Chronic Pain

I thought it would be interesting to see how many of us are treated for our pain in a PM Program. I have had a great experience in one, but find many people have never even heard of it. What are your experiences with pain management in your healthcare? What does your program entail? Do you meet regularly, what types of doctors, etc.?

I'll start. I didn't get into this pain management program until I had gone through dozens of doctors and a failed surgery, and they all threw their hands up not knowing what to do with me. Once in this program I had an extensive evaluation, had to complete a mandatory pain management series of class, that included sessions on stress management, had to have a certain amount of one on one sessions with a therapist that worked solely with chronic pain patients, and then with the pain doctor who dispenses my meds. I meet with him about once every month or two and we make any necessary adjustments to my medications. The therapist and other classes are available to me at any time. I find it's been the best thing that's ever happened to me since this all began! It was the first time I felt like I was around people who truly believed and understood my pain.

I echo your sentiments about pain management, Nicole. I've had so many failed surgeries that I lose count sometimes, and pain management has been the only thing that has made a distinct difference in my treatment and pain.
I am not in a 'program' at the moment however have been in them in the past. I have a feeling when I move back to California I will be going back to a practice where they like you to meet with psychologists regularly. They don't have classes, but I like the idea of a team approach and they definitely have that.
The greatest thing is that my pain doc in SF is fantastic and really knows who the great docs are in the city, which makes it easier for me when asking for an opinion on a referral.

Anyway, pain management has made a HUGE difference in my life, and without it, I wouldn't be as functional and accomplishing the things I do day to day now. I'm really grateful that my doc has been willing to work with me to establish meds and treatments that work for me.
Stace

I've actually had some really bad experiences with PM doctors. My first one threw drugs at me for 6 months (everything from Percocet to Methadone), tried Lidocaine and Cortisone shots around my spine which seemed to help for MAYBE an hour (and since I got them every other week, this was unacceptable) then finally he sent me to have an epidural shot. The doctor who did this actually severely damaged a nerve in my back during the procedure and I still have TERRIBLE pain when anyone touches the area. After all of these options failed, the PM doctor told me there was nothing he could do for me and said he would no longer see me or prescribe me pain medication.

The next PM doctor I saw immediately labeled me as drug seeking, said there was nothing abnormal in my MRI (which is crap, the deterioration of discs is clearly visible even to someone who knows nothing of what the spine should look like) and told me that he wouldn't prescribe me any pain medications, EVER, but that we could try epidural shots. I told him about the damaged nerves from the last epidural I had received, and he stated that if I didn't even want to try them there was nothing he would do for me. His office is still after me for the $20 copay I didn't pay in the office, and will NEVER pay.

I haven't been back to a PM doctor since. Up until now my orthopedic surgeon has been prescribing me my pain medications, but since my insurance has run out I'm not getting any treatment at all.

But I'm glad that you guys have found programs that work. It makes me hopeful that the entire medical system isn't full of doctors who graduated at the bottom of their class.

Q: What do you call a medical student who graduated at the bottom of their class?

A: Doctor.

-Stefany

This is a really good question and I'm looking forward to seeing more answers.

I hate to say it, but I've never personally talked to anyone with fibromyalgia who says they were helped by a Pain Clinic. When my doctor was on maternity leave and her husband was filling in for her (he's a doctor, too, of course), he didn't want to prescribe the amount of tramadol that she had been giving me and he tried to get me to go to a pain clinic. Because of the horror stories I had heard, I refused to go. Fortunately I was able to talk him into continuing to give me the same dosage I had been getting until his wife came back. (I'd been taking that dosage for years and she and I had already discussed the options and she fully supported what I was doing.)

I took over and developed my own pain management program about eight years ago. The combination of tramadol, acupuncture and myofascial release therapy has worked well for me. I've been fortunate to have found a treatment combination that helps me. I really feel deeply for each of you who has a more intense pain level and/or hasn't found a program that helps yet. And I appreciate your willingness to share what works and what doesn't work for you.

I am in PM, and have been since Nov. of '06. I have to say that I've had good experiences so far. My doctor has been very understanding and while giving me the meds I need to function, he is very interested in finding me other treatments to help other issues I've developed. This has led to a hormone therapist that works as his office. Right now I don't know what I would do without them to help me. I see them every month, and am able to call at anytime when I have had questions or needed meds called in.

Any new thoughts on pain management? Anyone new to it?

HI-

I've been in a PM management program here in Chicago at the Rehab Institute of Chicago. The program was a month long for 8 hours a day, 5 days a week. It was very intense, full of physical therapy, psychology, relaxation, etc. Great program, but unfortunatley, I did not have any pain relief after it.

I had been really working hard on my physical therapy exercises they gave me at home, and started feeling worse. I saught out another Pain doctor here in the suburbs, and she recommended I see an orthopedic chiropractor. He is a great guy and really wants me to get better, but has been unsuccessful so far.

I had a cervical fusion/disectomy, and since then I have gotten a thoracic herniation and two lumbar herniations. Most of my doctors say that the surgery in my neck was a big part of why my back hurts SO bad these days. Every second of everyday is filled with anxiety, pain, and very little sleep.

It's such a viscious cycle, and I feel that I've tried so many things (pt, accupuncture, massage, medication, chiropractor, injections), that now, I don't know where to turn, because nothing has given me any relief.

Are there other methods out there that I have not explored yet? I'd love to get some new ideas and try anything!

The meds I am on are very limited, due to the fact that we are trying to get pregnant, yes, another complication, but I'm 34 and my fertility doctor says it's time to get a move on, so I feel like I need to try and get pregnant while I'm trying to get relief for my pain. I wish I could just know how long it will take to get relief (although in the PM program, they say chronic pain lasts a lifetime), because if I knew how long, I could dedicate myself to that, and then try to have a baby...but I don't think this is feasible this way.

So sorry to babble on and on. I feel everyone's frustrations and concerns and can totally relate. I'm just hoping that someone might have heard of a new treatment for herniated disks and chrnoic neck/back pain.

Thanks so much for your help.
Kari

quote:

It's such a viscious cycle, and I feel that I've tried so many things (pt, accupuncture, massage, medication, chiropractor, injections), that now, I don't know where to turn, because nothing has given me any relief.

Are there other methods out there that I have not explored yet? I'd love to get some new ideas and try anything!

Hi Kari,
I'm sorry to hear that the pain management program didn't help. Nicole, who originally posted this thread, has chronic pain and recently had a baby. I'm sure she will come and answer your questions soon, but she is on vacation right now, so hold tight.
I'm not sure about these next suggestions because you might have tried them, but hey, always worth asking.
Have you tried an anesthesiologist, or *another* pain group (have to find the right pain doc for you, ya know)? How about a spine specialist?

I understand exactly what you say when you say that it is a vicious cycle. I wish I had an answer for you and could tell you exactly how long it would take... I think that's a question we would all like to know.
Sincerely,
Stacy

Well, without getting into my life story, neurologists have basically given up on me. My psychiatrist, who's the only doctor who's dared pronounce the words "chronic pain" to my face, unfortunately, also works in the addictions unit. So, pain clinic is out of the question because he doesn't want them to give me something that I'll get addicted to, and besides, "they don't really treat migraines" according to my neurologist. I always thought pain was pain, but anyways... let's not go there! I have a close friend who works at the pain clinic and she has offered to try to get me in, but her contract ends at the end of the summer, so the offer is limited. Only thing is, I don't want to be labelled as a drug seeker or be seen to go behind my doctors' backs, things are already hard enough - BPD is still very badly seen by doctors and we are all put in the same boat, which makes it really really hard for those of us who are in situations like this and have never had substance abuse problems but are still treated as such.

I completely understand. I've been flagged at one of my nearby emergency rooms as a "drug seeker". Even though the doctors have extensive files on my back and neck injuries as well as my Lupus showing that I do have the need for pain medication, doctors still don't like to give out the heavy duty stuff ESPECIALLY if you ask for it. I know how you feel

Hmmm..
Okay, I've been seeing the same pain-doc and his staff *though they've changed a lot more than me) for about a dozen years. At our FIRST meeting, he asked ME what usually worked to help alleviate my pain. I told him and he wrote me my first presctiptions and I've been refilling these SAME prescriptions, in the same dosage(s) for all of these years.
Well, my TMJoints have continued to deteriorate; my spine has also been deteriorating. This all has caused my pain syndrome to, sometimes, go through the roof!!! I've recently accumulated more diagnoses but, still, I have NOT yet asked to have my meds changed or upped. Maybe I should. I think, if I were to do so, he would have no real problem with it. Probably, this has more to do with me than his decision. And, certainly, before I go up to NY next month, for my first in a 2-part surgery, I WILL be letting him know that WE need to do something different!
IF anyone is really expecting for their pain to be erased or eraditcated with pain meds, you may be in for a rude awakening. Personally, I don't believe that there are enough drugs in the world to make mine disappear!.. well, not without taking ME out, too! This, sadly, is not an option.
--think I may, too, schedule a visit with one of the shrinks my Pain-Doc keeps in his office. Maybe he can help me to put into words my need for more extensive pain-therapy. \
Overall, though, I'm pretty happy with my doc and his willingness to try different things for me; not just medication!

hello i'am becky, and new to this group! i have been dealing with pain in my feet then it jumped to my wrist. and i have had everywhere in my body it travels in me. been to alot of dr's. and OHSU is testing me now. my pain gets bad some days. where i would like to end my life. but i know its just the depression kicking in. i have had pain for about 11yrs. thankyou for listing to me love becky

Phew! Okay, since writing my last post, I did go off to the pain doc and requested that my daily regimen of 8 pain pills per day be upped to ten per day. Honestly, I did NOT expect to see much of a change or a positive difference. Was I ever wrong! I have not had even one of those awful days like I was dealing with usually a part of just about every day..; I have been able to get a handle on this stuff and I really did need to do this as I am going into surgery next week... Of course, there will, most likely, be another switch or change that needs to be made following this. Still it was NICE and kinda wonderful to have the chance to catch my breath!

Hi Anne,
How was pain management during your surgeries?
I found that during my 2 part surgeries I had to stay on the surgeons, residents, and my pain management doc to make sure that everyone was on the same page.
I learned a lot during the first stage when I let the hospital/university's pain team treat me. Even though I had a consultation before the surgery and my records were sent ahead of time (and my treating physician at home offered to speak with the doctor there), it just didn't work out very well after the surgery. I was treated extremely well in the hospital, and my pain was controlled probably better than it had been for any surgery I have had.. but when they let me go, I was very disappointed with the after care, follow up, and lack of understanding regarding post-op medications.
I felt much safer during the 2nd part of my surgeries when my pain doc from home had control of my medications for recovery. Incidentally, my pain was not managed as well during my hospital stay that time.. but I thought it was more important for my pain to be managed better for the weeks following the surgery.
In any case, pain management has been the only treatment I have been receiving since having my joints replaced about a year ago. I'm really glad to have it, because without it I think I would be going crazy! and sometimes, I still do go crazy.

It has been hard moving across the country and finding new physicians, but I feel like I have *finally* found a good doc and found a new medication combination that has been working (so far) pretty well! I will write more about this soon.. it's very interesting, IMO.
It's always hard to jump into the unknown, and the stress of that makes things harder (and of course more painful). Once things get out of control, it's really hard to get them back, you know?

Anyway, I just wanted to give everyone an update on my pain management situation. More on this soon, I promise!

I hope you are all doing well.
Sincerely,
stacy

Hey,Stacy.
HA! Pain management? WHAT pain management? I thought Lisa would have told you, since I called her, hysterical as they were ONLY giving me morphine at the hospital (morphine has NEVER worked for me.,,; not by itself, alone), and she drove up to NY to pick me up. It would have been fine with me if she had told you. After all, I was at her house for about ten days.
So, no, I haven't yet had much in the way of pain management. And, I still am without joints. The models are made and the joints were started last Monday.., but, since I've had so many surgeries and I went through the rib graft so many years ago, I have to have a lot more than joints made. It has not been fun, for sure.
In fact, I probably will call the pain doc tomorrow and ask him to write me another triplicate Rx since the usual codeine isn't handling any of it. I mean, it does still help with the back and other things; does not touch the jaw though.
I really did not think I would be withour joints for so long but, as things went as they did, I am waiting and hoping it will be somewhat better. Honestly, I was thinking that they're putting it off so that I'll appreciate the amount of pain I have after the joints are seated. It's got to be less than this. And, oh yeah, I do know about things getting out of control. I was absolutely out of control and there was no pain med that was going to help immediately following surgery. I think, now, as I'm a bit calmer about all of this, it should be easaier to get a handle on.
I did worry about your going to another part of the country with all of that happening, medically. Presonally, there is no way I would move away from my doctors. They've known me for well-over a dozen years and they usually give me whatever I ask for; could be because I don't usually ask for much, though. I have a HUGE control problem and letting go is harder than anything for me. Theonly person I think is worse than me with it is Lisa.. ha!
So, Stacy, no.. I am not there, I don't believe that my pain level will be better than it was prior to this surgery after the new joints are seated. The doctors only decided to do the surgery since I was not really holding out hope for it. I only want to be able to eat more and better.
I wish I had beter news for you or for me. Sadly, it takes a lot of getting used to.. but, there is a reason that your surgeon should be following you extensively for two years.. and five to ten years after that!
let me know if there's anything more specific you want to talk about. You can always pm me or whatever you're comfortable with, ok?
Anne