I am so frustrated, I'm ready to spit. Or cry. Or both.
I decided to explore options for pain control after I used Tylenol 3 and Vicoden a couple of times for some dental work I had done last year. At the time, I was amazed at how much of my Lyme pain was relieved by those drugs. I hadn't even realized that I had been in that much pain.
I've asked both my PCP and my LLMD if they would prescribe pain meds that I could use on my worst days. Neither of them are comfortable doing long-term pain med management. So I decided to find a pain management clinic to help. In the meantime, my PCP has given me a scrip for Tylenol with Codeine (Tylenol 3), which I've been using rarely, since I know she doesn't like to refill pain killers.
After a lot of effort, I finally, finally got an appointment with a pain clinic, which I went to just this morning. My pain doc seemed nice enough, and even seemed open to or at least interested in hearing about my Lyme diagnosis (formerly diagnosed as Fibromyalgia).
Unfortunately, this pain doc was utterly unhelpful and terribly confusing to me.
First of all, she REALLY didn't like that I have two different docs prescribing meds: My LLMD prescribes antibiotics and thyroid meds, and my PCP prescribes my blood pressure meds and my current pain med, Tylenol with Codeine.
I told her that I thought having two docs was a normal arrangement for an unusual diagnosis like mine (you know, any disease that requires the use of a specialist), and that I was under the impression that in addition to those two docs, a pain clinic would prescribe my pain meds. I told her that neither my LLMD or my PCP want to prescribe pain meds because it's outside of their expertise, which is why I was there to see her.
She seemed upset with me, insisting the the ideal situation is that only one doc would prescribe ALL meds. I was not disagreeing with her, but told her that my PCP didn't have the expertise to treat the Lyme. I finally pacified her by telling her that my PCP HAS agreed to be my "umbrella doc", reviewing all my treatments and drugs to make sure there are no unexpected interactions.
She then told me that that at her pain clinic, they will work with me to find a drug plan that works for my pain, but then they want to refer me back to my PCP to manage my care.... She sure went the long way round to get that message across, and managed to make me feel like I was doing something wrong in the process.
My second (and real) problem is that she seemed completely perplexed by my pattern of pain, or lack there of. My pain is sometimes in the joints, sometimes in the muscles, sometimes sharp, sometimes aching, sometimes in a specific location, sometimes all over. I can be okay for days or even weeks (average pain level of 4-5), but then be miserable for a day, several days, or even weeks (pain level of 6-9).
I told her that I've been getting along without pain drugs (with the occasional exception of using Tylenol 3 very rarely, on days when things get really bad). I am unable to work, most days unable to anything but take care of my basic needs. Somedays I'm not able to do even that. Getting out of the house at all is a huge deal for me.
I told her very clearly that I was there to see if better pain management might help improve my quality of life. I told her that I was worried that I may have a hard time recognizing when I'm in pain, and that I was hoping to get help and guidance at looking at options for evaluating and managing my pain.
This docs response was to say to me, about twenty times during the appointment, "I'm just not getting a sense of what you need. Your level of pain is still not clear to me." At one point, she actually said, "It would be a lot easier, frankly, if you were in a constant amount of one type of pain."
After an hour of this type of confusing and circular conversation, I THINK she wants me to try using Tylenol 3 steadily for a week to see if I feel significantly better, then come back and seen her a week from today to revaluate. I am already keeping a symptom journal, so I'll just track how I feel, I guess.
At the end of the appointment I finally got her to tell me that my overall options are to stay with the short-term acting drugs (like Tylenol 3, Vidcoden, Percoset, Tramedol), or perhaps think about trying a longer-acting drug (like a patch, and some other drugs I can't remember -- may include oxycontin).
Questions for you Lymies with pain specialist experience:
1. Do you have variable pain symptoms, and have they been helped by pain clinics or specialists? What helped?
2. Is there something I can do to communicate my pain more clearly to this doc?
3. Should I be looking for a doc with experience with alleviating Fibromyalgia (Lyme) type pain (that is widely variable)?
4. Any other hints on how to work with a pain clinic?
THANK YOU for any help you can provide.
I am so unhappy... I really thought that I'd get help from a pain specialist. But I ended up feeling belittled and challenged and confused.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Pain clinic docs are just simply weird. I have never been to one myself, but stood by on numerous occasions and watched then f*** with my my clients when I was managing workers' comp cases.
They seem to think they have the POWER to make a patient feel better and use it against them. They seem to enjoy watching the patient beg and plead, then enjoy withholding treatment.
Pain management isn't that complex. There are some very safe drugs out there. I take Avinza about half the time. This is actually a long-acting morpheine and is only to be taken once a day. It is much safer then taking hydrocodone as it is not near as hard on the liver. For some strange reason, it seems to have even a longer effect with me and I end up taking it every other day.
Pain is so hard to define from person to person. There is no "pain meter" they can use to see if you are lying. Therefore, they become suspicious of everyone.
I have a poor client who has a severe case of anklosing spondilitis, an extremely painful condition. No doctor would help him with his pain, therefore, he was using pot for pain control. He is viewed by the doctors as a dumb redneck who is a potential drug user. One of his doctors sent him to a pain clinic and he tested positive for pot, and they refused to treat him. HELLO ... he was in severe pain from a disease that is known for severe pain and none of his docs would help him. That is why he was using pot to start with. The pain management doctor simply dismissed him from his practice and refused to help. Now this is a tragedy.
A few years ago, there was a big deal made in the news that pain should be treated and people should not have to suffer. Now they have come full circle and are as paranoid as they ever were.
Find another doc. Pain management centers are all a bunch of weirdos.
Posts: 2276 | From NC | Registered: Oct 2000
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lyme pain is very different from other pain. It does confuse many doctors, becaues the patterns don't fit anything they know. And every doctor always wants to fit the patient into a box they are familiar with.
However, it sounds to me like you found a doctor terrified of the Drug Enforcement Agency. The fact that they don't continue the prescriptions there suggests they are scared of being investigated for overprescribing pain meds. It's an unfortunate reality. But they should continue because pain management changes with time and you won't always need the same meds.
And of course it's fine to have multiple doctors prescribing medications. The problem is when multiple doctors are prescribing medications for the same condition without communication. I could understand if she was concerned that you would get pain prescriptions from multiple doctors, because that could lead to abuse.
I found tremendous help through a pain specialist before my Lyme diagnosis. He was always convinced I had fibromyalgia, but he did find the right treatment.
First, a real pain management specialist will look beyond just pain killers. All the meds you listed are pain killers. There are other drugs and therapies that help to control pain in other ways that can be used along with pain killers for best pain management.
I picked my pain specialist because he worked in a clinic that had physical therapists on site and therapist/counselor. To me, this said they look at the whole package.
He spent months with me finding the right pain management. It wasn't easy, but we did. For me, it was a combination of physical therapy, a muscle relaxer, and vicodin.
Now, the one warning, is if a good pain management doctor thinks its fibro, that doctor will want to prescribe antidepressants. They do help reduce pain for people with fibro. But they didn't do anything for me but cause side effects. I eventually just said no to that route, and we moved on.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Be VERY careful with pain ducks! They LOVE steroids & throw them at inflamation without knowledge as to how they effect Lymies.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Oh what a mess! I have had so many run-arounds from ducks who were convinced that I was just seeking a thrill by asking for pain meds, when all I wanted was a relief from the daily agony -- I'm sorry you had to go through this!!!!
Pain management docs are supposed to have special dispensation from the DEA, I believe, to prescribe narcotics without the usual third degree as to why they prescribe so many-- I mean, they are PAIN doctors -- hence the need for PAIN meds -- sheesh!
Aniek -- I would like to throw out a dissenting opinion regarding antidepressants and fibromyalgia. Fibro is a "syndrome" -- a cluster of symptoms -- without an identified underlying pathology, meaning that it likely encompasses a number of infectious conditions.
A great number of folks with lyme are first [mis]diagnosed with fibro, and the reverse is true as well -- a good deal of the "fibro" sufferers out there are running around (or rather hobbling around) with undx'ed lyme -- others are probably suffering from mycoplasma, viral infections, parasites, nutritional deficiencies or some combination thereof.
Antidepressants do little to help with any of these conditions in most cases, as they don't address the actual cause of the pain.
They can help with mood symptoms (and this can be a lifesaver, don't get me wrong!), and sometimes they even do help with pain in *some* people (particularly the drugs that work on Norepinephrine as well as Serotonin, such as Effexor and Cymbalta) -- in that they can help correct imbalances in the neurotransmitter systems that can exacerbate existing pain conditions-- but the reality is that most fibro sufferers get just as upset at being handed antidepressants as we do.
There is a huge misconception in the medical field that "fibro" is actually depression being manifested in somatic symptoms -- in my humble opinion, this is generally a bunch of baloney.
Amitriptyline, one of the old-school tricyclic antidepressants, has a pretty good track record for helping certain kinds of pain, too -- it has a muscle-relaxant quality to it for lots of folks, and also helps with restorative sleep, which can go a long way toward helping the body heal itself. It is also a fairly effective migraine preventive in many folks.
Long and short of it is, though -- most people with chronic pain conditions of any kind need pain relief, not *just* antidepressants.
Antidepressants may help some folks, but they can also make things worse, depending on the physical underpinnings of the pain/individual in question.
Peggy, I PMed you with the name of the clinic - it's at a major hospital in St. Paul. I really wish I'd just gone to your clinic - but this one was recommended extremely highly by several people I know.
ConnieMc: What an interesting point of view. Thanks for sharing it. Very interesting.
Aniek and Minimonkey: I have been on the antidepressants when I was diagnosed with fibro. Didn't do a thing for me. Actually, I improved greatly when I went off them.
Foggy: Thanks for the warnings about steroids - I do know enough to "just say no" to those. ;-)
The upshot of this clinic failing me (which I am feeling it has) is that I will have to start over at another clinic. This wouldn't be such a big deal except that my insurance is changing at the end of August, which is why I worked so hard to get in this month. (Actually, I tried very hard to get in during July, but the clinic screwed that up, too.)
Under the temporary insurance policy I have to go on for a couple of months, doctors office visits and prescription drugs are not covered. Even when I get a "real" policy after that, my deductible will be so high that I'll probably have to wait until next year to find a new clinic.
Feeling beat up by the system, man. I wonder if I can just get my PCP to give me enough vicoden or tylenol 3 to get me through the end of the year...
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Minimonkey:
I didn't mean to say that antidepressants are the answer to fibro. But even you said, they can reduce the pain in some people with fibro. I was in no way suggesting fibro was depression.
I also know fibro is just a syndrome, therefore not a diagnosis of cause. But there often is an imbalance in neurotransmitters and the antidepressants can reduce symptoms because of that.
I was providing the comment as a warning, that a doctor who routinely treats fibro patients may want to push antidepressants. I tried them before my Lyme diagnosis because I was willing to try anything to kill the pain. They only made things worse for me.
But I know somebody who has a fibro diagnosis who has incredible pain relief from Effexor.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Thanks for clarifying - I think I misread/misinterpreted your post. I don't dispute that antidepressants can and do help pain in some people -- as you said, neurotransmitter imbalances can exacerbate pain a great deal. (I'm taking Cymbalta at the moment, and I do believe it helps some with the pain.)
That said, they can also make it worse in some folks -- ducks seem to love to prescribe antidepressants to anyone who has a chronic pain condition without much regard or understanding as to how the person may be affected.
The SSNRI drugs (effexor, cymbalta) are very new in the grand pharmaceutical scheme of things, and therefore are not well understood as far as longterm implications.
We are in agreement on all points, I think.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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