Hi, my name is Mitou! Peripheral Neuropathy

Mitou

I had chemo in 2015 ( R-CHOP) for high-grade Lymphoma and developed PN in my feet. I still have this debilitating pain. Some days are not too bad when I am up and about. I can walk but unless I wear my very special trainers( Joya) that are very supportive and 'bouncy', I get sore and get very hot on the soles of my feet. It is a complete nightmare, I feel. It's been 8 years. I had small prolapse of the L4-L5 disc that cause Sciatica and foot drop on my left side. I managed through a diligent exercise routine and el-nerve stimulation to get my foot to dorsiflex again, but it made more numbness and pins and needles to the left foot..100 times worse. I took Duloxetine for 2 years but I didn't like the side effects they had on me, so I stopped. I have read that someone cut out carbs, and I think I am going to try this. Also maybe cut out wine altogether. I do not drink much, and only red wine, but I am prepared to try just about anything. I heard or read somewhere that a person used some cream ( nappy-rash cream?) on their feet and that it had helped. What brand would that be? I would try this as well. Nighttime is the worst. My feet are burning and hot and so so painful. I sometimes take Nytol but I do not like to feel so drowsy in the morning and tablets of this kind have this effect on me. I like to hear what others have tried. My oncologist said my neuropathy would go away eventually but it hasn't. I think I will have this nightmare forever, it seems. I meditate and manifest that "I have great feet that are healed and not painful"..I don't smoke. I miss doing long walks but somehow lately this has made my feet worse. I don't know why? 

chiarieds

Hi @Mitou - & welcome to the forum. I'm sorry you have developed PN following chemo; I have daily neuropathic pain due to another disorder, so have just a little understanding. As well as finding other sufferers in this community, I don't know if you'll find the Macmillan site referencing PN helpful: https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/peripheral-neuropathy   they also have an online community.

I think a healthy diet helps everyone.....think mediterranean diet, which doesn't exclude carbs (tho much, much better if wholegrain, i.e. wholwheat pasta, brown rice, etc), plenty of vegetables & fruit; eat more fish including salmon, mackerel, sardines; use beans & pulses. Avoid processed food, & keep hydrated.

It sounds like you're doing all of the right things, just hope things may improve for you. Some things you've obviously explored, but you may be interested in this post about chronic/persistent pain: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain

I do have a daily battle with neuropathic pain, but have personally found gentle exercise, diaphragmatic breathing, distraction (reading, listening to music, watching a film, etc), & mindfulness help to reduce it somewhat.

Alex_Alumni

Hello and welcome to the community @Mitou, thank you for reaching out. I'm sorry to hear that you're having a hard time managing the pain caused by your PN, and I hope we can be of some support here on the forum. 

To help others share their thoughts, I've moved your post over into our 'Chronic Pain and Pain Management Category'. If there's anything we've missed or something you feel we can help with, let us know