posted
I am being put through the ringer (however you spell it).
My neurologist has been giving me 10mg of hydrocodone for over a year , as you can imagine it does not work at all anymore.
I waited 4 months to get into a pain clinic my neurologist reffered me to. First they forgot to send my file, then it took them a month to call and give me an apt that was a month away!!!!
So the apt was today the 18th. I had to say I had lyme disease because they would want to give steroids.
He said "I dont know why all of your other doctors didnt help you. I cant do any thing ... It was nice to meet you"
He walked out of the room. Quickly, he only spoke to me for 5 minutes.
I couldnt believe it!!!!!! So I dont know what to do.
My LLMD told me healing lyme doesnt involve pain medicine.
What is going on here? Im dieing and i take care of my grandmother 94 yrs old dressing her, cooking for her, and cleaning her . And then my daughter. Who is only 2.
I cant go on like this!!!!!!!!!!! Why is this happening to me.
What is everyone else doing? What doctor manages your pain?
-------------------- Let us fight with peace. Posts: 90 | From Niles, Ohio | Registered: Aug 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hi.. My LLMD also does not support or give Pain meds and says the same thing about it. But I tell him I have to be on them.
I was able to get my first pain meds from my Primary Care Doctor years ago. I was referred to a pain specialist. And it worked out for years until she left her business for family reasons.
I had the same issue at a Pain Clinic. Stay away from the Pain Clinics. Try to search out pain specialist physicians who have an office practice.
Ask around on the finding a doctor sites and or anyone in your area who also has lyme or pain conditions.
Support is out there but it is not everywhere you turn that is for sure. When you find the right one will know it.
Also before waiting for so long for a first appt make sure you really interview the place asking about their policies and what kind of patients the see and if they have treatment people with Lyme or FMS and if the use narcoitics if necessary.. Just get a feel for them prior to coming in. I have asked them to go over my questions with the doctor before I make my appt and they always have been willing.
Otherwise you waste all that time and you end up getting there and being put off and pushed away like You did.. That happened to me and they had the nerve to bill me. I complained and made them go back and ask the doctor. I was only talked to for much less than 5 minutes and given nothing. Not even another referral or idea .. Just treated like some weirdo and or liar or just someone they do not want to deal with. I did not even get looked at in the eye..
Of course they ripped up my invoice.......
I am now with someone great. Sadly he has a long wait list and he only takes certain patients.. more like me. The severe pain conditions from such things like Lyme and FMS and other conditions that have trouble out there getting support.
So it does exist.....
Keep on asking around for others in your shoes in your area.
And Do not give up...
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That's pretty sad if a LLMD doesn't believe in / won't Rx any pain meds. For goodness sake, they know Lyme causes pain. Hmmmmm....
How do you interpet that? They choose what to believe in? You have Lyme because of pain, but your pain isn't bad enough to need treatment.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
It's my guess that LLMDs are already being persecuted, and they don't want any more scrutiny for writing pain prescriptions. (Docs who write a lot of rx's for narcotics can and do get investigated.)
My LLMD won't prescribe anything stronger than Vicodin, which is what I'm taking (at the 5 mg level).
I am also taking 300mg gabapentin at night to help with neuropathic pain, which helps me sleep. I got this Rx from my psychiatrist (who is not LL but is tolerant). She handles my SSRI and anti-anxiety medications too.
I went in to the psychiatrist because I was having problems sleeping due to pain (despite the Vicodin). She was really understanding and helpful, so that might be a route to take.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Perhaps it's because they use the pain to judge the effectiveness of treatment since the testing is so lame?
Those meds can also CAUSE a boatload of issues that could be confused with symptoms & cloud the clinical picture.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Veromia,
Sorry you had such a bad experience at the pain clinic. My guess is that the word "lyme" shut the guy down like a blizzard.
We all know most doctors, even (or especially pain doctors) don't know much about lyme. I would hope that every LLMD had a good understanding of the intensity - and various kinds of pain lyme patients face every day.
However, most LLMDs don't want to add stress - or damage - to the liver. So many pain meds are very hard on the liver - even tylenol at normal dose can destroy some people's livers. When the liver is compromised, pain will increase tremendously. And too much ibuprofen can damage kidneys . . . So, it's a slippery slope.
Like AnnaL, in a post above, Some patients find Neurontin (gabapentin) helps nerve pain and sleep. A few can't tolerate it but many can.
There is plenty of discussion about ways to relieve pain in this book but he also stresses the importance of liver protection.
Often pain is from the toxic buildup. Liver support methods can help that. For pain from neuro damage, it is important to find a way to lessen the pain or that's just more stress on the body.
Massage can be very helpful. Might there be a circle of friends who can at least treat you to foot and hand massage? Is there massage school nearby with sliding scale sessions?
Adding anti-inflammatory agents, too, often help but I'm sure you've tried most of those. Singleton's book has quite a list, though.
If fish oil and magnesium are not enough, there are other ideas here, too:
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
. . . Corydalis is one of the strongest herbs available to relieve pain and reduce inflammation. Studies have shown it to work directly on the central nervous system . . . .
(note: this page also mentions Amino Acid L-Phenylalanine - I would avoid that as it can be quite stimulating.)
posted
I do believe the theory of the LLMDs not wanting a narcotic trail investigation.
And I have considered the liver situation.
but the reality is that we cannot lay around healing leting our livers define life. We have children and husbands,wives, elderly, who need us,
Not this half *** grumpy thing crawling around trieing that i have become. All of these things may or may not help or take away a bit of pain.
But where does it become accepted and a normal disease warranting respected understanding pain management.
He implied me a strange thing, implied I had been turned away by other doctors saying why didnt they help u, And told me i was depressed, because i see a psych to recieve ADD meds for brain fog.
thank you all so far, I will look this over.
God he had no idea what was going on with me. I cant believe he just said goodbye. No evaluation.
I had a swollen knee to show him too he never saw. just cant believe it.
I even had a dexa scan in august showing i have osteoperosis at 25 yrs old.
-------------------- Let us fight with peace. Posts: 90 | From Niles, Ohio | Registered: Aug 2009
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posted
Pain clinics...what a nightmare...for me anyway.
I was blasted with steroids and did not respond. Kept asking the pain doctor if there was something else going on here? I mean you have never had a patient that did not respond to steroid treatment?
My last appt I told him I had leg weakness and nausea, could it be due to the narcotics? When I went back and got my records he NEVER he put this in his note. I ran as fast as I could from there. For other reasons as well to much to explain. Doc always double booked not listening.
My LLMD would prefer no narcotics but understands they are needed. I don't want to be bedridden and would like to keep my part-time job. I take 5mg oxycodone hcl, 40-60mg/day total depending on where I am at with the antibiotics. My primary doctor now prescribes them. He has known me for 10 yrs and knows when I came in and my BP is 160/100 from pain that yes I needed an increase.
I think you really need someone who can manage the pain.
Posts: 207 | From NH | Registered: Jul 2009
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posted
My primary prescribes my narcotic. She's a very compassionate person. She's doubled my dose during treatment.
I found her by word-of-mouth when I was in the Fibromyalgia category. She had a reputation for treating those kind of patients.
Maybe you should find the phone number for a Fibro support group and ask the faciltator for a dr. referral. The Fibro drs. are willing to prescribe narcotics.
Good luck!
Kim
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I just wanted to add that I had developed quite a rapport with the woman who handles my father's pain management.
I worked very hard with her trying to get his pain under control without having the meds effect his ability to function.
She was formerly a geriatric nurse, prior to getting into the pain management field and I think that really helped her understanding of the intricacies of a lot of the medications. These are things that your average physician doesn't usually understand.
She really has done an outstanding job with him. She is also an incredibly kind and caring person. I think people like her are a rare find in medicine these days.
ANYWAY....She knows that I have Lyme & the last time my dad was rushed to the hospital we somehow ended up chatting. I said something about being afraid of pain meds & how I've had them Rxd but the pain lessened to a tolerable level so I just kept them for emergency use.
I guess it might have been stupid to say something like that to someone who's very livelihood is based on effectively controlling pain. She & another woman who works with her proceeded to give me a lecture for my stupidity. (She could get away with that because I love her like family and I know it was because she cares about me. )
Chronic, excessive pain is NOT a good thing. It can impact your sleep & your immune system. If it effects your sleep it harms your body's ability to heal itself.
I really don't envy people in pain management though because I would imagine that Lyme disease might easily be used as an excuse for a drug abuser to try to obtain meds.
I had someone working on my pool filter last year actually ask me for pain meds. Before he left, he was complaining that his back was bothering him. He said that he had a friend, who had Lyme, that used to get "some good pain meds", so he figured I might have some on hand.
I told him about my stupid philosophy of needing to know my symptoms to try to get rid of this as quickly as possible, because the testing stinks ...blah, blah, blah.... Then I gave him some Ibuprofen and suggested he go see a doctor himself if had regular back pain.
I'm sure there would be people out there that could easily fake symptoms & make all kinds of claims, just to get drugs if they knew how hard it can be for a doctor to confirm what's going on.
I think there might also be laws with narcotics that might require a referral to pain management after a certain length of time or something. I know there are a lot of controls in place by the gov't to try to prevent abuse.
They wouldn't want some desperate Lymie trying to sell their pain meds to pay their medical bills.
Have you tried the LDA's physician referral system? I think there may be pain management listed there as a specialty. If that doesn't work, you'd probably want to check with your local support group.
I'm sure there are many doctors in pain management who have the same type of attitude issues so many of the Primary Care physicians we encounter.
I'm sure they'd much rather have the patients who's problems are more easily documented.
If you have any co-infections, make sure you list them first on the paperwork with new doctors. I have a long list of them & I bury Lyme in the middle.
I also tell them that I believe that it is the co-infections that may be causing more of a problem than the Lyme.
I think that sometimes disarms them because when they see a patient coming in with just Lyme listed, it seems to trigger more defensiveness than if you give them a few things to consider not being all that familiar with first.
Exactly what kind of pain are you dealing with, can you describe it?
Perhaps some have found coping strategies for the particular type of pain you're having that can help until you can find a doctor who would Rx what you want.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
There may also be other reasons why physicians might be reluctant to Rx narcotics to Lyme patients.
Neurological impairment could cause them to forget they just took the meds, so I would guess at higher doses it could be dangerous if they took it twice.
There's also the risk of suicide with Lyme patients and perhaps, if narcotics or sleeping pills were handy, one might be tempted to do something they wouldn't have done in a fit of frustrated depression.
I would imagine that losing one patient to a Rx assisted suicide could really scar the psyche of a physician.
they may have also grown up having someone close to them abuse narcotics or Rx meds. There were a lot of "Valium housewives" who got themselves into bad situations because when Valium first came out, it was Rxd like antidepressants are now.
Maybe many of the doctors who have deep-seated fear that patients will lie to them & abuse their trust actually had moms, sisters or someone else close that had a problem that left emotional scars.
Perhaps at some point in their lives they had problems with Rxs themselves. It DOES happen & not all get caught.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Thank you all, Thank you Spring- for your identification with me you always do. Thank you keebler- for the herbal recommendations Thank you kim-for the awesome doc list, there is one right near me!
-------------------- Let us fight with peace. Posts: 90 | From Niles, Ohio | Registered: Aug 2009
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