Other posts here tonight have got me thinking about being more aggressive in terms of pain management....
I'm kind of at the end of my rope here in terms of managing my neurpathy/nerve pain. The narcotic meds that I have (Norco) aren't cutting it at all now that I have started MEpron. For it to be effective, I have to take +10/day, which I am kind of dubious about doing. Not because I'm scared of addiction issues, but because I don't want to overstress my liver.
Elavil is crap in my opinion. NSAIDS do nothing. I tried Celebrex and all it did was hurt my stomach.
I would really like to try a pain clinic. However, I have no idea how lyme-literate the doctors are there. I CANANOT tolerate another DUCK encounter, if you know what I mean, especialyl when my pain level is so high.
Can these places really help you? (Aniek, I know tihs is your area of expertise, please chime in!)
Are they expensive? Do some people's insurances cover? I have Blue Cross PPO.
Anyone know of a good place in NorCal? I've heard good things about the Pacific Pain Treatment Center in Sf and Concord.
However, you need a doctor's referral and I'm scared my LLMD (Dr. S.) will not be willing. Yet my current pain meds are simply not working.
Has anyone's LLMD been willing to make such a referral??? And any ideas going about asking for one?
What I really want are pain meds that are specific for nerve pain and will actually work-- not some joke antidepressant like Elavil.
I don't want to do physical therapy as I'm too sick to really leave my house these days. And I don't want to pay tons of money for pain counseling, bio-feedback stuff-- unless it really works (but I'm doubtful.)
I have pretty much given up on acupuncture at this point.
Thanks for your help everyone. Posts: 390 | From Oakland, CA | Registered: May 2007
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I am gonna guess that Dr. S will be supportive. Remind him that Dr. B the psychopharmacologist spoke at the last ILADS conference about the importance of managing pain and sleep to help patients get better.
I don't know how pain clinics will work regarding Lyme or insurance coverage. However, if I were going to one, I would probably talk about my fibromyalgia pain or arthritic pain caused by Lyme (if that is the type of pain I was experiencing). There are pain medications specific to those conditions, and you can get past the "is it still Lyme" debate.
Hope that helps,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
I'll share my experience with a pain clinic. I went to one for 6 years before my lyme diagnosis at the Fibromyalgia and Fatigue Center (FFC) and my pain doctor would never give me anything stronger than Ultracet which didn't help at all.
I asked her about viruses and testing and she said she would not as everyone has viruses in their system. (Yes, that is true but not everyone has ACTIVE viruses.)
She never considered lyme but tried accupuncture, told me to relax and always asked how much stress I was under. She also routinely did basic blood work on me and gave me thyroid meds.
One time I asked her about Oxycodone and she almost flipped her lid. She said they were very addicting and she would never give anything like that to a patient. So I lived with my pain and my "fibromyalgia" diagnosis.
Hopefully, that isn't the norm for a pain clinic.
My insurance covered most of it. The FFC's are more out-of-pocket but at least they test via Igenex, treat for lyme and believe that the patient shouldn't have to live with pain while trying to get well.
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Pain ducks LOVE steroids & throw them at many kinds of joint & spine pain w/out knowing how destructive they can be to a Lymie. Be careful & check every Pain ctr modality w/your LLMD.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I think every pain clinic is different. My son and I go to a pain clinic and they have not prescribed any pain meds for us. (Our LLMD prescribed Tramadol.) The pain clinic prescribed Lidoderm patches and Tizanidine (muscle relaxant). They also do trigger point injections and other therapies.
We just heard of another pain clinic in our area. My other son is going to try this clinic. We received the paperwork and they will only schedule an appointment after they receive the paperwork.
We now go to doctor that does prolotherapy. It's the 1st time that my son is having a decrease in pain for a long period of time.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
I use to see Dr. S and he actually suggested that I see a pain speacialist.
So I think he will have no problem in doing that.
Also, I know when I saw him he was more then happy to treat some of my pain with Lycria or neurotin wich can help with the nerve pain. Also, soma for the muscle pain. You don't for sure need a referral but some places require it. I know that he wrote me one.
I also know of a WONDER lyme literate pain speacialist in Nor-Cal that would help you. Please PM me and I will get the info to you. I was having the SAME problem a few months ago and then a fellow lymie got me this pain manegement speacialist.
I had gone to a pain clinic and they were hookey. They prescribed me B-12 and magnesium (I already take these, and they can be helpful) and thought it was a joke.
Espeacially because it was so hard to get to and from anywhere that I felt they wasted so much of my time.
I do take things wich are addictive but I can't hurt this much day in and day out. Noboday should have to suffer like that.
Good luck.
Talk to you soon.
Jennifer
Posts: 111 | From San Francisco | Registered: Feb 2007
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posted
Forgot to mention that the SF Pacific Center was a terrible waste of time for me...they did not understand anything about Lyme and was a TOTAL joke.
The place I go to takes Blue shield PPO. That's what I have.
Hope this helps.
Jennifer
Posts: 111 | From San Francisco | Registered: Feb 2007
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posted
I think it depends on the clinic. I went to a PM clinic in NE Ohio for 5 years prior to knowing I had Lyme. They saved my sanity.
I found a combo of Elavil and Topomax plus a variety of different narcotics helped at least take the edge off enough to let me get through the day.
My PM MD never suggested steroids. He did suggest acupuncture, chiro, physical therapy, and tried a huge variety of meds.
Like other MDs, it really depends on who you end up with.
I am off all pain meds now but during that time I was so thankful to have them. I think it really helps. Sleep and sanity help your body heal :-)
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I am blessed, my painMD & pain center does not limit, in fact quite free w/the narcs if warrented. I have already stopped the Vicoden, because I nolonger have the excruciating pain.
My last visit doc asked if I'm sure I don't need to renew prescription.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Sad to hear SF Pacific Ctr is a joke. Was hoping that'd work out b/c it's so close to me.
Jen-- Will you pls PM me when you get a chance? I'd LOVE to get that referral. To be honest, I am absolutely desperate at this point to find someone who will see me ASAP.
Also wondering: What exactly are B12 injections for? I've heard of them. Didn't know they could help w/ nerve pain.
Anyone tried Neurontin or Lyrica here???
Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
PS: Has anyone had the fortune of trying opiods? Opiod patches? Are they more effective than narcotics?
I just don't understand why my Norco (same as Vicodin) has stopped working altoghether. It used to do wonders. I guess my body has become too dependent?? It's so frustrating.
I just want to scream. What a miserable holiday. Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
My Daughter goes to a Pain Clinic that was recommended by the Fibro clinic she goes to for her aches and pains. Fortunatly the Fibro MD believes in Lyme, although many of her patients obviously have undiagnosed Lyme. Doesn't make much sense to me.
I can see these poor people are suffering from Lyme related pain but she treats them with IV therapy. The IV's have helped my daughter get back on her feet, but nothing the fibro MD is doing kills the ketes.
Oh well, I just do what her LLMD says along with my own research. He is very open about most things. He takes care of going after the Lyme.
The pain MD believes there is Lyme, not so sure he really cares, he treats the pain. We don't talk to him about Lyme and he doesn't ask. Does he believes in Lyme or not, who knows?
You need to find an MD that will just focus on your pain and not worry about what is causing it. Ours is treating the fibro pain and since my Daughter has had a positive Epstein Barr test, the pain involved with that, he treats too.
Get off that Norco it is so hard on your liver!!! My daughter is on Oxy, zanaflex and Lunesta. She was very sleep deprived so he (pain MD) said that needed to be addressed. He is a good guy. We went through several different Narcotic pain meds until we found something that didn't make her sick to her stomach all the time. Patches didn't work for her.
Her Pain MD says if you use it the way it is prescribed you don't get "addicted" like most people think. When you don't need it any longer you wean off and shouldn't have any problems.
Good Luck, Hugs
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I have gone to pain specialists. The first one was before my diagnosis. He refused to believe Lyme after I got the diagnosis, he had diagnosed me with fibromyalgia. I eventually stopped seeing him because I had to defend the Lyme dx.
But, he did know his medications and got me on a pain management program I could follow for over a year.
I now see a new pain management doctor. He is at a local hospital that has a pain management program. He hasn't questioned the Lyme, in fact he really understands Lyme pain. I was amazed.
When you talk to your LLMD for a referral, remember that you are not looking for a pain specialist just to get pain killers. A really good pain management doctor will prescribe pain killers for break through pain, but come up with other ways to bring the pain level down on a constant basis. Like muscle relaxers, nerve pain meds, acupuncture, physical therapy, etc.
The pain killers are often necessary, but they should not be the first response to pain.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thanks again everyone for your input. It is always comforting and humbling to know how many others are suffering through the same thing as me, if not worse, at this same moment.
I'm so happy I posted because Jen was able to refer me to a lyme-literate pain doctor in the South Bay, who has reportedly trained with Dr. S. Her technical title is "osteopath" but I think she uses a multi-pronged approach.
I'm super excited. I was even able to get in next week. The secretary actually told me that Lymies are Dr. T's "favorite patients." I really don't know how many other doctors would say that!
Forgive me if I sound defensive, but I am not seeking pain pills (specifically, narcotics of opioids) as an exclusive means of pain management. I know some--well, probably the majority of medical practitioners-- believe these meds should only be used as a last resort.
What I am looking for right now is, after over a year of the same, unrelenting, mind-numbing, soul-and-spirit-crushing nerve pain, is something that will ACTUALLY WORK.
I'm at the very, very end of my rope right now-- It's swinging quite violently and I'm holding on by a few frayed threads.
I am not looking for an easy fix. The thing is....
I've tried acupuncture-- I've been going twice a week since June. I've gone to the meditation classes. I've invested in god knows how many heat therapy products, chinese herbs, supplements that supposedly address nerve pain-- I've tried all the non-narcotic, non-opioid fancy and new big pharma drugs like Celebrex, Elavil, and one other that I now forget.
BTW, in my opinion, a lot of these new and expensive pain drugs like Celebrex and Lyrica are WAY more risky and have more dangerous side effects than good old Vicodin, which has been around for forever, and whose risks and long-term effects are well known and documented-- and of course hyped beyond any rational belief....
... So, for these reasons, it kind of does **** me off a little that one of my LLMD's keeps pushing these little sample packs of Celebrex at me (samples that he gets from the shiny suit-wearing pharma rep who always seems to be at his office!) and YET this same LLMD is EXCEEDINGLY hesitant to write a script for Vicodin or Percoset-- yes, horror of horrors, a narcotic drug!) I still cherish the man, but this routine can get oh-so frustrating pretty easily, considering the fact that most of my days are spent trying to stop yourself from gouging your own eyes out like some doomed greek god-man, ANYTHING to distract you from the feeling that your spine is being drilled into and the nerves in your legs are being twisted, peeled, and pared; and perhaps gouged-out eyes would make a nice bold statement to the rest of the world that yes, in fact, your pain is real. You are not a doctor-shopping pain pill addict.
Sorry for that. But the truth is, I guess, that yes, I am looking for a pain specialist who will prescribe REAL pain drugs because like many Lymies, my pain feels BREAK THROUGH all the time. Maybe I am not as stoic as others. I am just sick and tired of having to jump through a million hoops to get some relief from this hellish condition. IF I have to go to physical therapy class or some kind of joke pain counseling session to appease the ducks and prove that I am not in this to get "high," I will do it.
I just feel that if there is something out there that will relieve another's suffering, it it immoral to withold it. I really do.
Blast. Mepron sure makes me moody. I feel like punching ducks right now. Posts: 390 | From Oakland, CA | Registered: May 2007
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