Trileptal has been very helpful for my nerve pain, and, unlike Gabapentin or Lyrica, I've had no side effects from it (word loss, poor cognition/balance, sleepiness). One does have to have their liver enzymes checked closely at first to make sure it's not causing a rise in liver enzymes, which it did not in me.
Another helpful drug is low-dose, slow release Dexedrine, which helps with being able to put the pain on the mental "back burner", to move it from the front of the mind, to the back of the mind. In other words, it helps a great deal with concentration.
Calico
I think that all medications for chronic pain have a place in pain management for neuropathy or any chronic pain condition.
We are somewhat limited in what is available to treat chronic pain but opioids are still number one as far as effectiveness and are safe when taken as directed.
Of course caution needs to be used with all opioid medications however I don't see any of them being more dangerous than the others including methadone.
They can be very helpful for those that suffer from these types of pain but in my opinion should mainly be prescribed by board certified pain management specialists that have the training and knowledge to be able to give you what is best for you and your particular situation.
Close monitoring is necessary and always adhere strictly to what is prescribed and how it is prescribed and let your physician know of any problems you might experience.
Addiction using opioids with chronic pain patients tends to be quite low and most are very good about taking them as prescribed.
I agree that the more types of medications you can use (different classes of medications) is probably the best way of managing chronic pain rather than relying on one particular medication.
Most concerning to me are some of the anti-epileptic medications such as gabapentin that are used to treat nerve pain and some of the psychotropic medications also used. They can cause side effects that are absolutely terrible in some patients and I think they should be used with extreme caution. Within the past few days FDA has placed stringent warnings on most of the anti-epileptic type of medications as well as some other psychotropic medications, some of the possible side effects can be dangerous.
I personally stay with pain medications that are very well known and are "tried and true" as much as possible. All medications for pain have side effects and work differently with each person, it does not seem like two people are alike with regard to this.
Wishing everyone as much of a pain free day as possible and I hope you find your own answers for your chronic pain soon.
Randy.
I suffer from nerve damage in my head from a craniotomy I had 5 years ago to remove a brain tumor. Literally one side of my head can be on fire, or have all of the above mentioned pains/sensations at any given time. I'm extremely sensitive to the shifting of barometric pressure, also. I've tried everything mentioned in the article, but over time the side effects were too much for me so I've stopped all the antidepressants, etc. I agree with the comments on Methadone, btw - very heavy drug without much return (for me at least). What is working the most for me right now is Fentanyl lozenges. I use those with long acting roxicet that I take in the morning, and for break through pain. I also do accupuncture once or twice a month. I'm tired of the pain, and look forward to better solutions but for now, I'm glad to have this. Nothing actually gets rid of the pain, but this seems to take the edge off.
Hi,
I go by Ouchy, I live with a constantly high level of pain that has been intenseified by 4 surgical attempts to heal my spine. I have used all of the opiate family of narcotics, with all most the same complaint for all of them. They did not stop the pain, they just made me not care about the pain that I lived with. So if I were to have a bad cut I would look at it, and think gee maybe I should take care of that. I know that when my body regesters at a 7 on the pain scale I will shed tears with no control. Today I use Gabapentin for my pain relief like nothing I've ever had since the injury became really bad. I now have a part of life where I can exist at a 3 which for me is tollerable. When I wake from the nightly induced slumber the very first thing that I feel is bone pain in my spine. There is no escape for me so far. All that I can do is to get used to it (this is medical advise I was given?!). I have found that human beings can, if given enough time, get used to almost anything. That is where I live for now, and physically doing less with every passing day in my attempt to "get used to it". This may not sound so good to most of us, however for a large portion of us this is life as we live it.
Doctors have no means to quantify, or to specificaly locate Pain. If they can may I be the first to test the verasity of their ideas. I do know where my pain site is located in my spine, however I feel it in the lower 1/2 of my body as my own brain senses and trys to locate the pain on its own map of me. After 4 failed attempts to fix the problem I have a very good knowlege of the problems surrounding the lower spine, and the Insulating Mylin sheath, and the Dura holding the spinal fluid in place. This helps me when I look at my feet as my brain says they are on fire. I can touch them and see they are not burned I can pinch the skin and see that the blood fills in quickly after I release the pinch. There is hair still on my toes indicating good blood flow in the region. Yet I cannot get the pain generated in my spine at L4-5 to stop. I cannot use any device that would leave my skin open as I am succeptable to Staph infections with the scars to prove it. I am now unwilling to let any other person cut on me ever again there is nothing to gain from any surgical effort for me any longer. For a construction worker and estimator that enjoyed the job this is a major intrusion into the living of life. I am fortunate to have a good wife and it is for her sake that I continue to exist in a state of flux waiting for the promise of stem cells to stop the raging pain I live with. Come on Stem Cell Research help us Please.
I was misdiagnosed and had both feet operated on at the same time and now I have severe nerve damage to both feet, I am not diabetic and I do not have neuropathy, I have the same pain as people with neuropathy but worse due to the misdiagnose I have been on Lyrica and now gabapentin, cymbalta, 600mg ms contin day, I have been on the ms contin for a year and it stoped working at 8 months, before this I was on 150mcg fentanyl patches, for a year, for some reason these Dr's keep me on the same meds for one year at a time, I do not understand why they do not listen, I think partly because the pain clinics I go to are for people with spine and back injurys, we have no neuro pain clinics, I feel we need neuro pain clinics because they are more aware of the pain we are feeling, I have been involved with the American pain care and they send info on different acts that are trying to be passed for people living in chronic pain, the best drug I have been put on is called Namenda, it stops opid addiction, I met a Dr from N.Y.C. who put me on this and I can function just like I used to before the surgery, this drug is used for Alzimers, but works great for opid addiction, my pain meds used to work for the pain and I would not feel all the lightheadness from the opids, does anyone know or have info on stem cell? is this something that can cure nerve pain, I have been so bad that I want my feet removed, I am tired of taking all these meds that just stop working, I do not understand why the Dr's do not alternate the meds, your body gets use to it and it just does not work anymore, on top of this I am on meds for menopause and I just found out I have hypothyroidism so I am on meds for this, I can no longer take the cymbalta because it does not mix with the thyroid med, I do not want to take that metadone drug it scares the hell out of me, to many people have died from this, plus with all my other conditions, I just will not do it, I am going to yet another pain clinic at the end of may because my PCP no longer wants to treat me for the nerve damage, I think she is afraid to give me anything else because of the thyroid, my life has been hell because of the misdiagnose, my god I had foot pain and I will never understand why the surgeon told me I had tarsal tunnel, he never sent me for an EMG, plus I did not have nerve pain just regular foot pain, I know the difference now, I was asked if I had any previous surgery and I said yes partial Hysterectomy in 1993, well guess what folks, the reason I had foot pain was because I was in menopause, not one Dr even my PCP asked me if I had any symptoms of meno, if they did I would of said yes, it just did never click on me, when I looked up menopause it was right there, it can cause foeatsot pain kot/cold sweats, so unreal that my own PCP cleared me for surgery and my PCP did my papsmears once a year, something so easy as a blood test would of fixed all this, but you trust what is being told to you, what a lesson I have learned, I would love to know if anyone has any info on what I can do and if anyone knows anything about stem cell and how we can find out if it would be helpful for nerve damage. Kindly, Janice Power
I really do have tarsal tunnel syndrome and fibromyalgia. No one will do surgery. I wear only one shoe, a New Balance one. On bad days I wrap a lidocaine patch beneath the left foot. I once found some relief on the opposite side of the foot from a cortisone injection for several months (was not as painful), but the neuropathy I have in various parts of my body, does not go away and is worse at varying times, especially in the knees. Never found anyting for that.
Have you tried acupuncture, acupresure, strain, counterstrain, LILT (low level lasar treatments) anodynia treatments, reflexology? None have helped me as I am hypersensitive....but may help you.
My husband has had nerve pain several yrs now we did not know until recently he was a diabetic. The drs. have him on a capsule twice daily can be taken three times daily. He has been taking it for 3 yrs now does not seem to have any side effects and can be mixed with the other medications. It is reasonably priced also. The name of the medication is
NEUROTIN
Hope this helps in some small way Good Luck
I'm taking "Lyrica" and it works well. But it makes you gain weight. Retains water...
Just thought I'd mention it.
Jordan
To fight the fluid retention that comes with lyrica, you might try lymphedema massage. Worked great for me and I do a version of it at home. Research is going on using low dose naltrexone for the relief of pain. I am going to try and look into that; however, you cannot use opioids with it. As for the nemenda, too new, too off label for even me. I am also going to look into other meds mentioned here, using them at low doses, to see if I can reduce my lyrica, at 600mg and not enough. I have fibro and diabetes; I have no idea from whence came the constant burning on all of my body except my backside. Ah, one more thing, people are using benfotiamine to repair nerves; but be warned it may worsen the pain as it works. Opioids can help with that. Ouchy, I would describe my daily pain at about a 7, especially when the knees are bad, but without lyrica it can go up to 102, no kidding. Helen
I also suffer from chronic nerve pain in my right arm all the way down into my fingers. I had surgery to release the ulnar nerve but it was too late by the time they did the surgery so now I am stuck with the pain. I also had surgery on the median nerve in the wrist but that also didn't help since that nerve pain was actually coming from my neck. I have tried all of the anti-convulsants but I can not tollerate the side effects. Opiates really don't help that much either. The only medication that I have found that works is soma. I have even tried other muscle relaxers but they just don't seem to work like the soma. I wish it was made know nationwide that not only does soma help with muscle strain and pain but also with nerve pain.
Sincerely, Jennifer
I have had great response with methadone in controling my nerve pain. Taking 50 to
60mg a day Break threw MSIR or oxycodone 45mg a day. But I started taking zanaflex
for leg cramps. I have a nerostimulator running pulse width from 8.00 to 10.5 and ra te
35 to 55. Over the last year my pain management Dr has been pushing me to get off
Methadone. A gradually switch to morphine sulfate was the plan. We were getting
close to total switch over when one of the Nurse Practicener thought I should switch
to fentyl patches I had been on them before 75mcg every other days. She told me
that I must start on 25mcg every three days. I put up with the pain for 5 or 6 days almost went to emergercy room pain level was 10. I have since been switched to
morphine sulfate it is working so so but doc thought methadone to dangerous.
I have peripheral neuropathy and fibromyalgia. All these so-called "wonder drugs" I am either allergic to or ineffective. I take about 60mg hydrocodone daily just to function, and the functionality is lessening. I was thinking (after doing extensive research) about trying the fentanyl patch (fewer pills if any, only change every 3 days, etc) and that sounds beneficial. I have a friend who gets the patch plus Lortab for breakthrough pain and it has changed his life. Tomorrow I will speak with my MD. I am reticent even though I do NOT abuse meds, just take as directed and minimally, so no problem there. How do I go about mentioning this to my MD?
hi - i just found this forum and wanted to know if you have gotten any relief from the patches. i have been wondering about those myself. i have small fiber ideopathic neuropathy and i have had it for about 14 years. i jsut woke up one day in my early 30's with weird symptoms and that was the end to normalcy in my life. the drs. never found out a cause, but i have it in my feet, hands, legs, arms, basically anywhere there are smallfiberous nerves. i have gotten releif for quite a few years from a combo of neurontin, celexa, and klonopin...lately, it seems as though things are flaring up really bad...i lost myhhisbnad nad father in one year and i think the stress has made it worse, plus i am in my lates 40's now and hormone changes have always been hard on this condition for me...and the weather...go figure...every season change, i suffer a setback...i heard ms patients can be affecgted by the weather...wierd. also, alpha lipoic acid seems to help too... any thoughts ? i am thinking of getting my pcp to change celexa to cymbalta and neurontin to lyrica...maybe time to change meds... i have been on some of these for over ten years ! thanks for listening...don't give up to everyone...i have bad days, but i know there are things out there to help us... we just need to uncover them and what works for one person doesn't work for another and i also found neuropathy manifests itself so differently in different people so it stands to reason that one drug may help one person, but not another...try to keep smiling - i know that sounds like crap sometimes when you are in severe burning pain...that is the worse...days like that i just want to cry and i do...but, i still try to keep positive no matter what... :-) rm
ok, 1st neurontin (aka gabapentin) makes me sick. I am allergic to Lyrica and ended up in the hospital. Cymbalta has SO many side effects including heart disease, stroke and cancers (NO KIDDING!!! I WAS SHOCKED) that I will not even try it. I have peripheral neuropathy which is inflammation of all the nerves from the spine that primarily serve appendages. Some days I have awakened feeling like my body is on fire. I also have fibromyalgia and the best way I can describe it is that it fees like somebody has beaten my body with a ball-peen hammer. I am on fentanyl 50mcg (microgram) released-per-hour patches, that I change every 48. I also have 10/325 hydrocodone (double strength Vicodin with less tylenol) of which I can take up to 6 per day. Yes, the pain is that bad. I go to a peer support group weekly and believe me, compared to some of the ppl. in the group, my problems and drug intake are much less than others and I have a lot to be grateful for in that regard. I have seen ppl. who take 320mg Oxycontin daily plus 80mg oxycodone (like Percocet w/o the tylenol), Xanax, Ambien and Seroquel to SLEEP! (the last 3). Seroquel I took once and I broke my toe falling out of bed and that was on 150mg. Needless to say I never took it again. If the Neurontin works, I would stick with it. The FDA over the years has reduced the number of years of lab tests before release (it was 17 years at one time, now it is maybe 1 year), thusly they find after deaths and non-reversable injuries, they must pull it off the market (i.e. Vioxx which is an anti-inflammatory). If Celebrex were not so damaging I would be taking it as it is a wonder drug for me, but after reading reports of liver damage in patients, I won't do it. Why do you take Klonopin? It is an anti-anxiety or "mood-changing" drug that is one of the most lethal (in side effects; it will kill your short term memory to the point you may stop mid sentence forgetting what you were going to say next) benzodiazapines out there. I did take it at one time, but switched to Ativan (the LEAST damaging) of all the benzos and take it PRN (as needed occasionally) Same with the Vicodin, so in answer to your question, YES the patch works, but only if I change it every 48 hours, script dose is change every 72, so I had to go "off-script" for that. Fish oil and Omegas are GREAT especially if you have joint pain, (i.e. osteoarthritis). I was a runner for many years and broke my neck at 21 so my body is riddled with it. I also take flax seed oil, garlic, anything homeopathic and PROVEN to be effective. I no longer need anti depressants as exercise eliminated that need. Vitamin D is great in small quantities and the best source is direct sunlight 20 minutes daily. You get a great tan, do NOT damage your skin, and feel wonderful. Hot/cold alternating therapy is good. If you eat well (low carbs, salt, sugar, fat), get 30 minutes of exercise daily brisk walking or biking is good so I am told. Also swimmimg), do not smoke, and maintain your weight, it really helps more than any drug out there in my opinion. I have studied pharmacology extensively over the years and while I am no expert, I do considser myself well-informed and as always CHECK EVERYTHING YOU WANT TO BEGIN WITH YOUR DOCTOR BEFOREHAND. If you are dubious of the dr, get a second opinion.
I read more in depth and maybe you do need an anti depressant. I know how you feel and it's no fun and I myself have been on the merry go round of meds. I just do not trust the FDA when it comes to new meds like Cymbalta and Lyrica. In fact in some studies, Cymbalta can worsen your depression and Lyrica can be habit forming like an opiate (tho I have only had it once and had the severe reaction to it). Alpha lipoic acid is a GREAT anti oxidant and has been used in Europe for decades. It is found in broccoli and spinach as well as other "dark" vegetables, plus yeast (but I would hold off on that being a woman and perhaps going through hormonal changes WHICH in themselves can alter mood, I do not know if the yeast would be harmful or not and I don't even know if could cause infection, ask your ob/gyn or specialist). ALA also helps with nerve pain and poorly-controlled diabetes.It is also not (yet) approved by the FDA. Here is a link:
this will tell you more about ALA.
Obviously the stress of your losses (and God bless you I understand; I lost both my folks and have a daughter that had 3 miscarriages in 2 years) would warrant the need for a mood elevator like Klonopin but there are less damaging benzos out there; even Valium is not as harsh! Oddly enough if you feel like crying, DO IT it is theraputic. I also meditate (I am at the point where I can "zone out" for 2 hours and it feels like 5 minutes) and I also do "hot yoga" (basically simple yoga in a hot room where you REALLY sweat). Your hormonal changes WILL have a lot to do anything. I will wrap this up by saying: do your research before allowing doctors to just "throw" things at you, and if you are finding things that work (and dr approved) keep on doing them. Get plenty of rest, drink water, exercise, staya awa fro caffeine and artificial sweets and real sweets unless fruit, drink 100% juice; no "cocktail" juices, pomegranate and carnberry are best, do not smoke or drink, keep your weight in check...etc. I was tested for MS myself and was negative tho I make it part of my checkup about every 2 years now. ANY natural remedy thya reduces inflammation be it diet, exercis drugs or anything discussed here will help, but as I said always check with your dr. Hope this helps. All my best and good luck, write me anytime,
Michael
thanks so much for your reply - i am thinking of taking yoga - i was just talking about that today and looking into more homeopathic rememdies...i am one of those people who tolerates drugs really well....the klonolin never has bothered me - mabye this toleration is a bad thing..i ahvebeenon it for a long time...i hope to get off of it, as i dont think it is working anymore...best of luck to you...got to go..i will write again soon :-) RM
Thanks for the reply, yes the Klonopin (clonazepam) is not good, but like any other benzo or opiate or such, you must RAMP yourself down gradually reducing daily doses about every 2 weeks, go down 1/2 mg, OR whatever you MD suggests. If you still feel like you need a mood stabilizer, ramp up your exercise and get a few minutes of sun daily (or take a small dose of Vitamin D). If you do need a drug, I suggest Ativan (generic: lorazepam) and it comes in at little as 0.5mg. I do not know your body makeup, but your DR should know what is best for you. Cheers!
Michael
thanks michael for all of your great replies...i may try ativan...i really don't have any side effects with clonazepam that i know of , except bad typing ! i have been on it a long time and it is time to try something new...the celexa doesn't give me any side effects either that i know of...i am stayin on it...as i read the side effects for cymbalta and i decided not to go there...too scary. as i sit here typing, my feet are on icepacks...for some reason, the PN has been very bad the past few weeks...as i said, my husband died a year ago and my dad died 4 months after that - i have three kids to support and take care of and was left with little...and my health insurance stinks since i got off of cobra and got my own plan...they don't cover many drugs...and then, only generics. i started lyrica today and it is helping...as soon as i take it i notice a difference, but i need to take three a day and it is expensive - not ecovered...may use in with the neurontin on an as needed type of thing. thanks for all of your input...it is so great to talk with people who understand this type of pain...it helps so much. i hope you are doing ok and hanging in there - cheers - rosem
thanks for all of your replies...i replied bu something got screwed up and said i was darica - ???? i am still trying the lyrica...didn't work wo well yesterday, but then again i ws working like crazy in the outside of the house...whenever i over do it, it is even worse...i am sure everyone can relate...try and have a good week everyone...rm
Hi - i have been on here before...just in the last few days my nerve pain has gotten worse...not sure why...i ahve had SFN for over 14 years...i started taking lyrica and it seemed to take the edge off, but i seem like i am in a fog all of the time now and i hate it...plus, i stil am burning like crazy. i find the burning pain to be the most unbearable of all of the pain i get from SFN. i am tryi8hng the ALA, eveing primrose oil and supplements...any add'l advise is welcome. i think my hormones are making this act up...it was like in remission for a few years...i am oging thorugh menopause now and i think that is making it do this....thanks and ahve a great day :-) rm
I have had the same problem for 6 years now. It started one day with a visit to my GP with a numbness in my big toe on the left foot. From there it grew and I now have all burning, tingling and chronic foot pain like everyone else. (not as bad as some I can gladly say). Some days are really bad and others are ok. Some days I just want my feet amputated. I have been on some of the meds that you all talk about. Cymbalta is the current one. Side effects are minumal with dry mouth and some dizzyness. My previous doctor wanted an operation done for trasall tunnell but any surgeon I went to said no.
So I got myself a new doctor and he wants to try tramadol slow release.
The strange thing that did happen to me was that in December 2010 I went to Ireland for a family holiday. It was snowy badly and the days were down to -12. I had the best time as all sysmtoms went away except for numbness. I was able to dance, walk for long periods, shop for more that one hour. I shopped a whole day in Belfast one day. I could wear any shoe or boot. It was great. When I came back to Australia all symptoms returned. When I went back to my doctor and we discussed it he was at a loss. Could be the weather? Could be down to less stress ie getting away from work? The only thing different to what I do now is that I was taking 1-2 valium per day while I was away. Those five weeks away gave me a taste of my old normal life and I want it back. Even my family said I was a different person.
Please world all you scientists and doctors out there need to give us sufferring people back our lives. I am 41 years old and tired of the daily struggle when I should be living my life to fullest now by children have grown up.
Michelle
My foot pain in both feet started over a year ago. I am 49 now. The burning, sharp pain etc. was terrible. I thought I had plantar facitious, so I went to a foot doctor after no relief and many days and nights filled with fear and thoughts of not being able to live like this, (walking is diffcult, my mind can't stop thinking about the pain etc, constant burning) I was referred to a neurologist. He started me on neroutin and hydrocondine. The neroutin didn't work,now I am on the cymbalta 90mg getting ready to try the120 mg and still taking the hydroco 3 times a day. The pain level has lesson with the combination of the two meds, but if I don't have the pain killer I am in much more pain. I know I can't take the pain meds forever, but I have many more years to work and I am on my feet most of the day. Thoughts
I have many thoughts about your particular situation. First, I hope the neurologist is trying to find a cause for your nerve pain. One would consider doing nerve tests (electrodiagnositc testing) in this situation. Maybe you have tarsal tunnel syndrome?? My second thought is that Cymbalta and hydrocodone are not my preferred medications for tackling nerve pain. Lyrica, tramadol and Nucynta come to my mind as better alternatives. And my last thought is that your health matters. Anything that you can do to help your nerves heal might help such as less sugar, more vitamins, and Acetyl L Carnitine supplement. No one wants to take medications forever so find out why you have nerve problems and try to do something about it.
Dr. Christina Lasich, MD
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Yes I suffer from Chronic nerve pain from a condition known as RSD/CRPS and ahve taken several medications in the last nine years. I wanted to comment concerning the used of Metadone as I have also been a part of several online support groups and in my opinion though I know Methadone helps some it is a very dangerous medication and shouldn't be used in my opinion for chronic pain period along with some of the other opiates as I have found those in the opiate anti-agonist family to work far better and will less side-effects. Those I speak of are that of bupronorphine, Nubain as well as others in this family. Methadone is so dangerous based on its ability to build up in the blood and when breakthrough opiates are given which is generally the case the risk of respiratory distress is highly possible and not taught to the patients well enough by those who administer the treatment regimen. I mention this due to several deaths as a result of the use of methadone in those I have met online. I regret the loss of these people and think that the use of Methadone for chronic pain needs some serious research and be looked at as only a final option due to the dangers involved.
Sincerely, Jeff