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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!!!

Babs
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.

Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by CCC888 on Oct 21, 2020 11:48 pm

Hi CarlaLouise‍ ,
Which chemo were you on ? I finished my 8 cycles Paclitaxol last year. My understanding from other breast forums frozen gloves/frozen socks may help with CIPN. I had asked the chemo nurse for the gloves in 2 cycles but both time they said "No more available". 😒 Few times I saw other ladies were using it and asked them where they got it. They said their nurse gave it to them automatically. 😡 My finger tips still can't sense the temperature. Well.....a small price to pay 😀

By the way, I have found the below information from BC cancer agency website and you may find helpful.
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Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by Sher49 on Oct 22, 2020 3:05 am

I am also dealing with neuropathy from chemotherapy only in my feet which I guess makes me lucky that I do not have it in my hands whatsoever. I am thankful for that. However, the pain in my feet can get quite overwhelming sometimes and I am always searching for ways to dull the pain I have just purchased a foot bath spa and I'm going to try soaking my feet with epsom salt and trying to buff some of the dead skin off of it as much as I can dealing with the pain I don't take anything for the pain at this point I was referred to someone who deals with neuropathy due to chemo however that appointment was canceled due to covid-19 and I don't know when it will be rescheduled. Any help suggestions I'll take anything that you guys can give me thanks so much Sher49

Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by Sher49 on Oct 22, 2020 3:07 am

I forgot to mention that my neuropathy has taken me off of my feet. What a silly thing to forget to mention there's that brain fog again lol. I currently use a walker and that can also be used as a wheelchair and I use it as a wheelchair much more than I use it as a walker I am very limited in the number of steps that I can take.

Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by 167!A on Oct 27, 2020 9:46 am

Thank you everyone for your input above. It is good to hear what everyone is doing to try to find solutions.
I am very thankful that I don't have neuropathy in my hands as well as my feet. It would be overwhelming for sure. My heart goes out to anyone suffering with both.
I now have my ankle braces to help steady me when I am on my feet. It does nothing for the pain in my feet but allows me to walk more safely and secure with a cane or a walker.
I also started with a physiotherapist twice a week to hopefully help to strengthen my legs which are now weak from not walking very much.
I keep reminding myself that my last taxol treatment was Aug.12.20 so only 2.5months in. I understand that it will take 3-6months before you see what nerve damage is permanent. Fingers crossed that it won't be too bad and I get my mobility back.
I had no idea that you could refuse the taxol treatment. It wasn't until my 6th treatment and I was in terrible pain in my feet that they dropped the taxol. I think if I had said no to the taxol for my 5th treatment perhaps the neuropathy wouldn't have been so bad.I wasn't aware that was an option.
So to anyone currently going through treatment, you can speak to your oncologist about changing your chemo treatments if the side effects are becoming too much to manage.
I do not find that the hydromorphone does anything for the 24/7 foot pain so I will talk to my GP about the duloxetine and amitriptyline as suggested by another member above. It would be nice to get a break from the pain for a bit.
Thank you everyone for your input.

Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by Lillee on Oct 28, 2020 10:55 am

I suffer from Peripheral Neuropathy and have had it to some degree for the last 35 years. I use Gabapentin, an anti-seizure medication for it. It works for me although not all PN responds to it. Many of us use a variety of meds until we find one that works for us. If I forget a dose during the day or spend too much time on my feet during the day I will be tortured at night with pain. Then I use the hydromorphone to calm the nerves down so I can sleep. But PN can be very hard to treat. About 5 years ago they were able to determine that I have severe nerve damage in the toes of both feet. It is permanent.

Then chemo enters the picture. They decided not to give me one of the meds because it can cause neuropathic pain in the feet. But I didn't respond well to the other medication they opted for. Initially I was on pills but my hands and feet started to peel badly and I had trouble with pain in my feet so they switched to infusions. Two days after a treatment I couldn't walk. it felt like walking on razor blades. But this was very different than my usual PH in my toes. This was in my heel. My toes burn. The heel was razor blades. Hydromorphone didn't work on it. I was recommended to try 2-500mg Tylenol and then switch back and forth to Advil. It seems to be working. Now it just feels like I am walking on a bad bruise. I wasn't walking for 11 days but yesterday I was able to walk a bit in the house using my walker which I never normally use inside. 

FOR ME, this is not my usual NP. There is a very distinct difference between the two.

Due to the severity of the pain they have opted to terminate chemo. I had 3 partial cycles of pills and 4 infusions. They think that is enough. So do I.

Hydrate. Hydrate. Hydrate. Before a cycle and after.

Also cream your feet. I am using Eucerin 5%. I slather it on at night and put on a lightweight pair of socks before I get into bed. It seems to be minimizing the peeling

 

Re: Severe Pain with Peripheral Neuropathy Suggestions

Posted by CCC888 on Oct 29, 2020 12:36 am

Just aware I accidentally deleted piece of information which I found from BC cancer agency website and re-attached.
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