Got Neuropathy? Stinging burning pain? Ideopathic Neuropathy? Get Amitriptyline!?
Question posted by MacIntosh12 on 1 April 2013
Last updated on 8 April 2013
Hi all neuropathy pain patients, diabetics with neuropathy and Fibromyalgia patients, I've actually gotten some relief from the constant stinging pain. I'm almost waiting for the other shoe to drop, if you get me on that. I've had a bad winter with some days that were hair afire pain days, the type of constant horrible pain that Non Cancer Chronic Pain (NCCP) patients feel, where you begin to lose hope, where you begin to think that is my lot in life.
I wanted to share this info with my chronic pain patient friends and anyone who would listen!! I'd NO idea that a certain antidepressant could help so much. I've been on Fluoxetine and thought, well this covers the antidepressant situation, what other antiD is going to help me? I was so wrong! I now know why some of these meds are used to treat pain, they do something to pain receptors, which my neuro doc explained and I figured that I had nothing to lose, I'd give it a try. I've been titrating up and found the dose that's right for me. The side effects on 100mgs for me are unpleasant indeed, so I will stay at 75mgs, as my doctor directed, she said when I felt better to stop at that dose. I still feel it, but the "volume" is turned down now. I'll take that, a small reduction in pain. Your friend, Lara p.s. Pattishan, if you ever read this site, you WERE RIGHT!!
I take amytriptole for fibro... have for a long time. If I start getting those burning knots in my back I use a Tens unit. It come with sticky pads that you put on the knot then its wires connect to a little box you can wear on a belt or your pants. You can choose how hard you would like it to go. This is a real miricle for me. You can buy them online for about $60.00. Let me know how you like it. You will thank me for this Kittenliz
Votes: +1
MA
MacIntosh12
2 April 2013
Thanks Kittenliz, I'd no idea that a TENS unit could be purchased online! I'm looking for one tonight. Do they help with neuropathy or just muscle knots? How did you buy yours? Thank you for any answers, Lara
KI
Kittenliz
3 April 2013
I goofed this is 2nd answer. I only have needed the Tens for the terrible knots. I bought mine online. Just go into Tens Units. There will be lots there. I think mine is made be "Drive"..I think they have a sale just today. I paid about $60 for mine.
AN
ang1049
3 April 2013
Not tp but in... but if u do get a 10's Unit,it is worthe the extra money to buy the pads that cost a little more.The cheap brown ones don't last that long...
MA
MacIntosh12
4 April 2013
Thank you Ang and Kittenliz, I will not buy a cheap one, I'll try to find out which one is a good brand IF I'm able to do so. If you two can suggest a good brand, I'd be most grateful! I'm buying one today, if it helps with muscle spasms then the UPS man will be bringing more than SHOES, glorious shoes to my door! Thank you again, Lara
AN
ang1049
4 April 2013
Welcome!!! :)
PI
pickles503
5 April 2013
Lara, try UGGs. They are the most comfortable shoes I've ever bought.
BU
butterflylynn
7 April 2013
Kitten liz, I have a TENS machine also that I wear ALL the time. it blocks the pain signals in the areas you have pain & really gives you relief. I received mine through Empi & my insurance covered it 100 %. I was not aware that you could but them online & for $60 that is a steal as I think my insurance paid around $300 for mine. Can you tell me what company you are getting the sticky pads through ? I am in need of some more & Empi pads are expensive. And I haven't had insurance for almost 2 yrs.
It is Amazing how well these Tens machines work. Anyone with chronic pain should give them a try. Thanks for the info. Kathy
MA
MacIntosh12
7 April 2013
Hi Anna, I do own a pair of Ugg boots and yes, they are comfy. Thanks Pickles!
Kathy, I do believe Angie has the info you need. I am getting a TENS unit the second I can get in to see my doc! Hope my insurance covers this!! : ) Your friend, Lara
AN
ang1049
7 April 2013
Kathy,I added you as a friend and sent you the information you are seeking.I hope it helps.Best Wishes,Angie
BU
butterflylynn
7 April 2013
Angie, I appreciate your help & I have accepted your friend request. I also sent you a private message response. I hope to hear back from you soon. Kathy
KI
Kittenliz
7 April 2013
As far as the tens units pads go, I have bought them at varios places. The last ones were from DRIVE, and then I got some MedicalProductsOnline.org. I like the rectangle ones, they stay on better. I make sure I always have some handy..approx. 2 x 3 or so. They can be reused.
I want to add a support group on our site, CNCP, or Chronic Non-Cancer Pain and I think this is important! There are so many of us who don't have a voice, but if we all joined a group, whether the moderators of this site let us or not, we should be given a name. I've read two articles regarding this exact topic just lately and it was indeed called CNCP syndrome. Do any of you want to ask the moderators if we can have that new option as a support group? I can contact them but only IF there are interested participants. I find it quite important, we may get so many members that we could actually have a voice in our own care. We could all go to our Government as a group, to ask for help with the DEA and FDA. It's an idea and it's important to have a voice! I'm going to call my local news and see if they will interview me, or someone a bit more eloquent regarding this syndrome, I don't WANT to do it, but I will do it if we "assemble" online, here on this wonderful site!! Lara
Votes: +2
LI
Lisa01
2 April 2013
Great idea my friend!! I'm with you all the way! Lisa
SA
sara12345
2 April 2013
Lara, I'm with you. Sara
MA
MacIntosh12
2 April 2013
Great, we've got 3 members in the CNCP group, Chronic Non-Cancer Pain group, so perhaps when we ask a question we can add it to the list of woes or groups that we have joined. I tried to list it today, but it didn't work. Wouldn't it be something great IF we can get it started?! And all from this great site! Your friend, Lara the Enthusiastic One
KA
kathyhanson
3 April 2013
Lara, Make that 4 for CNCP Support Group. Although my pain started from chemo, it has not continued and worsened because of it. I'm with you! Kathy
PI
pickles503
5 April 2013
Hi Lara. Two of us started an agoraphobic group. We just started chatting on the board, and dc started a group for agoraphobics. Isn't that great? You don't have anything to lose. Enjoy your day. Have some ice cream, and make it a double decker. Anna
Dear Mac, Just wanted to add my happiness, to you, that adding amitrip has made you feel much better! Keep on keepin' on, gal... D-Squared**
Votes: +1
MA
MacIntosh12
2 April 2013
Hi D, (WHY is there no squared symbol on a computer?!) Thank you for your kindness, you are ALWAYS kind and so optimistic that I do believe you spread optimism! It's contagious from you! Your friend, Lara p.s. I hope I can return that favor someday. But not about any painful issues for you!
DU
Dumpster Diver
3 April 2013
Hey Mac, as my frend "Ellen" says- Back at ya... dd*
TE
Tee6759
2 April 2013
Dear Lara, Im so glad amitriptiline is working for you. Im currently on 50mg for depression. I did notice it seemed to make a difference in the stinging in my feet. I get 2 benefits from the drug and I really like it. Im glad it helps you and I hope it continues. Take care! Seeking peace, Tee
Votes: +3
PO
PoisonAlice
2 April 2013
Isn't it great to find one medication that treats 2 or more conditions?! It's always nice, particularly when you're already a walking pharmacy and people could get high off of just licking your skin hehe (you know, from sweating out the drugs in your system... bad joke haha!).
TE
Tee6759
2 April 2013
Alice, Howd you know I was a walking pharmacy? Did someone rat me out again? LOL Oh well, I will survive right?! Keep in touch. Seeking peace, Tee
DA
Dannian
2 April 2013
Drugs are the one thing that brought us all here
I feel like a walking talking biochemistry pharmacological text book
MA
MacIntosh12
4 April 2013
Dannian, you almost ARE a walking talking pharm text book on this site my friend. And a quite knowledgable one at that! Lara X
DA
Dannian
8 April 2013
I don't know that I am going to be around much longer as life is changing here and I am going back to work and DH is possibly being moved to a different country. It looks as though I may have to take some level of boards to practice there. NP's are not common in that part of the world
Whether or not my experience helps me be a text book will truly be "tested" .
It is exciting yet scary to think about this move but the company is saying it will only be for a year so we will not have to sell house
I'm so glad they're working for you! I took amitriptyline years ago specifically for sleep, but after about a year or two, I stopped taking it because it no longer made me sleepy. However, I always noticed that I felt pretty good, physically, in the morning. Back then (6-7 years ago, perhaps longer), I had no idea that these drugs were also used to treat pain, so I didn't continue using it. Fast forward to a month ago, I asked my doctor if I could try out nortriptyline, and he agreed, and I have to say, I'm liking it! I mean, it doesn't have an impact on the basic back pain from my DDD and herniated discs up and down my spine, but it's helping a lot with the burning, stinging neuropathic pain in my hips from my sciatica, which is a pain that I've been having issues combating. I'm so glad this is working for me... and for you too! I tried the newer antidepressants but they had no effect on my pain...
at ALL! In fact, Cymbalta increased my pain level dramatically! Go figure! But the older antidepressants, like the tricyclics, work on more neurotransmitters and chemicals in the body, which is why they're usually called "dirty antidepressants", as they're not as selective as the newer drugs. However, they're finding that more than serotonin has an effect on psychiatric health, and many professionals are going back to the older drugs, particularly for those with treatment resistant illnesses. I think that tricyclics also work as an NDMA receptor antagonist, a receptor that plays a very large role in pain reception, so I think that's why the tricyclics tend to be more effective for pain relief too. They also work as sodium and calcium channel blockers (pregabalin and gabapentin are calclium channel blockers too, which is why they work for nerve pain.), which also play a role in pain reception. I totally agree with you that they are vastly underused for pain relief! If I had known this years ago, I probably would have stayed on the amitriptyline!
Votes: +1
AQ
AquariusAnneCA
2 April 2013
I just sent this information you wrote here, MacIntosh12, as a friend of mine who is only 50 years old became a victim of the statin drug Lipitor..on it for 7 years!!! Neuropathy in both feet, plus problems with his back. He just had surgery (by the way, he is no longer on the lipitor when I sent him information that it causes neuropathy in the feet!) on his back since he was in so much pain, the screw was in wrong so they had to operate again to straighten it out and he is just now feeling a little bit better. He now has asked me about his being cold all the time and particularly in his feet. He will talk to his doctor but he would like my opinion so that he can present her with it. She never was aware that a statin drug caused so many problems and she ordered him to get off of it immediately so it pays to go in with information that has been researched or discussed such as this support group. Doe anyone have any thoughts on the "feeling cold"... I know circulation is a possiblity... any other thoughts? Thanks so much, AquariusAnneCA
Votes: +1
KA
kathyhanson
2 April 2013
Hi AquariusAnneCA, I don't know about the rest of the DC family who have neuropathy, but I live in the South and I have to wear socks all the time because my feet are cold. Let's see --- Cold hands, warm heart. So... cold feet, warm... kneecaps??? Hehe. OK it's official. I've lost my mind!!! Have a great day! Kathy
KA
kathyhanson
2 April 2013
AACA, On a serious note, I know that his surgery probably made him more inactive. Inactivity will make you feel cold easier, since the blood doesn't circulate as well. The coldness in my feet, I think, is not as bad as it seems with the neuropathy. The damaged nerves give a very strange sensation and pain that feels like something bordering on frostbite. But, at times my feet are really, really cold to the touch too. That is when I head to the Hot Jacuzzi bath! It works wonders on easing the pain, warming my feet up, and improving the circulation in my legs and feet. I recommend hydrotherapy for neuropathy. Not as a treatment so much, but as a way to get temporary relief when it gets unbearably painful. One of those portable foot bath/massagers would help with his feet. I wish the very best for your friend. Kathy P.S. I have PN from chemo - thalidomide and velcade. It is in both legs and feet, from the knees down.
MA
MacIntosh12
2 April 2013
Hi Anne, nice to see you again, yet I'm so sorry about your friend having neuropathy, it is one painful thing and if it's chronic it's all the worse, as there is no end in sight. Mine reared it's ugly head in late '09, due to Fibromyalgia and has just gotten worse. It really is difficult to treat, evidently there are two options, Lyrica or Gabapentin. Not much of a choice, to be sure. I do agree with the person who mentioned that recouping from surgery, being inactive could just be the problem with feeling cold, yet...
Was he ever prescribed Topamax or the generic which is Topiramate. I tried it (off label) for Fibro and I felt like I was freezing, which is a rare event for me, my engine just runs hot! : ) It would be quite telling if he IS or was on that medication. It's used for migraines, as far as I know, but off label use is for a myriad of problems for the human condition. It (Topamax/topiramate) has a long list of side effects indeed! Hope he warms up very quickly! Lara p.s. there is an art to finding the right dose, where one feels well and doesn't have an entire host of side effects from Amitriptyline. IF he tries it, he must titrate up on it, don't go all hog wild and take 100mgs (unless he weighs 500lbs) at once, his doc will probably (I'm hoping) put him on a titration schedule, beginning at 25mgs.
MA
MacIntosh12
2 April 2013
Kathy, I completely missed the last sentence where you added that you've PN from Chemo! Were you a member here when you had chemo done?
KA
kathyhanson
2 April 2013
Lara, I had chemo in 2004-2005. I just found this site a couple of years ago. I am sooo glad I did! I developed PN shortly after starting my first treatments with Thalidomide -- nasty stuff, but not really classified as "chemo". Anyway, it has just worsened over the past 9 years, but can't take any of the meds for it. It seems everything they have tried causes me to have mild seizures. I am in chronic pain from the neuropathy and the residual pain from the surgery for multiple myeloma and the bone lesions I had with that. I really, really detest pain meds, as my sister died of a drug overdose in 2008 and my son has been an addict for 15 years. I'll take something for pain IF I just can't stand it anymore, but usually once every 1-2 weeks. Talking to the DC family has been my outlet to keep my sanity -- well, lately I don't think I can claim sanity! LOL I'm like you - I use my sense of humor to feel better. It certainly helps! Y'all (yes I'm Southern!) have been life savers for me. And you, Lara, crack me up! Loves, Kathy
KA
kathyhanson
2 April 2013
Lara, I just answered your question, but for some reason my answers are being screened before they are posted! Haha! It will be posting soon, I hope. Kathy
MA
MacIntosh12
4 April 2013
Kathy and All, don't take it personal if the moderators "review" your answers for a while, they still do it to me once in a while. I just keep answering and then they eventually stop "reviewing" my posts. No big deal, we all get that once in a while. Lara
Lara, I am sooo happy for you that the amitriptyline is easing your pain, even just a little. What a joy it would be to have the energy to get your umph!! back. You have gone through alot with the amitriptyline up to now, but it sounds as though you have achieved your optimum dosage. How wonderful!! Summer is coming (who knows when!!! ) and I hope your meds continue to keep you comfortable enough to enjoy it. You have been a big inspiration for me, Lara. Thank you. P.S. Your sense of humor has lifted my spirits many, many times.
Votes: +1
DA
Dannian
1 April 2013
I am so glad you are feeling better. Any reduction down that pain scale is a Huge step in the right direction. I have also found that reducing the stress also helps with pain management. I hope you continue with this progress D
Votes: +3
ME
meyati
1 April 2013
I'm so happy for you. I know how miserable it is. I know that when something good happens to us that it seems something else goes bad--- shortage of the med or other whacked out thing.
Just enjoy each day this medicine helps kill that horrible feeling. I think that it is a great victory in this day and age. I know that you'll sleep better and have more confidence walking and doing the things that you want to do.
Votes: +1
MA
MacIntosh12
2 April 2013
Dear sweet meyati, You never cease to amaze me! You've gone thru hell and back and here you are congratulating me on this bit of pain relief! You, meyati, are what this site is all about, imo. Love, Lara
ME
meyati
2 April 2013
You're going to cause me to lose any shred of humility that I might have-LOL-But I do enjoy the kind words.
LI
Lisa01
1 April 2013
Hello dear friend! So happy to hear that it's helping you. I tried it years ago for migraine pain, but unfortunately have a bad reaction to it and can't tolerate it. Sounds like your new doc is a smart cookie!! Turning the volume down on pain is a turn in the right direction and one we all could go for. Now find us a way to turn the volume down on those dreadful ear worm songs!! Love, Lisa
Votes: +1
MA
MacIntosh12
2 April 2013
Laughing, just laughing!! I'll email you in a few minds, you nut! Those are "brain worms" not "ear worms", but I bet somewhere on this earth exists an actually ear worm! Oh yuck, I was already nauseous as I HAD to go up to 100mgs the last two nights and gurl, it has been horrible! The doc wanted me to try it up to 100mgs, but told me to stop when the pain was reduced. Back down to 50 tonight and then up to 75 on Wednesday night. : ) You are just a hoot! You are the macaroni to my cheese sistah!! Lara the Cheese (not to be confused with The Big Cheese) Oh yes, took leave of my senses, we don't do the "The" thing here! Ooops
MA
MacIntosh12
2 April 2013
Uno Frommagio Grande
LI
Lisa01
2 April 2013
I barely speak English coherently, don't know ear worms from brain worms and here you are, dazzling me with your Italian(?)? Totally impressive!! Lisa
KA
kathyhanson
4 April 2013
Lisa and Lara, Did you see Kelly and Michael this morning. Hahahaha! They were talking about "ear worms" as a song that gets stuck in your head. I thought of you both when I heard that and got a good laugh. So, Lisa, apparently there are "ear worms" as well as "brain worms" now. Not sure which would be more aggravating. Loves, Kathy
MA
MacIntosh12
4 April 2013
Kathy, I wish I could have caught that show! OK, 'ear worms' 'tis then. But, call it what you may, it's horrible! I now have a Cat Stevens (sp) song stuck in my head, ugh, how long will this last? hee hee, they certainly are annoying what ever they are called. "A rose is a rose, by any other name would ... blah blah blah" oh, poo! I just "blah blah'd the Bard! Bad Lara, bad indeed, ye can't blah blah or yada yada The Bard! It IS funny that you watched that and thunk of us discussing the annoying ear worms/brain worms, it must mean you have one once in a while, do you, Kathy? Lara X (isn't the X a hug, online? I thought it was, but hubby says it's a kiss! Methinks he is wrong.)
KA
kathyhanson
4 April 2013
Lara, Once again, I'm smiling like a Cheshire Cat! You're hilarious, gurl! YES, I have had Janis Joplin's "Bobby McGee" in my head for a week now. Love Janis, but have come to hate the name Bobby! LOL! Guess that song is a little better than the commercial jingles. Ugh! Unfortunately, in my head the song sounds as off-key as it would were I to sing it out loud! Disturbing!!! My mind even scares me sometimes! XOXOXOXO (it doesn't matter which means what). Thanks for the intended hug! Loves, Kathy
DzooBaby is right, the dry mouth is bothersome as it never completely goes away. I don't notice it that much anymore but after 18 years carrying something to sip on is as much a habit as getting dressed in the morning. If it stops working at 75mg Macintosh12, don't bother going up as it isn't one that increasing the dose helps. If that happens it usually means that your pain has changed. I went off for a bit to try something else and the pain got way worse. Back on the amitrip I went and we are working on figuring out why the pain increase.
Votes: +1
MA
MacIntosh12
1 April 2013
Hi Lady2882, The 75mg dose is the dose that works for me, my doc wanted me to titrate up to 100mgs, but it IS working at 75. Oh gurl, that dry mouth feels horrible, I awake at night and my tongue feels as if it's a foreign object in my dried up gob, it really is horrible! But keeping a water bottle on my nightstand helps. Thank you for your input, Lara
MA
MacIntosh12
2 April 2013
Hi Lady2882, I just HAD to go up to the 100mg mark, just to see if it would take more of the neuropathy away, it didn't! It only made me sick, but I had to push the envelop on it anyway. The side effects were unpleasant indeed, migraine, barfy and weak, very weak, like "Rag Doll" weak! No more than 75mgs for this gurl. May I ask what dose you are taking? And did you experience any side effects besides dry mouth? Thank you very much for your input! Lara p.s. DzooBaby is usually right, she is a professional and very good.
LA
lady2882
2 April 2013
I am at a steady dose of 75mg and won't change it for anything. I have been as high as 150mg and that would help for a week or two then wouldn't be any better than when I was at 75mg so would go back down. It's hard to decrease too so after the last time (over a year ago now) I said that I wouldn't do it again.
Amitriptyline helps you sleep too which can really help in of itself. The only thing that I didnt like about amitriptyline was the dry mouth! Nortriptyline is another good one for pain. Both are tricyclics.
Votes: +1
MA
MacIntosh12
1 April 2013
Hi DzooBaby, I believe that some of the old tricyclics are not used enough. I realize that the newer meds have the reputation of fewer side effects, yet I have had better luck (when depressed and for pain) with the tried and true oldies. I so wish I would have listened to pattishan over this, she was always telling me about how it helped her so much (with pain) and that I would benefit from it, she was right! I miss her. I wish she'd come back. Thanks, Lara
DZ
DzooBaby
2 April 2013
yeah, I miss patti too. there are a few old regulars that dont come on much anymore.
DU
Dumpster Diver
3 April 2013
I miss Patti very much too!
MA
MacIntosh12
4 April 2013
DD, I miss her like crazy, I've sent a text, yet got no reply, so I'm not going to try to get ahold of our Ms. Patti any longer, if she wants to come back or to get ahold of me, she knows how to do it. I tried to post a Q about Patti being gone and how so many miss her, but the moderators wouldn't let me post it, as it wasn't medication related. Can't blame 'em for that tho. It is their job to see that we stay on med or illness related topics. I wish you would post more yourself, DD! I don't see you often, perhaps we are not in the same support groups? Lara x
MA
MacIntosh12
4 April 2013
Hi DZB, I didn't see your comment about missing some of the old regulars that were on here, that rarely post anymore. I miss Patti the most, though. She was so good about anything Sub related! And she certainly was fun. She really cared about the people on Suboxone, too. Lara p.s. did you get my pq?
Glad to see that you tried fluoxetine and that it was helpful. Congratulations. Sincerely, Madhup Joshi, MD Maui, Hawaii
Votes: +1
MA
MacIntosh12
1 April 2013
Thank you Dr Joshi, it was actually the amitriptyline that helped. I was already taking Fluoxetine when my neurologist prescribed Amitriptyline. So the relief I feel is probably caused by the amitriptyline. Thank you so much for caring! Your friend, Lara
