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The Chronic Pain Couch User Group
Dealing with Neuropathy
About This Group:

This is a great site for anyone suffering from Chronic Pain or has a Family member or Friend who suffers. A place where you can tell your story, find others with similar conditions or pain, help someone in need, read up on the latest Chronic Pain treatments or simply sit for a while. Chronic Pain as we all know can be debilitating and relentless. It is not prejudice in any way, shape, or form. It can strike without warning and stay for life. The Chronic Pain Couch is a place designed for your comfort, and please note.. You don't have to suffer from chronic Pain to be a part of this community, we offer a variety of other topics as well. I truly hope that you will come and join us. And remember, there is never a need to worry whether or not your post has been read, a member or myself (Molly) are generally available to read and respond to all posts that come our way...... We are always here for you. Together We CAN Make A Difference in each others lives and how we manage day to day in coping with our relentless pain. Warmest regards, Mollyrae, founder of The Chronic Pain Couch.

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Dealing with Neuropathy

I am in the midst of a bad lupus flare and awaiting a call from my rheumy which I have no confidence will happen due to the change in his office personnel for the worse.

My entire body is driving my nuts.  Feels like bugs crawling, needles poking me, burning sensations, itching and very sensitive.  What have any of you taken to deal with this?
Related Discussions
19 Comments
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655875_tn?1295698707
I'm sorry your having a rough time.  Maybe a good soak in the tub?  When the pain is bad, I try and find anything I can do to get the pain off of my mind.  Since I don't watch much television, I've found that I can watch a show or two and that helps.  I will call friends on the phone and that seems to help the time pass also.  There isn't much I can do physically right now, cleaning the house and sometimes a nice walk are out of the question.  I hope your doctor gets back to you soon.  Good luck.
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767538_tn?1276578920
Trudie,

I'm so sorry you azre having abad flare up with your Lupus and experiencing Neuropathic pain.

What have you taken to help with this in the past?

Nerve pain is VERY difficult to treat in my humble opinion. I have been on Neurontin(Gabapentin) and most recently Lyrica which is also used to help in the treatment of Fibromyalgia.

I've found that neither worked particularly well but Lyrica seemed to be better than Neurontin.

I also suffer from neuropathy in both lower extremities and it can be very debilitating especially in cold weather I find.

Perhaps others will have other meds that can be used in treating this?

I hope you get some relief soon.

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483733_tn?1326802046
I've not been diagnosed yet.  I've had some issues off and on but right now it has been going strong for the last few days.  Saw my GP yesterday and he says my rheumy needs to treat me for it.  Baths don't help much and I take benadryl but it just numbs my mind a bit but can't work with it.  I have a friend with ovarian cancer who mentioned that glutamine powder may help.  I'm goint to pick up some of that and see if it can make a difference.  Trying to keep from gouging or scratching myself!
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1059594_tn?1261327566
Hi Trudie,

   I'm so sorry you're dealing with this, and on top of Lupus is Neuropathic Pain!  That's horrible!   I have neuropathy in my legs, as of now I'm using Neurontin, Lyrica did help more, it just isn't affordable.  

Neuropathic pain is best treated by several different medications!  Usually a Trylic antidepressant, Nerve Med (lyrica, neurontin), A GOOD Vitamin Regiment (Vit B-50 Complex is okay to start with, A Good MultiVit) and an Opiate.  

Let us know what happens?  
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874521_tn?1375890587
hi....I'm sorry for your pain, its such a resistant pain to deal with and so hard to even start to describe to anyone who hasn't experienced it yet..
I've been on gabapentin for a number of years going from 900mg-1800mg in abt 6 years, now they are trying me on 2700mg, but I don't feel any improvement.
I am also on an opiate, that has recently been increased and I can't say I've really felt any improvement for sure there either.
I see a parmacologist among other doctors and he suggested folic acid...and how it works with the opiate receptors..so he's started me on 10mg, that was abt 4 weeks ago, again I feel no difference. but it maybe somewhere for you to start and see if it works for you.
the only thing I can do when the nerve pain gets bad is lay on heat and put some sort of pressure on the nerve feeding the most painful site, for this I have used everything from soup cans to baseballs..
I hope you can find some relief and get some help from your doctor soon
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547368_tn?1332173665
Trudie,

My heart goes out to you. I do not have neuropathy but I have sciatica pain. My SIJ has gotten so bad that sometimes just a reach can set me into an unbelievable flare of later. So I know pain and how difficult it can be to deal with on a daily basis.

After years of my physician asking me to try diazepam I broke down and agreed to try it two years ago. It is ordered to help the spasms that I develop from the pain and the muscle tension that comes along with the CP. It works. I am very cautious about taking them. I use it maybe twice or three time a month when nothing else will ease the pain, I swallow one. I return to the bathing stool in a hot shower, followed by a recline in my massage chair for 20 minutes all of which I have already tried before I took the diazepam but now usually more effective. After that I put in one of my favorite old movies and curl up on the couch with a heating pad and my afghan and wait! The movie is to distract me.

Opus is correct folic acid can help for some ppl. It's worth a try. I hope you will soon be feeling better.  
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768044_tn?1294227036
Hi,

I think that all of the medications that everyone else here has suggested are good medications for neuropathy. I would add Topamax to the list as well, because it is a good medication to treat neuropathy pain.

As everyone has already mentioned, an opiate too, and although I cannot suggest specific prescriptions, I know that that hydromorphone works well for nerve pain and I personally find that it has a very low side-effect profile.

In the meantime, since all of those medications require a doctors prescription (and since many of the medications take some time to kick in), another type of useful product are cooling gels for nerve pain. An example of a cooling gel for nerve pain is Flexitol Deep Cooling Gel. These sorts of gels can always be bought over the counter without a prescription. They should provide you with some distraction from the pain.

I hope you feel better soon!

- marilee
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483733_tn?1326802046
Thank you so much for the suggestions!  Just hoping the doctors can get their butts moving on investigating.  I will try the gel in the mean time.
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535089_tn?1400677119
OH Trudie...I didn't see this post until now. I'm sorry for the delay in posting. I will keep better eye on the forum.

I have not ever had that type of pain and don't have an answer for you. Do you have nerve medication on hand?

You have most likely figures things out by now. If you don't mind maybe you could share with us what you did for your type of pain.

Please take care Trudie,
Molly
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483733_tn?1326802046
Thanks Molly.  No nerve meds yet.  Rheumy says he needs to see me to diagnose but can't get in until January.  Suggests I go back to GP.  Can't push that for another week as have to travel on business and am so not up to it.  The hectic week I've had put me into an awful lupus flare plus the increasing abdominal wall pain I've just been diagnosed me with are not being kind to me.  
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1092452_tn?1257354109
Hi, I have read about Topamax..... I have burning nerve pain, in my left leg. I had my knee replaced in june... I have had pain ever since.. does Topamax work... any info would be great

         Lybda
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768044_tn?1294227036
Hi cowbuzz,

I'm sorry to hear about your nerve pain. My friend has nerve pain and it can be really debilitating at times, and of course painful. I hope that you find something that can help it!

I don't have neuropathy but I know a few people who do. One of my closest friends has neuropathy and she takes topamax and it is the only medication like that (non-pain killer... I don't know what you'd call that... non-analgesic daily treatment) that works for her.

She tried Gabapentin (Neurontin) and Lyrica (Pregabalin) and absolutely could not take either due to side-effects (although these are amazing medications for other people, I do not like to bad-mouth any medications, what works for one person can be terrible for another person and what is terrible for another person can save another person's life). She actually recently tried to take Lyrica again, as an add on to the Topamax, but still could not stand the side-effects (her condition has deteriorated recently... and people sometimes will reconsider a certain amount of side-effects depending on their level of disability and the amount medication improves their quality of life). She also tried the Tricyclic antidepressants and the SSRIs and had awful side-effects with those as well. They've mentioned trying an SNRI but she is hesitant due to the fact she cannot take SSRIs, although if she needs to add something to her current treatment plan or stop taking topamax, then she probably will try to add an SNRI. She used non-medication treatments too like the cooling nerve gels I suggested to Trudie (still does) and TENS machines. Anyway... the Topamax has no noticeable "daily" side-effects in her situation and greatly improves the quality of her life. Without the Topamax, she would be quite disabled.

One side-effect with Topamax that effects some people is kidney stones. This is a side-effect that effects my friend. She has been hospitalized for kidney stones a few times now. Kidney stones are incredibly painful and something you want to avoid at all costs. The topamax takes away her nerve pain and she would be disabled without. The kidney stones are a known risk that she has chosen to accept, and has chosen to continue accepting, because without the topamax she would be disabled.

Not all people get kidney stones. Most don't. I take Topamax for chronic migraines and I've been on it for a while now. I have had my kidneys ultrasounded after a year of taking Topamax (because I had bad pain, a UTI and was worried) and they are free of kidney stones, and I plan to get urine tests at least yearly to test for kidney infections which often accompany kidney stones. In my case, I would stop the medication if I ever were to get a kidney stone and switch to another preventative. A good measure to prevent kidney stones while on Topamax is to always take the Topamax with a full glass of water and never without water, and also to drink your recommended daily intake of water daily (as per the recommendations set by your government or preferably by your doctor).

As for your question does it work? I think that probably varies from person to person. But for my friend, yes! It works very well. It helps take away the burning pain, as well as the stabbing pain... she describes it like "javelins coming down hard on her feet". It helps to stop that pain too. It helps to take away the "pins and needles" feeling for her as well. Which is sort of funny because at lower doses, for things like chronic migraines and stuff, topamax actually causes "pins and needles" as a side-effect! But, it takes away the "pins and needles" of neuropathy.

Topamax should always be started at a dose of 25mg and then slowly brought up to the desired dose as decided by the prescribing doctor. The doctor should also decide the titrating schedule (how fast it takes to get up to the full dose). I think my friend takes around 150mg or something like that (I could be wrong, I don't pry when it comes to my friends personal health issues), and that dose isn't actually very high as far as topamax can go for some other diseases it is prescribed for, but it is more than I take for my migraines (the recommended dose for migraines should be 100mg). Most side-effects for Topamax are dose dependent (like being tired), so if you achieve pain relief results at a low dose and can stay at a low-dose, you will be less likely to experience side-effects.

I believe that with Topamax there is no specific recommended dose, but patients are supposed to be titrated until they achieve pain relief. In an article called Painful Diabetic Peripheral Neuropathy Relieved with Use of Oral Topiramate by Kline et al., patients were titrated up to 400mg but they were stopped at the highest dose that they could tolerate and so the authors suggested that doctors start at a low dose and titrate patients until they achieved pain relief and then stay at that dose.

Also, it should be noted that Topamax is not a first-line treatment. It did fail to improve nerve pain in a number of large trials, although it has shown improvement in some trials as well as in clinic settings... but, for those who have already tried the first-line treatments, discussing Topamax with your doctor would allow you to get more information on the medication.

- marilee
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874521_tn?1375890587
gosh Marilee you sure have given us neuropathy people alot of info ....thx.

I have been on SSRI's and SNRI's both..with absolutely no relief.
Gabapentin worked well for me for a number of years, but this past year not...even with a high dose increase.
It has been suggested I should try Lyrica.
My question is, I gained a considerable  amount of weight with Gaba, would I now gain even more if I should decide to change?...or because these drugs are of the same makeup I would stabilize???
Also somewhere a TENS was mentioned...my PMP told me those units wouldn't work on neuropathy only on the DDD possibly....
Has anyone had success with a TENS for neuropathy?
thx everyone.....this is sure painful I know and we all need as much info as possible to try different treatments..

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768044_tn?1294227036
Hi opus88,

My friend has stopped using the TENS machine now that her neuropathy is disabling without medication. I don't believe it does much good for her anymore, or maybe it is just painful to put anything on her skin these days? I don't know. Her skin is so sensitive to touch now.

But, I remember that it was her that introduced me to TENS machines to help with MY pain issues because they had helped so much with her pain at one time. She used to use one... gosh... maybe about 10 years ago or more? And it must have provided pain relief back then because I remember she used it a lot back then. It was a distraction from the pain, I think. Her doctor prescribed it to her. I think these days you can get machines without a prescription from a doctor... but I would still get a prescription because then it can sometimes be claimed on health insurance or if not then at least on taxes, and also you know you are getting a safe and working machine that way.

But, to be honest, I cannot remember the last time I saw her use the TENS machine. Then again, her neuropathy is degenerative and things are much worse now then they used to be (although, in some ways also much better too, due to better pain management, better science and better medicine). So maybe for some types of neuropathy the TENS machines are recommended and for some stages of neuropathy the TENS machines work?

TENS machines have shown improvement in animal studies concerning peripheral neuropathy, in helping to reduce the symptom of hyperalgesia (increased sensitivity to pain). Also, in human studies, TENS machines have shown to improve the symptom of hypersensitivity as a result of neuropathic pain, although in one of those studies the TENS machine did not show any improvement in terms of increasing strength lost as a result of the neuropathic pain. Most studies say that high frequency TENS is the key to improvement.

But, there are so many types of neuropathy. If your doctor suggested that TENS wouldn't help with your type of neuropathy... probably not worth the price tag of the TENS unit, those machines are expensive! If you have health insurance and can get completely covered (free) physiotherapy visits, you could experiment by going to physiotherapy to get TENS applied by a physiotherapist. If there was any improvement after a number of visits (7 visits maybes? 10 visits?) then you could revisit the subject of getting a prescription for the TENS machine with your doctor. Of course, you'd want to clear the whole idea with your doctor in the first place and you'd need a referral from your doctor for the physio too, but I don't see why a doctor would object to a short trial of a treatment like this unless they knew it could be harmful for some specific reason (in which case it should be avoided).

- marilee
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874521_tn?1375890587
thx so much for all that info...I think it would sure be worth a try for me especially if insurance will cover part of it..thx
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975514_tn?1325001538
Hello,
Sorry to be popping into this discussion so late in the game. Almost everything has really been said already. I just want to say that I have neuropathy and spinal nerve damage. I have tried Neurontin, Lyrica, and I currently take Topamax for my nerve pain. I also use a tens unit. Lyrica is the most effective medication for neuropathy, but it's expensive and has annoying side effects like bloat, fatigue and weight gain. Neurontin is good too, it's similar to Lyrica, but it's like Lyrica with it's strength cut in half almost.

Topamax is different. For me, it was a more energizing medication than Lyrica or Neurontin. It's really one of the only anti-seizure meds used for pain that is also strong enough to treat tonic clonic or grand mall seizures as they used to be referred as.

In order for it to work on nerve pain, one must be at a higher dose than what is recommended for migraines. I think marileew touched on this, but the average dose is between 150mg and 200mg. And you must increase slowly to allow your body to get used to it. I didn't notice nerve pain relief until I hit 150mg.

I've been on Topamax for over 6 months and haven't experienced any kidney stones, although I have read some people experience this side effect. I was told to limit my protein intake to avoid this?
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1092452_tn?1257354109
Can i take Neurontin 300mg 2x per day, for nurve pain in my knee & leg...I would like to know .
Can I take Topamax & Neurontin together?  I need something to work..

Thank's  Lynda
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591295_tn?1293848852
I have neuropathic pain and some nerve-related issues; damaged when I underwent laproscopic surgery on my stomach. Ended up with excrutiating thoracic back pain. In the last 2 years I've been using lyrica (aka pregabalin, and anticonvulsant). I've found that at the higher doses - 300 mg/dose - after an hour or so I feel the tension in my neck and shoulders reduce substantially, which nothing else has done, as far as I can remember (it has been 11 years or so since the damage). Well, maybe whatever they gave me in an ambulance once, but I don't think that is available on prescription!

My experience with lyrica is a vexed one - it gives reasonably good pain reduction and has the advantage that it isn't an opiate, which removes a lot of the doctor's concerns about DEA, addiction, etc. Some people, which includes me, can suffer some irritating side effects, such as weight gain and a presumably slowed-down metabolism which makes it difficult to keep weight stable. I'll add that I've been thin all of my life and fit too, until lyrica. On the other hand I think I'm finally getting on top of that issue. Another common side effect is very strong sleepiness - I've fallen asleep literally at the keyboard, hand still on the mouse, only to wake up 10-15 minutes later. That is a bit scary; luckily, I don't drive, so I don't have to wonder about that. Having said that, most people don't get the sleepiness as bad if at all. Worth a try for a few months, but make sure both you and the doctor know the rare but dangerous side effects before starting on it. It can take two or three weeks to get over some transient side effects too.

Regards,

OtisDaMan
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874521_tn?1375890587
hi there....please never raise your medication without first talking to your doctor abt it, they are the only ones that know what dose of any medication is right for you.
But I will give you my own experience to speak to your doctor abt. I have never taken topamax and I'm not even sure what it is so again I wouldn't try to take them together unless advised.
I am however taking neurontin and my dose started at 300mg x2 daily than x3 daily, and has increased gradually over the past several years to 900mg x3 daily-2700mg a day....I've had 2 different doctors tell me 2 different things, one says I am now at the maxium dose the other tells me I still can take higher...but I hope that I won't need to.
At 2700mg...I feel slightly more tired than I did before, but I haven't gained any weight.
Truthfully I don't feel anymore relief from the neuropathy than I did at 1800mg and will ask to reduce the dose. I have read Lyrica can treat this pain more effectively but I haven't tried the Lyrica(yet)
good luck to you.
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