• JNW's Avatar

    Neuropathic Pain

    Asked by JNW on Saturday, April 15, 2017

    Neuropathic Pain

    This is the second time I've experience neuropathic pain around my mastectomy site. The first time I had nerve blocks and trigger points and they did great from the day I got them and they lasted well over a year. This time around, a few hours after the nerve blocks, the pain started growing and spreading. I notified the doctor. She put me on Baclofen and told me to give it a week for the nerve blocks to fully kick in. The pain continued to grow and spread. I saw her after a week and she said she'd never seen anything like it. She tried a couple of trigger points. One worked and one didn't. Based on that, she said she didn't want to go in with more blocks or trigger points, gave me a script for Baclofen and said to come back in a month. Has anyone else had this issue? How did you overcome it? Dry needling has been suggested, but very close to where my lymph nodes were removed, which worries me about lymphedema. Is that valid?

    50 Answers from the Community

    50 answers
    • barryboomer's Avatar
      barryboomer

      https://www.drugs.com/baclofen.html This is a Muscle Relaxer so I don't see how it can help you.

      7 months ago
    • geekling's Avatar
      geekling

      Gee, this is awful. Im so sorry.

      What about talking to a neurologist? Pain management people? Physical therapy?

      What exactly is causing the pain? Could she try again with a nerve block? Why cant the nerves in that area be deadened rather than inflamed?

      Have you thought to try something simple? A castor oil pack with comfrey leaves and cayenne in the poultice, perhaps.

      Best wishes. Please keep us apprised as to how you are doing.

      7 months ago
    • BoiseB's Avatar
      BoiseB

      Your Dr. has "never seen anything like it" OK It is time for one of you to get a second opinion. It doesn't look like your Dr. is going to do that so it is up to you to see another Dr.

      7 months ago
    • JNW's Avatar
      JNW

      I should add, but was running out of room that I'm already on gabapentin, Topamax, massaging the ever expanding area with castor oil, working with my onc, palliative care, pain mgmt, neurology, my gp, my therapist, and will start with a breast cancer rehab group next week, as well as have referrals in process for a new neurologist and new pain manager, so bases are covered for "expected" meds and I'm advocating for myself. When the pain mgr threw her hands up and said she'd never seen anything like that, I asked her if she had any ideas for moving forward, she replied in the negative, so I started gathering up my things and she reminded me to wait for the nurse and schedule to see her in 4 weeks. I smiled and told her that wouldn't be necessary. The Baclofen has come into play because the pain is so intense that large muscle groups are spasming and all docs agree that's causing back to back traditional and complex migraines every few days. All docs are all wary of trying nerve blocks again, since it was such a spectacular fail.

      So, hopefully, I cleared that up some. Anyway, I'm doing all the things, but am rather more curious if anyone has had the experience of having nerve blocks and, by coincidence or not, it set off a massive blooming of muscle pain and migraines. If so, did they find a solution? Dry needling in the lymphedema risk area; risky or not?

      7 months ago
    • BoiseB's Avatar
      BoiseB

      Sad to say yes my sister-in-law has several failed nerve blocks, I am also sad to report she is not doing well. She has fibromyalgia She is now working on adjusting her drugs. She has never had cancer but they have never talked to her about dry needling. I suffer from massive cramping. I make sure that I get plenty of potassium in my diet. My pain is not cancer caused but cancer certainly kicked it up a notch or two. My best pain relief comes from The Nanny Cat it seems that a cat's purr has healing qualities.
      The prayers of others has helped me. May I pray for you?

      7 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      BoiseB, I have many years of fibromyalgia behind me and experimented with adjusting the drugs over the years. I think the thing that helped me the most was real sleep, which fibro patients have a lot of trouble with. A pain specialist first recommended a low-dose antidepressant, a muscle relaxer, and a sleeping pill about 20 years ago. After a while I stopped taking the sleeping pill (Ambien) and the muscle relaxer (Flexaril).

      Coincidentally when I went to a Fibro support group many years ago, they had a speaker from UAB who was doing research on antidepressants for fibro pain. He said they had compared different antidepressants for fibro pain and had found Zoloft was the most helpful. That's when I changed to Zoloft and felt better. Much later I requested my dosage increased from 50 mg to 100 mg. I usually go by how sensitive my toes and feet are, because they used to hurt when my bedsheet touched them.

      7 months ago
    • JNW's Avatar
      JNW

      BoiseB thanks for the info regarding your SIL. I agree that cat purrs have healing properties. Luckily our cats are older and very human socialized, so I generally have a cat curled up with me and ready to purr at any given time. :) And, yes, please feel free to pray for me. I'm happy for any good energy I can get. Thank you!

      7 months ago
    • BoiseB's Avatar
      BoiseB

      JNW I am really I couldn't give you more positive news about pain blockers. Putting you on my prayer list.

      7 months ago
    • Raeyye's Avatar
      Raeyye

      I'm in pain too for 3 years. No reconstruction, no treatment , and I have Post Mastectomy Pain Syndrome and Trunkle Lymphodema. Tried everything too. We have a great closed group on FB , Surviving Post Mastectomy Pain Syndrome. It's where we share and get most help.

      7 months ago
    • JNW's Avatar
      JNW

      Thanks, Raeyye. I've requested access to the group. :)

      7 months ago
    • charnell's Avatar
      charnell

      My ribs feel like they are broken. 7 out of 10 on pain level. I have had 7 trigger point injection series in the past year. I was on gabapentin 1800 mg. They tried Lyrica. I have tried LOTS of things, No clue.

      7 months ago
    • JNW's Avatar
      JNW

      Hi chamell, I'm currently in that cycle. After 2.5 years, I finally got a referral to a breast cancer rehabilitation center, which has given me some great exercises to increase my range of motion and build up my muscles to help with this in the future (my docs didn't want to sign off on belly dance, but this actually strengthens my core and upper body, and stretches my upper body), but we need to find something that takes care of the pain while I just work on getting the muscles loosened up. We've tried 9 different meds/treatments and they've all failed, thus far. Monday, my palliative care doc will offer up #10. We're getting close to infusions of ketamine. I'm to the point that they could probably suggest ridiculous stuff and I'd take it if it meant some relief and getting back to school. I'm happy to compare notes of what we've tried and I'll definitely report back if I have some success.

      7 months ago
    • charnell's Avatar
      charnell

      I did over 2 years of PT/OT - stretching exercises, (Haven't tried the belly dancing), tried massage. I actually had 6 massages in 4 weeks. I have tried acupuncture, I have lost 40 pounds, I really thought losing weight and exercising would make a difference. It doesn't. When you get it figured out, please let me know. Hugs.

      7 months ago
    • JNW's Avatar
      JNW

      Our experiences sound very similar, charnell. The docs and PT/OT folks would look at me like I was crazy when I would report that acupuncture and massage didn't help. The rehab facility folks just shook their heads when I mentioned that they really wanted me to revisit acupuncture and start dry needling. I could just be grasping at straws, but the fact that the rehab facility actually wanted to speak to my palliative care doc and work like a team and knowing that my palliative care doc would do so gave me a little kernel of hope. Granted, the third test of med #9 was a total bust, so Monday will start the discussion of what comes next, so there's little doubt that this will be grueling and docs have told me that this will probably revisit me multiple times during my life, so this isn't this isn't some magic bullet I'm looking for, but I'll certainly settle for some good tools in my toolbox to deal with this better now and in the future.

      7 months ago
    • charnell's Avatar
      charnell

      My surgeon went so far as to perform an additional surgery and biopsy of the area because the pain is so bad and non-relenting.

      7 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      JNW and Charnell, if you are looking for core strength and stretching, check into the Pilates Reformer, which is an exercise machine developed by a Physical Therapist named Pilates for stretching and core strength. He had had a serious accident and rehabbed himself with it.

      The machines look like a flat low-to-the-floor version of the Total Gym machine, and Pilates Reformers are sold on QVC (TV). Some places have Pilates classes that are very expensive compared to getting the machine. I haven't heard anything negative about it.

      7 months ago
    • JNW's Avatar
      JNW

      Hi BarbarainBham, thanks for the recommendation. I'll keep it in mind, though, as a belly dancer for 23 years, nothing (except getting rid of this pain) makes me happier than to not only be cleared to dance again, but encouraged to do it. This will take care of my core and upper strength, as well as stretching and be totally fun in the process!

      7 months ago
    • charnell's Avatar
      charnell

      They have exercise machines at the gym where I go. I tried it once and was in so much pain. I won't attempt that again. I have tried many, many things that make the pain so much worse. I am unable to mow, or vacuum, or lift anything heavy, move things. Even putting dishes up on the top shelf hurts. I did PT/OT for over 2 years. I lost 40 pounds this year and was hoping that with the weight loss, the pain would diminish. Nope.

      7 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Charnell, have you been evaluated by an expert for fibromyalgia? A lot of times mysterious pain ends up being fibromyalgia, which is what I have. Trigger point tenderness and soreness, plus sleep problems, are key symptoms, although every patient has other varied symptoms.

      My old support group had a TV weatherman with fibromyalgia in it, and he told us his fibromyalgia was effected by changes in the weather---not necessarily temperature, but I think he said by the barometric pressure. I've been aching today, and we have severe weather forecast for tonight.

      7 months ago
    • Raeyye's Avatar
      Raeyye

      You need PT with th a specialist who know about Post Mastectomy Pain Syndrome. Myofacial Release is helpful. You must learn all the massage and gentle stretches to do on yourself everyday. No overdoing. I use a rebounder gently and a vibrating base I stand on. Go to classes for cancer patients. I do yoga , and Thai Chi at the hospital. Less is better , no weights and I wouldn't go near a Pilates's machine . No more surgery can fix the s , cut nerves can be frozen with FFA , but that lasts for 2 weeks to 3 months and is painful with complications. Water excersise gentle is good , just being in water , not too hot for is good. Wish there was a cure , but it can get better.

      7 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Charnell, if you go to a Pain Clinic to figure out what your pain is from, they can give you medication to try to help. If it's fibromyalgia, the combination of a muscle relaxer, sleep aid, and low-dose antidepressant helps most people. Chemicals in your brain related to sleep are the same as those that control pain.

      One of the ways fibromyalgia is diagnosed is by trigger point tenderness, and if a certain number are positive, they diagnose fibromyalgia.

      7 months ago
    • charnell's Avatar
      charnell

      BarbarainBham, I have been going to a pain clinic. I was prescribed 1800 mg of Gabapentin. That made me sleep all day. I was switched to Lyrica, that caused a bad rash. I have been given trigger point injections, about once a month. They have not diagnosed fibromyalgia. I have been going for over a year.

      7 months ago
    • Raeyye's Avatar
      Raeyye

      The pain is from cut nerves. Also iron bra feeling. It's common with breast surgeries. They never mention it. It's Post Mastectomy Pain Syndrome. I have it almost 3 years. I tried every pill and every therapy. It's awful they don't mention it , about 30-50% of women get this condition.

      7 months ago
    • meyati's Avatar
      meyati

      I am so sorry this happened to you-- hugs Also Barbara Bain is correct that you need a real pain clinic--- In otherwords- chiropractors, etc skip those--demand or find a pain clinic with anesthesiologist----

      7 months ago
    • charnell's Avatar
      charnell

      @meyati, I have a real pain clinic - at the hospital. I don't know about JNW. But, it sounds like she dos as well.

      7 months ago
    • JNW's Avatar
      JNW

      Yeah, I am at the pain center associated with my cancer facility. Though this is the third time I've had this issue, every doc is calling PMPS, with the exception of acute pain, who would be the ones to use more advanced protocols, so my good pain doc has referred me out to a breast cancer rehab facility for long term care/intervention and is trying to refer me to another pain facility that deals with PMPS a lot with pretty good results and will look at treatments that don't include narcotics, muscle relaxants, super high doses, or of anti-convulsants because I've tried a ton of those and they either don't work or have some debilitating impacts on me. You, know, easy peasy. ;-) The trick right now is getting the monolith hospital system I'm with to get my medical records over to a reputable pain facility in the right format. Ah, bureaucracy!

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Charnell, if 1800 mg of Gabapentin makes you sleep all day, did they tell you to try less mg? No matter what the pain is, keep working with a Pain Clinic methodically until they try everything. Then try another doctor or Pain Clinic with a Physical Medicine Physician. (I would personally skip the Anesthesiologist unless you want narcotic pain medicine. I would try low dose antidepressants for pain first. If you take muscle relaxers, I suggest trying them at bedtime only for sleep.)

      Sometimes fibromyalgia or whatever you have is diagnosed by ruling other things out, and it takes awhile (years) if you try each change for 3-4 weeks. Don't give up. There is an answer.

      6 months ago
    • charnell's Avatar
      charnell

      @BARABARAINBHAM,I started at 300 mg of gabapentin. It didn't make any difference. They kept increasing it until I got to 1800 mg and it started working. So yes, they did tell me to use less mg. but it didn't work, and I was hesitant to keep increasing because lower does didn't make any XXX difference. I really, really tried. I have tried so mean XXX pain clinics. I have a physical medicine physician at the MMC pain clinic. I also have an MD and an oncologist and a Primary DR. I am also on low dose antidepressants, currently, surprise, surrpise, they don't make any XXX difference in the pain. I DO NOT WANT MEDICINE. I WANT THE PAIN TO GO AWAY, WITHOUT MEDICINE. I AM NOT A DRUG ADDICT. AND i REALLY DO RESENT THAT IMPLICATION.

      6 months ago
    • JNW's Avatar
      JNW

      @charnell I get the issue with Gabapentin. To add insult to injury, it causes oversedation during the day and insomnia at night. One thing that helps me is that I set out my Gabapentin the night before, set an alarm for very early hours, take that and it helps me for a good while without being so oversedating, then I take smaller doses during the day, then take a larger dose in the evening. Not sure if that might help your situation, but maybe it's something worth talking with your doc about?

      6 months ago
    • Raeyye's Avatar
      Raeyye

      GABA made my arm swell at 300 , in 2 weeks. Lyrica made my chest tight , Dr didn't call back , druggist said stop , could be heart or lungs. Cymbalta I couldn't pee. Elavil I landed in hospital with face swelling. I'm on Norco , oxicodine , Valiumm , zanex , ambium. I mostly take Tylenol , somedays Norco. I take pot candy to sleep instead of ambium. I Suffer from pain everyday. I tried shots , accupunture , PT on and off for 3 years. I wear compression and sometimes can't stand anything touching my chest. I am flat , no other treatment . Next would be RFA , but it lasts 3 mounts if lucky. Some are trying Fentynal patches. We are trying everything , it's very common to have Post Mastectomy Pain Syndrome. It's a secret that Drs hide. It's nerves pain from cutting the nerves. My surgeon said at 3 months out , you can't have pain , I cut all the nerves. Being in water helps , rest and meditation help. I'm glad I'm 74 and don't have to work . I hope everyone gets better with time. I feel like I'm getting worst. I use an alpha Stim , I tried Quell. Myofacial Release by a John Barnes trained PT helped most. None where I live , I get it when I go to NY.

      6 months ago
    • geekling's Avatar
      geekling

      I prefer pot oil.

      Not yet available in my State.

      I like it better than pills but each person needs an individual bandaid.

      We have big boo boos. :-(

      6 months ago
    • JNW's Avatar
      JNW

      @geekling I would prefer a more natural route. Had I an inkling this would go on so long, I probably would have experimented. The good pain centers in my area actually do drug testing, which could get me denied service. I want to figure out how to just stop it, then have the wherewithal to see what I can swap out for more natural alternatives. Thus far, I've done pretty well except for sleep and my AI. :)

      6 months ago
    • charnell's Avatar
      charnell

      I am going to try a new chiropractor on Monday. Also, being referred for a nerve conduction study. Pray that something will help. They did the trigger point injections yesterday, without the steroids. It lasted for a couple of hours. It was nice feeling good, but not worth the time and expense for just a few hours.

      6 months ago
    • geekling's Avatar
      geekling

      @JNW I wish you relief.

      If you can possibly get a breather from the pain, it will give you time to be clearheaded and to think what is best for you.

      Very best wishes.

      6 months ago
    • JNW's Avatar
      JNW

      @charnell After 2.5 years of vacillating between diagnosing me with carpel tunnel then neuropathy, one of my neurologists finally caved and ordered an EMG. Of all the testing they throw at me, I'm not sure why they balked at this one. So, finally, there's a clear answer that it's neuropathy. Sheesh.

      @geekling Thanks! Here's hoping! I'm so close to graduating and *fingers crossed* getting my esthetics license and job, once I'm back in the land of functioning, then I can start looking at alternatives.

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Lack of sleep impacts pain, which is why antidepressants are a go-to. Different antidepressants vary in how they work on different patients, so ask about a change in the antidepressants or even in the dose of the same one you take. They take a few weeks to get into your system. Have you tried anti-inflammatory meds like Celebrex? Experts also say changes in the weather (pressure) impact pain, so consider that, too.

      I would consider a change in doctors, especially the PCP or whichever doctor is making decisions about what to try. Maybe try a large medical school where the doctors love a challenge.

      6 months ago
    • charnell's Avatar
      charnell

      You know what james and charlie, and dennis, and thomas, and william get XXX off this page. YOU kNOW WHAT i did lose 40 pounds this year. I can send you pictures to prove it. I went from fat and happy to thin and miserable. get off this site. you don't belong on here, and you are XXX XXX me off.

      6 months ago
    • BoiseB's Avatar
      BoiseB

      Hey Charnell looks like those guys were spammers and it looks like they have been zapped Yea

      6 months ago
    • BoiseB's Avatar
      BoiseB

      I have flagged and blocked the five above answers. I have also reported them on Greg's wall. Bye Bye scammers.

      6 months ago
    • GregP_WN's Avatar
      GregP_WN

      I deleted 31 accounts just now. We are trying some different approaches to keep them out, we do one thing, they get around it. We appreciate your help and patience as we fight them off.

      6 months ago
    • JNW's Avatar
      JNW

      Thanks @BoiseB and @GregP_WN!!

      6 months ago
    • BoiseB's Avatar
      BoiseB

      Thank you Greg. Might it help if all were required to give at least a cancer diagnosis and location when joining?

      6 months ago
    • GregP_WN's Avatar
      GregP_WN

      These idiots have been deleted from this thread 5 times so far. Thanks for the suggestions Boise, we have tried several options and they work for a little while. We will get them eventually. Thanks to everyone for your patience and your help in pointing out where they are hiding.

      6 months ago
    • meyati's Avatar
      meyati

      OK-- there are different types of pain clinics, and they seem to push their favorite procedure. A real certified pain clinic can still be less than effective because of what they push. Barbara-even VA pain clinics are that way. The Albuquerque. VA fully used the different types of nerve blocks, then years later the Los Angeles and some Florida VAs began using nerve blocks. This was in the Military Times-not the regional VA news.

      Nerve blocks-- there are a dozen different medical mixtures for nerve blocks. I was a patient person and spent months trying out different mixtures.

      I turned down surgeries for the RSD--and left that clinic. I also started out in an AF pain clinic, where I was given surgery room strength meds. I hit one colonel in the head with an almost full pill bottle. He got the point that the meds weren't working not even a little bit.

      I was told by the effective pain clinic, later by the VA and AF that one reason my nerve blocks worked so well (after we found one that did work) was because I did not take any NSAID, acetaphenmine, alcohol, etc. I couldn't sleep over 3 hours at a time. My right hand was almost black from dead nerves. I would have committed suicide if I hadn't found that pain clinic.

      6 months ago
    • charnell's Avatar
      charnell

      Why did all of the spammers pick this particular guestion?

      6 months ago
    • charnell's Avatar
      charnell

      Anyway you could just stop more comments on this post?

      6 months ago
    • BoiseB's Avatar
      BoiseB

      Spammers gone Yea Greg thanks.

      6 months ago
    • petieagnor's Avatar
      petieagnor

      Thanks everyone for sharing your treatments. I have neuropathy with some fibro. I've had some of the drugs mentioned, but just don't like the side effects. I'm dealing with chemo brain now & don't want it to worsen.

      6 months ago

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