What are my options when pain management won't work with me during flare ups?

[Necromateur]

I'm somewhat long-winded, but I'll try to break this down as simply as possible.

I have been seeing the same pain management doctor for two years. I have been taking the same dosage of hydrocodone for those two years and I'm more than content with the level of pain medication they give me.

I get steroid shots or nerve-burns every other month. Those shots have never helped for more than 1 day. However, when I get a lower-back flare up and my sciatica starts killing my leg, the injection does get rid of that. Other than that, the injections do nothing and I have said this to them every time I get a shot. It will work for 1 day and then throw me into excruciating pain for the next few days, then back to normal.

But, I feel as if I have to take them. I do believe part of my patient agreement was that I would do any treatment they suggest, which means I'm stuck forking over 1200-2400 dollars every other month for a shot that doesn't work (granted, my out of pocket is only 120 and 240, respectively)

I started having another flare up in the upper portion of my back that radiates pain up my neck and across both arms and under my armpit. My ribs are also hurting horribly. They switched my injection site from the pelvis/hip to my upper back.

Again -- 1 day of relief after being sick from the shot for that first day (headache, high blood sugar, blurry vision, etc).

That was on the 30th of Jan and now it's 2-5. I called yesterday because I can't move. My back hurts so bad and I can't move my head at all without it shooting horrifying pain across almost all parts of my back.

I know that I need to be given a stronger pain medication temporarily until the flare up subsides. I can't really see anything else they can do for me. But currently, the hydrocodone does absolutely nothing to stop my upper back pain (although it still is helping for my lower pain which is chronic).

I called and was told he would call back within 48 hours. It has been 48 hours and I'm still in excruciating pain. I am unable to go to an emergency room or urgent care because of the contract I signed stating I can only see my pain doctor for pain related treatment.

So what do I do? I'm honestly on the verge of telling this doctor, and his clinic, to go do something to himself that I can't say on here. I feel betrayed and I feel like they're monopolizing on my pain. I'm the one that has to suffer so that they don't lose business or so that the government doesn't feel like I'm doctor shopping. I don't and won't do that -- I just want this pain to end. I cannot stand it. I've been crying for the last hour or two because the stabbing sensation won't stop but I'm stuck here. I can do nothing about it.

So what are my options here? I know I can't just "up and quit." I'm certain if I do, the withdrawals will kick in. I haven't experienced them but I hear they are horrible. . . add that to my current level of pain and I might just want to harm myself to make it stop.

Am I wrong for expecting my pain doctor to treat me in between my "prescription meetings" if I need him? Am I allowed to obtain higher strength medication from him even though I have another prescription for him currently?

I don't know what to do. I just need this to all be over. I honestly don't want to do another injection because they're sucking the money right out of me and they do nothing. I feel as if I'm being taken advantage of because I'm the "golden ticket" for a pain management clinic -- I'm forced to suck it up and say nothing or I deal with not getting the only thing that has ever helped me for pain -- hydrocodone.

What do you suggest?

[RSD410years]

In the event injections are not providing a minimum of 50% relief, the physican should not continue to do them.  It is unethical.  I recently went to my pain clinic of 15+ years and while I do wear a fentyl patch, my break thru meds did not show up on my tox. screen.  I asked if I took them 15 min prior to coming would they show and he said no. I also reminded him, I do not take them daily as they are for break thru pain.  Also, when your pain is out of control, you go to ER immediately. Just let them know up front you are part of a pain clinic and they may want to contact your physician.  Thats how I handled a similar situation.  My doc later told me that was completely unnecessary.  So those contracts are very confusing, but DON'T EVER THINK YOU CAN NOT GO TO ER.  That would make the pain physician 100% liable, and I am more than positive that is not what they want!  Good Luck!  

[Necromateur]

Words can't describe how much I've appreciated your input here.

While I don't necessarily feel like I've been extorted to a level that deserves a lawsuit against them, I most certainly will go ahead with filing, and following through with a complaint against my current pain doctor. That was never a question.

And I have actually already obtained all of my medical records from them. I did that yesterday, not by way of a 'letter', but simply by request. They printed off copies of them all and it was covered and signed by their office manager. I don't know if that will function as a legal document, but it is most certainly ammunition to prevent them smearing my name.

I understand the need to play my next moves in just the right way. If I burn the bridge now, they can add whatever they want to my medical record, thus barring me from any other pain specialists. Therefore, any actions I take will be after I have found another pain management clinic.

An update: I had previously scheduled an appt. with my PCP for this morning at 8:30. My thought was that if he was willing to handle my ongoing pain care, I would simply cut ties with the pain specialists and deal solely through my PCP, which is something I'd rather do anyway. If he wasn't willing to do that, I was going to get some anti-anxiety medicine enough for 5 days and just stick out the W/D.

But I talked to him, at length, this morning. He seemed VERY sympathetic to the situation. I could tell from the look on his face that he has dealt with this problem time and time again: where laws make practicing medicine more difficult and tie the hands of doctors that actually want to help people instead of just cashing in on the insurance payouts.

I told him I was ready to be done with all of it and just let whatever happen, happen. He told me not to do that. He said he'll have his office people start looking for another pain management clinic for me and that I need to do my follow ups with my current pain management clinic as I normally would so that nothing seems awry.

He then went on to say that after I have found, and entered, another pain management, then I will cut ties with the previous one and everything will be dealt with in a way that will protect my 'trust' amongst pain doctors and other PCPs.

This seems like the best course of action. I will be cancelling my appointment for my followup injection that is set to happen on the 15th. If they wish for me to come in to do a visit with the doctor, then I suppose I'll have no choice, as per my contract. But I will wait until after I have filled my next script on the 13th to do that. I wouldn't want them cancelling that prescription just to spite me (and I'm sure they would).

I was ready to say 'to hell with it,' but hearing my PCP tell me not to stop taking the pain medication (the only thing thusfar that helps in any real way -- all though the occasional ibuprofen coupled with my pain meds does help tremendously). Hearing a doctor that isn't willing to prescribe narcotics (my PCP  is not willing) tell me not to stop taking them basically solidifies my want to continue seeking treatment elsewhere.

After all, I spent many many nights prior to being in pain management crying and whining like a little girl because of the pain. I most certainly don't want to deal with that anymore.

But let me ask you this. . . am I wrong to have asked them, once in the two years I've been seeing them, to give me a small amount of stronger pain meds until my flareup subsides. Is that wrong? I don't see how it's wrong. I assumed they trusted me enough to know I'm not selling these things or abusing them, but apparently not? I don't know. I just feel like I'm somehow wrong here for expecting a certain thing from them when they should be the ones making that call. . . but at the same time, I know my body and how it has reacted to all these other things they've done and so far, opiates have been the only real solution to managing my pain.

I just hate feeling like I'm subhuman when I'm in that much pain. I realize they get a lot of addicts running in and out of there, but to know I'm not one of them, and to know that I actually really do need this stuff and to have them look at me through squinted eyes is just very upsetting for me. I really just hate this whole situation.

Sorry for the long, drawn out replies. . . like I said in my OP -- I'm long-winded. :(

[remar]

Thank goodness we have you here as our Community Leader and our biggest supporter!

[philnoir]

You're right -- we don't need to know your diagnosis, but it can help understand a physician's particular treatment plan. Frankly, I'm baffled by the actions of this doctor.

AS is a serious auto-immune disease similar to rheumatoid arthritis, but much more debilitating in its symptomology.  It causes degeneration and deformation of bone and connective tissue, and pain throughout the body. It is a difficult condition to treat, but I'm amazed at what I hear about the treatment you are receiving.

Don't worry about fusion surgery. In many cases of severe AS, vertebra fuse themselves, actually reducing the pain of arthritic facet joints and ruptured discs.

One particular detail you share is shocking. If you have received a bilateral RF ablation without your written informed consent, you are a victim of  medical malpractice.

While the amount of information a doctor needs to supply to a patient before a procedure is debatable, he must inform you of the need for a procedure, the risks and benefits, and what he hopes to achieve with the procedure. This also counts for each injection.

He cannot have you sign a consent for diagnostic medial branch nerve injection and then perform a neurolysis, as you claim. Consent for one does not imply consent for the other. You've been mistreated and you need a malpractice lawyer to examine your situation.

Your doc may also in trouble with his state medical board, and if he's board certified by a national organization like the American Board of Pain Medicine (he'd have DABPM after his MD), he is required to follow specific standards of care.

Was the ablation performed in his office or in a procedure room where proper aseptic technique is followed? Did you have anesthesia, and if so, were your vitals monitored by a licensed anesthesiologist during the procedure? Was the procedure performed under fluorscopic guidance? ABPM strongly recommends all of these standards are followed during a neurolysis procedure.

Request, in writing, your full medical records, or have your lawyer do so -- this usually makes quite an impression. You'll have to pay for them, you'll need them after the way you've been treated.

Personally, I'd see the best malpractice attorney available, and that usually means an attorney that also has a medical education. They're expensive, but if you tell your story coherently, without emotion, they will work on a contingency.  Refusing you medical pain management unless you undergo repeated injection procedures is unethical professional behavior. Essentially, it's extortion. Continuing these injections ad infinitum without improvement or worse, with exacerbation of pain, is definitely in violation of the ABPM standards, and has other ethical implications.

As long as you are under a pain contract with this doc, fill the Rx. It's your right.  When you're ready to terminate to get your medicine from another doc, send written notice cancelling your contract via registered mail with return receipt. Keep a copy of the receipt and the letter -- then you're covered.

If there is any misrepresentation of your case, or outright lies in your medical record, your doctor is committing a felony.

As for this forum, we get all kinds, and in the pain forum especially, we see some bias against the use of opioids. I encourage you to ignore those who are abusive and inappropriate with an intent to irritate and insult in their messages.

Your first priority is to get care, ASAP. You may experience withdrawal symptoms depending on the amount of time used, and dosage of your medication. Because hydrocodone is a mild opioid analgesic, your symptoms will be mild (but still unpleasant.)  Ask your PCP to help with medical management of the symptoms.

As for your AS, you'll find support and information on sites like spondylitis.org. Knowledge is power. Learn all you can about your disease and how it should be treated.

You've been the victim of abuse, and with any traumatic event, you will experience a range of emotions that may be unpleasant. Please find an individual or support group to assist in exploring your feelings and help you come to terms with your situation. Keep moving forward.

Getting away from this monster the first step toward finding appropriate treatment. There are plenty of compassionate, competent physicians out there ready to help. Finding them is a challenge that requires courage, confidence, and perseverance.

Best wishes on your journey.

I sincerely hope that you will follow through in having this doctor investigated by your state regulatory board of medicine before he tortures any more people in pain. A malpractice lawyer can help your develop your case in concise chronological order.

[Necromateur]

I will disregard this post, because I have run across numerous people that are just like you throughout the course of my life. It's always the same "My life is like this, so yours must be too."

As for using prescription Advil as a hypothetical -- do you even think about what it is you're about to say before you say it?

So let me give you a little information about my condition, its progression, and what I've done to keep it from hurting.

I was about 25 when it started. I couldn't move one morning. I hurt all over. I hurt so bad I could hardly breathe. My wife and kids were horrified because here's Daddy all splayed out on the recliner grunting and groaning because he's in so much pain.

I was unable to go to work for three days. I lost my job. Then the pain got so bad for weeks at a time that I was unable to put on my own pants. I couldn't put on my own shoes. I couldn't wipe my own rear-end. My wife had to do all of these things for me.

I went to the hospital on several occassions -- at least 10 times within my first year. I was treated like a druggy, even though I had never taken narcotic pain medication in my life up to that point, not even when I had my tooth pulled -- that hospital gave me Motrin for my throbbing tooth pain. I didn't care because the Motrin worked.

So three years go by. I have had to quit two different jobs because of these "flare ups" that I have. Thankfully, my wife was finishing college at the time and started making money -- we ended up losing our house in the process, all because Daddy was unable to move or function.

Keep in mind -- some days I could move, but every day was very painful. I was taking 3 220mg aleve at a time (as per doctor's orders), and it helped me sleep for sure, but only for about 5 hours. I started out taking Ibuprofen, then Motrin, then Motrin and Aleve, and then I started taking more Aleve when it stopped working, and then even more Aleve when 2 pills didn't work. This went on for about 4 1/2 years.

Five years into the Native Hospital (no, I didn't have insurance back then) treating me like a non-using drug-addict, I finally had a breakthrough with one of the actual doctors instead of the PAs that they make you see all the time.

She suggested I take a genetic test in order to appease a thought of hers. It comes back positive for HLA-B27, which is what she said she was looking for. She immediately gave me a prescription for pain medicine and told me that I will need to see a Rheumatologist to confirm any signs of Ankylosing Spondylitis, because testing positive for the gene isn't 100% that I have AS.

And lo' and behold, the hydrocodone 5mg works!! I had never felt better in the last 5 years. I could actually do stuff. I could play with my children without grunting from some sharp stabbing pain in my rib or my lower back. I could even move my head around. So for me, that was the solution -- pain medication.

At that moment, my wife gets health insurance from her job (our first time being insured). I go see the Rheumatologist, who sends me for all kinds of scans.

Sure enough -- I have severe inflammation in my sacral region where the T's meet the S's. I have herniated disks all the way up my back, and my spine has started fusing itself together (Bamboo Spine). This prevents me from bending over -- my range of motion has been decreased tremendously.

The Rheumatologist then confirms the previous doctor's suspicions and he says the only thing that would work were these biologics that completely DESTROY my immune system and may not work!! I knew about them before walking into the Rheumatologist because I looked into AS and its treatment options.

I told him no. The shots came to around 1100 out of pocket every 2 months. Not something I can afford. So then I had my primary send me over to a pain management clinic.

And now here I am.

So when you say "You're doing all that stuff just for the pills," I'll say abso-******-lutely I am. I went through absolute HELL in my life before being prescribed regular doses of pain medication. I've destroyed my insides by taking Aleve in such high does, and when that stopped working, what am I supposed to do? Run to you and say "Oh, heavenly father of know-it-all-pain, what am I to do?"

No. I'm going to jump through their little hoops, do their little extra procedures, and pad their pockets a little bit because the alternative is DEVASTATING to my life. These pain pills give me range of motion. They give me the ability to wake up in the morning knowing I'm not going to sit there for two hours tearing up, grunting, and waking my wife up because of the stabbing pain that I get when I first wake up.

Am I addicted? I don't know, but if these doctors keep wanting to extort me for all they can, I'll find out soon enough. I have already told myself that if my primary won't help me, then I'm done with it all. I will simply let my spine fuse together, so that all the politicians in the world will feel like they're doing something GREAT for the nation because they made it nearly impossible to get medication that actually kills pain.

I'm sure you'll rest easy knowing that all your insurance money will be spent on treating me for a total spinal fusion by the time I'm 38. I'm sure you'll feel wonderful about yourself knowing that I won't be taking those pain meds anymore, because after all -- you'd know better than me, right?

[Necromateur]

1) I have had the same insurance for the 2 years I've been seeing them and I have a 0 balance, with only $300 pending from insurance claim they've made to my insurance company.

2)What is your diagnosis?  While I feel this is irrelevant, I'll answer anyway since I'm looking for some help. My mother and I both have Ankylosing Spondylitis. I also have osteoarthrosis and signs of bamboo spine. My pain is all over my entire body, but flares up in different locations and different severities. Furthermore, in the 2 years I've been seeing this pain doctor, I have NEVER called mid-month for any kind of emergent pain need. I did ask for extra pain medicine after my first 3 months because of having my tooth pulled, but other than that I've just 'done what they've asked'.

3)We call these docs: "shot jocks.That's exactly what he is. They charge me 1200-2400 for a 4 1/2 minute procedure (if that). Given that over 2 years, only once has it helped and that was only with sciatic nerve issues, I'm certain he only does it to make a butt-load of money for very little work.

4)I suggest that you re-read your pain contract.I have and I'm required to seek any treatment options they put in front of me. If I do not, I will fail to meet their requirements as a patient and I will be removed from their program. This is the ONLY reason why I've continued dealing with these horribly painful injections.

5)Nerve ablation or burning - I am well aware. They were supposed to do 'testing' on the nerves by using lidocaine (I believe) to deaden the nerve -- if that worked, they were going to do the same to the other side, and if that worked, they would continue with the process -- afaik they never did any test runs with it. He just started burning away. They said they were only doing one side at a time, but I know I felt needles go into both sides of my lower back and my god did it hurt. That hurt worse than the pain I'm currently experiencing. And it's expensive.

To add, when that DID NOT work, they sent me to do the "other side." Yeah. I felt I had no choice because, as per their ridiculous contract, I have to do the procedures they call for.

6)You have the right to refuse any treatment -- and they have a right to refuse me as a patient -- it's called capitalism.

7)Explain your dilemma -- believe me, I have. Every time I sit in front of the PA that sees me (the doc doesn't see me anymore), I explain this to him. So then he says "Well then let's give this "other" stuff a try," and then he'll ramble on about why the other might not work and how it might take 4-5 injections to see any benefit and that I'll just need to stick it out.

As for the pain journal? I did that once when I was seeking long-term pain management years ago. I handed the paper to the doctor that was seeing me only to have him put the paper down, explain to me how people will "go on the internet" and make up symptoms. If this is how doctors view pain journals, then I'm simply not going to bother with writing one. That doctor didn't even look at my paper, so I don't see the point here.

8)Have you tried icing the area the first two days after treatment? -- lol. I've had pain in this location before -- not this severe, mind you, but it comes on about twice a year. Ice, heat, massage, steroids -- none of that crap works.

9)Some of your pain may be due to muscle spasm - from where I'm sitting, the muscle spasms occur when the pain radiates across my arm. It's almost like my whole upper body tenses up when that pain radiates across my shoulders and arms, so it's much less like a 'spasm' as it is a reaction to the stabbing sensation radiating from the middle of my back.

I do feel the doc wet tapped my back with that injection, which is why I experienced severe and unending headaches for a day and a half afterward. I'm sure clotting the area around the injection site might've made me feel better, but I don't know that they'll do that there.

10)In the mean time, look for other pain management options in your area.  - already done. I called and I have an appt. tomorrow at 8:30 am.

Now, I'll add to what I previously wrote as I was able to get in yesterday to my pain management.

I called back to the 'appointment line' and asked to be pushed into today's schedule. She said she didn't have an opening until Monday (and God help me for having to wait that long). I explained to her that I'm stuck here, because I cannot go and have someone else treat me for pain. Her response was that I can go to the ER and take any medicine they GIVE me, I just can't fill a prescription from a doc there. . . .

I realize that's the law -- to prevent doctor shopping -- so I tell her that's why they need to have contingencies in place for when their patients are struggling to cope with the pain they're supposed to be managing.

She got very rude with me, but sent me to the office manager. I've known the office manager for 2 years now and she got me an appt. within an hour.

I sat at that office for 2 1/2 hours. They made me take a **** test (surprise), and then I sat in the room for another 30 minutes -- they were closing shop in 10 minutes when the PA finally walked through the door.

I explained what was going on. . . he scrolled through the program on his computer and says "I don't know what's going on. We need to get an mri -- I'll give you something for the inflammation..."

They then prescribed me a steroid pack. Now, prior to my attending pain management, the doctors I would see would hand me a steroid pack every time I walked through the door. They might as well have someone just standing at the door, handing out steroid packs, and sending them back in the other direction. Needless to say, they didn't work.

Another thing I find AMAZING is that the injections were steroids -- that didn't work -- so their solution is more steroids? Now, I don't know what they should do for me at that point, but a steroid pack most certainly is NOT the right way to go.

As I'm leaving, I see my actual doctor sitting behind the Nurse's desk -- just sitting there talking about what they're going to do after work. I get his attention and ask for a moment of his time, to which he says "Can't. I'm super busy right now." -- he didn't even look at me.

So yeah, that was it for me. I'll be speaking with my primary in the morning. I'd much prefer my primary doctor handle my pain management (they have multiple urgent cares around my area), because if I am in dire need of something because of unremitting pain, I can just walk right through the door.

If he doesn't want to handle my pain care, I'll ask him to point me in the direction of another pain clinic.

But I'm not filling that next prescription that I have (I have a post-dated script from my last appt..not the one today but the one a week prior). I'll not leave any room for any of them to call me a doctor shopper or a drug addict.

And as I told the lady at the counter when I left -- I'd rather drop every prescription they've given me and deal with the consequences than to be treated in the way I was treated that day.

I'm simply mortified. I also plan to send a letter to my local representatives complaining of these horrific practices by pain management. After that's done, I'm pretty sure I'll be filing a complain with the medical board given that they were falsifying my chart, saying the shots were doing great for me, when they were actually making everything worse.

[remar]

I just read your post and it's heart breaking. I am so glad Philnoir responded to your questions. He is so very knowledgeable.
I couldn't agree more. It looks like it's time to find a different pain specialist. Why in the world should be forced to have these injections when they do nothing buy cause you so much pain? In my opinion, it's all about the money. You apparently do have insurance so they can do what they want and charge what they want to make more money. This is not how things should work. Their job is to keep your pain levels at a comfortable level and they are not doing that. They're actually making things worse for you. I just hate that you're sitting there crying because you hurt so bad. No good Dr would ever let one of their patients go through this.
Do re read your contract and also talk to your pain Dr. You can tell them you no longer want or need the injections and you also need extra medication for break through pain.This is not uncommon for some patients to either have extra medication or another medication altogether for break through pain. If they disagree with this then it really is time to find a new Dr.
We're here to listen and help anyway we can. Please keep us up to date on how you're doing.

[philnoir]

What is your diagnosis?

Do you not have insurance?

More than you need extra pain medicine, you need to stop injections unless they are helpful.  I'm glad the hydrocodone is working.

Some interventional docs will inject a patient 20, 30, 40 or more times without any improvement in pain. We call these docs: "shot jocks."

I suggest that you re-read your pain contract. You may not be required to get injections every other month, especially if there is no medical benefit.

Nerve ablation or burning, as you call it, is needed annually or even less frequently depending on the speed of nerve growth. We're all different, but I require ablation only every 18-24 months.

You have the right to refuse any treatment. It's called informed consent.

Ask your doctor the benefit of monthly injections. Explain your dilemma -- they are causing more pain than they are treating. Keep a pain diary of pain levels both before and after injection treatment to document the inefficacy of these injections.

Have you tried icing the area the first two days after treatment? Ice is a great pain reliever.

Some of your pain may be due to muscle spasm caused by the injection -- after icing, hot baths may help.

In the mean time, look for other pain management options in your area. Ask your PCP for a referral. Explain to him or her the problems you are experiencing. Is there a university medical school with a pain management clinic near by -- why not make an appointment there and get their opinion?