Vent about Permanent Neuropathy
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Could you all please share what kind of shoes you have been able to wear? I wore Chacos during the summer, and that was OK. But it has gotten cold here and I need shoes!!
Please share what works for you.
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Annie - my podiatrist recommended Hoka. They have a nice wide toe box and lots of cushion. I LOVE them and am on my third pair. I bought the original Hoka Mach, but there are several styles. I actually bought a "sedate" black pair that I wear to "formal" occasions. You can check them out on line and look for local stores that carry the brand.
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My husband wears those! Thank you.
My toes are the big problem. I can hardly stand a sock.
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I have long feet and can't stand the socks rubbing my toes either. I finally ended up buying men's socks to have the extra toe room.
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So my MO didn’t seem to believe I have radiation induced neuropathy so I found this link. It also shows supplements that might help and medications.
https://www.nccn.org/patients/resources/life_with_...0 -
Good summary marijen. Note - it does list radiation as one of the causes. Neuropathy, like lymphadema, isn't at the forefront of most docs expertise. I think it's important to have a work up by a neurologist - and preferably at a major medical center where they see more cases that are not diabetes driven.
I've tried at one time or I am still using most of the supplements listed. Fortunately I don't have the debilitating & excruciating pain that many do. I just have no feeling in my feet & impaired feeling in my fingers. So of course - not much balance. My neurologist was honest up front and said it might get "better" over two years, but better would not likely ever be back to normal. Most neurologists will flat out say there is no cure - and really nothing they can do except prescribe drugs to kill the pain. I did have some improvement over the first two years post treatment, but now that I'm 5 years out I don't expect any changes.
Need a laugh for the day? Imagine me with no balance trying to approximate the Yoga "tree" pose - even holding on to a chair with one hand and my lifted foot only at my ankle w/the toe still touching the ground.
I was glad to read ExerciseGuru talking about her acupuncture. Maybe something else to try.
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Well from what I’ve read, radiation induced neuropathy is in the 1%-2% range but with more people surviving cancer longer, we are getting more long range side effects from breast cancer treatmentnow. I didn’t expect her to know much but we’ve got to start somewhere educating them! My pain is in arms, hands, legs, feet. Came on sort of quickly and never really had tingling and numbness. I reported a 7 on my pain level, now with medication it is a 4ish. I have also read it can still progress and like you said no cure. I am trying acupuncture but so far no improvement.
I took an allergy pill and that seemed to help.
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marijen - sorry you're having such pain.
Oh my - is this the ubiquitous Claritin? I can't believe how many 'off label' applications Claritin seems to have. It got me though Neulasta bone pain for sure. Although they are not 'proven' treatment for systemic or chronic inflammation, they sure seem to work for a lot of different things.
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Claritan is what made me think of an allergy pill but I’ve only got Allegra at the moment. Yes it’s been helpful by others accounts. But darn I can’t remember if I took it today or not.
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Hi Annie60 - for me, shoes with v good support all along my foot and LOTS of cushioning are most comfortable. For support, I like Vionic, some are more supportive than others. For cushioning, Clark's CloudStepper line is great, as are the Skechers On the Go line or any Skechers that feel extra cushy and supportive. QVC and Amazon are good sources for these. My fave shoes are my Adidas Cloudform sneakers (I don't use the laces) plus my 6 yr old Merrill slides for around the house.
Lanne
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Thanks Lanne- I am still in Chacos at the moment. I wore DH's Hokas and did ok. Nothing is going to feel very good with the pins and needles when I walk. My MO always wants to know if I'm walking - yes, but it is very painful. Sleeping is very difficult even with gabapentin. What other meds do you all use? This is miserable.
Annie
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I use a cream from a compounding pharmacy, with amitriptyline 2%, ketamine 5%, and lidocaine 5%. Prescribed for three times a day, but I only use it twice a day, because my insurance doesn't pay for it.
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Hi Annie - For neuropathy in my feet and sensitivity that continues in my boobs (the metal chest harness, 3cup sizes too small feeling I had after BMX/expanders and still have 16 months out from DIEP), I'm on Cymbalta (works on anxiety and neuropathy), glucosamine (helps with Letrozole side effects too) and tumeric/curcumin. All 3 help with nerve problems and I can tell the difference if I've missed any of them. I tried acupuncture right after BMX and that helped a bunch as well.
My foot problems have improved a lot in the 28 months since ending chemo - I'd say I'm at about 80% back to normal and can be on my feet walking for much longer periods with good shoes. Not having night pain any more and my balance is back to normal. Still can't handle walking outside barefoot. At this point my chest bothers me more than my feet - but my feet still feel like there are sandbags under my toes and the electric current feeling rarely goes away. But Cymbalta, glucosamine, and Tumeric definitely help.
Lanne
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It seems like I get better one day and the next is awful. Saw the NP in the MO office yesterday before HP. She just uped my dosage of gabapentin. Two different doctors have said HP would not make the neuropathy worse but it always seems worse after a treatment. I have 4 more HP's . I can not wait to be done
Lanne - I will try the glucosamine and Tumeric. I am taking Alpha Lipoic Acid as suggested by my PCP. Not seeing any results as of yet.
Annie
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It looks like this thread is not as busy but I will give it a shot.
I have CIPN that mostly effects my feet, they are constantly cold. I have to wear socks at all times, even during hot Texas summers.
Things have progressed in the last year. Hands now have tingles and I started having occasional stabbing pains in my shins at night. I went to a neurologist last summer and was given gabapentin and a NSAID.
In the last month things are getting worse. My feet hurt all the time. Walking makes it worse. I am woken up by excruciating stabbing pains in my shins and ankles.
I have a phone appointment with the neurologist tomorrow. What are the meds that I should expect? I already take tramadol for arthritic pain in my back. Am I screwed? I could manage before but this is really causing problems for my day to day life.
Long post...sorry. I just need some insight.
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Oh Tang&Chris, so sorry to hear about your progression. I too am in Texas and my feet are always cold. I wear socks when it's 98 degrees. And gloves when I'm reading the newspaper - or sometimes to bed.
I've found that magnesium helps with pains in my shins & calves - 250 or 500mg/day. I agree about the walking. Usually I participate in Silver Sneakers classes & chair yoga. Well none of those are options now so I've been walking every day. Now my feet hurt too.
I resisted gabapentin or Lyrica when I last saw the neurologist because my feet were mostly "dead" at the time. She said there really isn't a cure, only meds to mitigate pain. If my fingers start tingling more I'll be knocking on her door again. Maybe your doc could switch you to Lyrica? Sorry I'm not more help. Please let us know what happens.
The thing that was best for me was the Chair Yoga class at Memorial hospital. Just the breathing & the meditation made a big difference. I hope that will start back up eventually.
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I have radiation induced peripheral neuropathy. Pain so bad I wanted to curl up in a ball. Shooting pains in my legs and feet, arms and hands. My pain management doctor prescribed Low dose naltrexone she began with a 2.5 milligram dose and doubled it to 5mg after three months. The difference is like night and day. I could feel relief with the first pill. LDN has other great benefits. It may even help with cancer. It’s about $1 per day and insurance doesn’t cover but it’s worth it.
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I have a prescription topical cream that is compounded, so insurance does not cover it. It is very effective. I have been walking 6000 steps a day, and my feet are feeling it. I also have severe arthritis in my left foot, and of course surgery is not an option at this time. Hoping that the gym re-opens as soon as it is safe. Some people are taking a challenge to Governor Evers "safer at home order" to court. Wisconsin has wide expanses of country, with urban areas concentrated on the east coast. I think that it is time to target hotspots, while opening up the rural, with selectively imposed travel bans inter-county. But what do I know? Other than I want to get back to the gym.
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Have any of you tried Cymbalta? I read an article on this site, Neuropathy: Causes and Treatments. The dr said that Cymbalta really helped the pain. I have a prescription, but I only took it once. It made me feel awful. I was curious is anyone else is taking it and do the SE's get from it get easier. I am very tired of taking new pills to compensate for another treatment.
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I had my appointment and am going to start back on gabapentin and a stronger NSAID. she also prescribed steroids but I'm not sure i will take it.
It's been a rough day physically and emotionally. I feel sad that I'm still struggling with issues from breast cancer. I'm 46 and feel much older.
Thanka for listening.
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Annie - hope someone will chime in about Cymbalta. I haven't taken it.
Tang&Chris - so sorry about your discouraging day. I'm much older but some days I'd love to figure out which aches & pains were caused by aging and which by breast cancer. And I'd love to 'stride' along the street like I used to do. I'm not much of a Pollyana anymore, but hoping the gabepentin works. Please do check back & let us know.
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I have been trying to get off of Venlafaxine, but ended up being in a lot of pain. I think I will stay on it.
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Annie60: I got neuropathy in both feet after taxotere and taxol treatments. I was given Cymbalta and Gabapentin. Unfortunately, I didn't get any relief. Years ago, I tried the same combo for shingles and they didn't work then either. I didn't have any side effects from Cymbalta but got sleepy with Gabapentin. Sometimes, I soak my feet in an Epsom salts bath and it seems to give some temporary relief. Now, I'm trying the topical creams like Blue Emu and Lidocaine to see if that can help. It's very annoying especially when trying to sleep. Try the drug combo for a little while. Maybe you will be one of the lucky ones and get relief. Hopefully, the side effects will go away in a few days. Good luck!
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Can't remember if I mentioned it, but some people have found great relief with acupuncture. Of course some not at all, but still...
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I tried acupuncture for several months but it didn't seem to really help. After COVID, I might try again.
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I've been using gabapentin for almost a year - three times a day. MO had me add ibuprofen for the pain from letrozole. I think it has helped some with the neuropathy. Some nights my toes are just numb - some I can't sleep from the pain. It will be a year in May since I has Taxol - my hands are almost normal finally - I have doubts that my feet will come back.
I, too, would like to figure out what is normal for my age pain and what is chemo and AI.
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I am just starting Gabapentin for the neuropathy in my feet. Other than the sleepiness, is anyone else experiencing other side effects? I also use CBD oil to sleep. Will the 300mg capsules work with that? How long does it take for the medication to make a difference? Sure hope this works. No pain, but having balance issues with my feet being numb all the time.
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JCS - I know gabapentin is given for the pain caused by neuropathy (along with several other things). I don't believe it will do anything for numbness or balance issues. My last visit to the neurologist confirmed she can give me several different things to try for pain - but there are no drugs for the numbness. I have very little pain & only occasionally, so I'm not taking drugs.
I may try accupuncture once we're back to full speed again.
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The best remedy for the numbness is foot massage. It wakes those nerves up. There may be a tradeoff with pain, though.
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Thanks for the info. I have been taking Vit B6 for the numbness, but it wasn’t doing much. The PA also suggested acupuncture, but no one is doing that right now. I walk several miles daily and did not want to find out that was bad for my feet. She said it isn’t bad, but being on your feet can cause inflammation. That might aggravate the neuropathy. It is always something
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