Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
For those with nerve pain, what helped you the most?
If you were prescribed something, what was good and bad about it? What were the side effects? It seems most of what can be prescribed for this causes tiredness, which is one of my worst symptoms already.
I know Elavil is sometimes prescribed for nerve pain, but I see it can cause weight gain and tiredness. I don't need more of either of these!
This is a new symptom for me and it is getting worse.
posted
I was on neurontin for a long time then it quit helping and then was put on lyrica after trying the patches ( lidoderm) and a tens unit...lyrica has really helped.
Posts: 25 | From Tennessee | Registered: Aug 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Thank you for your replies everyone. I am glad you have each found something that works.
What side effects do the patches have cottonbrain? Are they for pain relief?
Cap67, what side effects can Lyrica have?
Posts: 4681 | Registered: Oct 2000
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posted
Sammi, I've tried the lidoderm patches too, and I know of no side effects with these. Unfortunately, they did not provide much pain relief for me, though.
Posts: 962 | From Charleston | Registered: Jan 2002
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
My main symptom has been nerve pain. There is really nothing that will take it away completely. Xanax and ibuprofen (believe it or not) have helped more than any other Rx and I have had some brutal nerve pain.
Also suggested by one of my doctors has been Ketamine, made through a compound pharmacy. If used cautiously and correctly it is proving to help nerve pain a lot from what I have been told. I have not tried it.
posted
Lido pain patch did nothing for me, sisterinlaw, and motherinlaw....total waste for us.
I don't advocate Benzodiazepines because of risks, but that said....some report relief with forms of benzodiazipines. Just have to find which one of the many different ones works best for your chemistry, if at all. They definitely do not all function the same!
Benzo.org has great advisory info by Prof Heather Ashton in the UK. Educate yourself,know your risks as benzos (like all RX) has side effects and risks and can be brutal withdrawals after long term use.
Temazepam (benzo) helps me, but is a sleep me and will make you very sleepy.
Some say low dose Klonopin (benzo) helps w/neurotoxin excititoy neuro pain gonna try that next.
Others say Xanax (benzo) helps them.
Benzos are a slippery slope med, but can offer relief for some when nerve pain is unbearable.
Also, the blood pressure drug Clonidine has been shown in studies to help with neuropathic pain. However those with low blood pressure should NOT take it as it lowers blood pressure. It is a drug also used to help taper off opiates so it acts on opiate receptors. Lots of info online on it and some research studies even show it helps with sweats/hot flashes for some.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
lymebytes, what is Ketamine?
sammi, as for side effects with the lidoderm patches -- the only one I know of is bustedwalletitis, LOL -- they are very expensive.
If you do try them, the directions say not to reuse them but I find that i can use them at least twice. they do not provide perfect pain relief but they help me a lot.
the pharmacist told me that hemorrhoid creams may work too, though i haven't tried these.
marylandmom, sorry to hear the patches didn't help you. have you found anything that works?
Posts: 1173 | From USA | Registered: Nov 2007
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posted
what exactly is the nerve pain you are experiencing
i think some sort tumeric, premier research liver detox which has tumeric, premier research inflammacicin i think, they also have a pain relief zeolite you can put on an area for relief,
infrared sauna also magnesium oil you can put on the skin
Posts: 187 | From FL | Registered: Nov 2007
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posted
This has been the sx that has been my worst and changed my life completely. Xanax and Klonopin work WONDERS but like I've said and mentioned before, it has (at least for me) a tolerance level that builds WAY TOO FAST. 1 year ago I was on 2, 1mg Klonopin each day. Now I'm on 2mg, 3x daily....and it's not helping like it should.
Honestly, I have to take more than rxd to get through the day and then go through hell the rest of the month.
I've tried EVERYTHING ELSE and I mean EVERYTHING. Everything mentioned above and then some.
I'm resorting to neck and back surgery to do the forbidden steroid injections on Friday in my back and then my neck....however, I am asking them to switch it because I want my neck done first.
It's hell. Opiates don't even touch it. Especially my neck for some reason.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey my friend!
So sorry to know you are dealing with this most annoying symptom! If you are suspecting Neuropathy, you may want to give the B's a chance? Sublingual B6 and Bcomplex are a good combination for neuropathy issues...and have helped many.
I have also tried neurontin, klonipin, elevil... most of the usual suspects. And most supps too. Some do help to quiet thngs for a time, but none have been long lasting remedies.
Yes, they do make you sleepy, so I always took them at bedtime to try and help with insomnia issues as well.
Feel better! M
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Sammi sorry for the delay in answering you, I am only on once a day at best and sometimes it might be days, depending on the pain my back/hands...anyway you asked about side effects of the lyrica, I have swelling of the hands and feet, usually in the morning but they usually go down as the day goes on...it can make you sleepy but that typically wears off as your body becomes acustom to it. That is really all the side effects I deal with. I have weight issues but I have dealt with that all my life and I have recently lost 65 pounds , sooooo. for any further information you might need on it, here is a link for you
posted
nerve pain is my worst symptom. only one thing helped: rocephin.
Posts: 226 | From earth | Registered: Sep 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
B12 IM and treatment has helped mine.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Melanie Reber:
If you are suspecting Neuropathy, you may want to give the B's a chance?
Sublingual B6 and Bcomplex are a good combination for neuropathy issues...and have helped many.
Melanie suggested B vitamins when I developed numbness/neuropathy in my feet.
I had stopped taking them because they gave me an upset stomach, but I got some others that were sublingual.
I took the first B Complex sublingual on a Friday, and by Saturday my feet were no longer numb.
Later I took sublingual B12.....the deep aching pain in my lower legs improved in about 3-4 hours.
Carol
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Maryland Mom, I am sorry the patches did not help you. Have you found anything that has?
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Lymebytes, I am sorry you have brutal nerve pain. It is very had to tolerate. I hope it gets better with treatment.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
jam338, thank you for your input. It looks like you have really done your research!
So many of the meds for this have horrible side effects. I guess you have to weigh the pros and cons.
I hope the Klonopin gives you relief.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
cottonbrain, I love "bustedwalletitis!!!" This is a side effect of many Lyme treatments!
I am glad the patches are helping you.
I wonder how hemmoroid creams work. Do you apply it to the areas where there is nerve pain?
Posts: 4681 | Registered: Oct 2000
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi laceyj. This symptom started for me a few days after getting a Glutathione push. It is burning pain on several areas of my body. My doctor said it is nerve related.
I will check out your suggestions, thank you!
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Sammi
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posted
Beautiful Disaster, I am very sorry your pain is so intense. It sounds unbearable. I hope you can get relief soon.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi Melanie! How ironic that you suggested B vitamins. When I saw my regular doctor recently and told him about this pain, he suggested trying Metanx. I had used it before but I did not have nerve pain then.
I forgot that he suggested it until you mentioned this, so thank you! I do B12 shots already. I started the Metanx last night, so hopefully it will help.
I am sorry you have this wretched symptom also.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Cap67, wow you have lost 65 pounds?
Thank you for posting the link.
I hope your pain lets up soon.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
steven, I am glad your pain has improved!
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Pinelady, I am glad you have gotten some relief also!
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Carol, it is great that you had such a fast response to the B vitamins!
I started taking Metanx last night, so I hope it will help. I wonder if adding more B vitamins would be overkill.
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posted
Sammi, unfortunately the pain only improved for a while after rocephin - and then came back. in the long run i havent found anything against nerve pain.
Posts: 226 | From earth | Registered: Sep 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Thanks Bugg.
I am glad you found something to help. I do take Vitamin D because my level is low.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
steven, I am sorry you still have this.
Hopefully this will go away with treatment for all of us!
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posted
Sammi, thanks for the kind words!! I am getting some relief but man oh man do my hands/wrists hurt tonight!! throbbing!!! How are you doing hun???I have lost 70 pounds now, hoping to lose more!!! Please take care, my thoughts and prayers are with you all!!
Posts: 25 | From Tennessee | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hot as I could stand epsom soaks and B12 IM helped me in the beginning. As I improved I could crank down the heat and slow down the shots.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
My pain doc prescribed Desipramine for nerve pain and it does help me. The dosage is 25-50 mg 3x day. I also use Lidoderm patches...moderate relief. I cut them up and use them all over my legs.
Neurontin helps somewhat but makes me sleepy so I only use it at night.
Hot baths...as hot as you can stand it...help.
And I live with my heating pad!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
High doese of IM methylcoablim 25 mg/ml 3 days a week and IV glutathione. I had horrible reactions to lyrica, cymbalta, savalla, neurontin.... those medications should be avoided at all costs.
Nerve pain is my worst symptom and I think its caused by toxins, yeast die off, or at least for me it is worsened tremendously by oral antibiotics. I cant take any of them for this reason. If anything else helps me I'll let you know. Hang in there!
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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lymeHerx001
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Member # 6215
posted
I reacted strong to lyrica, cymbalta is stimulating but it does help with pain.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
up, does anyone get burning and cutting type pains?
Posts: 2905 | From New England | Registered: Sep 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
neurontin
before i had it i used skelaxin every 6 hrs during day and oxycodone at night. the oxy gave me about a 2 hr break to sleep.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
kava alone probably won't do the trick. But Kava with many of the other recommendations above will help. Kava Tea by yogi tea company can be found at whole foods or other naturual stores.
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