posted
I saw my pain doctor Tuesday. He discharged me as a patient because repeated urine tests have shown that I'm not absorbing the pain medication he's been giving me. He told me that if pain medication isn't making a difference, the most likely cause of my pain is depression and anxiety, and very enthusiastically gave me the title of a self-help book available on amazon.com that he says has a proven track record of helping people notch down those conditions.
This doctor has never accepted my diagnosis by numerous other doctors of atypical facial pain; during this opioid overdose crisis the current climate of anal retentive obession by pain docs about every narcotic pain pill dispensed leaves them in general, and this pain doc in particular, leery of fuzzy diagnoses, like atypical facial pain, which by definition is nerve pain in the face of unknown cause.
If traditional medicine isn't capable of diagnosing my underlying gut flora and infection problems accurately, and it isn't, then at least let them give me pain pills to make the nerve pain, which is the primary symptom I have from all this immune system stuff, bearable, instead of slapping a label on me and sending me on my way with a self-help book.
I do have problems with anxiety and depression sometimes, and there was a lot of emotional trauma in my childhood, which this book helps people address on their own. I'm probably going to see if my local library has the book.
Even so, 95% of the days when I'm overwhelmed by negative emotions are days when the nerve pain is unmanaged. When I'm not overwhelmed by pain my mood is OK. The biggest predictive factor, by far, of my mood is my gut flora. When I'm able to keep the gut infections down, the nerve pain tends to be manageable. Let the gut infections go unmanaged, and this body becomes something I don't want.
The day of the visit was a bad day, the nerve pain was keeping me from being able to think straight. My default mode, especially when I'm overwhelmed by pain, is honesty. I made the mistake of telling the pain doc that I had digestive problems that had interfered with my ability to absorb medications in the past, that those problems were recurring now, and that it would take six to eight weeks for things to calm down enough for me to absorb medication dependably again. I was also foolish enough to tell him, when he asked, that I thought the atypical facial pain was caused by referred inflammation from my gut and immune system into my head.
He of course disregarded what I said, because traditonal medicine regards these issues as nonexistent, and eagerly jumped into talking about the self-help book. I was polite to him, even though the way he was behaving was invalidating everything I struggle with every hour of every day, and have done so for two decades.
I needed this guy to give me effective pain medication, instead I got a label and a self-help book. That's OK. I've encountered this kind of behavior before, and will encounter it again. It may slow me down, but won't stop me. There are two pain docs in a neighboring city who would be happy for me to walk in their door tomorrow, docs who regard atypical facial pain as a valid diagnosis.
I'm grateful for my holisitic doc, she's the only one I can be completely honest with. Dealing with specialists is like a chess game; in exchange for talking about part of what's going on with me, using terms they understand, they're willing to help me. On days I see the pain doc I take my best sleep meds the night before, my best pain meds during the day, eat foods I'm least likely to be allergic to, have a neighbor drive me so I can save my mental focus for dealing with the doctor, etc., etc., and do whatever I can do to be coherent and appear rational and responsible to these people whose help I need. Do I feel anxiety about these office visits? You bet.
If there are people on this board who like doing mind/body work, the self-help book this doc thinks has a good proven track record for dealing with negative emotions that may contribute to physical suffering is called "Unlearning Your Pain," and it's available on amazon.com.
Traditional medicine can pucker up and kiss my butt.
GVS
Posts: 242 | From durham, nc | Registered: Oct 2016
| IP: Logged |
posted
I am so sorry you had to go through that. You need to be getting help, not being patronized!
Perhaps you could contact your NC Lyme Support Groups and ask if they can recommend a new pain doc who understands Lyme Disease and its effects?
Also look into trying CBD Oil for your pain. Our son is in the process of doing this and has just started taking a custom-blended CBD oil which is specifically formulated for one's individual issues. This is available by prescription only which was ordered by his LLMD.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
posted
Just to put it out there--I used to have facial pain and couldn't find anyone who could figure it out. I finally went to an ear nose and throat specialist. He diagnosed a facial migraine. He said it's actually common. I control it with diet, and when needed, migraine meds.
I know there are caring doctors out there, but most can't figure our complicated health out. If they don't view me as a partner in the process, I never go back.
Posts: 552 | From New Mexico, USA | Registered: May 2007
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
GVS
You are one strong warrior. You have been through hell. I am sorry. Your determination is what will get you well. Mainstream doctors are CLUELESS!!!!!
It has a few mistakes, Post-Treatment Lyme Disease Syndrome, instead of Chronic Lyme terminology, the use of corticosteroids which lowers our immune systems, and to refer to the CDC for antibiotic treatment. But it offers the pain practitioners medical sound science on how to treat their Lyme patients for pain.
Quick story. When I went to pain management, the doc walked in and asked if I would mind having 3 residents shadow her during my appointment. I the advocate came with Lyme brochures to educate the masses so the more the merry.
I was asked about my pain and my specific illnesses. When I mentioned Lyme disease, one of the residents, who was from Maine, educated the pain Doctor. The resident explained the chronic pain her family and friends suffer from this horrible disease. I cryed and shook my head in agreement. I left with a script and my faith in humanity.
Hope you find relief soon. You deserve to be pain managed.
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic