Vent about Permanent Neuropathy
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That second article had the usual double talk about Acetyl L-Carnitine, with conflicting study results both good and not good. That is not something I have personal experience with.
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I quit taking it a couple of months after chemo since i couldn't verify any benefit either.
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I'm a little over 4 months out from chemo. Gabapentin has worked for me.
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In the results of clinical trials, as per the second article I posted, duloxetine (that's Cymbalta) seemed to have the best results for PAIN relief. (Again, nothing really addresses the numbness.) Venlafaxane (that's Effexor) also had some positive results. Lastly, the topical cream did some limited good. Nothing else, from clinical trials, had positive results reported. Just in hearing some first hand accounts, it does seem that Gabapentin could help too, but it did not achieve positive results in the trials so far.
Neither of the articles mention that Cymbalta does have more of an interaction with Tamoxifen (as per Drugs.com,) and Effexor is usually given instead (although I never quite understood that because Effexor still uses the same liver enzyme that is used for Tamoxifen) but I guess that the interaction is milder. Long story short, don't forget to check if anything used to treat CIPN pain might reduce the effectiveness of your BC treatment drugs.
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What did you find out about Befotiamine? I am interested because I take it
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That's okay, will do some reading about it.
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Had a horrible time w electric shocks in my foot every few minutes. That was several weeks ago. Now they have subsided. Wonder if it was some of the nerves waking up that it hurts hen they regenerate. Still numb though. Broke a toe the other day and hardly felt it. Wearing shoes in the house from now on!
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me, wearing ace bandage on foot now whenever walking any distance
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so my new fancy nuerologist insisted on a emg, my third
This guy says no nueropathy but dumb foot feeling is from spine issues, got tumor on spine and delightful hydrocephelus, one nuero guy says he can not do any thing to help me but, fortunately he was my second choice and met with other nuerosurgeon who says we need to treat the hydrocephelus first, gads had that for years and no one ever thought to do anything
So new brain mri in 3 months then spinal, tap and if that helps he would do a shunt
Delightful
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bb, the back has several problems and i have been fussing with dif docs for some time, the nueropathy is just one piece of the pie
I do like and respect this guy as a pal used him for back surgery in the past, she was the one who said get a nuerosurgeon not an ortho guy
He is attacking one thing at a time as conservative but very good , I have talked with several and feel this guy is right, they have done about 6 dif mris on my back and my brain, he also said be careful and don't fall so I am actually worried about that, legs feel heavy even though doc keeps saying my legs are strong, not sure if I feel that I would be able to get up
They ran tests for tons of stuff and at one time I thought I was going toget an ms diagnosed but I do have experience a plan
Now got a plan and just want to move forward
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I hope you find an answer for your stuff also, it is hard to figure out what sort of doc to use, and dang but no fan here of narcotics or surgery
Course stuff not fixed yet but will let you know how it all goes
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Guess I am lucky with lots of docs medicare is accepted by most all docs,
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I went to a podiatrist as I had stumbled because of the neuropathy and dislocated my toe. He said he felt the tightness between the 3rd and 4th metatarsal was sqeezing on rage nerve and causing the electric shock pain on the top of my foot. The neuropathy made my foot stiff and the stiffness made the pain worse. Had 3 intensive massages. The numbness is the same but stabbing pain has let up!
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I sure would be all for trying foot massage. I confess that a pedicure feels great
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hope you all get relief from foot pain. Mine is good lately for some unknown reason,but now I am getting head ach. Love
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my back Stinks, not sure I could bend over to cut my Toenails! And not that expensive around here
Little splurge
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I only did hormone therapy and rads, not sure if age but few hairs on legs, what I have i just ignore!
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I will let you, next thing is am mri in Nov a d then whatever, really want time to pass, tried to use the stationary bike at gym yesterday, felt light headed when I got up and don't get that
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When I go to the chiropractor for adjustment, he "adjusts" my right foot with the neuropathy. He manipulates my ankle, "cracks" my toes; and they have a tool called a "rapid release" that vibrates and they massage bottom of my foot, metatarsal area, etc. with it. It breaks up scar tissue beneath the skin. That treatment has given me the most relief, and I have been suffering with it for 3 years. Yeah it still bothers me every single day, but the cramping isn't near as bad as it was before.
FYI I am on on Gabapentin 300 3X a day. I don't see myself ever not taking it. It makes walking just bearable. No 5K's, but I can walk.
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Yesterday I had acupuncture. She put the needles in my right wrist and hand and my left toes felt much better.
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wow, may need to try that, great to hear
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Saw a rheumatologist, had labs and xrays. Results are all negative for everything tested that might be causing my pain. Its been determined to be all neuropathy. Gabapentin plus Tramadol isn't touching it so the rheumatologist suggested trying Cymbalta. Looking forward to some relief. A friend with the same situation (chemo induced neuropathy) is getting some relief with Lyrica plus Tramadol. Just wanted to let you all know in case you are looking for answers/relief also.
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Oh BlownAway - I am so sorry. Hope the Cymbalta works for you.
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good luck and hope it helps
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I had pretty severe neuropathy in my fingers and toes after chemo. Mine was the kind which was numbness/pins and needles rather than pain. It was VERY bothersome and affected my quality of life a lot. My acupuncturist has been following a protocol with needles to treat the neuropathy for over a year now. She also added in an infrared light several months ago. My neuropathy has improved quite a bit during this time. I no longer drop items and can put on my earrings and pick up small things. I still have some numbness at the ends of my fingertips and in my toes. I notice the problems with my toes in some shoes more than others. A few weeks ago I took a long walk wearing my hiking hoes and came back with a horrible-looking (and painful for a few days) blood blister on my big toe. I think this happened because I still cannot feel my toes properly and did not realize my shoes were rubbing the skin.
Good luck to everyone else who is experiencing this issue. I would highly recommend acupuncture. I take many supplements, and I added ALA (alpha lipoeic acid) since chemo because that is also supposed to help nerve damage.
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Bosum - HOORAY for a better place. Yes, we'll all take whatever good times come our way. But I do understand your frustration when you can't find the cause & effect.
Katmil - now that I'm trying to walk on a treadmill again (with numb feet) I get huge blisters on the balls of my feet after even 15 minutes. Hope the pads of my feet are just out of shape & they'll get hard again. My doc said to continue extra B-6 and B-12 in addition to a comprehensive multi vitimin.
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Funny Bosum - but you are exactly right. I was raised in California for heavens sake and I NEVER wore shoes. Nor in New Mexico, nor in Texas. Some people take off their bras when they get home from work. I took off my shoes. Once my feet went dead from CIPN, I stared wearing shoes like "everyone said" (dontcha love "everyone"?) to protect the feet I couldn't feel. So I KNOW you're absolutely right. I've just lost my pads. Guess I'll need to pad around w/no shoes again. (pun intended) Or can I be a diva and quit walking? Oops, not.
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I've done acupuncture for my back issues and the cost was about the same as for massage
We'll I am having surgery on Monday for hydrocephelus
Wondering if the nueropathy will change, can't walk without a cane now
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Proud - best of luck with your surgery. Hope the recovery will be swift. And wouldn't it be a miracle if the neuropathy decreased & changed for the better.
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trying not to expect too much regarding the foot sites
Just hoping for better balance0
