posted
My worst symptom is nerve pain - deemed paresthesia from a Dr. friend of mine. I know we all have nerve pain. It is what drives me crazy and into depression and makes me want to sleep to escape.
If anything helped your paresthesia (nerve pain) please let me know, I'm desperate!
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Percocet and abx were the only thing that help the burning paresthesias for me.
Neurontin at higher doses made me sleepy and corked me up.
They improved with abx treatment over time so do not despair.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
So sorry you are experiencing this!
I tried neurontin, amitryptiline, and nortriptyline (that last 2 are anti depressants that are additionally well known for helping exactly this kind of nerve pain).
Neurontin messed w. my head -- I felt really weird! But a friend of mine swears by it - says to just build up slowly.
The other 2 had side effects for me.
Then I made a mistake that I urge you to be very cautious about: nerve block injections. We did a series of 3; and while the first may have helped (it wasn't clear) -the last 2 series made my pain much worse!
Please be cautious before you consider injections. I got mine when I got referred to a major Pain Management Center here in a major city.
With many others now, I am on board w. some narcotic meds, and they do give me relief.
On quite a few days, Lidocaine patches on the skin do seem to add a tiny bit of relief. Maybe it's just psychological, but I'll take it!
They are known as Lidoderm patches, and you can use up to 2 or 3 per alternate 12 hours (ask your doctor though). The patches don't get to the deeper source of the pain, but they do help it.
Sometimes just a little help gets you living again, you know?
Make sure your doctor knows you need help NOW. I've been there.... hold on to hope that you will find the solution that gives relief and gets you living again.
Much sympathy.
Warm wishes for feeling better soon. Posts: 1066 | From East Coast | Registered: Dec 2000
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posted
I've taken five drugs for this, four of which were helpful.
Neurontin did not help at all, and I took it at high doses for a long time. Since these GABA drugs usually act slowly, it might have had a gradual effect. However, when I stopped it cold turkey, nothing happened. Some people can't metabolize it properly, I may well be one of them.
Gabitril was prescribed to help control myoclonus. I discovered that it was also helping to curb nerve pain. I see a really good pain specialist and he reports it is helpful to many patients with neuropathy. You want to start in low doses. It can prevent seizure-activity, but it can also, in some patients, cause it, particularly if the dose is started too high or raised to abruptly.
Valium was also prescribed for myoclonus, and worked wonders on the neuropathy in my feet, which nothing else on this list ever suppressed. I got that effect at very low doses, taken a few days a week.
Levorphanol is a synthetic morphine that is less sedating. It also has a mild inhibitory effect on NMDA receptors which plain morphine does not. It was far more effective for both nerve and tissue pain than MS Contin, in my case. It can lower the seizure threshold, and because it is synthetic tiny doses are equivalent to much larger doses of morphine.
Yes, that last one in particular is a heavy duty drug. I was in heavy duty pain. I don't think ANY treatment for Lyme could have helped me without addressing it. Not only did the pain prevent me from sleeping, it inverted my cortisol rhythym - the pain was worse at night, and my cortisol shot up then, suppressing my immune system, straining my adrenals, and making it even harder to sleep.
Supplements that may help:
Vitamin D has reduced pain for me and several other patients I know. My levels were grossly deficient.
Magnesium is a big player here, but so too are antioxidants (in a wide range of disorders that cause neuropathy, it is oxidative stress that does the worst damage). Green tea extract seems particularly helpful to me, as does N-acetyl-cysteine, a key precursor for glutathione and a very powerful antioxidant in itself.
I've recently added two things which I think may be providing additional help, but it's too early to be sure: acetyl-L-carnitine and resveratrol.
Rest. Your heart can supply your nerves with better circulation when you're lying flat, no longer has to fight gravity, so if you get the impulse to lie down, listen to it as much as possible. On the other hand, depending on the type and location, lying down for too long can make neuopathies worse, in my experience.
Attentiveness to the body (hard to summon, sometimes, if your pain is severe) pays big dividends.
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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The Photon Stimulator is not the Photon Genie. I'm not experienced with the Genie. I can tell you that the Photon Stimulator uses infrared light to bring about healing. It reduces inflammation, increases circulation and brings about relief, sometimes permanent.
If interested, I would encourage you to search on the net for more info. Maybe you can even contact the manufacturer for practioners in your area who can show you how to use it.
It's very very easy to use but you do want to start slowly to make sure it works for you. I've never had any problems with it, but I have heard it makes some folks herx.
Posts: 925 | From California | Registered: Sep 2004
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WildCondor
Unregistered
posted
Neurontin and magnesium shots.
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posted
I have small-fiber neuropathy in legs, which is extremely painful, on top of the parasthesias (in my case stinging, crawly, itchy, buzzing, ticklish, snapping) in bottom of feet, upper arms, and esp. lips, chin and nose. All of this developed suddenly when a severe stress in my life set off my semi-dormant (untreated) Lyme. I was never offered a painkiller of any kind, not even the lidocaine patches, when I asked for help (my doctors said to take ibuprofen). Someone in my family found a tub of blue menthol gel for $1 and this was immesaurably helpful with the pain (the pain felt as if my legs had the skin peeled off and then salt sprinkled in the wounds). Finally the 2nd neurologist I went to put me on Neurontin and it was miraculous. I am at 2100mg/day and do have drunkish side effects (esp. with one particular generic which I can't take) now and then. I take 25mg amitryptilline to supplement this. I don't take magnesium because I understand it interferes with the Neurontin.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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quote:Originally posted by WildCondor: Neurontin and magnesium shots.
Hey Joe....those mag shots could work....and what about flexeril?? Have you tried that? It's a muscle relaxer, but may work since the muscles tighten up in response to the irritated nerves.
If I don't take flexeril, I end up with worse sciatic nerve pain.
--------------- Dolphin....thanks for the info. Sounds very interesting.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Some of the best results I got for my nerve pain/issues was to have several sessions of cranio-sacral therapy.
However, there are different levels of skill in the modality, and I found a difference in having someone really skilled and practiced in cranio-sacral was the way to go for me.
Cranio-sacral along with myofascial release also helped my neuro-lyme symptoms, in fact they all but disappeared after these sessions.
Cheers,
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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