Welcome to the latest in our series of blogs exploring different aspects of pain and pain management.    We hope that this series of blogs will give you the opportunity to share with other readers some of your experiences with pain in the hope that, by sharing your story, you may be able to help others manage their pain.

It is estimated that around 5% of the population suffer from neuropathic pain.  So what is neuropathic pain?

Simply put neuropathic pain (or neuralgia) can be described as nerve pain.  This occurs when there are problems with the signals sent by the nerves.  The pain itself is different from pain caused by say burns or other injuries.  It has been described as burning or aching sensation.  Sometimes it can be pain which shoots through the body.   “Pins and needles” is also a common description of neuropathic pain.

Neuropathic pain can be cause by a number of medical conditions.  These include multiple sclerosis, cancer, HIV, diabetes and phantom limb pain after an amputation.

One of the issues for people with neuropathic pain is that painkillers are not as effective as a treatment as they are for other kinds of pain.  Treatments can include epilepsy medications and antidepressants.

One of the purposes of this blog, as we have said, is to give people who suffer from neuropathic pain the opportunity to share their stories.  Please feel free to use the comment box below to share any information you think will be of interest to other readers.  However you may find the following questions of use in framing your comments.

• What is your underlying medical condition which causes your neuropathic pain?
• How would you describe your neuropathic pain?
• What treatments have you used for neuropathic pain and how effective were those treatments?
• Is there any advice you would give to somebody suffering from neuropathic pain?

 

You may find our recent blog on pain management of interest.  To read it please click on the link here (https://patienttalk.org/?p=225)

Thanks for your contributions in advance!

Library Liz	I have FM. I have sharp stabbing pains and pins and needles pain in my thighs and sometimes other various parts of the body. I also have very sensitive places on my body. I can barely touch the skin on one of my knuckles and sometimes my shoulders without experiencing pain. It feels like the nerve is overactive. I take 300mg of gabapentin and I find it helps with the stabbing pains and minimizes the skin sensitivity. It took a while for my gabapentin to really kick in but now I notice if I go without it for even a couple of days.
Mike king	My name is mike. I suffer with acute neuropathy pain in both hands and feet, causing me to tears. My wife bless her doesn’t know how to cope with me, as sometimes I’m a bit short but don’t mean to be. I wish it could all go away , but it doesn’t. If I could just go to sleep and not wake up would be good, but I have a lovely wife whom I love with all my heart, which keeps me going. In my mind there is no solution. I really think sometimes others don’t understand. Which is not there fault. I think I don’t understand myself. All I get told is keep taking the medication. LOVE TO ALL THAT SUFFER WITH THIS HORRIBLE DISEASE Mike
RosiLaraLara lara7202@prodigy.net.mx 189.228.128.8	MY SPINE MEDULE IS CONSTANT, NO DIURING FOR 24 HRS. IS DISCAPACITATE BUT DONT FINE WALK ,DONT CHARGE, DONT SEAT DOWN FOR MORE 15 MIN.
Mike king	My name is mike. I suffer with acute neuropathy pain in both hands and feet, causing me to tears. My wife bless her doesn’t know how to cope with me, as sometimes I’m a bit short but don’t mean to be. I wish it could all go away , but it doesn’t. If I could just go to sleep and not wake up would be good, but I have a lovely wife whom I love with all my heart, which keeps me going. In my mind there is no solution. I really think sometimes others don’t understand. Which is not there fault. I think I don’t understand myself. All I get told is keep taking the medication. LOVE TO ALL THAT SUFFER WITH THIS HORRIBLE DISEASE Mike
RosiLaraLara	MY SPINE MEDULE IS CONSTANT, NO DIURING FOR 24 HRS. IS DISCAPACITATE BUT DONT FINE WALK ,DONT CHARGE, DONT SEAT DOWN FOR MORE 15 MIN.
SeptemberMay	I suffer from CRPS / RSD and have been shocked at the lack of resources and education on this debilitating condition, characterized by severe nerve pain. After much research I have uncovered non-medicated options as I passionately believe that sufferers should have options available to them that do not involve a lifetime of spinal injections or IVs. I have met numerous pain educators who point to the brain and nervous system as the source of the problem, rather than the affected limb or body part(s). They believe that understanding pain and the nervous system helps to reduce it, and that brain rehabilitation can open up options we never previously thought possible. I have launched a web site to present their ideas, dedicated to alternative ways of thinking about pain. It is  http://www.painmaps.com/ I welcome submissions, stories and ideas.
RosiLaraLara	THIS ISTHE PROBLEM FOR REMEDIAL PAIN IS SAME A DEATH
SeptemberMay
	Hi I have MS, had been having this terrible pain on side of my head, ear ache but the whole jaw also felt like I had tooth ache and there was pain in my eye. The ear ache was the worst. I tried hot compress, then cold compress they didn’t help. I was popping pain killers like they were lollies, they didn’t help. Then a new Dr suggested it sounded like a MS problem. Why didn’t I think of that ? got on PC and quickly found trigeminal neuralgia. I decided that was problem. Saw my neurologist he agreed and put me on Lyrica, so far the problem has not happened again. I am Gilli Barnard in Hobart Tasmania
Statto	I have a diagnosis of Neurosarcoidosis but I am being reassessed so it may be MS. I also have a nerve compression injury above S1 affecting my left leg. I suffer badly from nerve pain with both my hands and feet most badly affected although I have differing degrees on pain from the chest down. I also have numbness across varying area. The pain affects my sleep and concentration although I have learned not to react to it. I have gotten good at calculating the shortest walking route from A to B and will even avoid walking a couple of feet if I can. The pain never goes, ever. I’ve broken bones, torn muscles and ligaments, had burns and handled it all fine. But this is a whole new level. I don’t mind admitting I sometimes want to scream and it does on occasion bring me to tears. Pain killers take maybe an edge off it. 10% if I’m lucky. I’m on pregablin and Oxy, neither of which they can increase and I occasionally top up with tramadol and/or oramorph. A decent sleep is a distant memory. Two hours is the best I get in one go and sleeping tablets have no effect. Heat helped and I used a hot water bottle. It leaked and I ended up with 2nd degree burns on my thigh as the numbness I had meant I didn’t notice straight away. So I don’t do that any longer. I have recently started CBT which has helped me a bit. It helps me keep my focus away from the pain but it obviously doesn’t affect the underlying issues. A jolly story I guess, that I’ve been living with for 6+ yrs.
persiankiwi	Hi, I had a fall down the  stairs at work in March ( I work in a hospital dispensary) and have severe neck pain ( whiplash) like my head is too heavy for my shoulder’s and tight as though there’s an elastic band in there that requires cutting to get relief, I have pins & needles in my fingers in both hands and a constant grabbing pain under my right shoulder, I have been told by my gp I am sensitive, I have had a mri, ct scan and after seeing four doctors because I couldn’t breath and had really bad pain in my ribs and being told it’s because I am sensitive and it’s in my head, I had fractured my 8th rib. I can not function at work because of the pain and my gp just wants me to increase my hours, physio  just massage’s and has have given me stretching to do but to be honest it just makes it worse, I have tried, amitrip, meloxicam,diazepam and that much codeine you could sink a ship, accupuncture, dry needling, cupping and a tens machine.Heat seems to help but  the relief doesn’t last. If anyone has any idea’splease et me know as I am a my wits end and finding it difficult to function and because you can not see an injury my workmates just do not get it.
Julie Pooley	In reply to TerriBloxomHouse.I have it were it will last as long as a hour! I feel like I would be a great action figure! I could throw fire out of my palm. Have you ever tried are heard neural prolotheray for trigeminal neuralgia? It’s bad enough to have MS, but this nerve pain is not fun!i have it about twice a day. What about you?
Huffysangel	I have MS (DX in 2011)  and degenerative disc disease DX in 2000).  So far what has eased it has been Cymbalta. I really didn’t think it was working so I went off, I was wrong. It was working more than I thought. Without it I am in tears because of the pain. With Cymbalta I still hurt but I can still function. I deal with pain due from my back, headaches, my hips and legs. I don’t believe it all from neuropathic pain but I believe a good bit of it is from my MS (neuropathic pain).  The needles and tingling feeling is more annoying than painful but I usually have difficulty gripping or holding things when my arms and hands have the tingling and numbness feeling. When my legs have the tingling and numbness, my legs tend to give out a time or two. One the other issues is the jerking in my arms and legs. Now my kids have found it a bit funny especially the time I was cooking and my arm jerked, the food went flying. I know it is hard having neuropathic pain. What gets me through is finding my new normal. It is not easy to accept (at least not for me). This is probably the last year I will be making holiday meals. We are going to go smaller. We need to focus on how to make good memories and spent time with family instead of working harder. It took me 2 yeas to accept that and I still have my days I don’t want to accept it. I just got to remember what my new normal is for me.
TerriBloxomHouse	In reply to Julie Pooley.Julie Pooley if you meant trigeminal neuralgia, then yes. I have MS and part of that is trigeminal neuralgia. I was just dealing with it just the other day. I don’t have it all the time but I do get it often enough to remind me of how painful it is! I’m sorry you have to deal with it! I hate the way it pulses. It’s like a light bulb that is about to go out and it starts to flicker on and off for a while before or does. When it starts, it will flicker, or pulse, and it is like for a few seconds then quit and then come back again for a few seconds then quit and so on until it finally stops. That is until the next round! Is yours constant, or does it do like mine does?
Julie Pooley	Does anybody have triennial neuralgia?
TerriBloxomHouse	In reply to BeckyWilliamsSanchez.Has anyone ever suggested a pain pump? I’m getting ready to have surgery on the 23rd of December to have mine put in. I’m a little scared, but I’m more anxious than anything. Ready for it to be over with and hopefully out of pain! I have MS and I have severe nerve pain from the damage that the MS has done to my nerves and axons! My legs are slowly going numb from my toes up and it has gotten to the point that my arms are getting bad also. They are going numb from the fingertips up and it scares me to death! I don’t want to become dependant on other people to do everything for me! I’ve always been so independent every since I was a child! I’ve always done everything for myself! I’m losing my independence slowly and it’s killing me inside! On the outside, well, anyway you might want to talk with your doctor about it and see what they say! Do your own research on it though and make your decision, based on your research and if you are not getting the response that you want from your Dr, stand up and fight for it! Don’t let your doctors bully you! Remember, they work for you! Not the other way around! I hope this helps, good luck and God bless!
Julie Pooley	In reply to TerriBloxomHouse.I have it were it will last as long as a hour! I feel like I would be a great action figure! I could throw fire out of my palm. Have you ever tried are heard neural prolotheray for trigeminal neuralgia? It’s bad enough to have MS, but this nerve pain is not fun!i have it about twice a day. What about you?
Huffysangel	I have MS (DX in 2011)  and degenerative disc disease DX in 2000).  So far what has eased it has been Cymbalta. I really didn’t think it was working so I went off, I was wrong. It was working more than I thought. Without it I am in tears because of the pain. With Cymbalta I still hurt but I can still function. I deal with pain due from my back, headaches, my hips and legs. I don’t believe it all from neuropathic pain but I believe a good bit of it is from my MS (neuropathic pain).  The needles and tingling feeling is more annoying than painful but I usually have difficulty gripping or holding things when my arms and hands have the tingling and numbness feeling. When my legs have the tingling and numbness, my legs tend to give out a time or two. One the other issues is the jerking in my arms and legs. Now my kids have found it a bit funny especially the time I was cooking and my arm jerked, the food went flying. I know it is hard having neuropathic pain. What gets me through is finding my new normal. It is not easy to accept (at least not for me). This is probably the last year I will be making holiday meals. We are going to go smaller. We need to focus on how to make good memories and spent time with family instead of working harder. It took me 2 yeas to accept that and I still have my days I don’t want to accept it. I just got to remember what my new normal is for me.
TerriBloxomHouse	In reply to Julie Pooley.Julie Pooley if you meant trigeminal neuralgia, then yes. I have MS and part of that is trigeminal neuralgia. I was just dealing with it just the other day. I don’t have it all the time but I do get it often enough to remind me of how painful it is! I’m sorry you have to deal with it! I hate the way it pulses. It’s like a light bulb that is about to go out and it starts to flicker on and off for a while before or does. When it starts, it will flicker, or pulse, and it is like for a few seconds then quit and then come back again for a few seconds then quit and so on until it finally stops. That is until the next round! Is yours constant, or does it do like mine does?
Julie Pooley	Does anybody have triennial neuralgia?
	In reply to BeckyWilliamsSanchez.Has anyone ever suggested a pain pump? I’m getting ready to have surgery on the 23rd of December to have mine put in. I’m a little scared, but I’m more anxious than anything. Ready for it to be over with and hopefully out of pain! I have MS and I have severe nerve pain from the damage that the MS has done to my nerves and axons! My legs are slowly going numb from my toes up and it has gotten to the point that my arms are getting bad also. They are going numb from the fingertips up and it scares me to death! I don’t want to become dependant on other people to do everything for me! I’ve always been so independent every since I was a child! I’ve always done everything for myself! I’m losing my independence slowly and it’s killing me inside! On the outside, well, anyway you might want to talk with your doctor about it and see what they say! Do your own research on it though and make your decision, based on your research and if you are not getting the response that you want from your Dr, stand up and fight for it! Don’t let your doctors bully you! Remember, they work for you! Not the other way around! I hope this helps, good luck and God bless!
BeckyWilliamsSanchez	I have Diabetic Neuropathy in my feet.  They sometimes sting, ache, pains shoot through them and sometimes the pain is so bad that I can’t walk.  I am on Neurontin 200mg three times a day.  I was on 400 mg. 3 times a day until the Kidney specialist said that it was destroying my kidneys so he cut the dosage in half and increased my Norco pain meds to 7.5/325 mg. 3 times a day.  That puts me to sleep until time for next medications. I have CHF and COPD so my dr. said that I’m in such bad health that they can’t do anything but try to keep me comfortable. I have a liaison on my sciatic nerve so that  hurts all the time and with the Neuropathy I’m in constant pain.  I feel so bad having my husband do everything for me it makes me mad when I try to do something for myself and the pain gets so bad that I have to rush to get back to my recliner which also serves as my bed. I’m sorry that I can’t offer anyone a solution for the pain.
usafrnped	underlying med cond: MS describe my neuro pain: burning cold, if that makes any sense. in my ankles to my toes. bilaterally. nothing makes it better once it starts except a warm shower, which lasts as long as it takes to dry off and get under the bed covers. tx: cymbalta & lyrica. if it gets really aggravating, Tylenol ES or #3. i also use ropinirole at night for restless limb syndrome. may also help with the neuropathy. advice: talk to your neurologist that specializes in MS, if that is your underlying med cond. neuropathy is different for different diseases, so make sure to consult with the appropriate MD specialist.
HappyHomemaker	In reply to HappyHomemaker.TerriBloxomHouse Thank you.  It does get tiresome being in pain all the time.  After more years than I care to count of this, I’m just done with it all.  I have a lot of immune problems, I just don’t know how many more diagnosis’ I can handle.  (Feel free to add me to your facebook if you want.  I go by this name there as well.
TerriBloxomHouse	In reply to HappyHomemaker.Hi, I’m getting ready to get my pain pump done. I just did the trial for it. The pain pump is actually the least addictive routes to take. I’m surprised they said that. I’m so afraid of becoming addicted to the pain medicine and when I went to the pain management Dr and told him this he actually recommended this route to me. He said this way it’s taken out of my hands and put into the hands of the Dr’s hands instead. I have MS and I have severe nerve pain in my legs and arms from the nerve damage done from years of MS. I was dx’d with MS in 1997 at the age of 27 and I’m 43 now. I’m starting out with just 1 mg of morphine, which is much less than what you would take if you were taking it by mouth. I’m sorry you’re in soooooo much pain. I certainly understand and wouldn’t wish pain like what I go through upon anyone! I hope you are able to get the relief that you’re looking for soon! Good luck and God bless! If you need someone to talk to, please don’t hesitate to contact me back, as I understand how hard it is to find someone who understands what we’re going through everyday!
HappyHomemaker 7	In reply to waynehoover.waynehoover I did find a TENS unit over the counter, but it made my restless legs worse, so I was forced to return it.  Still searching for relief.  I know in the past, one doctor recommended a morphine pump, but they didn’t want to go that route because it’s “addictive”.  Ahh, but pain is sooo much better!  *Sarcasm*  Oh well….
RosiLaraLara	In reply to rvz21.rvz21 ES MUY CIERTO,RVZ,A MI TAMBIEN CON EL TIEMPO LA NEUROPATIA ME HA VENIDO CRECIENOD ASI COMO LA FALTA DE VISION SE ME HA INCREMENTADO,,,ANTES LA ACUPUNTURA ME AYUDABA ALGO,PERO ME AYUDABA,,AHORA TARDO UNA SEMANA EN REPONERME DE LA SESION,,,QUIZA EL TE DE HOJA DE LAUDO,,SIRVA DE ALGO
rvz21	Nerve pain.  Sometimes, it seems, that the only response I get from damaged nerves is pain.  It’s like they’ve grasped onto something they can respond to.  So, it ends up being pain.  Even in areas where I have limited sensation, like my feet.  I still feel heat, prickling, stabbing pain at times.
2005DX	I get shooting pains under my Big Toe-nails, at times..sometimes the bottoms of my feet burn. Yesterday & this morning i had an ache in the bone on my right forearm. Before i was dx, in 2003 & 2004 i had aching pains in both my lower legs.. My Primary didn’t know what it was so he put me on strong antibiotics,,lost a week of eork each time.
Joyce Pharis	Amitriptyline, Lyrica and Diazepam help me a lot!  I’ve tried to eliminate or cut dosages but can’t.  As long as I do well on side effects I’m taking them!  I do have blurry vision issues with Lyrica but clears by mid-day.
Jeweliey316	I have MS. I have the neuropathy that feels like pins and needles, cold, burning, and the zinging. I’ve found that Amitryptaline works wonders! I have been on it for quite some time now and it helps with the headaches that I was getting as well. Advice I would give is to learn to sort of meditate, breath deep and cleanse your mind. I’ve found that mind over matter can help in some cases. Also, the Amitryptaline is awesome for this as well.
waynehoover	In reply to MaryAnneMcDermott.I have had costrocondritis for many years. This was attributed by my docs to be the result of fibromyalgia. I have had all the other symptoms associated with fibro.
waynehoover	In reply to HappyHomemaker.Sounds like my medical history I have an internal dorsal column stimulator, with moderate relief.
HappyHomemaker	In reply to care27.care27 I have a benign tumor that causes very severe migraines 3-4 times a day along with frequent narcolepsy and insomnia (go figure having both??).
HappyHomemaker	I have neuropathy from a surgery I had almost 25 years ago.  I now have fibromyalgia along with other chronic conditions.  My neuropathy presents as burning, stinging pain.  I’m on some moderate pain medications, heat, creams, and I still suffer greatly.  I’m looking to buy a TENS unit at a local store to see if that will ease some of the pain.  Advice I’d give someone with neuropathy?  Don’t get it, but obviously that would be too late for someone with it.
HeatherAtherton	I have FM/CFS/IBS/Hypothyroid and who knows what else LOL! I have completely given up on meds except for my Synthroid. The rest I am trying to manage with diet and exercise as I am able. I am def not feeling any worse than when on meds (including an anti-d) and emotionally probably better. I have even tried MMJ, but like almost all other drugs, I had way too many side effects and reacted exactly opposite to what I was “supposed” to! I describe my pain as like a “fiber optic Christmas tree”, only ugly! AND painful! The pain radiates and travels throughout my body like the fiber optic lights on the tree. I don’t really have any advice, b/c every person is SO different! But just don’t give up; keep trying different things, and don’t just go by what another person’s results were.
RosiLaraLara	In reply to carebear70.carebear70 YO TENGO LOS MISMOS SINTOMAS,,PERO A MI DE LADO DERECHO,,,LOS ESPASMOS SON REGULARES PERO BIENEN CON CLALMBRES,,,Y TE MENCIONA A MI ME SIRVIO DURANTE 10 AÑOS LA ACUPUNTURA CON HIPERTERMIA,,,,PERO AHORA,,CREO Q DEBO DESCANSAR UN TIEMPO PARA Q SE DESACOSTUMBRE MI CUERPO Y SI AUN NO LLEGA NADA Q AYUDE,,RETOMARE LA ACUPUNTURA.  SALUDOS TENGO 48AÑOS Y SOY MEXICANA
RosiLaraLara	In reply to care27.care27 ESO ES CARE77,,ASI SE LLEVA LA ENFERMEDAD, DE RESISTENTES Y GUERREROS,,,,,BENDIONES
RosiLaraLara	SOY MEXICANA DE 48 AÑOS CON ESCLEROSIS MULT. RR DESDE HACE 12 AÑOS,,MIS DOLORES SON DE TODO EL DIA Y TODOS LOS DIAS DESDE Q AMANEZCO HASTA Q ME DUERMO, POR 2 TUMORES Q TENGO AUN EN MI CEREBRO TOMO ANTICONVULSIVOS Y NI ASI SE ME QUITAN MIS DOLORES,,SON COMO SI FUERAN GOLPES  MUY FUERTES Y DESPUES UNA SERIE DE ALFILERES EN TODO MI CUERPO, Q HASTA RESPIRAR DUELE,,AUN PRINCIPIO ME RESULTABA LA ACUPUNTURA CON HIPERTERMIA COMO TEREPIA Y ASI FUE,,PERO CREO Q AHORA NECESITO ALGO MAS,,,Y ESE ALGO MAS AUN NO LLEGA,,,ESO SIN HABLAR DE CUENDO ME COMIENZA UN BROTE,,,AHI SI LOS TOQUES ELECTRICOS Q SIENTO EN TODA LA COLUMNA DESDE MI MEDULA ESPINAL, HASTA LA FAMOSA SILLA TURCA,,BUENO NI MOVER LO JOS ME DEJA,,,SOLO ME MEDIO CON ALGO DE TE DE ARNICA,PORQ NINGUN ESTEROIDE NI CORTIZONA,ME HACEN
bonnieghirl	Diagnosed with MS in 2006. The first symptom I noticed was in 2005 when I had tingling in left hand and left side of face. This went away after six weeks leaving me with only a sensation on my left top lip when I was stressed or feeling under the weather. 2011 bad relapse left me with nerve pain in my lower arms, hands and the inside of left foot. I was given amatripyline first, then gabapentin then pregabilin (lyrica) then added amatripyline 50mg to the 300mg (twice a day) lyrica. Not sure if it actually works as I suffer with the pain in my right hand constantly and is made even worse if I use it at all. It burns too and I find relief holding something very cold and completely smooth, such as a soft drinks can.
care27	I don’t suffer from nerve pain. I suffer from annuerysm pain daily in the brain. It’s very bad some days, other days I can manage. It can hit me like a ton of bricks suddenly, without warning.  It can bring me to my knees.  There isn’t anyway to manage it by a Pain Specialist. But, it has taught me to enjoy every living momentthat I have.
spiritdancer2u	Lynn, okay, this darn site is annoying me! 🙂 I was saying make sure you get a really good attorney and ask around. Mine, heck, I did the work and seriously they billed me for it in 15 minutes increments! I left one really nasty message and told them, since my phone,will show when I called and how long, and I will testify against you, because we did all the work and if you think you can bill me for it, good luck with that! Interestly enough I never heard from them again!!! 🙂 Blessings,my dear, keep courage and strength close to your heart with those rough moments. I often would use meditation as my escape going to my favorite places in nauter. Try and see if you can calm your body enough, even on the okay days and practice it. It isn’t a cure, but a way to take your mind and spirit to another place!
spiritdancer2u	Hi Lynn, If you are having these issues, have you filed for total disability or did it already? I don’t know,where you are at, U S. or Canada. But I would suggest you file, it is a pain in the arse to do, I did it,after my third backsurgwry is when they “decided” okay we will only pay you however for like 18 months, and much of the,work I
lynnhanson	i was told i have Neuropathy last year on top of my MS . i have times where the pain in my back and legs become unbareable that all i can do is sit and cry . then the spams start and than i can’t walk . i have not found anything but major pain killers
carebear70	I have also tried the Tens device with all the settings. Also purchased a traction table. A traction device you hang from a door .  Icy hot sprays and over the counter pain patches.  ICE.  Ice just freezes you to death and numbs it for a minute.  Same thing with icy hot sprays and hot/cold patches.
carebear70	I have MS and degenerative discs disease.  I have tried a lot of things, from physical therapy, different injections Botox, Epideral, Trigger Point. I have taken several non narcotic meds, muscle relaxers, anti-inflammatory and prescribed pain patch. I have had the medial branch block then radio frequency ablation.  two things I haven’t done yet are message therapy, acupuncture.  I get this grabbing feeling in my neck and shoulder or an shooting pain, burning and achy feeling and numbness down my arm left side.  pain level from 1 to 10 is about a 5 and comes as goes when I move around a certain way.  Radio frequency helped with neck pain but not the nerve pain on left side of neck and shoulder or arm. Trigger points help some to just get by for a minute.  MS can cause these symptoms too. The numbness and pain.  So now I was told I just have to deal with the pain and to try acupuncture and message therapy. So that is my next things to try.  and go from there.   Hope this may help others maybe one of those may help someone else.
lynn33	I have MS and have suffered with nerve pain for years.  I am taking several meds including narcotics, anti-depressants and weekly injection for preventive care.  The pain is constant but flairs up as if a knife was jabbing me in left side of skull and left shoulder blade. Sensitivity all over torso and often feel itchy and like ants are crawling all over me.  Good times!
TerriBloxomHouse	In reply to BThacke.I’m sorry to hear that. I truly understand where you’re coming from, as I’ve been there myself. I’ve been on disability since 2004 but I’ve only had the VA since 2007 since I didn’t know that I was eligible for VA disability until 06 and then I had to apply for it, and wait for it to be approved, so on and so forth. I was discharged from the military in 93 and dx’d with MS in 1997 but because I didn’t know that the military had the MS clause that if you were dx’d with MS within seven years of being discharged from the military that you could get benefits, I never applied for my benefits until 06. well, I hope you get everything you need to your disability approved! It’s not an easy row to hoe for sure! I was lucky to have a great neurologist and a knowledgeable lawyer who when I was denied the first time for my disability immediately requested reconsideration instead of just filing an appeal and I was approved for my disability and I got my first check by June 1st of the year. Good luck with your disability, and God bless!
CandyGood	In reply to BThacke.TerriBloxomHouse Once again wish I had that option,single and now out of job since last Dec. due to symptms. I’ve applied for SSD, denied twice, now have lawyer and waiting to go to court. My PC dr. with VA filled out form for my lawyer, stated that I could work maybe less than 1/3 of an 8 hr day. No standing, sitting, lifting over 10lbs, bending, twisting, etc.,etc., driving. I live in a rural area, I have no way to get to a job if I even had one. I have severe problem with lightheaded spells, migraines 3-4x a week, tingling and numbness in hands and feet, When I get out of shower I have what feels like electric shock and burning sensations that run all over my body from arms down to my calves up to my back down to my thighs, it travels all over then just stops. I have weakness on my right side, I have blurred vision somedays it’s double vision. I constantly fight with fatigue, and they now say I have sleep apnea, haha, what else can they say is wrong, oh vit B def. iron def. they’re grabbing at straws. I also have several other syptoms just can’t remember at the moment, due to I forget things every now and then.
spiritdancer2u 1	In reply to BThacke.I don’t have M.S., I actually had three back surgeries and of course, all better as far as the “really good” doctor here. I injured my back in the Navy, I requested my medical records and I got my entrance to the military, and the exit off active duty in 1981. I think they were ready to make a decision on my back, but I sent them my exit, and the doctor states, “she had a back injury carrying a stretcher down the stairs on January 1981, she feels pain now as she is 3 1/2 months pregnant. Okay, older now, and suffered with pain but moms just keep going and live with pain. 3 children, constantly had pain down my left leg, told arthritis and Fibromyalgia. I have a friend who can tell them, I constantly carried a pillow to sit on for my leg, hip pain. So, now they have “new evidence.” I also have PTSD from an assault from a drunk guy who then stalked me and I was all of 18. After his Captain’s Mast he was demoted from E-5 to E-3, fined and pissed! So, after that happy news he stated he would kill the B, that would be me. I had MP’s come to my ward, I was medical and asked if I had a place to get out of town, my roommate and slept on the pediatric floor, then left for her parents house. Came back, get asked if I want to get out of the navy. Then lucky me, new barracks room, and you wouldn’t believe it if I told you. But, one of the barracks guys decided to “take advantage of me if you catch my drift, they asked for some kind of proof, well I requested to terminate my shore duty and had the eval to provide it. So, lot’s more than just a back issue. I am not a Texan, and my friend in California which is my state, says the V.A. is really good there. Here? my god, I make zero money yet my husband makes too much. I was told my E.R. visit would not cost me, and was greeted by a woman who was the biggest biatch I have ever met! Seriously, I am a Veteran, I have my DD214 and I am allowed to be there, all she could say you will have to pay. my god, what if I had a gun? So, we shall see with my ratings what will happen. I am seeing that fibromyalgia and incidents that I have gone through are related, which I find interesting. my fibromyalgia is at the point that I will have the fog moments that lasts a week, then have have no memory of what I have done or read fir school. Thanks for your advice. Me? I just have a full plate, but I want answers. when I went to the VA to turn in more paperwork, the woman said to me, “did you asks for counseling?” seriously lady, this is 1979 and 1980, like they should offer it to an 18 year old don’t you think??? No Faith. I was told my case is being expedited. whatever that means. Because I called, and had some guy screaming at me and would not let me ask a question!!! ARGH! good luck!
TerriBloxomHouse	In reply to BThacke.I’m so sorry, I thought you were saying that you were in VA, and not talking about the VA, lol. Well, I can help you in that case as well. I am a vet myself and I will tell you that I only use the VA for medication and some people don’t have other options, but as I have medicare also, I go outside of the VA for most of my medical needs. The only thing I use the VA for is dental as the dental insurance offered by medicare only pays 30% so I have no choice but to use the dental clinic. I wouldn’t trust my neurological care to the VA if I had other options. If you have medicare, or another insurance, I would highly recommend you go to a neurologist who is an MS specialist. I know they have a few really good ones there in Texas that I have heard about in passing through different MS groups online. I don’t know any specific names, but I’m sure they aren’t hard to find either. I have to be seen by the neuro at the VA at the end of the month as a matter of fact and the only reason I am doing this is because I have some medications that my neurologist just prescribed me and in order for the VA to give them to me is to take my office notes into them and they then in turn will put the request in for those medications. It’s quite a hassle to do but in order to get the meds free this is what I must do. I hope this helps you out. Good luck and God bless
dianej	Hi  I have fibromyalgia and rheumatoid arthritis.  My nerve pain started in my shins and lower arms and now its all over my limbs. It feels like pins and needle and its so uncomfortable.   I am taking gabapentin(900 mg) and find its not helping at all, but i just started it and im  sure my dr will adjust the dosage. I really cannot offer advice, except to move.  i find that when im a little active  it helps.
CandyGood	In reply to BThacke.TerriBloxomHouse Thks for the info, however I am located in Texas. Would be hard for me to go there. I just would like for the drs at the VA here to listen to what I have to say and try a different approach, I’ve been battling this for 18 months now with nothing but blank stares from the neurologists and pc drs. Like they have no clue….
TerriBloxomHouse	In reply to BThacke.CandyGood, I was dx’d with MS in 1997 by a great neurologist who is an MS specialist in Virginia Beach and he has a wonderful MS clinic there! They are so in tune with their patients and are very knowledgeable about MS. The Dr’s name is Dr. Marcus Rice in Virginia Beach/Norfork.
CandyGood	In reply to BThacke.BThacke CandyGood I was diagnosed with probable ms when I was 19yrs old, symptoms cleared up after about 6-8 months with help of steroids, off and on had symptoms over the years, didn’t connect it with ms, too naive to disease, anyway over the past year and a half I’ve been having major symptoms, 19 in all, VA drs are treating each symptom independent of the others, and I’m not getting any better, suffering with small fiber neuropathy in my feet and hands now. Thinking probably a good idea to go to dr. outside VA., to get to the root of the problem
BThacke	In reply to CandyGood.CandyGood BThacke   I was still on active duty in the Navy when I finally received my diagnosis at Bethesda National Naval Hospital.  The Dr who finally gave me the diagnosis was the head Neurologist for the Navy.  When I retired in 1997 I transitioned over to the VA.  I have few complaints with the care I receive.  My only problem has been with them not doing any surgery there.   I had a hernia that I had to have done outside of them and will have my prostate cancer taken care of with a civilian also.  Other wise all my care for that would be done at the VA in Richmond, much to far.
spiritdancer2u	it depends how long they will help. Also what activities I can or cannot do. My biggest problem is my leg, and I take 2700mg of gabapentin three times a day. That is for my right leg that is damaged from three back surgeries. The shots are expensive, and they go into the muscles that is cramped up. They do not help for the leg issue, and the upper back it seems to be certain muscles that get like a,hard rock and hurt. I believe it is because of my shoulder being damaged and the area over compensates when I lift say like a gallon of water and carry it around. I haven’t had any since my granddaughter was born and my daughter went through a serious condition afterwards. She, my little one weighed about six pounds.. Andfor two weeks I carried her around and sure enough those mmuscles bunched up and they feel like rocks in my back. I really can’t hold things for a long time with the left side, and I am left handed. My ulna nerve got crushed and I didn’t know it until five years later when I was wall papering a bathroom and the arm just dropped. So, I am limited! I filed a claim with the military on my back because of carrying a,guy down three stories I injured my back, they put me on bedrest, but it continued to give me issues, and it was the left side and leg that it affected. So, who knows. They called today and the one guy wouldn’t answer my question, then I feel back to sleep because of a migraine, and someone else called to talk to me. Who knows what is going on at this point!
CandyGood	In reply to BThacke.BThacke was it the VA that gave ou the dx of MS, or did you have to go toa dr. outside VA?
BThacke	I have suffered with terrible and intense nerve pain in my left chest since I was active duty, aboard ship, in the Navy back in the early 80’s.  I was pretty much diagnosed with everything in the book as I bounced around to almost every military Dr on the East Coast.  This included several trips to the shrinks to get a psych profiling, (if they couldn’t figure it out it must be in my head).  I still worked hard, stayed at sea, supervising the operation of the ships nuclear power plants, for several more years.  I am glad that I had earned such a good reputation that kept me on board, even with the frequent missed shifts.   Then I went to a shore billet and they finally gave me a provisional diagnosis of Chronic Progressive MS.   I started having severe migraines which just added to the pain load that I maintained. I started going to the pain clinic when they first started it up at the local military hospital.  They would give me various types of pain blocks in the area above my waist.  The type of block that seemed to do the most good was an intraplural nerve block.  They would crunch a large needle into my chest wall through the back left chest wall.  Then they would thread a catheter into the region between the chest wall and lung, then filled the area with anethesia.  It would numb my whole left side and calmed down the pain considerably.   I had these done every three or four weeks for several years.  I had many Drs trained on this procedure using my body as the guinea pig.  At least the Dr’s at the pain clinic believed me about the level and amount I was in.   They were almost as relieved as I was when my Neurologist at Bethesda finally diagnosed me with MS. I currently have a normal pain level of about a 7.  If I try to do too much the pain is crippling for several days.  I do take different narcotic pain killers on a daily basis, they help to make it more tolerable.  a couple of years ago my wife had a moderate case of shingles and was given Lyrica to control the pain.  I asked our family Dr about it and decided to give it a try.  After a couple of days on the Lyrica I woke up with almost no pain.  I felt normal for the first time in more than 30 years.  It was great.  Three days after that I had a major TIA, and was rushed to the hospital.  At first they thought it was a stroke and they had about twenty people working on me.  I remember seeing them all, but I could talk or anything.  I spent the next couple of days in the hospital being tested and getting detoxed off the Lyrica.   I try to just ignore the pain as much as possible and just take it day to day.  I also have to deal with the day to day c of my other MS challenges,  it is a hand full for sure.  I have also just been diagnosed with Prostate Cancer.  Another reason to make more Dr appointments.  Life goes on.
CandyGood	In reply to Loubiz76.Loubiz76 fancycakes I take 75mg amtryptilin at night and 900mg Gabapentin aday, I still have the numbness and the tingling, burning sensations, especially right after I get out of the shower, almost to the point, scared to shower anymore, it moves from one place on my body to another, neuro had a look of surprise on her face whe n I told her, immediately said she was ordering a test ( vascular ultrasound) don’t ask me why. You can see my skin moving it’s weird.
AnyiaO	In reply to wendy gardner.wendy gardner spiritdancer2u I have MS and my pain is the left side of my spine and neck mainly but could be my whole upper back on bad days.  I am curious about this treatment?
Flowergirlgush	Hi I had ME with severe nerve pain to my shins and feet, hands and fingers. Acupuncture helped greatly and also heat treatments and massage.
wendy gardner	In reply to spiritdancer2u.spiritdancer2u How long did they help you for? Where did you get them- your scalenes? Have you ever looked into getting your scalenes removed?
spiritdancer2u	Although trigger point injections gives some relief, they aren’t a permanent solution and often extremely painful. In one doctors visit, I had a total of five and could have used more, but a body can only handle so much. It seems I have to take more care with the right side of my upper back. ARGH! Wish we had a better solutions
wendy gardner	I have been getting painful electric shocks in my left wrist and left side of chest. I finally may have found the answer after 8 years– trigger point injections to my scalenes.
andievatt	In reply to Hfire76.Hfire76 Read my first reply about the Calmare treatments I had done.  4 years of living in pain with the burning, stabbing, swelling, deep ache, pins and needles and numbness……..tried everything and nothing worked.  The 10 treatments (10 days) at the Calmare Clinic changed my life around.  WORTH TRYING!!!!!  The 1st treatment is FREE.
andievatt	In reply to lorapugh34.lorapugh34 Calmare treatments!  Two words that could change your life around as it did mine.  Read my 1st reply above in which I tell my story (long story-made into a short version).  I can’t spread the word fast enough about Calmare~it’s a new technology and not heard of by most.  FDA approved.  In 15 military bases treating our soldiers with neuropathy.  good luck to you~ Andi
andievatt	In reply to TerriBloxomHouse.TerriBloxomHouse read my reply above……..I have tried all the meds and different methods of trying to get relief from my RSD/neuropathy caused my TOS surgery in 09.  Nothing worked until recently my friend and husband talked me into trying Calmare treatments (the first treatment is FREE and then I went ahead and did the 10 day treatment plan because the 1st one took my nerve pain completely away)~ I’m so glad I did.  It has changed my life completely around.  I can’t spread the word enough because I want everyone to know about it~Calmare is a new technology, FDA approved, some insurance companies pay for it and they are trying to get it approved by Medicaid (it will be in the near future).  Good luck!
andievatt	In reply to MRITECH.MRITECH I had appointments at the Cleveland Clinic this month to see a RSD specialist and talk/do Ketamine infusions, (I also have RSD in my right hand, arm, shoulder, scapula and upper chest), but a friend told me about Calmare treatments she had for her RSD.  I researched it and saw that it had helped a lot of people with different types of neuropathy.  I thought it was a hoax and looked like a big TENS unit, but my husband urged me to try it (First treatment is FREE and it will usually tell if it is going to work for you), so we made the 5 hr drive to Chicago at the Spero Pain Clinic in Riverwoods and guess what…………….15 minutes into my 1st treatment my nerve pain vanished!  I cried in disbelief and didn’t realize how much pain I had been in until it was completely gone………no narcotic, anti-seizure med, blocks, etc etc etc had ever made the burning pain completely leave!  So I stayed for all 10 Calmare treatments and am home now for a week and still no nerve pain.  After 4 yrs of living with this it has been my salvation and blessing.  They tell you that the nerve pain will probably return (not a cure, a treatment, as you know there is NO cure for RSD), and that I’d have to come back the rest of my life for “booster” treatments (like 1 or 3 each time).  But as I type this tonight still in disbelief that my right hand can type without me wincing, I feel more relaxed knowing that even if I have a flare in my near future I can go back and get it taken care of.  They told me everyone is different, some people have to come back for a booster in 1 month, but others it may be 6 mo or 1 yr.  There are clinics on the east and west coast but the one I went to is the first one in the mid-west.  New technology, FDA approved, tricks the brain by scrambling the pain messages to the brain in which the brain pain center now thinks there is no pain, (easiest way to explain how it works).  WORTH A TRY!  I am living proof!  My family has said “you look better, happier, and sound like the old Andi now.”  I am still suppose to baby the arm, don’t overdo and just build up my strength slowly.  I would highly recommend to anyone with neuropathy (diabetic neuropathy, shingles, cancer/chemo neuropathy and so forth).  Good luck!
spiritdancer2u	hi all. my pain began after a second back surgery, a spinal fusion that failed. I ended up with another back surgery, but being hopeful that I wouldn’t be permanent. Now ocer the years my pain has worsened from my toes all the wat up to my right buttock. it’s not just the pain, but the intensity of the muscle spasms that go with it. And YES, it does wake me up cursing and screaming a few other words. I am on gabapentin 900 mg 3 times a day, a non narcotic muscle relaxer, clonidune for the pain experienced. I also takee hydrocodone for failed back syndrome, arthritis in my spine ( ild injury in the military, and it was always the left leg that gave me problms.). Oh, let me not forget the fibromyalgia I have as well! The gabapentin works usually after the second dose, so truthfully it feels like my own personal hell! Especially no ow that Texas will not allow my doctor who has known me for years can no longer do my pain management. I don’t abuse my meds, probably over careful, but having no health insurance in a state that has a high uninsured rate, I have no idea how I will pay for it. I had gone to six of these called specialists and the last one had me on methadone low. I took it a week, very low dose, but didn’t like the effects of it, hence my doctor taking over my care. I shoyld mention, the methadone I still went through horrible withdrawls! So, he suggested his paing mgmt that comes in on Wednesday and she will need all the past doctors name. Seriously? That is over ten years ago! Okay, thime to listen to Dr. Gupta, he has reversed his thoughts on cannabis! Amazingly enough scientists set out to disprove the theort that it was all B.S., now come out and say quite the oppositw! If I have to “pick my poison, I would choose the homeopathic approach, a
DebbyStiles	Wash my hair or raise my arms without pain and both hands going numb. I also get a lot of numbness in both legs along with random burning pains that feel like someone just held the lit end of a cigarette t my legs
DebbyStiles	I have fibromyalgia, myofascial pain syndrome, 4 herniated cervical discs impinging on my spine and other nerves, 2 bulging low back discs, lumbar lordosis causing pelvic enthosapathy and coccygenia, scoliosis of mid back and osteoarthritis of my spine causing osteophytes to impinge on nerves and carpal tunnel. I need surgery on my neck but in my case there is some danger and I am afraid. Nerve pain is the absolute worst pain there is. I couldnt remove the plastic cover of a fountain drink with my hand and sleep with braces on both hands everynight or I wake up with my wrjists and fingers all curled up and unable to use. Last year my neck flared up real bad. I went to ER but even morphine injections didnt help nor lidoderm patches. I laid in bed for two weeks waiting for a special injection just crying myself to sleep and crying when i woke up. The pain was so bad i was vomiting daily. Finally I got an Interlaminer Injection done at C7-T1 under anesthesia and it helped a lot with the pain however my neck still aches, shoulders and shoulder blades really hurt and my arms are so weak now. I cant have long phone coversations, sash my hair
mylittlewonders	In reply to MRITECH.I have MS and was diagnosed in 2001.  Neuropathy in back of legs started 2 years ago.  The pain mgmt clinic tried ketamine injections and they worked temporarily, which proved to them that it was in fact nerve pain.  I’m on Lyrica (an anti-seizure med) and on opiates- the only other analgesic that helps with nerve pain; anti inflammatories don’t work.  It can be incapacitating at times and it burns and/or aches.  I get in pain cycles that last for days with little relief, even with meds.  I think the cycles are related to the muscles being tense because of the pain.
MRITECH	I shattered my left lower leg over 8 years ago, resulting in RSD in that leg. It is a permanent nerve condition that can spread to the entire body. I have it in my left leg and left arm now. It causes extreme swelling, increase and decrease in body temperature in the affected area.  It area changes colors from red to purple and 24/7 pain. The pain can be stabbing, pins and needles to a feeling of a knife cutting into the area. To many sensations to explain. I have been on medicines from A to Z with very little relief. They are now looking into Ketamine injections, has anyone ever had these and do they work?
deemillward2	Ive had nerve pain in my head for two n half yrs. 24/7 electric shocks and stabbing in the top of my head. Its got worse if course and hurts ino my face, jaw n neck. The pain makes me twitch n scream. Im on a cocktail of drugs, have had injections into my head. They’ve tried to burn the nerve to kill it and TENS directly to the nerve. Nothing. Docs are thinking of fitting a permanent device into my head now. I dont have any social life now. I also have fibro and slipped discs. I live in the UK.
ChelleBirdUpshall	In reply to IzzyW.IzzyW I know exactly how you feel.. I am nearly over cold turkey from fentanyl it does take over your life… horrid medication 🙁
IzzyW	Hi everyone! I  had constant neuralgia pain for many years before it was diagnosed as neuropathic pain. It started as left sided trigemminal neural 21 years ago but eventually afftected both sides of my face, both eyes, and my glosopharengeal nerve as well. My facial nerve and vagus nerve are also affected. I spent serveral years suicidal with pain.I have tried most (if not all) of the medications that other pain sufferers have posted here. It wasn’t until I found a new pain specialist who was willing to start the diagnosis and treatment process all over from the beginning that my pain began to go away. I now have PAIN FREE DAYS. I admit that it was a terrifying process but it was so worth it. I had to stop taking Lyrica, Fentanyl (150 patch every other day), amytriptiline, carbamazepine, and lorazepam. It was pretty awful. Thhese were replaced by IVIg treatmens, and injections of sensorcaine (kind of like novacaine) directly into the nerves. Now all I take regularly is low dose topiramate and I take benadryl PRN for pain. I still have IVIg 4 times a year. I have a special diet that includes NO grains at all, lots of fish, lots of berries, walnuts, high potasium foods, avacados, and baby greens. My doc  also has me take supplements of B12, vitamin D, Potassium, folic acid and fish oil. When I was on Fentanyl and carbamazepine I was a near death zombie. Now I have a life.
spiritdancer2u	sorry all for my spelling errors, I should also mention I have fibromyalgia as well as arthritis. I have had surgery on my left ulna nerve and have some damage there as well, my writing always depends on what day of the week it is, if it ends in a “Y” yup, problems! I try to keep a positive outlook, but I do have my days where I break down and cry. I can no longer enjoy the out door activities I loved, and heat with humidity does make my body worse.
spiritdancer2u	I started having pain in my right leg after a “severely failed” spinal fusion. It was the second back surgery, and they said it would go away. Well, a year later, a third back surger, at first, it felt like it was gone. But, slowly it creopt back in and has made my life a nightmare since. I’ve seen at least six different pain management doctors, all with different ideas but none with concrete evidence they would work. Finally, my regular doctor put me on gabapentin, an anti-seizure medication, and I take 900 mg three times a day, which equals 2700mg a day and is the max limit. I feel it all, stabbing, burning, pins and needles, cramping and some days the pain will radiate from my toes to the inside of my right vaginal wall. Yes, men, close your eyes on that one. It is worse in the morning, but also if I feel the weather changing, it also worsens with that. Social Security brought in a neurologist who never examined me, but was allowed to weigh in his thoughts, as I was disabled for 7 years, but got paid for two only. And since theu felt I was still employable and young, it was not a permanent condition. Well, it hasn’t left me yet and getting worse as I age. Living in Texas, no health insurance, means I pay out of pocket for all my care. So far, I keep looking for studies, treatments, but find none in my area, unless you have a job ( I don’t) and health insurance. I have to often lay in bed longer in themmorning’s till the medication starts to kick in. Now, it is sometimes taking till the second dose for that to happen. Blessings to all who suffer, you are not alone!
TerriBloxomHouse	What is your underlying medical condition which causes your neuropathic pain? I have MS, dx’d in 1997. I was 27. How would you describe your neuropathic pain? I have severe nerve damage to my legs and arms, which causes severe pins and needles which feel more like a really strong buzzing in my entire body. It started as just an aching feeling, but has progressed to an intolerable pain. What treatments have you used for neuropathic pain and how effective were those treatments? I have been on neurontin, tramodol, percocet, lyrica and the Fentanyl patch for the nerve pain, and I also take baclofen and tizanidine for the spasticity. The baclofen and the tizanidine seem to help with the spasticity, but none of the pain medicine help with the nerve pain all the time. I do get some relief from the Fentanyl patch, but you wear it for 3 days, and the first day it’s building up in your system, and the third day it’s a downward spiral, then you start all over again. Even if you wear two patches at a time alternately rotating them, you still have the times in in between where you just don’t get enough pain relief. I am getting ready to have a pain pump put in, but I don’t know when yet. I’m hopeful that this is going to provide some relief soon! Is there any advice you would give to somebody suffering from neuropathic pain? My advice is to talk to your neurologist about it, don’t try to suffer through it alone. See a pain management Dr to access your pain, and discuss your concerns and options for your pain relief. I hope this helps, good luck and God bless
IzzyW	In reply to lorapugh34.lorapugh34 That sounds like an auto immune disease called raynaud’s. You might want to see your rheumatologist about those symptoms.. if it is raynaud’s verapamil will help. it may also help your fibro symptoms as recent research indicates that fibro may be related to the vasculature of the hands.
angie1	i have had MS for a number of years now and have had nerve pain all the way through my doctor got me onto Gabapentin along with tizanadine i also get procaine infushions every 6 month (of which i know i am lucky to get these as a lot of doctors have stopped using it ) these work for me even if infushion only works for around 3 month. Please go and see your doctor to try out meds there is something  out there that will help you . Sorry for spelling mistakes
JeanneCarroll	In reply to fancycakes.fancycakes  for my TN, they gave me Tegretol…It worked great…Maybe you could try that? I have had MS since September 2012 so only 10 months.
MelissaDunn	I was diagnosed in 2002 with MS and unless having a relapse, had been lucky to be free from nerve pain up until a couple of months ago when I started having head pain that I described to my neurologist as “brain freeze”.  Very painful and interferes in such was as not being able to think well sometimes and is exhausting.  My doctor put me on Gabapentin and although have had to adjust the dosage x3 (normal for these kinds of drugs), it has worked wonders for me!  I hope those suffering from this for whatever reason, can find peace and healing.  I strongly recommend talking to your neurologist as mine had told me when we talked about the new pain, there are several meds that can be tried if needed so to be patient but so far, I was lucky and have found relief with the first one tried.
myth1977	I have FM and chronic migraines. There is an aspect of nerve pain with the FM and I am on Lyrica and do get moderate benefits from it. I do have peripheral neuropathy and the cause of that is really under debate… it could be idiopathic… it could be I had a stroke due to the status migraine I had at the time the neuropathy developed and it could be the nerve damage was caused by the status migraine itself without a stroke. I’m not sure if the Lyrica helps with it, if so I really don’t want to know what it would be like without the Lyrica to be honest. I have typical symptoms I suspect. There was damage to mobility, some fingers don’t work well, so damage to dexterity. There is extreme temperature sensitivity. I have problems with tactile sensations… the numb glovelike feeling means can’t really feel the texture of things. The sensation I do have is a sharp prickling pain so I can press down and feel a prickle of pain to know I am pressing down. And at times I get very intense burning pain that is insane and radiates upward as well… no idea how to treat that sort of pain to be honest as I am aware the treatment is such things as Lyrica. I am increasing my dosage of Lyrica due to issues with FM pain and maybe that will help. I’m not entirely sure what to do with pain and decreased mobility like this in the hands to be honest… took some time to get used to picking up things and not dropping them because I was not putting the right pressure on them and to get used to writing again, but can’t write for long because it causes a great deal of pain. So I use devises to open things for me. I type more than write. I have had no specific treatment for this problem… but since already on a treatment one would use sort of a two for one, it has not seemed to make any difference given I developed it while on the medication but possible an increase will help.
JDReed	In reply to Loubiz76.Loubiz76 fancycakes The plain Neurontin does nothing for me. I am currently taking 1800mg of Gralise. It’s an ER version of the Gabapentin (Neurontin). I take (3) 600mg with evening meal and sleep pretty good. It definitely helps with the neuro pain in my back. It felt like my spine was swollen the size of a watermelon, but if I take the Gralise, it just hurts. Just a suggestion…..
MaryAnneMcDermott	My neuropathic pain is a result of having costochondritis for an extremely long period of time. Costochondritis is an inflammation of the joints which link the breast bone to the ribs, they are tiny joints made up of cartilage that move every time you breathe in and out. So every time I breath it hurts, even more if I take a large breath, sneeze, cough, laugh, ect. Pressure on this area is horrible – wearing a bra can be impossible at times. Just lying down on my back at the end of the day can bring tears to my eyes. It feels like someone is stabbing my with an icepick in 8 specific points in my chest. It can hurt so bad that I start to shake and I can barely breath. I’ve tried a whole list of anti-inflammatory medication., some are no longer even on the market any more. I have been dealing with this since I was 19 years old in 1999. I have been unable to work since Dec. 2002. Drugs that I have tried include: Gabapentin, tegratol, morphine, oxycontin, lyrica, celexa, effexor, cymbalta, ect. What currently works for me is: Duragesic Patch (Fentanyl patch) which provides 72 hours of pain medication, topamax(I take it to reduce migraines), hydromorphone or tramadol & Wellbutrin (For depression). I’m also on a bunch of other medications as well.
MaryBilly	I’ve been diagnosed with MS. Since 2005. I not only am Numb from time to time but it affects my balance and speaking. Temps over 75 make me violently ill and fatigued. I started having back pain about 4 years ago. 2 years ago I got pains In my shoulder started having pain.which ended up giving me renal failure. Lucky for me I survived and my kidneys have healed. But I still have back pain. Cymbals doesn’t help me at all. Physical therapy has not helped at all either. I have severe migraines which i take norco for. i have multiple lesions in my brain and close to my brain stem. depression meds dont help me cuz i have a lesion where my mood control is. Can anyone give me suggestions to discuss with my go or neurologist about. I will appreciate any help you can give.
NurSuZ	In reply to Loubiz76.Make sure they start you on a low dose of neurontin. I started a mid range dose of 300 mg once a day at dinner..I was zonke the next day. They lowered me to 100 at dinner and with the Ultram ER & Vicodin plus mirapex for restless legs, I’m fine. Bin
Loubiz76	In reply to fancycakes.fancycakes The burning in my in my feet and legs is overwhelming now and part of my leg goes numb now after the burning starts.  I will ask about my doctor about  Neurontin and amitriptyline.  Have you had any side effects from the medication?
lorapugh34	In reply to Hfire76.Hfire76  I have a lot of  the same symptoms you have.
lorapugh34	Can diabetes cause sudden temp drop and hands to turn blue? it happens mostly at night. temp drops to 95, my test have been good. Do have diabetes, fibro , hyper active nervous system
Meg0422	I have Rheumatoid Arthritis and high blood pressure.  I think my problem stems from inflammation, because when Humira was working for me, the buzzing and burning sensations in my limbs went away.  The Humira isn’t working anymore and I’ve since started Gabapentin.  The Gabapentin works but doesn’t take the sensation away completely or every time.  It does help though.
Hfire76	What is your underlying medical condition which causes your neuropathic pain? I am what my medical doctor calls a mix breed diabetic though I tend to dislike that term. I am T1 have been since I was young always will be, however my body has built a resistance to insulin which is a symptom of T2. So I live on a pump using U500 insulin, not the normal U100 nope this is 5x stronger than normal insulin. Oh and recently well two years ago now but in my life that is recent, I have seizure disorder which also really loves the central nervous system. How would you describe your neuropathic pain? To be honest it depends on the day. Some days I am numb and I have been cut and never even knew it so I tend to shy from the kitchen when I know I am numb. Other days I feel like a furnace as I think the inside of my skin has set fire to itself wanting to make me shish kajohn lol sorry I joke it helps. Then the bad days (yes there is worse than the above description), these days I am lucky to get out of bed as the sheer thought makes me want to cry. The nerves go on hyper activity and while pins and needles sounds all nice and comfy in the description it is not. I feel on those days like someone hooked my nerves up to a straight 220 line and wanted to see my cry. I won’t get out of bed on those days, a small object on the floor that seems minor may trigger off a pain response up my body. I have asked my wife to remove my limbs on those days. Sorry you asked but I want people to know that this can happen. Not everyone is this severe but it can be. What treatments have you used for neuropathic pain and how effective were those treatments? Well there has been gabapentin (useless to me), lyrca (had an allergic reaction to), kepra (went a tad psycho lol to say the least), and I am now on……nothing. Oh do not get me wrong it has not gone away but I have decided the meds are useless and I am not going to let some freaking disease rule my life. Yes on the bad days it has control but the rest of the time when I am burning or numb or anything else it wants to throw at me I fight it. Pain is still there but I am no longer dazed by some of the medications and can choose how I deal with it. I had a podiatrist ask me once which I wanted more the pain or the numbness and my answered shocked her. I told her the pain, yes the numbness is great but I can’t feel when my kids hold my hands or when the cat is playing at my feet. At least with the pain I can focus on them and not on the pain. Is there any advice you would give to somebody suffering from neuropathic pain? The advice I would give is what I try to do every day already teach others what it is. Do not let someone tell you it is all in your head, it is an invisible disease that is real (sounds and sometimes feels like the boogeyman lol). I started taking Social working classes to be an advocate for diabetics and anyone dealing with neuropathy, some (not all) of the medical community still view this as unimportant and it is our job and right for them to actually listen. One of our hospitals has used me to talk with kids who have just been diagnosed as a diabetic; they need to understand the importance of taking care of yourself and the complications of not doing it. Many different diseases bring all of us to the neuropathic community and no matter what you feel when someone looks at you thinking it’s in your head remember one thing. You are not alone and there are others here to talk with. Sorry this is a soap box issue for me lol I will step down now.
	What is your underlying medical condition which causes your neuropathic pain? I am what my medical doctor calls a mix breed diabetic though I tend to dislike that term. I am T1 have been since I was young always will be, however my body has built a resistance to insulin which is a symptom of T2. So I live on a pump using U500 insulin, not the normal U100 nope this is 5x stronger than normal insulin. How would you describe your neuropathic pain? To be honest it depends on the day. Some days I am numb and I have been cut and never even knew it so I tend to shy from the kitchen when I know I am numb. Other days I feel like a furnace as I think the inside of my skin has set fire to itself wanting to make me shish kajohn lol sorry I joke it helps. Then the bad days (yes there is worse than the above description), these days I am lucky to get out of bed as the sheer thought makes me want to cry. The nerves go on hyper activity and while pins and needles sounds all nice and comfy in the description it is not. I feel on those days like someone hooked my nerves up to a straight 220 line and wanted to see my cry. I won’t get out of bed on those days, a small object on the floor that seems minor may trigger off a pain response up my body. I have asked my wife to remove my limbs on those days. Sorry you asked but I want people to know that this can happen. Not everyone is this severe but it can be. What treatments have you used for neuropathic pain and how effective were those treatments? Well there has been gabapentin (useless to me), lyrca (had an allergic reaction to), kepra (went a tad psycho lol to say the least), and I am now on……nothing. Oh do not get me wrong it has not gone away but I have decided the meds are useless and I am not going to let some freaking disease rule my life. Yes on the bad days it has control but the rest of the time when I am burning or numb or anything else it wants to throw at me I fight it. Pain is still there but I am no longer dazed by some of the medications and can choose how I deal with it. I had a podiatrist ask me once which I wanted more the pain or the numbness and my answered shocked her. I told her the pain, yes the numbness is great but I can’t feel when my kids hold my hands or when the cat is playing at my feet. At least with the pain I can focus on them and not on the pain. Is there any advice you would give to somebody suffering from neuropathic pain? The advice I would give is what I try to do every day already teach others what it is. Do not let someone tell you it is all in your head, it is an invisible disease that is real (sounds and sometimes feels like the boogeyman lol). I started taking Social working classes to be an advocate for diabetics and anyone dealing with neuropathy, some (not all) of the medical community still view this as unimportant and it is our job and right for them to actually listen. One of our hospitals has used me to talk with kids who have just been diagnosed as a diabetic; they need to understand the importance of taking care of yourself and the complications of not doing it. Many different diseases bring all of us to the neuropathic community and no matter what you feel when someone looks at you thinking it’s in your head remember one thing. You are not alone and there are others here to talk with. Sorry this is a soap box issue for me lol I will step down now.
MarijaBucic	In reply to fancycakes.fancycakes First I want to thank you for the advice and support. My husband also has MS, but milder, and yet thankfully does not know what is neuropathic pain. I also have psoriatic arthritis and I was always under some pain (if not rheumatic, it is neuropathic or tension headaches), because of all the pain most of the people who have to live with them sooner or later has to manifest some weakness.and the need for support. It happens that despite the large amounts of strong pain medications float. I agree that it needs to stay strong and fight, have left us nothing. In particular, MS with all the accompanying negative phenomena can mentally destroy him with her who has to fight. I have the same message: be strong and fight. n
MarijaBucic	In reply to fancycakes.fancycakeslifes2good Oh, that life can be good and wonderful, but when it happens that way literally go wild with pain just feel the need to express. In any case, thank you for your support
fancycakes	In reply to lifes2good.lifes2good I hope you find some relief for your symptoms. Stay strong. <3
fancycakes	I have MS myself and nerve pain from my hips down to both feet. I also suffer from trigeminal neuralgia. Neurontin and amitriptyline works at keeping the burning from becoming overwhelming in my feet and legs but doesn’t take it away fully. Cymbalta works wonders for my fatigue and my mental well being. As for the TN, I am at the mercy of the universe or I paralyse my face , I choose to take on the universe. Also keep in mind most of these medicines for nerve pain sometimes take months to work properly, then it’s adjusting to a dose that works for you.
fancycakes	In reply to MarijaBucic.MarijaBucic I hope you find something that relieves your pain in your lower leg. Namaste
MarijaBucic	I do not know whether it was concerned that it was changing the time (in terms of climate – because it was warm, and mailazili the dress), I only know that because I ppolineurapatskih pain that made me especially from the knee to the foot horribly tortured, was nervous to these measures, so my first thought was that odgižem own feet, then to tear his own skin to bite, and culminated by the fact that I overcame such a depression, and I wanted to cry and cry and cry. After we came to fight. Anyone else going through this phase of polineuriopatskih pain?
treatingranaturally	Just beginning my new herbal meds for peripheral neuropathy caused by RA, Check out the new blog for Treating RA Naturally. http://treatingranaturally.blogspot.com/
HeleneBryantDomi	I have had neuropathic pain in legs, feet, as rms and hands since 2006. It was discovered that I have lesions on my brain but no MS. My neurologist has given me a diagnosis of ADEM, acute disseminated encephalomyelitis. This is rare for adults. My peripheral neuropathy is severe. The pain is 24/7. I take 3600 mg of gabapentin, Cymbalta, provigil for the fatigue. I have developed restless leg syndrome, arthritis. 20,000,000 people have neuropathy and most suffer in silence because doctors cannot possibly understand this excruciating pain. Neuropathy.org is a great resource.
PamEves	I have two different “sets” of neurological pain. My hip has it from shingles. This is being helped by mild doses of neurontin (100mg in am, 200mg at bedtime). I also have neuropathy in my feet due to my RA. The neurontin takes the edge off, but that’s it. I try to use some moist heat if it gets too bad. Seems to help a bit.
lifes2good	***I have extreme knotted pain for 2 solid weeks! and over a year now!  firstly ill start form the beginning short… i was hit in the head by a metal garage door that broke loose during 50 mph winds Had to go through  speech and cognitive and physical therapy i still with the” Fibro ~fog” to follow thoughts as i have post contusion memory disorder! thought to speech cognition still since 2001 !   I  was diagnosed with fibromyalgia. Though,  more than 15 years ago My daughter is 15  i was 33 and i had a full hysterectomy with female  Cancer ! i  The numbness burning and asleep limbs ,feet ,hands, and pinched nerves ,nervous anxiety, inability to sleep and  fatigued beyond!   Yet i was a hairdresser and worked hard and had a very large clientele  for 25 years!  On disability SDI since 2005 there was a work related back injury and i could not even sit  !   i began falling then around that time! *** 3 years age could not barely walk with a cane ,  never a curb or stairs falling a lot much bruising from it as wellthen a breakdown from being up for a week straight in extreme pain  apparently 2 reasons did not deal with my husband of 20 years walking out with next door neighbor and marrying her after being  dysfunctional  I believe  the main reason  physician taking me off Norco abruptly  because of a supposed prior friend stealing my prescriptions and blamed it upon another until i ind her ex husband investigated it per myself!                                                                   not  taking me off it slowly!??  ”  I did  NOTwant to take it it …but it helped me clean my house! ”  followed by 2 solid  Months of repeated every few minutes full blown on anxiety attacks!                                                                                                                                                                                                                                                                      ***ThisThis  past year diagnosed with optical neuralgia  by a neurologist left base of skull the deprokote   AKA:  i since take (Divaloprex) 750mg .  taking this i no longer  have the virtigo and helps with mood , focus sleep “at times”                                                                                                               ****Though  the entire both sides of neck mostly  (L) sided with the optical neuralgia upper arm under muscle aching  . spasms in left shoulder and neck roll on tennis balls in hope the knots release No physician and to physician  to physician to does not do any good physical therapy Exercise only helps for about a hour and most of the time exacerbates the extreme golf size knots and in neck muscles as hard as  the bone ?  hips go out of place in severity as the tendons are being pulled out of place on the hipbone by the  knotted surrounded tissue have to at times for a few days be worked in place painfully and diligently!  numb on outside aching severe internal deep!  the  Bursae (L) &(R)  hips and shoulders! ! I haven’t seen this descriptive of my   present condition in all upper body neck to  shoulders , shoulder blades and throacic now that i was hit in Dec 2012 still complications! Also,  all around to the front breastbone!  others  on patientslikeme ,Mayo clinic UCLA much other   outsourced ?researched information! . i have read up on over time! Nor do i get any?? Nor  an explanation from any Dr.?                                                                                                    Any help please!!!  would be more than gratefully more than imaginable appreciated ! thank you ______MsLifes2good ( regardless)
Dodi 1	In reply to Kpilon.Kpilon hackettmorgan BeckyWilliamsSanchez I have MS for 20 years.  I find eating healthy food…gluten free if possible.  Taken vitamins B complex especially B12, D3 for immune system.  Fish oils.  Bacolfen for spasms.  If I get a really bad MS Hug pain which is like being squeezed to deathe or any other neuro pain I take a vallium and it works.  .  Take plenty of rest and stay stress free as much as possible  best of luck
veronica p	I have MS i have had it for 8 yrs and 5 yrs ago i was diagnosed with type 1 diabetes in which my doctor says i was undiagnosed with the diabetes for yrs and yrs my lil sister has type 1 and was dx’d at 5 and now 35 so i don’t know but my pain is my ankles back feet etc etc  but i am on alot of pills daily for MS i do not know which is helping me for this pain..
Kpilon	In reply to Kpilon.hackettmorgan BeckyWilliamsSanchez   1 more thing….I’ve been diagnosed with MS for 3 years.  Numbness started in my hands which turned into pain, specifically in my finger tips.
Kpilon	In reply to hackettmorgan.hackettmorgan BeckyWilliamsSanchez   I took 2400 mg of Gabapentin a day and not help.  I started taking Cymbalta and slowly weaning the Gabapentin.  I also started exercising, doing yoga and napping when need be.  I have found significant improvement and have stopped Gabapentin altogether.
hackettmorgan	In reply to BeckyWilliamsSanchez.BeckyWilliamsSanchez I also have this pain, have had for the last six years, but was not diagnosed with MS until last July.  I take Gabapentin, 300 mg x 2 a day but it doesn’t help.  Soaking my legs in the cold/cool pool helps.  I have a host of other MS symptoms but this one is about the worst and what my docs and I have been chasing for years.  It is hard to accept just having to live with it.
Giromancy	Hi I suffered an accident 8 years ago that started mine off, which has been slowly progressing over that time, I have epilepsy as well. I tryed tens units that didn’t work and so many pain killers I can’t count. I am now waiting to see if surgery is an opption that may help alittle.
GenevieveW	Check out my post on neuropathic pain at familylifewithms.wordpress.com
starsfan8	I have MS, and after the last big, bad relapse I had which was in 2008 I was left with serious nerve pain.  I have it every day and it starts around mid-day with numbness and burning in my butt which spreads to my thighs which then feel as if they have been severely sunburned.  If I am fatigued or warm (above about 70 degrees – seriously!) that pain begins to spread to other areas of my body…I will feel it over the trunk of my body where it feels like I have been punched in the stomach and also have a bad sunburn, to my arms, the sides of my breasts, my back and finally my face and scalp…it is worse on the right side of the trunk of my body but has spread to the left side in recent years.  I take Neurontin at 2700 mg. a day (600mg. 4X daily with 900 mg on last dose) which helps, but does not stop it.  I take Cymbalta which is an antidepressant and it has helped the depression, but not sure if it has helped the nerve pain at all – can’t tell any difference.  I cannot take Lyrica as I am allergic, and the only other thing the doctor told me I can do is exercise and stay as active as possible which supposedly will help it, but so far, doesn’t seem to do so.  I stay as cold as possible which drives everyone else around me crazy.  I cannot sit in a room at a ‘normal’ temperature with people for long without becoming miserable, and if I have to stay in that environment, I will be 10X as fatigued by the end of the day.  Moved from Texas to Colorado last year to help, and it helps except for the summer…so in the next couple of years hope to move farther up in the mountains at a high altitude to get even cooler!
BeckyWilliamsSanchez	I have diabetic foot neuropathy in both feet.  I was doing good with the Neurontin it was keeping most ot the pain away….I was up to 400 mgs. 3 x’s a day.  Nephrology Specialist but my Neurontin back to 200 mgs. 2 x/s a day because the Neurontin was damaging my already low functioning kidneys.  So the pain levels soared again.  I was already on pain medicine Lortabs 2 x’s a day and now he has increased the pain meds. to 7.5 mg 3 x’s a day.  My body is racked with pain from the neuropathy, arthritis in shoulder and lower back.   I AM A TOTAL MESS….
NurSuZ	I have had neuropathic pain in my right leg for about 25 years after being involved in a very bad MVA. I have tried many different medications over the years but what worked the best for me was acupuncture. I went for multiple sessions for nearly a year initially and then again about 12 years later. Both times it gradually relived the pain so I could get off the drugs and get back some semblance of a ‘normal’ life. Now it’s back. I’m back on pain meds and battling with the auto carrier to let me go back to acupuncture. I am seeing a comprehensive pain management doctor tomorrow for all my other pain.