Please help. I need advise

Hi there...Welcome to the boards...I'm sorry to hear that you are having so much pain and trouble with Drs..

Have you seen an actual Board Certified Neurosurgeon or BC Orthopedic surgeon to look at your most recent MRI (was this in the last 6 months?).

This way, you can make sure that you don't have any type of issue that can be helped surgically. It sounds like they didn't find anything like severe herniations or threat to your spinal cord or nerves...so at least that is good news...

But this is where it does make it much harder to find chronic pain management without a diagnosis that supports large amounts of pain medications....

What is the dosages and meds you are on now and what are they reducing you to? (If you feel like sharing)

And the hother hard part is that you say you can't take a lot of meds....What meds can't you take? Did you actually have a severe allergic reaction or was it just the side effects...

I don't see any type of nerve pain listed. This is usually something that helps many people with spine issues.

As well as for a pinched nerve....a muscle relaxer is very helpful. Have you actually tried every single one from Flexeril, Robaxin, Skelaxin, Baclofen, Zanaflex or Soma?

That would be quite strange to be allergic to every one of them...

It sounds like unfortunately you are with a PM that just does not believe in the amounts of meds you were previously prescribed. You wrote about seeing another pain clinic...Have you made that appt. yet? Just know that no one else can prescribe opiates while you are still with another Dr. But you can certainly go and get another opinion and see if another Dr. would be a better fit to take over your care...

And the last option is to drive to another town/city if you have exhausted all the PMs in your area...

I would also suggest making an appt. with a Rheumatologist to see if you have anything else going on like Fibro. This could be causing the pain you are having...

Obviously no one here is a medical professional so I am just throwing out some suggestions/thoughts...

Again..welcome to the boards but sorry you have to be here with pain...

Thank you very much for your reply.

The "new" pain specialist has referred me to a neurologist and a neurosurgeon. I have not yet heard from their office concerning when those appointments will be. The last MRI was 3 months ago. My "old" pain doctor had seen the results from that MRI, noted that they saw arthritis, but did not make it the main topic of our visit. Actually, my meds were increased during that same visit. But, no, I have not seen a Neurosurgeon or BC Orthopedic surgeon to look at the most recent MRI YET. The new pain specialist has honestly left me so scared that I'm not certain I trust anyone they might refer me to. I'm not sure if that sounds like a stupid comment... The appointment with the new pain doctor was simply appalling!

There has been no mention of severe herniations or threat to my spinal cord or nerves, other than when I extend my neck. The Rheumatologist the "old" pain doctor referred me to brought this to my attention after he ordered blood work and X-rays. He tested for rheumatoid arthritis, which was negative.

The pain meds began (this last time - its been on and off for years) Summer of 2011. It began with 7.5mg Lortab, up to 4 times per day while I waited for Radiofrequency ablation. It was an entirely different pain doctor who performed that process, as well as the spinal blocks a year previous. They are also no longer in practice. Regardless, I had to wait about 2 months for the first Radiofrequency ablation on one side, and then another 2 months for the other side (the doctor would not do both sides at once - although I requested it.) The pain increased after that procedure and kept increasing. The pain doctor who did the procedures placed me on Percocet, 7.5mg 4x per day. I checked up with him monthly. The pain kept increasing. After talking with my MD, he increased the Percocet to 5x per day. The pain kept increasing. He increased it to 10mg 5x per day. This was now 3 months after Radiofrequency ablation. The pain doctor who performed the procedures finally declared it a failure. He wanted to do another block. At this point, I became leery of him as he SUDDENLY was willing to do both sides at the same time (He previously stated that under no circumstance would he do both sides at the same time.) Pain kept increasing. I met with my MD. He referred me to the pain clinic. The first month, no changes in meds, physical therapy. 2nd month, introduced mscontin, 15mg 2x per day for 2 weeks and then 3x per day, and physical therapy. 3rd month at the pain clinic, changed mscontin to 30mg 2x per day for 2 weeks, then 3x per day for 2 weeks, and physical therapy. 4th month, no change in meds - more physical therapy. 5th month, changed Percocet to oxycodone IR 15mg, 4x per day. I was sent for the latest MRI. 6th month at the pain clinic, reviewed MRI results, pain was much more controlled, but pain doctor increased oxycodone to 5x per day. This was also the appointment they told me that they were leaving the practice. Month 7 and 8, I just picked up prescriptions. They were prewritten.

This is month 9 at the pain clinic. I just met with the new pain doctor. The new pain doctor stated they "didn't even have to do this," but reduced my scripts to mscontin, 30mg 2x per day. oxycodone IR 5mg 4x per day. They reiterated several times that they were going to wean me off completely. I assume if I see them again in a month, it will be the last prescription (if any.)


I don't remember all the names of the anti-inflamatories (mobic is the last one I was prescribed years ago.) I violently vomited on every one I was prescribed. Ultram blurred my vision to the point of not being able to read on a screen 6" in front of me and caused migraines. This made working impossible. I work on a computer. Darvacet made me feel so messed up that I felt beyond drunk, incredibly dizzy, didn't feel safe to drive, and produced absolutely uncontrollable diareaha. The last time I took Flexeril, my heart raced to 120, and I felt like I was in a complete panic. I went to the walk in clinic, as I was scared I might have a heart attack.

After the 2nd Radiofrequency ablation, my right foot went completely numb. My MD placed me on some nerve med, I forget the name. But, I was later told by whichever doctor that it should have helped, but not at such a low dose as I was prescribed. My foot was numb for 2 months. This is another reason I began to not trust the pain doctor who did the injections. He didn't ever want to talk about it while updating. I thought about suing him. But, it eventually went away.

I am currently on Zanaflex. Baclofen caused migraines. Mind you, I very rarely get headaches, let alone migraines. I had been on Robaxin for the past 4 years. That was changed to Skelaxin. It helped for a while. I already mentioned flexeril. I have never been on Soma.

It sounds like unfortunately you are with a PM that just does not believe in the amounts of meds you were previously prescribed. YES, you are very correct. Again, it was jaw drapping to see a doctor coming completely unglued in front of me - ANGRY about the other doctor.

You wrote about seeing another pain clinic...Have you made that appt. yet? Yes, I've made the appointment. It's about a week away.

No, no...

I was on:
Mscontin 30mg 3x day (total of 90 per day)
Oxycodone 15mg 5x day (total of 75 per day)

The new doctor lowered it to:
Mscontin 30mg 2x per day (total of 60 per day)
Oxycodone 5mg 4x per day (5mg x 4 = total of 20 per day)

There is no confusion. The new doctor intends to cut me off completely. He made that incredibly clear.

No mention of Fibro.

Oops...I obviously missed that part in your post about the MSContin...sorry about that...!

It is a bit hard when it's not in the smaller paragraphs as some of us have trouble with our eyesight on the computer...

Yes...you are allowed by law to get your records and the best way to request them is by either delivering this in writing to them or send a written request by certified mail so you can document when you requested them..

They are allowed to take a bit of time to get them to you as well they are allowed to charge you by the page to copy them.

You can certainly check with your medical board but I haven't heard of any state laws that require any Dr. to prescribe opiates just because another Dr. has prescribed them. But you can certainly find out. Just google this question and you should find the info on how to reach them.

I certainly hope you can find someone better!

Post Edited (Snowbunny21) : 9/18/2012 5:25:16 PM (GMT-6)

Thank you, everyone, for your thoughts and insight. In hindsight, I thought the world of PM seemed to be a simple process. Mind you, I am new to PM. I was very happy to find a doctor that truly sat and talked with me. It took forever to see a PM doctor. And, all it took was explaining how I was doing... If it still hurt, my doctor responded. Wow! Finally! No "rushing me out the door..." There was no feeling of being a "criminal" because I am on pain medication. I was also very happy that my doctor questioned when my last MRI was, and suggested I see a rheumatologist. They cared. They wanted to better understand "why" instead of just pushing another proceedure upon me that I cannot afford. They were very genuine. It seemed as though "once you finally got to PM, they cut the red tape and ACTUALLY starting doing things to help you."

Now I see that every doctor has their own opinion. But, I also see how much control they have. That part is scary. That part seems to drive some of them to pure lunacy - the simple aspect of power with such powerful drugs.

There is another part to this that adds urgency and more worry. I don't make a lot of money. I'm still paying for the procedures from 2010. I am a single parent. I raise my girl with no support. That makes it all a bit more difficult in its own ways... Those parts I can deal with. But, the real ringer here is that my position of 14 years is being "absorbed," along with my job. I have 3 1/2 weeks left to somehow figure all this out while still covered under my insurance. I am fearful of all I've read about withdrawal. It's all coincidentally about the same time everything ends: my job, my insurance, my looking for a new job - while possibly facing withdrawal?!? Finding a new doctor, and somehow not being just left behind in this political medical storm. I am scared. My old PM doctor would have heard me, and listened to me saying that. This new one did not even hear "hello".

Hi Need and welcome,

The first thing I would do is report this doctor for his unprofessional behavior toward you. It's one thing to be angry at another doctor it is quite another to treat a patient like he treated you.

The second thing I would do is find a new PM immediately. Just understand that another pm may not prescribe the same amount of meds your prior doctor was. It seems odd how fast he raised your meds. Perhaps he is no longer in the practice for over prescribing?

Hi needadvice, I actually have few words for this, I'm sorry that you're going through such a horrible time. It sounds like your pain is very real, the problem, I think, is finding a doctor who's able to pick through everything with a fine tooth comb, and find a diagnosis. Remember, not every doctor is that great at diagnostics.

I have Aspergers, and lived a good portion of my short life ( 28 years old) without so much as anyone even admitting that I had a severe developmental delay, kind of unthinkable, when you consider that my mom worked directly for the school psychologist since I was 5 years old, and I practically grew up in that office, having to report there after school every day, instead of being sent home alone, her boss, the psychologist, was like a grandfather to me, and I am very fond of him, but never once, until about 5 years ago, did he, or my mother who got all the schooling and credentials to take his place when he retired, ever offer the possibility that I have such a severe impacting problem.

It doesn't really seem fair, as I struggled with many areas of school, and even more so, with just communicating with people, specifically verbally. I didn't find out until I was 22, that 9 different teachers throughout school had referred me for assessment, and nothing was ever done about it. In many ways, I can't help but wonder if that wasn't because of a "proud parent", refusing to accept the idea that her son really does have a problem. To this day, despite that my mom is waaaay beyond qualified to help me, she doesn't even talk about it with me. When I was finally diagnosed, I asked her about it, she said, "well, I'm not surprised, I suspected that for a long time." And that was the end of it, she's never talked about it again.

I know there's no comparison between pain, and a learning disability, but I know what it's like to be begging for help for years, with a very real problem, and be totally ignored. In fact I don't think ignored is the appropriate term, since I remember many times, where I was actually punished for my social inabilities, for saying the wrong thing in a conversation, or not being able to say anything at all; always behind on specific types of school work, especially English class, and pretty much any class where the teacher taught different from my very specific learning style.

I hope you're able to find some answers to this soon, and don't give up hope, there's a doctor somewhere who will be able to find out what's actually wrong, but it may take time. Never give up hope. Take care and God Bless.

Needadvise,

I'm sorry for what you are going through with chronic neck pain... I have suffered with it for over 12 years now and it took me about nine years to finally find a Dr. who took me seriously-

I began going to my regular Dr. in absolute horrific pain from my neck... for year he would tell me to ice it and take Advil... at times I went into the office and cried to him.. I never ever asked for meds because at the time I was naive and had no idea about pain medication.. I just wanted to know what was wrong with my neck.. there would be days where I just laid on my sofa for days on end because I simply could not move my neck without excruciating pain.

Finally I got an MRI and the orthopedic Dr. put up my films and again, told me nothing was wrong with me and that I was "too young"

I was so frustrated because of the constant pain... there just had to be something wrong.. I knew it..

Both those Dr's were men- I say this because there are studies that say male Dr's severely under treat female patients with pain compared to male patients... it was on Dr. Oz where he discussed this topic specifically

I switched to a female Dr. and from there she sent me directly to PM after reading that first MRI report... my PM Dr. was furious no one did anything that entire time and was shocked himself I was left untreated due to the fact that I had severely compressed nerve roots.

The Neurosurgeon I was referred to will not see patients without first seeing an MRI... and he is so booked surgery takes 5 to 6 months in advance... he saw my MRI and preformed surgery exactly two weeks later... unfortunately I needed another surgery this year... so I have 6 fusions in my neck...
C3-C5 & C5-T1 not sure if that is considered 7 fusions with the posterior and anterior being in the same disc C5

My point is you have to keep trying... you have to keep going until you find the Dr. that works best for you... and if you truly feel something is wrong with your body- only you know... and only you know your pain- not the Dr's

I wish you the best and hope you find someone who works for and with you

Snowbuny is right and I agree with her.

You have to understand why a doctor can't just prescribe high doses of pain killers when a MRI can't even show what's wrong. Like SB said, there has to be a diagnoses so it's good you are going to see those specialist because that is their job.

I know it sucks to be in pain and to not have a diagnosis on the MRI or by the doctor. Makes it so much harder to get treatment, but I understand where the PM doctor is coming from.

Good luck with everything and please keep us updated. That's what we are here for to offer advice and support.

Sorry to hear about the things that you have now found in your medical record...

Believe me...I totally empathize and relate as I mentioned previously....I had a terrible PM and Neuro and I was dismissed from their practice because they lied about me picking up my prescription and then asking for more...

I was in NC visiting my dad and called them to ask if my then hubby could pick up my prescription for me and the nurse tells me that I already picked it up that morning! I said this was impossible as I've been here for 4 days and not leaving until tomorrow....They of course accused me of lying and trying to get more medication. The downside was their office didn't have patients sign for their prescriptions to prevent any of this...My own theory is that this particular nurse was stealing presriptions..

Anyway...I was left to go cold turkey...thankfully I was only on a low dose of Percocet but I was in excruciating pain.

And I was wrote in my other post...I had to see quite a few different PMs until I found the one I have today. They thankfully didn't believe anything the other Dr. wrote in my records as I told them the whole story.

So...even though I know it's upsetting to you now....you can only move forward with your appts. with specialists and work with this Dr. to go down in meds slowly so then a new PM can start from scratch with other medications, other modalities and develop the best comprehensive program for you.

You know the truth...and I think a good Dr. will be able to see this.

Certified letter as in notarized?

After reading more of my medical records, I see "chronic pain syndrome." Is anyone familiar with / diagnosed with that? What exactly does that mean? And how is it treated?