posted
I wanted to see if there is anyone in pain management for Lyme? If so, how was it dealing with the fact that the Pain Mgmnt Doc doesn't understand Lyme?
Ultimately, a pain Doc that is also an LLMD would be a dream come true.
If found it difficult to convince Pain doc's that Lyme disease is something that even warrants pain management at all.
Currently, I'm on 4 vicodins/day (10/325's.), and the 25mcg/hr Fentanyl patch.
I know the Dr is CLUELESS when it comes to Lyme...but I gave him all my medical records and the name of my LLMD and he tentatively proceeded to treat my pain.
Now when I see him I can tell he knows I'm hurting pretty bad.
What do you think it takes to explain to people how much pain Lyme causes? The pain scale 1-10 doesn't cut it.
Whats some good terminology that Dr's will understand?
I mean, you say Cancer....bam, you got morphine.
Vicodin, Fentanyl do kill pain however, they make you/me dizzy, kinda woozy feeling sometimes.
Versus Morphine, or hydromorphone or oxymorphone. I've been lucky enough to try all of them. and I must say that HYDROMORPHONE (Dilaudid.) taken at a low dose (1mg.x 4/day.)= Felt virtually CURED! No side effects at all!
Straight Morphine offered almost the exact same effect(perceptive-Cure.), but with a little drowsiness, slight distortions. The dose needed to be much larger. About 30 mg x 4/day.
These opiates offered me the gift of temporary health! It was a wonderful feeling.
I just wish my Dr would trade -in all the vicodin and fentanyl for the above.
Anyone have similar experiences?
Do you think it's worth it to use a drug with abuse potential to experience the TEMPORARY sensation of feeling cured? Even if its just for a little while?
Do you think that "we" deserve the choice? Considering the extent of our pain?
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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I wish I had more time this evening to communicate with you concerning pain mgmt.
Our daughter has gone through the gamit of narcotics, antidepressants, antianxiety, etc. etc. all without a pain doctor that believes in "Chronic" Lyme.
I hope I can make some time in the next couple of days for you and I to communicate concerning this subject.
We live in Ventura County, so we're not that far apart geographically.
Posts: 681 | From California | Registered: Oct 2005
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posted
I think everyones tolerance for pain is different. Im not going to lecture that you shouldnt take pain meds. But I will say that your ultimate goal should be to be able to be pain med free, just like everyone should be trying to go abx free. For some people with chronic pain, thats not possible. But Id be concerned about experimenting with narcotics and pain meds. Does your llmd have any advice on alternatives to prescribed meds? Does any other pain mgmt protocol, outside of prescribed meds, work?
Not sure Im helping at all...just thinking out loud. I hope you get some relief from your pain..
Posts: 514 | From . | Registered: Apr 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It's great on the one hand to think of being pain free.
On the other, the main focus should be on getting rid of the cause of the pain.
Plus, getting off the pain meds would be like dealing with another illness. It's a problem in itself.
I don't know what the answer is. I have the Vicodin you describe and sometimes take it with Advil. It takes the edge off when it gets bad.
My pain has diminished with treatment, yet on the other hand, I notice it more now. When the pain was constant, I didn't feel it as much as I do now that it comes and goes ... if that makes sense.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I understand your problem. My daughter has an intractable headache and has for years. I won't go into all the frustrations not just with pain management doctors but lyme doctors also with regards to pain.
Obviously, everyone would like to get to the source of the pain and correct that, but we have not been able to achieve that yet.
My daughter has just been switched to methadone and is happier with it than she has been in a while. It will still take a while for her body to get used to the change and then we will have to trinker with the dosage.
She takes muscle relaxers to help with the pain also. She does not get any short term pain meds, just long acting.
We don't like her having to use such strong meds, but the alternative is not acceptable.
She has gone through withdrawal several times with different drugs and managed to do it.
It wasn't fun for any of us, but you do what you have to do.
Lyme disease and company is not for sissies.
Posts: 177 | From God's Grace | Registered: Apr 2007
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posted
If your going thru a particularly TOUGH part of your treatment. Such as starting IV meds, or beginning treatments, or changing your meds, or resuming your meds after a short break.
All these things cause our symptoms to worsen. However, after a week or two many of us start to "come down" from those initial Herx that can be so bad.
I would say that I would want the choice to take "the strong stuff" under the supervision of a Pain Doc. It IS NOT very likely someone would become a junkie b/c they took several doses of Morphine or Dilaudud every month.
If its prescribed correctly, you will NOT become addicted. You would also be able to tolerate more aggressive treatments and reach a cure faster- Then, you won't need ANYTHING. That IS the goal.
Patients become addicted b/c 90% of them do not follow Dr's directions correctly. Ultimately, they try to take MORE than is prescribed...then over time they become DEPENDENT.
So I think its a matter of: Do you trust yourself to ONLY TAKE THE PRESCRIBED DOSE? Do you have the WILL to follow directions to the tee?
This is why there is so much restriction on the availability of prescription drugs for those of us who can use them to live better lives and NOT use them to "get high".
A few people who are weakly disciplined, who abuse these drugs ruin it for everyone else.
I've used Benzo's for several YEARS now, and have been very responsible about dosing w/ them. As a result, I do not even need to take them everyday for anxiety relief. Just when the herxing is particularly bad.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
Personally, I got my pain medication through my LLMD.
Thankfully I don't need it anymore. After doing a few months of IV antibiotics, I'm pretty much pain free.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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