Vent about Permanent Neuropathy
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HI, LynVLH
I join a couple of others here in thinking that acupuncture really helps with neuropathy. I have been going to an acupuncture doc (Eastern-style acupuncture) since 2015 and it really seems to help the symptoms. At first you have to go often for a few weeks, but then it's maintenance and I am still trying to maintain. Nothing is perfect!
I think too, that you have a good chance of getting over it, I hope so.
I think trying to stay strong is an excellent idea, I agree.
Mary
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VLH - I went to a neurologist right after chemo. She said pretty much what Bosum said - you can expect to get better during the next 3 years. Unfortunately she clarified her statement that 'better' means from where I was at the point - not necessarily 'better' like where I was before cancer. Agree - keep yourself in the best shape you can.
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Thanks, Mary and MinusTwo!
Lyn
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This is rad wk#3 out of 6. I thought neuropathy and arthritis were under control. All of a sudden, I get pins and needles in wider range than before.
I dearly hope they calm down after rads are over. Losing patience a bit.
Mimi
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HI, Mimi
Sorry you find yourself with this, I hope your CIPN gets better and/or goes away with time.
I tried unsuccessfully to link to an article, doesn't have any answers for us really, but it did show that this condition is being studied. This side effect is apparently even more common than I thought. I was able to read this article this morning, but now it is being blocked.
Mary
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Bosum - I agree that something "new" may be up. Do you have pain or just increasing weakness? I can't think of another doc that would be better than a neurologist. Did they do a full work up? Mine offered but I was still in chemo so I deferred that.
I fell a couple of times when I was still in active chemo treatment. My legs just crumpled and I slid to the ground. But not since.
I'm also approaching 4 years. I got some better over a two-three year period but then seemed to level off. Now - my fingers are usually fine. My feet are mostly dead. Sometimes the lack of feeling seems to travel up my calves. This does cause balance issues, but I'm so grateful I don't have pain.
I started exercising this year in March, hoping that strengthening my muscles would help. It was hard to find shoes that would work with dead feet. I go to a Silver Sneakers class, where we have a chair to hold on to if necessary, and added water aerobics this summer. I know my leg muscles are getting stronger & my core, but don't see any change in my feet. Regarding my balance, it's interesting that I have to use the railing for the 3 steps out of the pool now and I have to keep one arm touching the side of the shower when I close my eyes to wash my face. I have to be very deliberate where I'm placing my feet. As someone who used to stride out - even up hills - this is still very upsetting.
Later this fall I do plan to visit the neurologist again. I don't know what I'm expecting, but I haven't checked in with her for 4 years so I'll give it one more shot. Of course I'll pass along any good ideas she might have - but I expect you're right - they all push drugs.
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guys,
I have started doing massage my feet, also rollng a tennie ball on the bottom of my feet
Dumb stuff but do think it s helpng
Course i am also in middle of à course of taxol so trying everything to get thr nueropathy to at least not get worse
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I'm sorry that the neuropathy has worsened, BosumBlues. :-(
MinusTwo, my plastic surgeon suggested seeing a neurologist while my MO only mentioned PT. I did wonder what a neurologist might offer other than drugs. I'm sorry that your exercise plan hasn't helped your feet, but stronger muscles has to be a good thing.
Lyn
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VLH - both my MO and my BS both suggested a neurologist. From that visit almost 4 years ago, I remember she said there were extensive tests that could be done. But maybe only to confirm the diagnosis? It will be interesting to re-connect with her. I'm not expecting much, but nothing ventured, nothing gained.
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Thanks, MinusTwo. There is a STAR Rehab facility one floor down from my MO's office so that may be why she automatically thinks of PT / OT as a preliminary referral.
Lyn
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Bosom, MinusTwo
I think this CIPN is very changeable, and symptoms can stay the same for a while, and then all of a sudden, there's something new. Yesterday I did a little yard work, and I knew it was too hot and I shouldn't but did anyway. Then I came in and did some canning, which meant standing in the kitchen on tile. Last night when I sat down to relax my ankles felt broken, just painful and my legs ached. I knew what it was, it was the standing, and the heat, and the nerves going crazy, it comes together to be miserable sometimes. Last week on a cool day I cut down maybe a dozen small trees I wanted to get rid of, picked all the stuff up, threw it in truck and took it to brushpile. That wasn't nearly as bad later because it was cooler, I guess. It's really hard to keep up with symptoms, I never know what to expect; except if I do much of anything in excess humid heat I will be screwed up, and the neuropathy is a big part of it.
Good luck with the neurologist, and let us know if you find anything else out. I have been twice and don't plan to go back unless I hear there is something new out there. I am sad about all this too, I love working outside and hate that I am so limited in what I can do.
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Bosom,
I am so sorry that you have weakness to that degree. I do believe I am better and since acupuncture is really the only therapy I am doing for the CIPN I give it some credit. It has especially helped with the pins and needles aspect, I think. Also, these things I mentioned doing I do in spite of how I feel, I just get frustrated because I can't do them very long and then I pay for it with pain and exhaustion.
The cortisone shot I got in my knee a few months ago is wearing off, that doesn't help things either. But you are right, I should be grateful because things could be worse; and I am, I just haven't reached "acceptance" of my new reality yet, that may take some time yet.
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Bosom, I do have a cream I use in the evenings when I have a lot of burning in feet and ankles, my GP ordered it from a compounding pharmacy. It has an impossible name, but here it is: DIC/CLON/GAB/IMIP/LIDO/4/0.2/6/3/5% PENTOX3%LIPO. It actually does help more than anything I have found over the counter. My insurance did not pay for it, it was $40, but the bottle lasts a long time.
I have been more active, and I think my muscles are better, but the weakness still sets in. Especially if I let myself get over-tired, then my legs are like 2 weights I am dragging around, ugh. As you said, and as I was told, because the nerves are not properly sending signals to the muscles. There is an exercise/test for the leg/glute strength, you sit towards the front of a straight chair, do not use your arms, and stand up as many times as you can in a measured length of time. I didn't do very well the first time I did this with a therapist. I have been more active since then, and I am a little better at it now.
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Food sources are the best form of vitamins.
My neurology appointment is next Wednesday. I'd like to be able to exercise again. My ankles absolutely throb if I overdo it. I am worried about my lack of cardio work.
I am wearing a brace fitted by an orthopedist on one ankle because I think I sprained it. I haven't been able to walk without limping in two months. I miss my active lifestyle.
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Bosom, a compounding pharmacy is a pharmacy that mixes different substances together to make medications. Such as; I was sent to a compounding pharmacy for a liquid to gargle when my mouth broke out in sores during chemo. The neuropathy compound had to be mailed to me, the local place didn't do that one, it had to come from a big-city pharmacy, this was all new to me too.
That is a scary article you linked to, I have been taking different forms of B vitamins for years.
Gardengypsy, I know what you mean about the ankles, if I stand too much or walk on unlevel ground it bothers my ankles. Some nights they feel like they are broken. My bone density test was normal, so it's not that, just another thing about neuropathy.
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Lita, I also make dolls (and jewellery and pottery and...). Where do you get your stands? Do you make your own patterns or buy them? I'm starting taxotere in about 10 days and I'm worried about my ability to use my hands well enough to continue my "art." (And yes, you're an artist!)
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Bosom,
My MO ordered the liquid for mouth sores from the compounding pharmacy, and I just picked it up. The neuropathy cream was ordered by my GP, and it was mailed to me. I don't know if we can get things ourselves there without prescription or only through get it through docs, although I'm thinking through docs. In both cases, insurance did not pay even with subscription.
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Bosum~ I think it's absolutely essential that we keep moving - no matter what. As soon as my ankle heals, I am right behind you.
I was just approved for SSDI. A bit shocking to be labeled "permanently disabled", but also validating.
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glad you got the approval for ssdi but i can only imagine how that feels. At least it helps to ease some of he financial concerns
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Ping pong - I buy the stands from Amazon. They come in various sizes and after some trial and error I found this one which works nicely, although I found that tying her waist to the post gives a better "look" for photos.
I started with a pattern for an American Girl-type cloth doll that I found on Etsy and then resized and changed just about everything about her! Her outfits were also created that way - start with an existing pattern and alter the heck out of it!
I'd love to see pictures of your work - do you sell online? And how is your chemo going?
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Bosom, I think walking a mile is great, good for you! I don't usually walk that far, I do a bit of outside labor both because it needs doing and I enjoy it. I find if I walk too far then the strength that is in my legs is spent and I can't do much else, I try to do both but have to ration.....not to mention the knee pain kicks in too. I did get a cortisone shot in knee yesterday but he gave me a weaker shot, because I told them I got the steroid flushed face last time. The doc said that's not normal, I hope this lighter shot does as well as the last one.
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Today's neurological consultation included an exam, and a recommendation for muscle and nerve testing and blood tests. This was the first time I've been to a neurologist for my neuropathy, which worsened months after chemo ended.
I was very surprised by the fact he was perplexed by some of my symptoms. While he did say that I had symptoms of CIPN, he did not consider the following symptoms I experience as part of the neuropathy:
- Severe ankle amd lower leg pain after strenuous exercise.
- Difficulty getting up the stairs, out of the car, out of the water, or up from a chair.
- Numbness in the feet after lying down.
- General weakness in the legs.
So, I will start the testing and increase my dosage of Gabapentin.
My friends on this thread have mentioned the ankle/leg pain and weakness, yet he did not think they had anything to do with the neuropathy.
Not sure that I agree.
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Wow, very interesting, Gypsy. I am so interested to find out what your muscle and nerve tests tell you. When I had the EEG, that doctor told me that the nerves in my upper legs were affected, and would not signal my muscles properly, and thus the weakness. The ankle pain is puzzling to me too, I don't always have it, depends on what I do. But it seems to be activity-dependent, as is the burning, pins and needles in the feet, and that feeling will go up my calves too at times. I just lumped it all together, maybe you will find something out. At least it seems as if he is listening to you and taking an interest. Thanks for the update! Mary
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Bosom, rather coincidentally I had a call from my gynocologist's office yesterday, the nurse said that the results from my bone density test were very good. They were good enough that I don't have to be retested for 5 years, and I have been getting tested every 2 years. So that was good news, it is always nice to hear that something is working right! I do know that I have been taking my Vitamin D3 and Calcium-Magnesium more or less faithfully!
It is the second day after my cortisone shot in the knee, and my face is flushed red from it, as it always does. The doc said that is an unusual reaction, and I should take a pic of myself to show him. I got red always with the steroid pills that went with the chemo, I thought that was normal. I don't know about your back pain causing your CIPN, I don't know why we were susceptible. I remember reading about it as a possible side effect from the chemo, they made it sound so minor and transitory.
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Bosom, my diagnosis was sensorimotor axonal peripheral polyneuropathy. When I showed the nerve and muscle test results to my acupuncture doc, he said it wasn't too severe, and he thought he could help. And I really think he has helped. But I think I have to accept that I have system-wide neuropathy. I have a diabetic friend who has really bad neuropathy, but just in his feet. He has to take mega-doses of Gabapentin just to function. I don't know what my point is, but I just think the docs do not have a handle on this chemo-induced neuropathy, but they are finally realizing it is a real thing that doesn't always go away.
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Right? Damn it all - why do we know more than the guys with the medical degrees?
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Bosom,
My EEG was done by a physiatrist, a doctor who specializes in treating conditions involving spine, brain, nerves, bones, muscles, ligaments etc. They will also oversee and prescribe rehab for various conditions, especially where things are causing weakness. My diagnosis was on my report after I was in his office, they gave me the entire transcript of the visit. All the neurologist did when I saw him was recommend drugs. I think they say our conditions are not severe because if this stuff gets really severe it can affect everything, digestion, breathing, and many bodily functions. So I guess we should consider ourselves lucky?
I did read about the nerve biopsy, but no doc offered it. I feel like you, if there's nothing to be done about it anyway, what's the point?
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The understudied consequences of peripheral neuropathy after chemotherapy
Here's a release about CIPN highlighting the need to study this issue.
Right now, I'm doing six ultrasound treatments on my feet, to see if that has any effect. Having had "frost bitten feet" for over two years now, I'm halfway through these treatments, and though I wouldn't say that I notice improvement in how my feet feel, I am noticing some small differences, which I choose to interpret as cause for optimism. Time will tell
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Bosom, he didn't say it was permanent, he said it could be and probably was. After a while if the nerves don't regenerate, they probably won't. But I don't think anyone can say "never" for sure.
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Bosom, my MO was pretty explicit about many side effects, including cardiomyopathy and leukaemia, but foregoing chemo was never really an option for me. By the end of chemo, my neuropathy seemed pretty severe to me - I was numb from the wrists down, and numb and painful from the knees down. I did have significant improvement over the first year, in that my hands are pretty good now. I can hold a pen and a cup of coffee and touch type, and only have some residual numbness and weakness in my thumbs and index fingers. Overall, my legs and feet are better, and i am no longer cane dependent, and just keep my cane in my car for when I am in conditions that are slippery or uneven or unfamiliar. But... the sensation of having frozen feet persists, and if I am tired the numbness climbs up my legs, and my gait deteriorates markedly. Who knew that my treatment would take away my feet? Not me.
At the moment, the focus seems to be on prevention, which is good, but it doesn't do much for those of us dealing with persistent neuropathy. I have found the transition from a (prediagnosis) healthy person to a (post treatment) chronic pain patient very difficult. I can "deal" most of the time, but once in a while I find it overwhelming
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