Pain in Pacific Northwest-What to do next?

[Lisa2You]

Hi everyone- Last week, I went to my doctor because of increased pain. I take Hydrocodone daily, but the pain got through anyway. I have canceled so many vacations because of my back (L5/S1 surgery X2). Last year, we went anyway and I was in so much pain I cried the last three days and nights...it sucked! But my family loves going to the beach and so do I so I decided to talk to my doc about it. His solution was to have another lumbar MRI, which I knew would come out as it did the last time. The pain I feel is not pre-op pain, it's different. I could have told him that, but he insisted on the MRI so I did it and sure enough, I was right. He also prescribed Lidoderm patches, telling me how great they are and that "you can't be on pain meds forever."

I went home thinking this miracle patch was the answer. I'd tried a patch a year or so ago and it worked well for a few days; in fact it was the first three pain-free days in a few years. But it was also problematic; the patch fell off, freaking me out because I had a puppy and they're potentially lethal to animals. The pain patch worked perfectly for the three days but the next patch only worked for two days. Well, this Lidoderm patch didn't do crap except maybe numb my skin some. Most of my skin is numb anyway...I don't need a patch for that. Sheesh!

So anyway- today the nurse called to tell me that oh-so-surprising news about the MRI and I told her that the patch didn't work. She said, "well we want to help you Lisa, but you've signed a pain contract and you're already on hydrocodone." Huh? I swear I've read about people who somehow manage more than one medication. I asked for the pain patch for an emergency, as in camping 8-hours from home. I do every freakin' thing to try to keep my pain at bay. We bought a little (cheap) motorhome; I put a foam mattress over it. I use a heating pad at night and those therma-patch heat things during the day. I go for walks even when it's excruciating and I'm limping. I ride a specialized (Tadpole) bike. And still, it sucked last year. I just want to take a vacation; I want my kids to enjoy the beach and I want to enjoy them. I want to make memories like we used to. Is that too much to ask? Has this man never experienced pain?

I'm just so tired and worn out with it all. I'm dreading vacation but putting on a happy face for my family. I don't even know what I'm asking here.

I belonged to this forum when MGH was involved. Someone recommended a pain clinic in Portland. I've still never been to one and it's been four years since my first surgery. I live in the Pacific Northwest so that is a possibility for me. If anyone knows of a pain clinic, maybe I need to go there. When I mentioned it to my doctor, last summer, he just upped my meds and said he could manage my case. I don't get it. He sends me for tests at the drop of a hat. He ordered me to a neurologist of his choosing, saying, "I just don't understand why you're STILL in pain. The surgery should have fixed that." The neurologist said in no uncertain terms that my nerve damage was permanent and that I needed to be on a long-acting narcotic pain patch which he didn't do. What in the world is going on here?

Now I feel like I should have kept my mouth shut. It seems my being honest only made things worse. I just don't know what to do next. If anyone can see through my ramblings to questions that maybe I don't know to ask, please respond. I look forward to your wisdom. ~Lisa

PS Oh and one more thing. I recently started experiencing pain between my shoulder blades and a "catch" at times in my spine there. If I sit wrong or lean over for a bit or whatever, my fingers tingle and turn numb. I told him about this at the last visit and he ordered a LUMBAR MRI.

[Pharmacist.steve]

SO your doc is giving you a short term opiate for 24/7 chronic pain??? That makes a lot of sense - NOT!!!

If the doc really wants to HELP you... they would provide you with a long term opiate - be it SR Morphine, Fentanyl patches, Oxycontin... etc... etc... AND a short term opiate to help with break-thru pain.

Your pain is CONSTANT...but the intensity varies hour to hour and/or day to day... thus the need for opiates for break thru pain...

It is well proven that it is necessary for everyone to get 7-9 hrs sleep EVERY NIGHT.. for overall health reasons... how is a chronic pain patient suppose to get a good nights sleep when their short acting opiates wears off in 2-3hrs???

Many/most docs are being forced to see more and more pts to pay the overhead and often the pts has to draw the doc's attention back to the issue at hand before they leave the room.... and directly ask for a answer/solution.

In your situation, I would sit down and write your doc a letter - fax it - since this is where most of the primary day to day reports come. Explain that your pain is not being managed... ask him/her that you want your pain to be managed - hopefully <5 most days.... tell him/her that you want to get a good night's sleep...

Ask him/her for an appt to discuss to how he/she is going to aggressively address your chronic pain... and that you expect to leave that appt with a plan of action.

If you get the appt and at the end of the appt .... nothing changes... I would politely thank him/her for his/her attempts to help manage your pain ... but in your mind... a better plan of treatment should be available and will be seeking someone who will take a different/better approach.

[Mark N]

Lisa, Steve has written a far better response than I could. He is spot on with his advice and I hope it helps you get better pain control.

I am reading the frustration that your post has through out it. One of the tough parts of chronic pain is the realization that we will deal with pain 24 hours a day for the rest of our life. We go into surgery wanting to be fixed and some people are fortunate enough to have that happen. Others of us, as a result of surgery or further deterioration of our spines, have our lives changed forever. I understand your frustration with not being able to do the things you and your family love. I remember back when I first started my spinal journey hoping each surgery was going to be the one that would allow me to continue with the things I loved to do. Finally my body couldn't go any more and pain took over my life instead of being a part of my life. It was time to take control of my pain. Unfortunately between my pain, meds and limitations I am now totally disabled.
You are a long way away from where I am now but you will have to accept some limitations or you will constantly fight and be discouraged by your condition. I hope you get better pain control so you can do more with your family.

[Diandra]

Your quote "Huh? I swear I've read about people who somehow manage more than one medication. "

Lisa, I am on several medications all given to me by the same pain mgmt. doctor. I am on Norco, Lyrica, Soma. Opana was just added the other day because the short acting Norco is not cutting it anymore(the Norco was MY choice, not the doctors...he wanted me on the longer acting one). Steve and Mark have given you good advice. I am sorry for your frustrating experience with your doctor and hope you hear from someone in your area with a pain doc or clinic.

There are meds out there to help you and you will get pain relief, just keep pushing. I know it is difficult but once you find a good doc, it will make all the difference in the world.

Take care, Diandra

[shotspine]

Hi Lisa....
I sent you a PM re my experience from the south of Seattle. I forgot to mention that we have a poster here that has a Dr. that she adores North of Seattle. I haven't seen any posts from her for a long time but if you want her screen name to PM or Email her, let me know.

Wishing you all the Good Luck you can get as Washington State is not into Pain Relief any stronger than OTC. Dr's that will RX for opiods are like finding life on Jupiter.

[Nana4&cntn]

Lisa, the others have given you good advice! I also take a number of different pain and anti-spasmotics for pain. Hydrocodone was what I took post op, then changed to heavier hitters as my pain has gotten worse. I also would writ a letter to your Doc and make sure he knows you expect to be treated for chronic pain! It seems as though he is stuck in post op pain. I wish you all the best!

Kathy

[Buttons2]

Lisa,no idea where you are located but there is a new pain clinic in Bellingham. Are you taking Soma? I grab mine at the first little twinge!

[Lisa2You]

Thanks everyone- Pain kept me from computer for several days. I apologize for not being around. But I was thrilled with the responses. I think writing a letter is a good idea. It scares me though too. I'm afraid he'll take what little he's doing and stop or throw up his hands. I don't know. But I've GOT to do something. My doc just sent me to a physiatrist yesterday. I was really leary of this new doc as my PCP had questioned my narcotic use in the same breath as recommending him. But as it turned out he really listened to me.

He suggested many new meds and explained how each of the meds I am now taking work...ie; short term. I take nothing that is long-acting. He recommended a narcotic pain patch, such as fentenol, which is what worked so well for me in the past. It is also the med I was asking for "just in case" for vacation. But it is a schecule 2 narcotic so he doesn't prescribe it. He will recommend it and my doc will have to do that. So, we'll see.

On another note, I have high blood pressure and finally agreed to meds for it. But I got really dizzy and woozy and felt like my face was heating up (and ears lol), whenever I stood up. Had my blood pressure taken and it was really low. So then I did some research and found that he had prescribed 40mg where most docs prescribe 10 or 20 and then see how your body reacts. Sheesh! I swear. And get this...my PCP called ME from HIS vacation. I was in pain and he wouldn't contact me, but blood pressure and he's on the phone. Weird. I guess that's because you don't die of pain.

I think I'll post a separate question about blood pressure and pain. It really has me curious now. Oh, and I asked my PCP if my reaction to the Benocar was a usual reaction. He said, "No!" But the information on the drug that the pharmacy gave me made it very clear. All of the symptoms I experienced are the most common side effect of the med; granted it only occurs in 3-5% of the population, but it's still the most common one. How can he not know this? I'm really beginning to question my "choice" in doctors.

Buttons- I'm on the other side of the mountains. I've taken Soma in the past. It worked very well but made me so loopy it wasn't even funny. I also experienced amnesia while on it.

I called my MS doc in Seattle and he made a referral for me to go to the pain clinic at the U of W. Anybody have experience with that one? It sounds good, but they all do. So we'll see. I think my naturally optimistic attitude is dying a slow death. ~Lisa

[Mark N]

Lisa, I am glad the doctor listened to you but I agree I would wonder about your doctor with the dose he prescribed for you. I hope the PM your MS doctor recommended is a good one.

[Buttons2]

Are you taking Benocar for high BP? I went to a pain clinic in Yakima years ago,am wondering if you live in boonies?(not asking you reveal where you are,just thinking you might find help without trip to Seattle) My own experience @ UW wasn't helpful but then I was there for help w/diagnosis & not for pain.Unless you're in a wheelchair there is alot of walking to get to the neuro dept.....

[krashleen]

It may be me that shotspine is speaking of me :o if not, I apologize. I do know of a doc in the Edmonds area.
Please PM me for more information.

Krash

Hi Lisa....
I sent you a PM re my experience from the south of Seattle. I forgot to mention that we have a poster here that has a Dr. that she adores North of Seattle. I haven't seen any posts from her for a long time but if you want her screen name to PM or Email her, let me know.

Wishing you all the Good Luck you can get as Washington State is not into Pain Relief any stronger than OTC. Dr's that will RX for opiods are like finding life on Jupiter.

[shotspine]

Hi Krash.....
Yep, you're the one! Glad you stopped in. I can't sit here as pain is raging but want to PM you asap to ask about your Dr. I'm thinking seriously of moving up to the Peninsula and would like get info on your Dr.

I hope Lisa can take advantage of your info.

I hope you are out and about and living some life instead of being stuck in the pain cycle, or worse yet, more surgery.

Lisa, I would fall over if anyone at UW Pain Clinic RX's meds. I've heard some NOT so good things about that PM Clinic but it's been quite awhile and don't remember from where or what the issues were. My guess is what I found at Tacoma General Hospital's Pain Clinic "under name of Multicare". which was worthless time spent and never went back after my initial 3 hr. exam, most of that time was discussing with a panel of medical people, of which I wasn't in on. They were very clear that NO meds would be RX's from anyone there.

Take Care,

ss

[Lisa2You]

It is not a pain clinic, but the "spine clinic." Don't know if that's different at all. I am in south eastern Washington in the Tri-Cities area. I don't know of anything in this area. It would be advantagous to find a PM doc on this side of the mountains, especially if I need to go very often. Going over the pass from about October through March or April can be treacherous.

The hydrocodone truly works MOST of the time. But it seems I go through episodes for a few months a year where the pain breaks through and it really sucks to not sleep for a few months and to dread every moment of each day.

The physiatrist prescribed Methocarbomol, prednisone, and Lyrica. I'm not stupid enough to start them all at the same time, though he gave no such directions. If there is a rare side effect, I'll have it. :( So I'm starting slowly on a very low dose of the Methocarbomol.

Yes, it was Benocar I was taking for hypertension. How did you know? You know, I'm really beginning to wonder about my doctor. I feel like something has changed and perhaps it has nothing to do with me and everything to do with him. He just seems so off on a number of things. It's kind of scary. I feel like I can't change doctors right now as the SSDI case I've been waiting for is finally coming to a hearing in October. So I'll wait until then and then start looking for someone new, but that'll be a battle I have to be prepared for. ~Lisa

[GardeniaGirl]

Many/most docs are being forced to see more and more pts to pay the overhead and often the pts has to draw the doc's attention back to the issue at hand before they leave the room.... and directly ask for a answer/solution.

.

I had to comment on this.

Steve, my last two PM docs were in private practice. They spent what I now realize was a lot of time with me at each session. Even though the second one had 400 patients on his case load, I never felt rushed in my appts. with him and the sessions were a good 20+ minutes. The first was like a dream - she was this sweet older lady and we would sit and talk for at least 45 minutes per visit it seemed. I would get copies of her case notes and there would be several typed pages often from a visit. She was truly wonderful.

Both of them retired, and now I am at the biggest pain clinic in my city and the doc I see now spends about 8 minutes with me tops. His beeper goes off during session, he often leaves the room at least once during an appt., one time his cel rang and he just walked out to take a personal call about going out to dinner with someone. He seems totally rushed.

he is polite, answers questions, and will let me try any drug I want (I've failed most so there aren't many left to try), but I truly can't believe that this is considered standard practice by a specialist. I can see how huge errors could be made in someone's treatment due to how rushed he is.

And he is the head doc in that clinic...and this is considered one of the best places for PM...since the really good private practice docs are fewer than they used to be.

I personally can't stand it. I feel like a number. Today he was practically walking out of the office as he was telling me how to take a new med I've never tried before.

I should say I am reading the book "How Doctors Think" right now though and my experiences matches stories in that book perfectly, which is somewhat reassuring I suppose.

Anyway, on an emotional level, the longer sessions where the docs were really focused on me felt better - but this guy is doing the same thing they did - just trying me on different drugs until we find something that works. I've had to learn to be a bit more stoic rather than expecting to feel like my doc really knows me.

[Buttons2]

Benocar stuck in my mind from doing research on Lyme disease,there's a protocol in Europe where they use it for pain.etc.

Tri-Cities should have some kind of pain clinic! Geez. It's been nearly 20 yrs since I went to the one in Yakima,you might check there....sure quicker than trip to Seattle.

Frankly,I wouldn't waste time/gas going to UW for anything,but that's just my experience. And referral's take months. My PCP has interns from there that I have to put up with anytime I go see him. Now that I've met a few of them I'm more turned off than ever by UW teaching standards.

I hope you do your own research on drugs. Seems wise to me to stick with your current doc until you get disability settled. Are you aware you can research doctor's also?

Well,good luck & hope you get some relief in near future!

[jtroy]

Hey there Lisa:

I thought I'd chime in as well...you've already gotten some excellent responses at this point. I agree...giving a short acting narcotic to a patient who has chronic pain is just never a great idea. I can tell you I have seen soooo many people come through here over the years who were dealing with the exact problem you are.

The problem with using the short-acting narcotic for chronic pain over time is that it can set patients up to have problems with drug seeking/pseudoaddiction/addiction/etc. You know well that when the pain spikes horribly even though you took your Hydrocodone and hour before the instinct is to reach for the bottle and use another dosage....that is simply human nature....pain is noxious and none of us can stand it.

There are alot of pm docs out there right now who simply don't want to use the long-acting meds because they feel that they are "last resort" meds or something....the problem with that logic is that whenever you have patients who would benefit from them but elect to script Hydrocodone instead, you really are cheating that person out of a certain quality of life.

I don't know if a letter is the best way to approach the issue....if it were me I think I'd probably be looking for another pm doc....folks here can be great sources for that....I just wish I knew of a doc in your area. However, if you don't let your doc know what is going on, he will only continue to practice this way whether you stay or leave.

"You can't take pain meds the rest of your life"......please.....if there is a medication that can be taken over time without causing major issues it would be opioids. Not to say they don't cause some long-term problems or potentially could cause you some issues later in life.....however, whenever you get to a level of chronic pain like you and I are in you realize that the risks are worth taking in order to get relief from the pain---which only serves to enhance your quality of life, make you more productive, and in the end likely lessen your potential for taking other medications.

Lastly....I thought I'd share something I've been preaching here for a long time now. When you decide to approach your doc about your pain (which you will have to do whether you stay or leave) try not to fall into that rut of discussing medications, dosages, side effects, imaging studies, lab test results, etc. Talk about how the pain affects you life. For example:

In the letter tell him about the quality of pain (i.e., it burns/electric/etc.) intensity, and how it has caused you to miss work, how much time you are now spending in bed.....how much time is being taken away from your kids....they school functions you are missing....the meals you cannot prepare....the trips youcannot take anymore bc you can't be in a car longer than x amount of time....the exasperation your spouse feels....your depression about not being totally there for the spouse and kids.....how you feel like your body is now controlling your life and there is nothing you can do about it bc the Hydrocodone just isn't covering the pain....how you never get more than 3 hours of sleep at a time and find yourself falling asleep during the day, at all hours of the night, etc.......I mean, the list goes on and on.

I know that seems a bit dramatic....however, I can tell you that I've dealt with many pm docs at this point. All of them were a million times more responsive to me whenever I would talk about how the pain was making me feel like a failure as a father bc I'm in bed all the time. If I elected to instead talk about my meds, dosages, side effects, if this or that worked, etc., it just seemed like they didn't pay as much attention. Doctors can relate to us whenever we humanize this pain-----even pm docs will tend to not really take to heart what pain is doing to te patient unless that patient tells him/her. In the end, it isn't dramatic whenver it is the truth.....if those things are starting to happen then it certainly is time for you to find some relief....there were times whenever I would let them know that if I didn't have my wife and child I'd end my life instead of dealing with this pain (you have to be careful with that sort of talk though....)

Anyway, I hope that helps some....I know that all of us cp'ers tend to get caught up in the whole cycle of trying a med, noting its effects, going back to the doc and talking about it, etc., and when it's all over we totally forget to let the doc know that we missed 4 school functions that week bc of the pain. Plead your case about the Fentanyl patches....I think that is an excellent choice if you've had them in the past and they worked well for you....if you were allowed to try them there is just no doubt that you'd be able to really reduce the amount of Hydrocodone you'd need bc you'd only need to take it for bt pain. That's another positive...less Hydro....

If you ever want to chat or talk or just have questions, feel free to email me at: tjandfon@hotmail.com. I've been coming here for many years now and have been a cp'er for years as well....there is alot of information we all have here and sharing it is important. Feel free to email anytime...

Regards,

T. Jones, DVM

[michael178]

I went to both U of WA and OHSU, and got help. But I was there for more genetic type stuff then neuro. Good luck.

[shotspine]

Hi Lisa...
Sounds like he's covering all the bases. Methocarb...is generic Robaxin, a muscle relaxer, predisone for inflammation and Lyrica for nerve pain. Hope some, or all, help but no pain meds in that cocktail. I don't blame you for not wanting to travel over the pass in the winter. To my knowledge, I've never seen anyone on this forum from Eastern Wa. Since it's hard to impossible to find good PM on the much higher populated West side, I am sure it's worse over there. I was born and spent my first 10 yrs. in Spokane.

Other than contacting Krashleen and working out the "winter pass" driving conditions, I have no idea what to say except to get on the phone and call every Dr. East of the Mtns. I had to do that and asked Very Clearly that I needed a Dr. that would RX opiods and never got a direct answer so that's even kind of iffy. Saw Lots of Drs. ONCE and just kept moving on until I found someone to help me. That was an expensive way to go as I had no insurance and had to pay cash for a bunch of wasted time.

Maybe call your pharmacist, rehab centers, senior services, etc for a recommendation. Knowing what it's like in this state, DO NOT fire your Dr. until you find someone better. Hydrocodone is better than nothing.

Please keep us informed as to how your journey works out.

Good thoughts and wishing you a Short Road to your destination.......a Dr. that will help you.

ss