. It took me a long time to take this aspect of things seriously. It is another thing that addressing it will really give her more power and help her to more in charge as she feels less depressed.

I hope this helps.

peace to both of you,

Bill

Candy Franks

9/ 8/07 2:14pm

Hi Bill

Thank you so much for your sage advice. As we try to put together this chronic pain puzzle it is the input of people like you that helps us the most. Stacy is busy taking control of her new life, I am sure that in itself is very empowering. Her medical team is falling into place. I think that one of the reasons we have had such a difficult time is that her problems started at such a young age, a time when her friends were off to college and doing all the things that young people should be doing. But, she is a very mature young lady, and has a great support team at home. We have addressed the depression problem, and after some juggling have finally found the right medication for her. Good luck Bill....and again thank you

Candy

Mattsmon

9/ 5/07 12:01pm

Hi, there. You have certainly struck a nerve for we pain patients about pain control in this country. You are correct when you say that not only do we have the means to provide adequate relief for sufferers and the knowledge, but it's the bad few who make the rest of us suffer.....the ones who truly DO want to get high. As your friend knows, anyone who has dealt with the ongoing SIDE EFFECTS of long term narcotic therapy would be hard pressed to understand WHY a person would simply want to take a drug for entertainment. Doctors are forced sometimes to have to make the decision about who is and who is NOT in pain. If you were a physician, would YOU want to make the wrong choice and lose your license after all the years it took to obtain it? Please don't misconstrue what I am trying to say......believe me, my story goes on for years and I am one of the lucky ones......I recently replied to Bill, the gentleman who commented to you. He is about to go through a pump trial and I cannot wait to see how he does. I am the recipient of an intrathecal morphine pump and before it, I WAS your friend. You get so tired of the pain taking over your life, that sometimes you resolve that you WILL get off all your meds and of course, that starts a vicious cycle of making you think you actually have control of the monster that controls you......I, too, (in the beginning) have thrown away meds and vowed to "get back on my feet" alone and as your friend knows, you can't do it by yourself. You are both very fortunate to find each other. One thing I will add to Bill's comment (which was right on target) re: the antidepressant meds......be very upfront with your doctor when discussing antidepressant medications as while they can be (and ARE for the most part) a God send for chronic pain patients, they can also put on many pounds. That happened to me and while I was grateful for the help it (Paxil specifically) provided, eventually the 30 additional pounds only added to my chronic back discomfort. I know they affect men and women differently (as they affect individuals differently), but when you are a woman, all those extra pounds ON TOP of a chronic problem can make a difficult situation worse. I'm NOT saying don't do it, I am saying address the weight gain side effect up front with your doctor, as it is now a well documented one. There is something that can be given as an adjunct therapy with the antidepressant which will help control the weight gain. (I am not talking about weight from over-eating.....ask anyone who has been on long term antidepressant meds and they will confirm that you can starve, exercise for hours a day to no avail and not drop a pound.) One other thing you said REALLY hit home with me, too. I WOULD TRUST MY PHARMACIST ANY DAY before most of the doctors I have seen! Have your friend check all of the resources available in your city, as many true pain clinics ARE, indeed, multi-disciplinary and do not rely on just medications, although they do seem to be the best at the time we live in. Best of luck to you both and it's wonderful that you can share with each other.....I hope it is a mutually beneficial relationship......there's power in numbers!

Matt'smom

Candy Franks

9/ 8/07 2:27pm

Thank you so much for your response, you hit the nail on the head on so many levels. I do understand the precarious position that doctors are in, and I certainly would not want to be in their shoes. Sadly enough it is those who really need adequate pain relief who suffer. Do you still have the pump? How is it working? What do you take for breakthrough? I will pass all this info on to my friend.

Thank you

Candy

Mattsmon

9/ 8/07 10:10pm

Much to my shock, I have had the morphine pump for 5 years now!! I keep telling everyone 3 years, so when I looked it up on my little calender books that I carry in my purse (and save year to year) I was very surprised to see I have had it that long!! Mine is an old model and only lasts for about 6 years before the battery needs changed. That is no big deal....outpatient surgery---they go in, replace it and you are in and out like having a wisdom tooth removed. I am hoping that my insurance company will spring for one of the new ones which I understand are much smaller (maybe a little easier to get adjusted to having inside your body), AND they are capable of holding a larger amount of medicine, thereby making your refill appointments much longer in between. I go every 5 weeks for a refill. They are no big deal.....as I told Bill, ( the gentleman who is having his pump trial soon) huge needle, tiny stick, little band-aid and NO, IT DOES NOT HURT( except your insurance company's or your purse!) I still take Dilaudid (morphine) for break-through pain (I wonder why they call it that??) but I make one prescription last for 3 months, so I guess I might take 2 or 3 of them every 4 days or so.....I don't take them every day and it just depends on what I have been doing physically or sometimes on the weather. I take very, very little medication compared to when I began this journey in November, 1994. As you may know, once the neurosurgeon ( or just plain surgeon) has cut what they need to cut, they don't relish the thought of having you as an ongoing patient. No regular doctor wants to continuously provide prescriptions for heavy duty drugs on a regular basis (surgeons cut, sometimes they fix, but they DON'T want to see you come back and back and back!!!) It's when the surgery does not work and the patient continues to be in pain that the trouble starts. I'll try not to make this long for you.....When I started you could only get the heavy meds from a psychiatrist, because they are schooled in the chemistry of those meds. It was very frustrating to go in every 2 weeks or so and have him say "SO HOW DO YOU FEEL?" and you say "WISH I COULD SAY GREAT, BUT NOTHING HAS CHANGED!" They know you are not hurting because your teacher called you a name in the 4th grade, so they just give you pain pills and let you go. IT WAS VERY HUMILIATING. I have been through so many doctors, medications, "new" procedures, shots, "work hardening" programs, and on and on, that I pray your friend reaps the benefits of the progress (albeit, not much!) that has been made over the last decade for chronic pain patients. I truly didn't want to make the statement to you about the doctors that I did, but it just came out as a result of the dr. appointment I had that particular day. Most doctors are simply afraid of losing their licenses due to prescribing the amounts of the kinds of drugs we need. They are governed and their prescription pads are monitored as closely as we monitor our children. The really bad scenario I was thinking of when I responded that way was this---suppose at one point in a person's life they misuse drugs for whatever reason. We all do stupid things sometimes. Then, later on in life, what if that person has an accident or has the misfortune to become a chronic pain patient through no fault of their own. WHAT HAPPENS TO THEM?? Do they deserve pain meds for their pain? YOU BET! Will a doctor, knowing that person's history of perhaps addiction or addictive personality prescribe those drugs and risk not only the patient's well being, but his or her own career and medical license? NO WAY. I'm sorry.....you can tell this is a very, very personal subject for me and I don't mean to lecture or talk AT you instead of TO and WITH you. I have not read your friend's history yet as I am new to this site, but will you fill me in a little on what ails her and what she has already tried in the way of doctors and pain management? If I know a little of that, perhaps I can eliminate some steps for both of you. I also think I heard you say that you are a care giver for a pain patient.(?) YOU HAVE A VERY DIFFICULT AND VERY LONELY JOB---I know you know that, and God Bless You. I hope the person you help knows how fortunate he/she is. So, tell me a little about your friend's situation (I am a computer dumb-dumb, so I don't know if I could navigate and find it myself) as well as YOUR situation. It's hard to be the one in pain, but I often think it may actually be more difficult to be in YOUR shoes!

Matts'mom

(PS The pump gives me 9 mgs. of morphine over 24 hrs. in a continuous flow directly into my spine. I have no need to digest oral meds, therefore using a miniscule amount as compared to before the pump. I also take the Dilaudid (4 mgs.)--2 or 3 pills every 3 or 4 days for break-through pain. THAT'S IT. Many pump patients have a combination of drugs in the pump---it's just trial and error and what WORKS for that person. On a DAILY basis I used to take 14 Percocet, 8 Methadone, 3 Neurontin (seizure drug that may work for some for pain--not me), two antidepressants, Flexeril / Soma (muscle relaxants), Ambien (sleep) and so many things for constipation (WORST side effect of narcotic meds) that I finally decided it was just easier not to eat than to have to digest it and not be able to eliminate it!) Please feel free to ask me ANYTHING you want. I will be as forthcoming and honest as I can with you and NO QUESTION is stupid when you don't know the answer!)

Candy Franks

9/ 8/07 11:46pm

Thank you once again for your reply, wow, you have really had a tough time, but I am so impressed with your progress since the pump...kudos to you. I think I need to clarify a few things about my post. First of all I really don't know a detailed history about the woman I met at work. It was one of those chance encounters where we found a common bond, however we don't chat often. I will certainly pass on all the information you have covered. I gave her the link to this website, so maybe she will chime in.

I switched gears in the middle of my post and referred to Stacy....she is my daughter, and is one of Health Centrals experts.

Stacy suffers from chronic pain stemming from TMJ Disorder. Last year she had joint replacement, and was diagnosed with chronic pain. Check out her profile, I think it will answer all of your questions. (Stacy Stone). I was her caregiver until recently when she moved to SanFranciso. I have a new entry ready to post that will explain more about her move, and how it is going.

Reading your list of medications prior to the pump is like reading the who's who of drugs..LOL...a little like Alice in Wonderland. But it sounds all too familiar, Stacy has been on each of them at some point. I certainly know about the constipation, I just emptied my medicine cabinet of enough drugs to treat the constipation of a small country....HA.

Good luck to you....I look forward to reading more, so be sure to keep posting.

Candy

Mattsmon

9/ 9/07 3:43am

Something that comes along with even the best cared for chronic pain sufferers is little sleep, so here I am at 2 a.m. writing back already! Now I understand.....your daughter Stacy suffers from a bad case of TMJ and sounds like she's been through the ringer. Out of the six kids in my family (the one I grew up in), three of us have terrible TMJ and 3 don't. Long before my back issues, I was treated in Monterey, CA. for TMJ in 1978! The thought then was to grind down the teeth so they meshed perfectly, hence creating a "perfect" bite. We spent around $5000. at the orthodontist for that treatment and then he made me a fancy looking "bite plate" to help. Unfortunately, they now know the grinding down was the WORST thing that can be done for TMJ. Mine is pretty well taken care of, but my youngest sister sounds like your daughter's case. She has had horrendous problems and too bad for her was operated on by a negligent surgeon when her husband was stationed in Tx. She has excruciating pain that she lives with (we are New Englanders originally!) and has had countless additional procedures to give her some relief. I think she takes muscle relaxers and something akin to Oyxcodone (not sure as she hates to take anything), but she has been told that by the time she reaches her mid fifties, her jaw will be locked more so than not! She is getting all her talking in now! Not to make light of it because that kind of pain is certainly just as difficult to manage as any other, and let's face it, it involves your HEAD, too. There is a lady who writes on here (think her name is Anne) and she and I got off to a bad start. We have since discovered we are on the same team, but you might want to check her story. I know she just had her joints in her mouth removed and has plastic cement or bone in there and is having much discomfort (perhaps allergic reaction?) with it. My sister's next step will be the joint replacement and just listening to Anne makes me want to shout 'NO', but you can never tell who will or won't be a good candidate for the newest thing. How old is your daughter? It must be so hard for you to be away from her.......if it's any comfort to you, where she is has some of the best and most current medical and dental care in the world. I'll ask my sis if she has any advice or shortcuts or anything to help Stacy. Also, I'll see if there's any better meds for her......

Matt'smom

Candy Franks

9/ 9/07 9:10am

Hi again

Oddly enough Stacy went through years of braces to "correct" her bite, she had more appliances in her mouth than I can count. One of the theories is that by trying to change her bite so dramatically they may have actually done damage to her jaw. She was also attacked by a dog when she was 12, resulting in severe facial trauma. I think the combination of these two things is the underlying cause of her problems. However we will never really know. Thank you again for the information...especially about the cereal. I am sure she is on her way to the store already.....LOL

Candy

Mattsmon

9/ 9/07 12:05pm

The older I get, the more I think if all these "experts" just left us the way God meant us to be, we'd be FINE!! She is so very young to have such hard things to deal with. I don't want to sound like a cliche, but that's probably why she is the wonderful person I listen to you talk about. I have a 26 year old son who is the best thing that's ever happened in my life and when he was young he had some very difficult things to contend with----He came through them with more courage and grace than most anyone could and today he is the most handsome, intelligent,delightful, compassionate, wonderful young man God could ever have blessed us with. And if it's now MY turn to take the hard knocks, by golly I can do it as long as he is 100% fine!! I think I may have seen a photo of your daughter (I looked up Stacy Stone) and she is lovely....too bad she's in CA. now that he's single again after 3 years with the drama queen....thank heavens they didn't marry! (Of course I don't know Stacy's status!) Is she a specialist with TMJ (I think I read something on her site about lots of literature coming out soon on TMJ?) If that's the case would you let me know so I can perhaps share new info with my sister?

THANKS and as a mom I understand how very hard it is for you to be away from her. But you know what? You sound like the kind of mom who has equipped her with everything she needs to be an asset to everyone and everything she touches.

Matt'smom

(Make sure she drinks lots and lots and even more water when she is finished eating the All Bran with Yogurt Bites!)

Mattsmon

9/ 9/07 3:48am

Candy,

I forgot to add the best thing I have ever found for constipation and it is just a cereal!! It's Kellogg's All Bran with Yogurt Bites. I have tried everything and nothing worked until that. One of the great things is that it's good tasting AND you can eat over a cup and a quarter and still be within caloric limits! Believe me, from taking 8 or 9 Senecot a day PLUS stool softeners and all the prune juice you can drink, ONE BOWEL of cereal, I CAN DO!!

Matt'smom

Helencal

2/11/08 8:15pm

I have found a pain clinic at our military hospital here in Hawaii. Kaiser HMOs are also setting up pain clinics. I see an RN (who puts it all together), a medical doctor, a pharmacist, and a behavioral psychotherapist who all work together as a team.

Yes, you are right, teams are necessary for chronic pain. Ge rid of any health professional who will not prescribe needed painkillers. They are poorly informed and cruel.

nikki moore

7/18/08 1:21pm

I also suffer from chronic pain, fibromyligia, deg. discs, etc. my problem is every since we moved to a military base Ft. Campbell, KY I have not been able to get the care I need. $ months ago I was on high dosages of narcotics but they were gradually increased over a period of 5+ yrs. Now the doctors here ob base refuse to prescribe pain meds and the surrounding area has the same attitude not only to me, pretty much anyone needing pain mgt care. Can anyone reccomend a good compassionate pain mgt dr or family practice dr not affraid to prescribe narcotics to someone with legit pain? Please help.......

Pain Management, and a New Friend

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