posted
I just posted a reply about arm pain and it set me off on a little tangent about pain meds.
Before I was diagnosed in November, pain had become unbearable. All over, unrelenting pain, with the tendons and joints being the worst. Best way to describe it was as if an electric current of pain was coursing through me and there was no off switch.
On a visit to my GP I was looking for relief, any relief at all. The PA was very skeptical and prescribed physical thereapy and an arm band for my left arm tendon pain. What a joke.
The term I have heard before is "Drug Seeking Behavior". There are many people who misuse prescription drugs to get high.
That PA was looking at me like I was one of those people, I could tell. How frustrating.
Until I contracted Lyme 10 years ago I was the picture of health. I was a runner, logged about 25 miles a week and felt tremendous.
I remember whenever I encountered a sick person I would look down on them and think they were weak, or lazy.
That PA was a young woman, seemingly in great health. I wonder about their training and if they are taught anything about chronic pain management or if they just need to mature and with experience will come empathy?
But the topic of my post is this term "Drug Seeking Behavior" and how the medical community applies that in a broad fashion.
The only time I ever was able to get pain medicine was when I had lower back pain and they gave me Tramadol which helped a lot with my pain.
During the past few years I was desperate for any kind of relief. I remember thinking, just a little break from this pain would be so welcome.
How many people can't get any relief because of this issue about "Drug Seeking Behavior"?
If the medical community doesn't see a limb flopping around, a bone sticking out, a positive test (they use crappy tests for Lyme) or blood all over the place then you are considered a drug addict.
I wonder if they realize the moral responsibility they have? This really troubles me - it's an atrocity that we should be sent home and given a slip for physical thereapy while they jot a little note in your file about "Drug Seeking Behavior".
They congratulate themselves on keeping one more drug addict off the streets.
What they don't realize is that many people will seek relief in illegal, potentially harmful ways.
This issue has really come to the surface since I was finally diagnosed and now look back on the last decade and realize what a disservice was done to me by the medical community.
I am usually not one to point fingers and believe strongly in the concept of personal responsibility.
But when we are at our lowest, sickest, we don't always function to full capacity and aren't always able to advocate for ourselves properly.
Understand that pain medicine in and of itself can be a bad thing, causing addiction and ultimately losing it's effectiveness if over used, along with some dangerous side effects.
I really think this is an area where medicine needs to improve.
Ok, my rant is over Posts: 54 | From Northern NY State | Registered: Oct 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
When I was first diagnosed with 'chronic reactive arthritis' I was put on arthritis medicine (can't remember what it was) an the pain was bone crushing... the arthritis medicine did nothing.
My doctor sent me to a pain management psychiatrist. I had to go to a handful of sessions to make sure I was really in pain and not just looking for drugs.
After the 2nd or 3rd session with him, I flipped out. I said - have you ever BEEN in pain? What do you KNOW about pain? What could you POSSIBLY know about the kind of pain that never goes away if you have never BEEN in pain?
I went on and on for about 5 minutes... and I got a prescription for percocet.
It helped me to sleep... which at that time was my biggest problem. I couldn't sleep because the pain was so bad.
I couldn't take the stuff during the day because it knocked me loopy. Plus, I had kids I had to have my head on straight.
You are right. Medicine needs to improve. How? I don't know.
I found a way to relieve my pain naturally with a powerful antioxidant.
I hope you find what works for you.
My rant is over too.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Are you seeing a LLMD? What do they know about your pain, and what do they say about treatment options? Are they open to using controlled substances at all?
Sadly, despite rhetoric about "holistic" therapy or "treating the whole person", even ILADS-type LLMDs don't seem to be open to the full range of pain management treatments. They certainly understand that Lyme patients are in pain, but tend to recommend exclusively adjunct therapies instead of treating the pain itself directly. I find this unacceptable professionally.
That said, I believe you should still speak to a LLMD regarding your pain, but if you are not receiving the kind of relief that makes a difference in your life, I would ask for a recommendation to a pain management specialist physician. You can also seek one out on your own, unless you have a HMO plan with required referrals (in which case you'll need your primary care to write the referral). Someone may even be able to recommend one via PM.
Pain management specialists are MDs or DOs, usually with specialist training in anesthesia and go on do to a fellowship in pain management. These physicians are there to help reach a better quality of life for people in chronic pain, including prescribing controlled substances to those that need them.
Drug seeking behavior is a hard label for some patients to avoid, but it is best combated with knowledge and proof of your condition. Drug-seekers typically try to scam physicians (and ruin accessibility for those with real pain!) by asserting they have something amorphous and untestable - usually chronic back pain or something similar.
Having documentation of your tick-borne infections is your most powerful weapon against the prejudice of others. Yes, there are those that will still treat anyone without an easily visually inspected affliction with suspicion, but there are many doctors that are used to dealing with those with chronic illness. Bring any tests that come up positive and if your treatment is based on clinical diagnosis at this point ask for a letter from you LLMD explaining the nature thereof, and providing a contact letter for your pain management physician if they have any questions.
When meeting with a pain management specialist, it is important to be honest and describe the pain as best you can - do NOT embellish anything but don't hide anything either. Show the documentation you have and describe the other treatments you are undergoing as well. Be willing to try options save for those you know to be in error regarding your health - for instance, steroid injections are anti-inflammatory and are helpful for many people in pain (especially those with autoimmune conditions), but for those with active pathogens they are detrimental! You will probably have to give a urine sample if you are given prescriptions for controlled substances - this is normal, and is as much for the office covering themselves as it is for you.
You don't have to live with pain like this without options. Pain management has been an integral part of my personal treatment and I always recommend its incorporation into treatment of tick-borne infections. If you have any further questions I'll be happy to provide what I can.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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posted
Considering the fact that some lyme docs have been gone after because they DID prescribe pain meds to suffering people, and that way the state medical board can say it wasn't lyme, it was pain medications "abuse".....well, it would make sense for these docs to refer patients to pain specialists instead. A doctor in VA closed his practice because of board persecution on this issue.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Blackstone, fortunately, my pain has subsided a great deal with treatment. It is now bearable and my mental state has improved greatly just knowing what is wrong and knowing I have a course of action now.
During my 10 year odyssey I visited a pain clinic (steroid shots in the spine), tried chiropractic, acupuncture, physical therapy and massage all with varying degrees of relief.
It has been a true struggle for me to get to this point, culminating in intensive research and a self-diagnosis of Lyme based on that research - all at a time during which I was nearly incompacitated due to this disease.
I wonder how many misdiagnosed people just give up and resign themselves to a life of pain - a low quality life for sure.
Thanks for your comments. It sounds as if you have a medical backround. What you say makes sense to me as far as going to a doctor with proof of your condition.
My problem was that I was misdiagnosed with FMS and, although that condition has gained wide acceptance in the medical community, there are still practitioners out there who don't buy into that as a legitimate illness. About three years ago, I suggested to my GP that I might have Chronic Fatigue Syndrome. His comment: "I don't believe in CFS".
So I think your suggestion definitely works with someone who already has a Lyme diagnosis - you could show Western Blot results for example. However, in my case, I didn't know what I was dealing with for most of the past 10 years.
Please don't misunderstand me, I have great respect for people who choose medicine as a profession. I feel that many are drawn to the field with a genuine desire to help people.
My comments are born out of frustration and I wanted to get his off of my chest, so to speak. Again, thanks for taking the time to respond with thought-provoking comments. Take care.
Posts: 54 | From Northern NY State | Registered: Oct 2010
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posted
Funny how it's so hard to get drugs for pain management, but I had no trouble at all getting anti-anxiety/antidepressant drugs.
Before I was diagnosed, I did have some pain issues, but my main problem was feeling like I was having heart issues, breathing issues, and vision problems.
Doctor after doctor kept telling me all I had was an anxiety issue and I just needed meds for it.
My doc, another doc I saw when mine was unavailable, and an ER doc prescribed Zoloft, Xanax, Lexapro, Celexa and Ativan, none of which I could take because it made the panic episodes WORSE.
So basically, I had a medicine cabinet full of these psych drugs because I'd take one pill and then couldn't do anything with the rest of them.
Boy, I'll bet the docs who label "Drug Seeking Behavior" would have had a field day with my medicine cabinet.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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