How long does nerve pain last?

[ski4me]

I had my right upper lobe removed (vats) 5 months ago and finished chemo in 7 weeks ago. I'm beginning to think the nerve pain will never go away. Tried Gabapentin unsuccessfully and then Lyrica. After about 3 months of Lyrica, which really helped, I had to stop due to side effects. The nerve pain is not as bad as before the Lyrica but still very very uncomfortable and depressing at times. Doctors just say nerve pain can take a long time. Can anyone tell me how long the nerve pain really lasts?

[SusieJo1948]

Hi I don't want to upset you. When I had my vats they took my upper left lung. Down toward my lower lobe I had tubes draining. When they were removed I had really bad nerve pain. My Dr and surgeon didn't tell me this would happen. Apparently a lot of Dr's don't tell you your going to have nerve pain. My pain Dr kept trying figure out why I was having the pain. Come to find out it was nerve pain where they had cut some nerves. Not enough to deaden them but enough so you had severe pain. I'm not a Dr I can't tell you how long you'll have pain. Mine lasted 3 years others less. I know I cried a lot I tried gabepent muscle relaxers , heat plus pain meds after suffering for 3 years it finally stopped. Every one is different so I can't tell you how long yours will last. For God's sake I hope not long. I've had pain before but nothing like that and hopefully never again. I feel for you I'm sorry your going through this. I wish I could help with your pain. Others didn't have it as long as me. I can't tell you how long it will last. Hopefully not long. Some of the others didn't last ad long as mine. It's awful i didn't think it would go that long. I'm thinking of you and hope it doesn't last long. If you need to talk I'm here I will listen and help you as much as ad I can. I'm a survivor 6 years. Love susiejo1948

[Looved75 in reply to SusieJo1948]

I’m glad that you’re OK and your nerve pain has finally gone I’m suffering with this as well two months post op gabapentin Meloxicam the Norco work but they stop giving it to me only had it for a week.And you’re right the doctors don’t tell you about nerve damage he kept saying you’ll be fine you’re just feeling the pain was unbearable then he finally referred me to a pain clinic and that’s where I found out about my nerve damage.

[Ruthie1950]

My chemo and radiation ended on 2/5/16. I had my left lung removed on 2/27/17. I started with nerve pain in my hands and feet soon after finishing treatments but didn’t mention it to the doctor. After my surgery the pain spread to my left side. I mentioned it to my chemotherapy oncologist who advised taking B12 every day. It has helped tremendously although I do continue to take the Gabapentin at night. I still have nerve pain but not every day. I think different things I do may cause it to be worse at times. Please try the B12 as it may help you as well. I buy over the counter B12, not a prescription.

[ski4me in reply to Ruthie1950]

Thanks I'll definitely try the B12

[Feelingblessed2013]

I am almost 6 months post op from having my right upper lobe removed for stage 1a squamous cell LC, along with some lymph nodes (that all tested negative). I still get occasional little twinges, pokes, or stabs on my right side, but it is getting better. I think at this point the breast pain from having the lymph nodes removed is worse than the nerve pain from the incisions.

There is no way for anyone to tell you how long your nerve pain will last because as SusieJo said, we are all different, we heal differently.

You said the pain is not as bad as it was, that is because you are healing, just give yourself time and repeat after me "this too shall pass".

[ski4me in reply to Feelingblessed2013]

Thanks - I will focus on feeling better.

[ynkefan08753]

Hi. I’m sorry for what you’re going through and I can’t say I know how you feel because frankly, I don’t. I do however suffer from nerve pain in my right hip and leg and have some advice about lyrica that might prove helpful. I too suffered from pretty bad side effects and I was in the lowest dose available to me. 25mgs once a day. I stopped taking it for a while and then did some research on my own. It turns out that sometimes you have side effects when the dose is too LOW. I know that sounds crazy but I talked to my doctor about it and we decided to try 75mgs once a day. It was better so we upped it once more to 100mgs. I stayed comfortably on that dose with no side effects for 4 years. When I decided it was time to stop and see how the pain had progressed or degressed I stopped cold. Bad idea. Lyrica comes with a wide range of withdrawal symptoms of stopped suddenly. I suffered in agony for 3 days before I figured out it was lyrica withdrawal. I actually called the manufacturer and they are the ones that told me about that little known fact that lyrica withdrawal can be torture if not done correctly. They advised me to take one pill every other day for 10 days, then one pill every 3 days for 10 days and then one pill a week for 2?weeks and then stop. I know it sounds confusing but it worked well and I had no more withdrawal. I also discovered that my nerve pain was such as I no longer needed the lyrica. Nerve damage is very slow healing but I guess the 2 years I was in it was enough time for the problem to heal. Consider asking your doctor about increasing the dose and seeing if that makes your side effects go away. Unless of course you had a serious reaction and in that case, ignore this lol. It really is an amazing medication and a much better alternative than opiates that just make you not care about the pain as opposed to actually killing it. Once you’ve been on opiates for a couple of weeks they just don’t work anymore. You’re body gets fooled into thinking they do by causing withdrawal if you don’t take it which in turn increases your pain. So when you finally give your body that opiate...it thinks it killed the pain when in fact all it did was stop the withdrawal. Viscous cycle indeed. No wonder we’re having so much trouble with addiction today. I’ve also found that medical marijuana edibles help incredibly well with arthritis pain, nerve related pain, and headaches. It’s not for everyone but I always suggest it because it’s done so well for me. I’m not sure I’d ever sleep if it wasn’t for the MM. It replaced 5 years of prescription sleeping pills for me. Haven’t touched one of those since 2016. I hope you begin to get some relief soon 😊😊😊

[Denzie Moderator Volunteer in reply to ynkefan08753]

My experience with opioids is different from yours. I’m on the Fentanyl patch at 12mcg. When they put me on it they had me at 50 mcg. As my body has healed I voluntarily reduced it to 25 then 12.

When I decided to get rid of the Fentanyl at 25 mcg I used aspirin, naproxen, ibuprofen and acetaminophen in rotation to manage the pain. I went through a couple of days of withdrawal as well. After about 3.5 weeks I wound up in hospital ED with gastric bleeding. My doctor wanted me back on 25mcg Fentanyl but I insisted on 12mcg.

I live with pain constantly at this strength but it is manageable. Sometimes I forget to change the patch at 72hours. I only realize it when the patch has worn off because the pain is no longer manageable. If I don’t have the fresh patch on hand I don’t usually experience withdrawal symptoms for about 24 hours or so.

I am able to work, garden, clean house and do my volunteer work because my pain is fairly well managed. I am the type of patient these medications were designed to help. As with all other types of drugs response is going to vary from person to person.

[ynkefan08753 in reply to Denzie]

I hear ya. I’m glad it’s working for you. Unfortunately when my pain meds were no longer working my doctor wanted to try the patches. Since I’m allergic to adhesives I was unable to tolerate them. Broke out in bleeding blisters after a half hour. The problem he said with the opiates was that after 3 hip surgeries, 2 knee and several painful infections...I was building a tolerance and they just weren’t working. He put me on a drug that they use for long term chronic pain but also for heroin withdrawal! Methadone. I had no idea. Not only didn’t I know what else they used it for...I didn’t know how hard it would be to stop taking it. It turns out it was damaging my bone density even though I was on a low dose (30mgs a day). I tried a 7 day inpatient detox and ended up coding in the ER when they sent me into precipitative withdrawal and my blood pressure fell dangerously low. After 7 days of torture they told me I had to go back on it and do a slow taper because they weren’t able to control my blood pressure. I would only take 15mgs and then I warned down to 2.5mgs and then did the whole subutex/Suboxone thing. I was so disgusted that I had to take medications made for drug addicts (no offense to addicts. I just wasn’t one). I never took more medication than prescribed and I never would have started taking anything except I had an overprescribing pain doctor who is now in the middle of an investigation for overprescribing all his patients and putting 70% of his patients on methadone for pain. Apparently the average number of patients the normal pm doctor has in their practice is generally less than 2%. They are saying he did that to keep his patients coming back. Only addiction specialists should be writing methadone when it’s the necessary for a heroin addict. Or for terminal cancer patients who can’t take standard opiates. He abused the system and in the process...screwed a lot of people who really needed a good doctor. That’s why I choose not to take opiates for pain and why Medical marijuana works best for me. Everyone reacts differently to different drugs, especially someone like me who gets knocked out by one benydryl lol. Maybe one day they will actually be able to fix the problems instead of masking the pain. #PainStinks😳

Be well 😊😊😊

Ps

I know there’s probably a million typos in this but I’m frankly just too tired to proof read. PET scan tomorrow 😳😳

[Denzie Moderator Volunteer in reply to ynkefan08753]

Best hopes for an unremarkable PET.

[cmilashoski]

I don't want to get you upset BUT I HAD SURGERY RADITION AND CHEMO ALL IN 2016 AND I STILL HAVE SO MUCH PAIN IN MY BACK AND DONT GET ME STARTED ON THE PAIN AND BURNING AND TINGLING IN MY RIGHT HAND !!!!!! I TRIED GAPENPENTIN DIDNT WORK FOR ME AND THEY WOULNT APPROVE ME FOR LYRICA I TAKE PERCOSET FOR MY BACK PAIN BUT NOTHING HELPS MY HAND I TRIED MEDICAL MARIJUANA ONE WEEKEND AND DIDNT FEEL NO PAIN ALL WEEKEND BUT I CANT WALK AROUND THAT HIGH SO IM BACK TO JUST PAIN KILLERS IPRAY EVERYDAY THAT IT WILL GO AWAY BUT SO FAR IM ALMOST 2 AND HALF YEARS IN PAIN EVERYDAY!!!!!!!!!!!!!!!!! GOOD LUCK I HEARD SOMEONE SAY SOMETHING ABOUT LYMPH NODES I HAD 20 REMOVED SO MAYBE THATS WHERE THE PAINS FROM OR FROM THE DRAIN TUBE EITHER WAY IM ALIVE AND THATS WHAT THE GOAL IS I GUESS BUT ITS HARD TO ENJOY LIFE WITH PAIN I GUESS YOU CANT GO THRU THIS WITHOUT SOME KIND OF PAIN BUT ITS SURE LASTING LONG MY NERVES ARE SHOT!!!!!!

[Denzie Moderator Volunteer in reply to cmilashoski]

If the medical marijuana is making you high you’re getting the meds with the thc. You need the cbd type. CBDs don’t cause a high. It’s worth a try.

[cmilashoski in reply to Denzie]

ty denzie im saving up money to go see a doctor that will give me the license my ongologist doesn't believe in it or maybe hes not allowed to help me with that

[Hidden]

It was one year Oct 4th since my surgery...I still have slight nerve pain but it does take more than a year, but it does get less and less every month...hang in there...

I'm in remission now and so thankful that nerve pain is just that and it will get better... I took gabapentin for 3 months then switched to Naproxen..no side effects and no matter how long it takes...you have to look at the big picture...and stay positive...and be Strong...you can do it...

[Denzie Moderator Volunteer]

My pain came to a manageable place after about 2 years. 7 years out from my vats I still have pain bout it is mild and I can function with it.

[JeanE41]

I am 3 1/2 years from my lobectoctomy (VATS). It took over 2 years for the pain to decrease enough so I can function with minimal pain meds. Even now, there are days when it is present, but at a much lower level. It does get better with time as all those nerves that were cut during the surgery heal. You may have to experiment to find the medications that work for you. CBD oil may be worth a try. It was not legal where I live until very recently, so I have no experience with it.

I hope you find relief soon. Hang in there, it does get better with time.

[kgie1949]

It has been over a year since I had my lower right lobe removed. I used Norco to get rid of the pain in my chest. Then the cancer can back. Now, I am having radiation and chemo. One of the chemo drugs has caused nephropathy so my family doctor has me on Gabapentin both morning and night. It has helped a lot.

[Lorilu71 in reply to kgie1949]

What stage was your cancer when diagnosed

[iamjdf2]

I had a right upper lobectomy in Aug. 2017 and am still dealing with pain. Usually I notice it more when I wake up and take deep breaths but at times all day long. It isn't so bad that I need medication. Good luck to you.

[gramof8]

Hi there reading all the comments I want to add that I still have nerve pain I had upper lobe removed on left side : may 5 ‘2017 I was on gabapentin but had bad side effects : no drugs just extra strength when needed and I do the lanacane patches helps little not much : I had nerve block the 8 weeks physical therapy ; massaged help and tens unit but once I stopped I’m back to where I started : I still don’t sleep well my bed is a recliner fir laying down I get bad pain and like someone is twisting my insides , goes from my incision to front under my left breast to the middle of chest many times I cry I get so tired of this pain. I still can’t wear a bra for that makes it worse : I got the camis with the padding that I wear when I go out otherwise nothing at home :Very uncomfortable keeps me from living my life like I use too before cancer ; but I’m blessed to be cancer free so far next scan aug 29 : I guess the pain is bearable due to not having cancer :wish I had some idea what else I can do to stop this nerve damage !like I read ppl saying there’s just went away after 3 years : 2 years and I still have it so I can’t tell u when u will be feeling relief : someone told me try the cbd oils but I’m afraid I don’t want to get hooked if that’s possible but I can use some relief ,hope your gets better for you prayers to you