posted
What do we do or what medicine is out there that helps with the central nervous system? Besides benzos?
I know there is Lyrica and Neurontin, but anything else? Sometimes I don't feel like I can go another day. I went to a pain management doc yesterday and asked and he basically laughed in my face and walked out. There's no medicine for us? I'm so tired of being drenched in Icy Hot, hot pads, cold paks, etc.
There has to be SOMETHING ELSE. There's no medicine for us?
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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posted
Nessa... what pain are you talking about... headache, stomache, joints, skin, facial...?
The stuff Ive read says that you can take otc pain releivers provided they dont interfere with the abx or other supplements.
Beyond meds for pain, the other things to try are meditation, yoga, exercise...or simply laying, and submitting to the pain till it subsides.
Ive found that ice packs on the head help with headaches and facial pain as well.
But it would help if we know which area of pain you're talking about. Neuro refers to the neurological stuff (emotions, cognitive), which typically arent physical pain related, but are more mental related.
Posts: 514 | From . | Registered: Apr 2008
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posted
I get stabbing pains in my neck, sometimes collarbone, and bad sensitivities in my ribs.
My neurologist considered them to be Neuro pains.
Is this right or wrong?
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
And here comes the "drug-pusher", Clarissa.
Nessa: During my very bad Lyme herxes years ago, I had HORRIFIC pain all over. I used to steal percosets out of my Dad's medicine drawer (he still had them after his hip surgery).
They TOTALLY helped but my Dad was worried about me getting addicted...but for the reeeeeally bad times, it was a respite from hell.
Do you think your neurologist would give you a small quantity to help you through the really bad times?
I know it's only a band aid but hopefully your herxes are temporary, too!
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
quote: Neuro refers to the neurological stuff (emotions, cognitive), which typically arent physical pain related, but are more mental related.
Neuro refers to the nervous system, not emotional. There are nerve fibers all over the body...nerves send signals to the brain.
It is not mental. It is pain. If you dropped a rock on your foot, it stimulates nerve fibers, sending messages to the brain. The brain then reacts.
Pain is the word used to describe the sensation of a rock falling on your foot, or your face going through a windshield in a carwreck.
It is real. To say the sensation is all in your head, and is emotional or cognitive, is a fallacy.
It may not have an external source such as the above examples. It can have an internal source such as neuronal misfiring and myelin sheath destruction in CNS, etc.
Nissa, ask your llmd for referral to different pain specialist. Tell him/her what the person said.
In addition to above recommendations, look into studies for diabetic neuropathy, for possible supplements to help.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
As far as wording, I am pretty sure that neurological and nerve pain refer to the same kind of pain. I have to say that I agree with what Clarissa said. It sounds like if you're going to a pain management specialist that you've probably already tried everything over the counter. I would keep trying to find a new pain doc but I know it is costly and difficult as sick as you are. Have you ever been prescribed any narcotic pain relievers? I know there are people on here who are against that but I don't think they understand the pain we're dealing with. A lucky percentage of us are experiencing hell others cannot even imagine. When you say you don't know if you can go on then I imagine your pain is quite severe and yoga, massage, and exercise will prove useless and may actually make it worse. It does for me anyway. I may be misunderstanding your case but my only reference is my personal experiences. I am not in anyway saying that the alternative therapies mentioned are useless, they are great for people with less severe pain.
posted
I call it Neurological pain because sometimes I feel like the pain is almost created by my brain as opposed to me accidentally stubbing my toe on the chair and then the pain registers.
It's the hardest thing to explain. When I went to the pain management doctor, I've been there many times before, even before I new I had Lyme, but this time I saw someone knew and he was an a******.
He was such a jerk. I just started bawling. He just walked out on me. I was telling him/asking him about my neurological pain...my stabbing burning nerve neck pain and he said what I was saying made no sense.
I asked if there were any medications besides xanax and co. that would help calm my CNS because I felt like that's where a lot of my pain comes from. Well, he snickered and pretty much walked out.
When he snickered at me I did tell him that I didn't appreciate him not taking me seriously. What a jerk.
I told him that I had Lyme and it can cause that pain and once again I heard the line "Well as much as I know about Lyme it can also cause psychiatric disorders and you need to go see a shrink. *GRRRRRRRRRRRRRRRRRR*
I suppose that since I'm going to start Flagyl tomorrow and then IV therapy next week, getting into real treatment, that my symptoms are going to come out worse.
I was/am looking for something to help with the pain. I called my busy LLMD's nurse and asked her if I could try Neurontin but she said to go to my PCP for that.
I called her and I have to come back in (I was just there 2 days ago *sigh*) to get an rx for that. I did try Lyrica but I started twitching, so I stopped.
I thought it was the Lyrica, but it wasn't. I don't think I was on it long enough to help maybe.
I really wanted to try that Casamet (or however you spell it) Nabilone is the generic name I think. But I doubt that asking for it is going to make me look any better. I read that it is supposed to help with nerve pain. It's also an anti-nausea med that someone on here suggested.
I'm just so sick of my neck feeling so tight and burning, tired of the rib sensitivities, tired of the weird neuro crap. I say it's neuro because when I take stupid benzos it stops or eases up.
It has to be something with my brain. LLMD said I was a total Neuro Lymie.
If you don't have neuro lyme then it seems that you can take actual pain pills for actual pain, but this pain that I have seems to come from my brain and it seems there's no medicine for me.
And I've tried the big gun narcotics too, but they don't help. I throw them away.
I'm getting so frustrated and depressed from all of this.
I KNOW this isn't in my head. Why in the world would all of the sudden would these symptoms start when I didn't even KNOW anything about Lyme? Makes no sense. Along with physical stuff too, constant ear pain, sore throats, I can't imagine that. Nausea.
I'm being a total whiner today. Sorry. I'm not too sure where to look to for help any more. I always have considered myself to be tough when it comes to pain. I have lived with horrendous ovarian pain for almost 7 years. But I just lived with it. This is different. This is unbearable. Maybe because my mind is in a compromised state because of Lyme.
I know my mind is different now. I can tell. Something is different. But I'm not nuts! Sheesh.
What a sick disease and what a terrible time to have it. No true fixes. I already feel like test rat. No vaccines. No good testing. Sucks.
*Whine, whine, whine*
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Were you able to get Singleton's book yet?
After reading that, you will see that the pain is not being created just out of nowhere.
Lyme is toxic. that creates pain by damaging cells and adding to our toxic buildup - inflammation, decreased circulation.
there are so many reasons for it . . . he offers some solutions.
Does the magnesium help at all ?
The fish oils.
While there are reasons other than the mind creating pain, to nourish the brain is essential in overcoming pain. Fish oils/omegas, etc.
If someone has recently quit smoking or is a smoker, there may be additional requirements with nutrients. Extra vitamin C, for example and care to avoid synthetic E and use only the natural E. (Of course, LLMDs would work with anyone who might be a recent smoker so that safety issues would be managed in the detox stages.)
Circulation issues may be helped with gentle massage, etc.
Good luck and this all seems overwhelming, but it will get better.
posted
Neurological would only have implications with the foot example from the electrical impulses, meaning cns.
Neuro problems would be if you didnt feel pain in the foot, ***or** if you never dropped a rock on your foot, but you still feel pain there. ...aha... Now we're getting somwhere.
If thats what you mean, then yes, Id agree about neuro because then its a case of the nerve endings, the signals, being messed up. Basically your brain believes there is pain there, even though physically, theres no known cause for it.
Thats what probably 99% of lyme people encounter all the time. Pain, but no explanation for it.
Yes, that would be neuro lyme.
I wasnt trying to enflame, just wading through the verbage.
Posts: 514 | From . | Registered: Apr 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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quote: " . . . Basically your brain believes there is pain there, even though physically, theres no known cause for it.
Thats what probably 99% of lyme people encounter all the time. Pain, but no explanation for it. . . ." end quote
--=-
I'd say it's the other way around, that 99% of the time there is a physical cause for it. The brain is inflammed, there is a toxic illness that is eating away at the lining of the nerves, etc.
There is a long list of why nerve pain and neurological damage happens with lyme. We may not be able to SEE it, but the physcial connection is, indeed, strong.
at www.ilads.org - in the articles and presentation, Audrey Stein Goldings' article details much of that.
Excessive cytokines, also a result of lyme, can contribute greatly to pain. We have so much more to learn, but it's clear there are many contributing factors that cause pain.
posted
Is the "nerve" damage I'm feeling PHYSICALLY in my neck or is my NERVOUS SYSTEM in my brain causing my pain???
Do you get what I'm saying? This is my #1 question about everything. Chicken or the Egg??? Is it my brain or my neck?
If it hurt in my spine, I would think of it as physical. But it doesn't. It's stabbing, burning, tight skin, feelings.
And here's another question: WHY MY NECK? I don't get it? Why not my legs? Or my arms? It's just in my neck, sometimes in my collarbone area.
And what is it that makes my ribs hurt so bad? I have one spot that I swear there's something under my ribs or something. It's been there long before I ever even knew about Lyme.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Nessa,
I say this with kindness, as you are beginning this journey, you will go bonkers if you try to figure out what is causing what.
It's a huge basket, woven with lots of stuff we don't want and missing lots of stuff we need.
If you follow your doctor's advice, focusing more on what to you need to do with nutrition, etc., that will take all the time and energy you have.
If your self-care is all figured out and you are following that nearly spendedly, then, rather than still try to figure out this or that, it might be nice to enjoy what you can for that will feed your spirit and give your body a better chance.
If you are in pain, it sounds like the magnesium in no longer working? Are you taking it with B-6?
Also, sometimes, like layers of an onion, one layer has to be addressed at a time.
And, (if I recall correctly) you've just quit smoking, so your body is going through a lot of changes.
I'll bet you feel better soon but it does take a gentle approach and first. Like an onion, one layer at a time.
As for what can help now, I'm hoping you can call your LLMD's office with your intial question about drugs. Please don't add anything until you talk to him or his office staff.
Any addition or subtraction can alter the course of your treatment protocol. AND he needs to know if you need more to handle the pain. You might see if you can schedule a few minutes to go over questions - or someone on his staff could help but, please do call him.
And, again, the Singleton book, "The Lyme Disease Solution" is an absolute gold mine as far as explaining so very much in regards to what is happening AND what can help.
Good luck.
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[ 06. August 2008, 10:15 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I plan on picking that up tomorrow, hopefully a book store has it.
Thanks for the kind words. Usually I'm more of a sound mind and Lyme has made me frantic and confused.
I'm glad I have the ppl here to help. Sometimes I tell myself maybe I should stay off here because sometimes it scares me more but I get a lot of support and info from everyone and I appreciate it.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Nessa,
I don't know if book stores carry Singleton's book but Amazon does.
One trick I use for when stuff scares me is to say "okay, well, what can I do about that?"
If there is something, I'll consider it. If nothing, like an asteroid hitting the earth, I just have to hope for the best.
I'm not saying don't come here. But if it scares you, be sure to end with a clear mind about what to do. Rest is usally good - or a short, stroll around the block. Move the fear energy so it does not get stuck.
If you can't move yourself, you can move your spirit by looking at art on the web, singing with your kids, etc. to turn it around.
Fear is a thought, an emotion. You can move through it and replace with other thoughts and feelings. Hope you have a cool summer breeze.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey Nessa,
I've got the same feelings only they are in my head. Head pressure, feels like mommy put the rubberbands on my pigtails too tight, severe migraines....blah, blah, blah.
You're not nuts. Your symptoms are real. AND let me tell you this, pain meds: darvocet, Vicodin, motrin etc. do not touch my symptoms.
Klonopin is the only thing that has given me relief, considered a benzo, And sweetie, I am not crazy....I am infected!!
You too. If the benzos help use them until you find relief in abx treatment....sincerely, or you will go crazy from the madness of it all.
Best to you, Feelfit Posts: 3975 | From usa | Registered: Aug 2007
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Good golly,so she used the wrong definition. Could we all stop and help her now? Nerve pain, neuro pain. Who cares? ITS PAIN and she has it.
SO, to answer the question: I used peppermint oil - hard to believe but it worked, and I did trigger point therapy, sauna, and chiropractor for the pain. The trigger point therapy was what finally eliminated my pain for over a year. I have to go back now and have it done again as it is acting up again. ( Go me)! Ugh.
I tried a hot tub and it was a BAD BAD idea for me. I swear I was herxing by the time I got out. Just food for thought, hope it helps.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
Nessa-I have been dealing with severe nerve pain in my feet for close to a year now. I was originally diagnosed with perepheral neuropathy, six months later tested pos. for lyme, bart,and rmsp. neurontin,and lyrica were no help at all. Family doc gave me tramadol with acetomeniphen and this does help some. I have been on doxy, biaxin,and azithro. during the past 4 months with little improvement. I feel your pain [literaly] and i know what it does to your mental state. All we can do is be strong and not give up. I know this doesnt help much but sometimes its nice to know others understand.
Posts: 19 | From kane , pa. | Registered: Apr 2008
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posted
I have been dealing with chronic severe leg pain for 3 years now.( I have no diagnosis but was hoping to help you) The pain management doctor that I went to see gave me Trammadol. It has help me a bunch. It is a synthtic opiod so there is a chance of addiction. I had some luck with Lyrica but the mental fogginess was too much.The Trammadol works by changing the pain signal from your brain. The pain is still there but it helps me function in a more normal matter. Hope this helps.
Posts: 7 | From Pflugerville,TX | Registered: Aug 2008
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