posted
... and how did you get your hands on it???
If you've read my other pleading, pathetic posts you know that I'm desperate for pain relief.
My nerve pain has gotten intolerable and nothing helps: Elavil, acupuncture, even narcotics like Norco. (I'm currently guzzling the latter in mass doses; can't be good.)
It's in my spine-- at two points-- and then radiates to my extremeties.
I think my body's reached a pt where narcotics can't help.
What are these nerve drugs that I've heard of-- like Lyrica, etc? How come my LLMD's haven't suggested these yet??
Neurontin?
What about opiods? Patches?
It infuriates me that there's stuff out there that I KNOW will help me and yet for some reason-- I guess the fear of addiction-- it's being denied.
Please help!
Posts: 390 | From Oakland, CA | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I have never done it but a few Lymies in our local group with bad nerve pain got relief with Neurontin. it either helps people WONDERFULLY- or not at all- from my vantage point as a listener!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I have heard that lyrica is very good and neurotin.
Sorry to hear you are in pain. I know what you are going through.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
My heart goes out to you for I have been dealing with excruciating nerve pain for a long time. Much too long.
I was on Neurotin for a long time very high dose however seems it stopped helping when I explained the exascerbation of symptoms. Horrible pain.
He changed it to Lyrcia (sp) It seemed to help alitle. Definitely had side effects such as problems with my vision but he is increasing the doses slowly which is good.
I will let you know in a few weeks if it is helping me.
I guess you have to demand something for the pain. I am sure he can see through examination how badly you are hurting. I wouldn't wish this pain on anyone.
I was diagnosed with chronic regional pain syndrome which you might like to look up for reference. It is quite interesting
I hope you get something to help you as soon as possible. My experience though is not to expect a miracle. But then again everyone is different.
God bless you.
Posts: 139 | From nj | Registered: Mar 2005
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posted
Hi ELLIE, So sorry about your pain- I too have it alllll over and it hurts terribly. I have not been able to wear shoes/sox for yrs. Sheets even hurt.
Nuerotin did not touch my pain. Amitryptoline {Elavil} may help sleep and releive pain. Cymbalta is also being used.
A warm, epson salt bath is my only relief.
Are you detoxing. I think, but do not know for sure if the burning is from toxins???
Peace, BJG
Posts: 468 | From IL | Registered: Oct 2003
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Darling(s),
This is how I address those with the nerve pain; it is so horrific.
Antibiotics helped. Now I am on Lyrica; this is the second generation of Neurontin, and it's common from what I have read on this board, for Lyrica to help, where Neurontin did next to nothing. This certainly was the case for me, and it's been helping me manage my seizure-like symptoms.
While I'm at it, I should point out (since the discussion is going on in another thread) that you would certainly be no better off in Canada. I saw my GP I don't know how many times, as well as two neurologists. The hopping burning pain was so bad that I went to my GP and said, "The burning pain is so horrible, it's like: just take off my skin and take out my eyes". He looked at me like I had two heads and did nothing.
Same with 2 Neuros. Go see Dr. S. He says, "Did they give you anything [for seizures]?". "No". "Well what good is that?".
He gave me Lyrica at that point, and those Canadian "doctors" had spent so much time "working" on me about how basically there was nothing wrong (people on this board for a while who have been reading my posts, know there was something very very wrong) , that it took me three months to try it. I saw him again, and he said, "I know you're trying to manage your symptoms with Tylenol, but that's just not going to cut it."
So I went home and tried it. HUGE difference almost immediately. Looking back on how I suffered with these "doctors" makes me just want to cry. How could they leave me to suffer like this? I'd been suspecting my symptoms were neuro for 2 years, and wasn't taken seriously. Do these idiots not know what the word, "Neuropathy" means? Are they taught that neuropathy is psychological? You would have to be one unrealistically repressed puppy to "create" such a physical manifestation. Those "doctors" are a bunch of uneducated buffoons. Anyone can be a doctor: you only have to go to school for that.
Believe in yourself and get help.
xoxoxo
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I tried Neurontin and it helped but made me fuzzy all day and I gained weight like crazy. I switched to Topomax and added Elavil with it and got the most relief. I was also taking narcotics (switched around over time) Aqtiq for break through pain. All together it helped.
I am so thankful this pain left with treatment and I am off all those meds :-)
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
You all are wonderful. I'm happy to hear good things about Lyrica. I am going to try to make an urgent appt w/ my LLMD. I want it NOW.
Can Brave, I feel for you. I've had so many ID and ER and GP Ducks look at me blankly while I howled in pain, begging for relief. I remember saying to one of them: "All I want to do is gouge my eyes out right now." OF course, I got nothing.
God bless the LLMD's who will listen and actually prescribe something that works.
Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
There is a separate specialist for pain control. They are usually a Physiatrist or just called a Pain Specialist, or sometimes there is a whole Pain Clinic.
Don't feel bad, most doctor's don't know this. I was in excrutiating pain for 8 months until I finally went to the ER and told them to please kill me LOL. Finally got the referral to a Pain Clinic.
Most doctor's are not trained in pain control, it is a whole different specialty. What works best for people like me, in intractable constant pain, is a long-acting time release drug such as fentanyl patches, extended release morphine or oxycontin, and then a short acting narcotic for breakthrough pain, such as the vicodin or percoset. For nerve pain neurontin and Lyrica work best, and sometimes seizure meds work like topomax, or drugs like nortriptyline. I have that too but had too many side effects from them. I am going to try again.
Posts: 615 | From maryland | Registered: Oct 2007
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I used neurontin and it worked GREAT for the pain, however, it made me SICK as a dog, but thats just me. I had NO pain, but I was also an emotional windbag that couldn't breathe for the life of me. I was just flat out ill. I probably could have cut my fingers off, laughed, cried, then laughed more- but not felt it.
Ive used trigger point therapy and peppermint oil, but going to be trying Lyrica and other things. I'm with you on the nerve pain. Its one of my worst symptoms.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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