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Severe Pain with Peripheral Neuropathy Suggestions

Severe Pain with Peripheral Neuropathy Suggestions

Posted by CarlaLouise on Oct 15, 2020 12:00 pm

Hi everyone,

Does anyone have any recommendations on managing pain from CIPN? I have severe debilitating pain in my feet and legs. My doctor has prescribed morphine for pain management, and any sort of physical activity seems impossible at this point. Please send any suggestions or encouraging words my way!

Thank you in advance :)  

Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by Wendy Tea on Oct 15, 2020 12:31 pm

CarlaLouise‍  Welcome.  I am so sorry you are struggling.  Every one handles side effects differently.  Runner Girl‍  uses acupuncture to help with pain. I hope others have suggestions as to what worked for them. Please stay in touch. 
Healing takes time and opportunity. Wendy Tea

Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by Essjay on Oct 16, 2020 8:04 am

CarlaLouise‍ Im so sorry you are struggling. Morphine does not sound like the right treatment for neuropathy. Nerve pain needs different treatment eg. gaberpentin (far less addictive than morphine too). I would suggest you ask for a referral to a pain clinic to get appropriate treatment. You may also need to see a neurologist, but I’ve heard most oncologists wait to see if it does away after treatment before they refer you. Are you still receiving the chemo? I had my taxol treatment reduced when neuropathy started.

I hope you can find some relief very soon. Essjay 
Triple Negative Breast Cancer survivor since July 2018

Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by Babs1 on Oct 17, 2020 12:23 am

   Hi, peripheral neuropathy is Indeed nasty.  Chemo didn’t metabolize in my system so didn’t even make it thru one cycle before it became toxic.   My oncologist had no suggestions on how to deal with it so asked my family dr. for a referral to an neurologist.  It took about a month to see him.   After various tests, he confirmed small nerve fibre neuropathy.  Said it was permanent.  That it would likely progress, & that all you can do is try to manage the pain.  We started with duloxetine which worked great on hands but didn’t do much for feet & legs. It is truly a miracle when you can pick up a fork,  use the tv remote, and  even flush the toilet without wearing gloves to insulate the hands. This med seems to dull the nerves. I lost fine motor skills and dexterity, but well worth it.  He then added amitriptyline & after some playing around with dosages, he brought the pain in the feet & legs down as well.  Most of the time now the pain runs at about a 2.  I restrict walking to short distances as I learned that pushing it definitely wasn’t worth it but it gave me back a semblance of independence.  These meds are often used as anti anxiety meds at a dosage much higher than what I take.  it was discovered that they also work on neuropathy, and I can attest to that, and the side effects were nominal when weighed against the benefits.   My strong suggestion is to push for a referral to a specialist.  What the oncologists normally see is neuropathy that goes away in a short time frame, which I was told for the first 6 mos.   
  Hope they can find something that works for you!!!

Colon cancer, emergency surgery for 10.5cm tumour, Braf mutation, Failed chemo, but now 2 years NED. 

Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by 167!A on Oct 19, 2020 9:08 am

Thank you for commenting on how you are managing your side effects from neuropathy. I consider myself lucky that so far it is only affected my feet and legs and not my hands. I saw a neurologist and he confirmed that the damage to my feet is definitely due to side effects from chemo.
He advised that I look into ankle braces and orthotics. I have ankle braces being made and hopefully I will be able to be steadier on my feet with the support.
I had an occupational therapist visit my home. She provided links to arrange bath tub supports, walker and canes.A list of physical therapists was also provided.
I don't really know if any of the above will help but I feel like I am trying to take control of my life which is hard when your feet are hurting 24/7.
Still looking for the magic pill that can relieve the pain as the 3mg hydromorphone twice a day as well as 300mg of gabapentin three times a day, are not working to reduce the pain. I am also taking 3-4 drops of CBD oil at bedtime to assist with sleep. It appears to help for a few hours of deeper sleep at night. 
I am looking to find a CBD oil or cream to rub on my feet to ease the pain.
Hopefully some of the above might be of interest to other members.