Nueropathy

chicoturner
chicoturner Member Posts: 282
edited March 2014 in Colorectal Cancer #1
Hi everyone. I'm not sure I mentioned previously that I have started seeing a Chiropractor about my nueropathy. Today, in support of many friends, I walked in the Breast Cancer Stride for Life walk here in our local park. Tonite I am really questioning the good sense of that walk for me! I have been having really intense cramps in my legs the last week or 2, but this afternoon I had one in the shin area of my leg! Have any of you experienced this along with nueropathy? What do you do or not do? Help! I really hope this chiropractor can help, but I am afraid it will be a long term project. I hurt now. Thanks for your help. Jean

Comments

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #2
    Sorry
    Jean,

    I'm proud of you for doing the walk, but I'm sorry you're suffering so. Hope the chiropractor can help!

    *hugs*
    Gail
  • John23
    John23 Member Posts: 2,122 Member
    #3
    Jean -


    Have you tried Googling: Neuropathy acupuncture ?

    It's amazing what some things can cure!


    John
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #4
    Not sure
    Not sure if this is relative to your situation or not. Is it possible you are low in sodium? Do the cramps come after exercising?

    For non-cancer patients with leg cramps gatorade is often recommended.

    Just a thought...but don't do anything against medical advise of your docs based on any current treatment.

    Hope you find something that helps soon.

    Marie who loves kitties
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #5
    Neuropathy
    Hi Jean,

    I'm not sure if we have neuropathy in the same places, but, I feel Neuropathy is Neuropathy, alas, nerve damage. I have Neuropathy from both knees down, across the tops of both feet, the bottoms of both feet and all ten toes (5 on each foot). The neuropathy was caused by the Oxyliplatin chemo that I had back in 2007 when I did the FOLFOX through the port in my chest. Apparently, rumour has it, that for most people any neuropathy caused by the Oxy will disappear after you stop the chemo. For a small percentage of people, the neuropathy becomes permanent.

    Guess which group I fell into? Yep, the permanent group. The one med that I found has helped is Lyrica. Lyrica is like Gabapentin. They aren't pain killers, but blockers that blocks, or short circuits, the message to the brain that the nerve endings are damaged and in pain. I was getting 75mg twice/day and it sort of worked. This past June I started chemo again, this time the oral pill form Xeloda. Strange reaction to it... it went straight to the damaged nerve endings in my feet and caused such intense pain, I couldn't even walk from my bedroom to the bathroom in my one bedroom apartment without tears.

    So, I actually suggested to my oncologist, since I already am on the Lyrica but the pain is getting through big time, what if we were to up the dosage of Lyrica. She felt it was worth a try, but checked with a neurologist and he said that he wasn't sure if it would work or not but to give it a try at 150mg twice/day. It has taken a couple of weeks but now, I am having no to very little discomfort, so I know I can continue on for the next 4 treatments. After the first treatment, I was in so much pain that I was not going to continue them at all, so the Lyrica at the higher dose has made all the difference in the world to me.

    Cheryl

    PS: Another thought.... if you are low in potassium, that also can cause leg cramps. Strange as it may seem, having a banana can actually cure the leg cramps if you are low in potassium. It's worth a try :)
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #6
    Shin splints
    When I was in the Air Force, those us of that didn't do a lot of walking got what they called "shin splints", not a good feeling in the shin. It will go away in a couple of more or so days, just stay off it for a bit.
  • abrub
    abrub Member Posts: 2,174 Member
    #7
    herdizziness said:

    Shin splints
    When I was in the Air Force, those us of that didn't do a lot of walking got what they called "shin splints", not a good feeling in the shin. It will go away in a couple of more or so days, just stay off it for a bit.

    Sounds like shin splints to me too.
    After extended walking, particularly on pavement, I get them, too. It's unrelated to the neuropathy. Rest a few days should clear it up.
  • chicoturner
    chicoturner Member Posts: 282
    #8
    CherylHutch said:

    Neuropathy
    Hi Jean,

    I'm not sure if we have neuropathy in the same places, but, I feel Neuropathy is Neuropathy, alas, nerve damage. I have Neuropathy from both knees down, across the tops of both feet, the bottoms of both feet and all ten toes (5 on each foot). The neuropathy was caused by the Oxyliplatin chemo that I had back in 2007 when I did the FOLFOX through the port in my chest. Apparently, rumour has it, that for most people any neuropathy caused by the Oxy will disappear after you stop the chemo. For a small percentage of people, the neuropathy becomes permanent.

    Guess which group I fell into? Yep, the permanent group. The one med that I found has helped is Lyrica. Lyrica is like Gabapentin. They aren't pain killers, but blockers that blocks, or short circuits, the message to the brain that the nerve endings are damaged and in pain. I was getting 75mg twice/day and it sort of worked. This past June I started chemo again, this time the oral pill form Xeloda. Strange reaction to it... it went straight to the damaged nerve endings in my feet and caused such intense pain, I couldn't even walk from my bedroom to the bathroom in my one bedroom apartment without tears.

    So, I actually suggested to my oncologist, since I already am on the Lyrica but the pain is getting through big time, what if we were to up the dosage of Lyrica. She felt it was worth a try, but checked with a neurologist and he said that he wasn't sure if it would work or not but to give it a try at 150mg twice/day. It has taken a couple of weeks but now, I am having no to very little discomfort, so I know I can continue on for the next 4 treatments. After the first treatment, I was in so much pain that I was not going to continue them at all, so the Lyrica at the higher dose has made all the difference in the world to me.

    Cheryl

    PS: Another thought.... if you are low in potassium, that also can cause leg cramps. Strange as it may seem, having a banana can actually cure the leg cramps if you are low in potassium. It's worth a try :)

    Hi Cheryl, thank you for
    Hi Cheryl, thank you for your thoughts! I too have just about the same "neuropathy" as you do. It affects my legs down. I have tried acupuncture, but it was not affective. I had oxy in 80 and it hasn't gotten better in my feet, but I have had good improvement in my hands. I did unfortunately get arthritus (sorry about spelling!) in both of my thumbs. The chiropractor believes that is a nerve issue as well. I will talk with my docs about the Lyrica, but I am currently on drug trials and they are a bit picky about what I take. My labs last week showed everything was ok, but that doesn't mean the potassium and or sodium wasn't on the low end of normal. I will check into that too! I have started eating rolaids as I have been told that the calcium can help with cramps. It sure doesn't help me relax and sleep as I am axious about the cramping when I move my feet and legs! I dread night time as it is as sleep doesn't come easy! Oh well......We keep movin on! Again, thanks for the info. Hope your last 4 treatments are affective for you. I have scans coming up in Sept. and am already getting anxious about it! Good scans mean I get to stay on the trial, bad scans and I am off with no other choices at this time... It's always something hu! Jean
  • chicoturner
    chicoturner Member Posts: 282
    #9
    abrub said:

    Sounds like shin splints to me too.
    After extended walking, particularly on pavement, I get them, too. It's unrelated to the neuropathy. Rest a few days should clear it up.

    Hi, thanks for your
    Hi, thanks for your response. The cramping lasted only a couple of mins.,and seemed different then shin splints I have had in the past. Hopefully if will not happen again.
    Jean
  • mark440
    mark440 Member Posts: 63
    #10
    CherylHutch said:

    Neuropathy
    Hi Jean,

    I'm not sure if we have neuropathy in the same places, but, I feel Neuropathy is Neuropathy, alas, nerve damage. I have Neuropathy from both knees down, across the tops of both feet, the bottoms of both feet and all ten toes (5 on each foot). The neuropathy was caused by the Oxyliplatin chemo that I had back in 2007 when I did the FOLFOX through the port in my chest. Apparently, rumour has it, that for most people any neuropathy caused by the Oxy will disappear after you stop the chemo. For a small percentage of people, the neuropathy becomes permanent.

    Guess which group I fell into? Yep, the permanent group. The one med that I found has helped is Lyrica. Lyrica is like Gabapentin. They aren't pain killers, but blockers that blocks, or short circuits, the message to the brain that the nerve endings are damaged and in pain. I was getting 75mg twice/day and it sort of worked. This past June I started chemo again, this time the oral pill form Xeloda. Strange reaction to it... it went straight to the damaged nerve endings in my feet and caused such intense pain, I couldn't even walk from my bedroom to the bathroom in my one bedroom apartment without tears.

    So, I actually suggested to my oncologist, since I already am on the Lyrica but the pain is getting through big time, what if we were to up the dosage of Lyrica. She felt it was worth a try, but checked with a neurologist and he said that he wasn't sure if it would work or not but to give it a try at 150mg twice/day. It has taken a couple of weeks but now, I am having no to very little discomfort, so I know I can continue on for the next 4 treatments. After the first treatment, I was in so much pain that I was not going to continue them at all, so the Lyrica at the higher dose has made all the difference in the world to me.

    Cheryl

    PS: Another thought.... if you are low in potassium, that also can cause leg cramps. Strange as it may seem, having a banana can actually cure the leg cramps if you are low in potassium. It's worth a try :)

    lyrica
    Cheryl thanks for the info... I did oxy and my feet and finger tips are killing me....... I will suggest the lyrica to my onc. thanks
  • ritaclough
    ritaclough Member Posts: 44
    #11
    chicoturner said:

    Hi, thanks for your
    Hi, thanks for your response. The cramping lasted only a couple of mins.,and seemed different then shin splints I have had in the past. Hopefully if will not happen again.
    Jean

    I also suffer from
    I also suffer from neuropathy. I have found that marijuana helps the tingling and numbness but doesn't seem to help the cramps that can go into full fledge charlie horse in the middle of the night. All my blood levels are fine as far as minerals its just a malfunctioning nerve issue. I know they prescribe anti seizure meds for neuropathy just not sure if it takes care of those nasty cramps. I probably will be finding out if mine continue
    Rita :~)
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #12
    chicoturner said:

    Hi Cheryl, thank you for
    Hi Cheryl, thank you for your thoughts! I too have just about the same "neuropathy" as you do. It affects my legs down. I have tried acupuncture, but it was not affective. I had oxy in 80 and it hasn't gotten better in my feet, but I have had good improvement in my hands. I did unfortunately get arthritus (sorry about spelling!) in both of my thumbs. The chiropractor believes that is a nerve issue as well. I will talk with my docs about the Lyrica, but I am currently on drug trials and they are a bit picky about what I take. My labs last week showed everything was ok, but that doesn't mean the potassium and or sodium wasn't on the low end of normal. I will check into that too! I have started eating rolaids as I have been told that the calcium can help with cramps. It sure doesn't help me relax and sleep as I am axious about the cramping when I move my feet and legs! I dread night time as it is as sleep doesn't come easy! Oh well......We keep movin on! Again, thanks for the info. Hope your last 4 treatments are affective for you. I have scans coming up in Sept. and am already getting anxious about it! Good scans mean I get to stay on the trial, bad scans and I am off with no other choices at this time... It's always something hu! Jean

    Lyrica
    Good luck, Mark and Jean with the possibility of trying Lyrica (if your oncs ok it). The one thing they will probably suggest you try is taking 75mg twice/day since that is a pretty standard dose. Ask if you can start at 150mg twice/day. The kind of nerve pain we are going through is not the standard "discomfort"... it's downright mega painful! The neurologist that my onc talked to before prescribing me the 150mg (vs the 75mg I was on) twice/day said that the 75mg is considered a low to med dose, so it's not like you would be taking this huge excessive dose at 150 twice/day. And you really do want to kick this nerve damage pain in the butt!! It's unbelievable just how painful damaged nerves can be! For those who don't have it, it is not something you ever think of... and if you did, you really can't imagine how horrid it is.

    Anywho... I'll keep my fingers crossed that you all get some relief... I sure feel for you!!

    Cheryl

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