Vent about Permanent Neuropathy
Comments
-
QuinnC, got it. My variation is that my feet, like yours, probably are reacting to pressure over the course of a day; however, my feet will take warm ambient temp. over cold any day. My feel feel more normal in the summer, despite the "friction burns." The colder weather and my feet getting cold tends to make them feel achy like arthritis (and maybe it is arthritis) but also I get a "crushed" feeling along with the cold. This was much worse in the first year. I used to say it was like being in a fishing shanty with an elephant standing on my feet.
0 -
Elimar - I recently sprained my ankle (not neuropathy related) and the orthopedist told me I had terrible arthritis on the tops of my feet (near the ankle). Really? He asked if I was in pain. "No, will I be?" I said. His response, was "If you aren't now, you probably will never be." Phew! Of course, now that I know, I do notice some pain, but nothing that noticeable or as bad as the neuropathy (funny how we can distinguish different types of sensations in our feet).
"A crushed feeling," like someone squeezing your feet from the top and bottom?
I think the heat thing might be about swelling, further putting pressure on the screwed up nerves. I don't know. I started Vit B spray last fall and my neuropathy has gotten a lot better, but that's not a controlled study, so can't say that is why. I can now go on hikes, even when it is warm (though not always) and not even think of my feet.
0 -
Yes, I have the same things going on. I have continued to take B-6 and B-12 since my original chemo.
But my major complaint is lack of feeling in my toes & the balls of my feet. This causes lack of balance. Unfortunately because I can not feel anything, I ended up falling when I was on vacation. Broke my humerus in four places and had my shoulder & arm immobilized for 6-8 weeks. Now I'm in the 2nd week of PT because my shoulder & arm no longer work after being immobilized for so long. So, thanks neuropathy - that I can't open my car door, or move the shower curtain, or get the dishes out of the cupboard or a hundred other every day things. And thank heavens it was my left (non-dominant) arm.
As you can imagine, now my balance is even more shaky. I HATE walking like an old lady.
0 -
MinusTwo, I hope the PT will be helpful to restore your mobility and improve your balance. Just one of the many ways we continue to pay for BC and its treatment. Ugggh!
(I had one fall, and it was way back in the first month of my CIPN. I fell because I was sitting and my foot must have fallen asleep (circulatory, I mean) but because of the CIPN I could not tell that had happened. So, when I went to rise, it was like standing on nothing and I toppled sideways into a restaurant chair and wall. It gave me a bad ankle sprain that I can still feel twinges from even now. Luckily, I have not had another incident since then.)
0 -
Bosum - I sure wish there were a Yoga class somewhere close. I know myself too well to believe that I would drive 30 minutes to a class. Not happening! But I like the idea about retraining the brain. I know if I started walking & building up core & leg strength again, my balance would be better.
0 -
Hi Ladies:
I am 7 months out from chemotherapy. I have generalized decreased sensation in my feet and toes and an overall constant, low grade foot pain. My toes often feel like they are about to cramp. Those first few steps in the morning are particularly painful, but then the intensity subsides. I feel very much like a 90 year old when I get up and shuffle through the pain. I also drop things a lot and occasionally have pain in my hands, but not much.
I read somewhere, maybe in this board, that you can put your feet and hands in ice packs, like the cold caps used to prevent hair loss, and that decreases the chances of getting CIPN. I think the post I read was dated 2008, so this is not new information. I am so disappointed that my oncologist and/or the chemo prep class didn't discuss these preventative measures. So little time was spent on discussing these side effects. I feel as if the oncologists are so focused on getting rid of the cancer at all costs, that they under-emphasize or even invalidate patients with these life altering side effects.
I have told my oncologist at every recheck visit that I have PN. I read about trying alpha lipoic acid and I asked my doctor what she thought. She said I could try it, but did not know a dosage. Since CIPN is so common, I expected the oncologist to be knowledgeable about treatment options. She didn't have much to offer me other than, "give it time, it may get better". I went to an integrative medicine specialist and have been trying several supplements- Carnitine, glutamine, alpha lipoic acid, cercumin and fish oil. I haven't really felt a difference. I am now trying acupuncture, massage and nerve stimulation and may try some herbal medicines. It is frustrating because I feel like once the cancer treatment is finished, they feel their job is done and abandon you to deal with the side effects on your own.
I do appreciate that I am cancer free. I am thankful and feel blessed that I handled chemotherapy with minimal discomfort. I am also thankful that I don't have the balance and falling issues that many of you are experiencing. However, it is hard to accept that this may be the new "normal".
0 -
Laurasd - My onco has me on 600 mg of Gabapentin and it has really helped with my "toxic poly neuropathy" and also the joint/muscle pain associated with Tamoxifen. I can only take it at night due to its own side effects ( brain fog, drowsiness, etc) She also has me on 150 mg of Effexor to relieve Tamo hot flashes.
0 -
bb, so you were walking with heavy flat footed? Gee that is me and the nuero guy I saw gave me a pt slip for gait therapy
Gonna keep in mind but for now gonna see the nuer surgeon next week for the weakness in my legs
0 -
Wonder why a skin biopsy cept maybe she figured as a survivor, insurance cover it
Weird, will let you know how new doc goes
0 -
I had the needle test done by 2 dif guys, both basically showed same although I only have report from one but picking up the other one tomorrow
I did not have chemo but did take al for 5 year
I am guessing mine is that or old injury
0 -
I'm looking forward to your report also Proud. Like Bosum, I got tired of doctors. Since there is only occasional pain and 'they' can't do anything to fix the the "frozen ice block" feet, I said thank you & good bye. But falling because I couldn't feel a tiny step with my feet & breaking my arm in four places has scared the crap out of me. Maybe when I finish PT for the shoulder I'll go back to the neurologist & see what's new.
0 -
Bosum - I agree I need balance exercises - but I have to finish shoulder/arm PT first since I still can't lift my arm to get things out of the cupboard or dry my back or even close my own car door. UGH!! I have started going to the gym after PT and riding on the recumbent bike and walking the treadmill for awhile. We'll see how long that lasts.
0 -
I belong to a gym close to my house, yeah recumbent bike, treadmill o some days and pool help all things
I have done a ton of pt and basically sort of tired of that, course at one point I overdid the pt thing and totally messed my back so now going easy and figure it need advise
0 -
My old normal "smart" nerves: Someone is rubbing a feather over my pinky toe and I can feel it.
My new normal "dumb" nerves: Someone is rubbing coarse sandpaper on my pinky toe and I can feel it. Or it it tree bark? Maybe it is berber carpeting? Well, I'm pretty sure there is something touching me anyway.
0 -
Eli - funny girl. I can feel my pinky toe. Also the tops of the next 3 toes, but not the bottoms. What bothers me the most is the lack of feeling in the balls of my feet. Unfortunately I'm walking like an old lady since I'm afraid to fall again after I broke my arm (because I couldn't feel my feet no less).
0 -
Minustwo. Are you describing my foot exactly? Numb like that and get fierce electric shocks at intervals Fell a couple of months back and broke a rib. Sometimes throat suddenly feel wooden and I start limping So hard to predict.
0 -
I don't feel in danger of falling...so sorry to hear that more than a few have fallen and broken something. What kind of reactions do the doctors have when hearing the cause is the CIPN? Is it an "oh well, that happens" or a more humane reaction?
Feeling in the tops of my toes came back to almost normal. The "necks" of my toes did also but the toe pads are numb, as are the balls of my feet. I think that the new nerves have a hard time regrowing into the more callousy areas...just guessing.
0 -
I have had the emg test done twice.....One said I have neuropathy and one said No! But I know my feet are Numb!
So, got new set of nuerologist and nuerosurgeon and the nuero guy wants to redo the test himself as he thinks other test were goofies
Blood tests today to see if I am vit b deficient or if lyme is present. I think I will test positive on both but this time hoping to have something in former off treatment
0 -
Hi all...So sorry you are dealing with neuropathy. I have CIDP which is an autoimmune neuropathy. Ive had it for 15 years prior to my BC diagnosis. So I truly know how you all feel. It has been life altering for me. Much more so than my BC diagnosis. It infuriates me that docs do not disclose this very serious SE of chemotherapy. Not saying you shouldn't do chemo. Just saying it should be discussed before making the decision whether or not to have it. IMO it's important to remember that no matter what, it is a choice, your choice, not the docs. We all need to make our own informed treatment decisions and I respect all of them. Good luck everyone.
0 -
Eli - I haven't seen my MO since I broke my arm, but I'll report his reaction when I do. I expect 'ho-hum'. The ortho doc is an "upper arm/shoulder" specialist & wasn't interested in feet problems. Oh, other than to tell me if I fell again I'd be in surgery.
ChloesMom - really weird about the numb throat.
Proud - I've been thinking I might go back to the neurologist & get the tests done, but I'm so sick of docs. And I'm not sure what an updated diagnosis would gain me since there's nothing to be done. Also I'm fortunate that while I have profound numbness, I rarely have any pain.
Bosum - sorry to hear you're back to square one.
0 -
proudtospin, What will a third neurologist do for you? NOT help your CIPN, and there are fifty pages right here to suggest that. Sure you can go to a third neurologist as a "tiebreaker" on the other two tests, but why? You DO have neuropathy. You already know that, test or no test.
If you have pain, a doc will give you some drugs that might help. If you have balance issues, PT might help. Of the supplements B-6 (maybe B-12) might be of help. If you are numb, you are out of luck. That pretty much condenses the last 50 pages into four sentences.
Does no one else become tired of seeing (and paying) doctors that cannot help?
MT, just missed seeing your post but, again I say, until some miracle breakthrough occurs, I just don't think more docs are the answer. Of course, we are all free to spend our money as we choose, and tune out the opinions of people who write on discussion boards also.
0 -
Yes, I get tired of seeing doctors whether they might be useful or not. I want to throw all of them in the trash so my life doesn't revolve around doc appointments.
0 -
well my junk started as a back issue and have had made ing back issue for a couple years now
All started when I started with a dif trainer at my gym, it felt like someone stuck a knife in my lower back
Have done a ton of pt sessions, tried a nonsurgical spine guy who when I could not get relief from pt, i had him give me a steroid injection
Also did the massage, acupuncture and çhiro thing
Pain much less, I do not do pain meds as i am allergic to all nsaids, first spine guy said it was my fault for not taking otc pain meds when it fist happened but they send me into an asthma crisis, cute huh.
So now I have numbness and tingling in my legs, lots of weakness in legs and new set of docs who are running tests for lyme, vit b and also ms
Got a nuerologist and nuerosurgeon
Surgeon says my back is weak and he does not want to do a biopsy which freaks me more
Mris are following a lesion on my spine so the nueropathy is just a detail
0 -
I want to know what the lesion is about, sort of think it is the site of my original injury
0 -
Yes, proud, I did forget that you have all the back issues as well. Not that I wish for you to have any of the things that you mentioned, but I do hope that if you go through a whole new barrage of testing that it will lead to something being done about your back and legs. Good Luck!!!!
0 -
thanks eli.
I find the tootsies like a cream I bought at whole foodsCalled toprician, it settles the nerves so I get sleep
Today was a ton of blood tests, got more unknown this week
0 -
BosumBlues, I would expect that it IS related to chemo, as I have read that CIPN can get better or, unfortunately, get worse over time. What I don't know is that after a period of worsening, could you rebound and begin to improve again? I hope this can happen for you.
------------------------------------------------
For those who like charted info., for those who like their neuropathy labeled, for those who might want to save a few $$ or are unable to get over to Johns Hopkins, here's an article out of Australia with a good overview of how things are looking currently:
Chemotherapy-induced peripheral neurotoxicity: A critical analysis
I got a new morsel of info. out of the article below article too, because it said that my platinum drug (Oxaliplatin, not what is given to BC women) can cause numbness and tingling for up to SIX years. Well, I think I can manage to live three more years to find out if mine will go away for good, so we'll see.
Management of Chemotherapy-Induced Peripheral Neuropathy
0 -
yes it's so nice to here from other's with the same issues. This is my first time chatting. I was diagnosed the end of Dec. 2013. It's difficult talking to people who have not had cancer. My feet feel foreign to me. It's like walking with a bunch of sand in my shoes. Then at night the electric shocks and cramps start. My hands are also affected, but not as bad . It still annoying,especially when touching paper. My tongue flat. Glossitis they call it. Thanks for the shares.
0 -
Eli - thanks for the articles.
I will be 3 yrs out from "hard" chemo in December. (of course we're all still assuming an additional year of Herceptin wouldn't aggravate anything). And the symptoms noted with taxane use was 41% at 3 years. Do I expect miracles by December - not so much but I can continue to hope. Especially with the possibility of gradual improvement over 6 years.
While BC people don't get Oxaliplatin, I did note that when Carboplatin is combined with Taxanes (as mine was) 25% of the patients have ongoing symptoms. The scary part was 58% of the patients have lasting dysfunction. Out of all the possible "preventions" listed - I took 4x the required calcium, B-6, B-12, Acetyl L-Carnetine and I iced my feet & hands. The only thing I didn't do was continue my fish oil, since the infusion nurses said that antioxident would be trying to cure the cells they were trying to kill. I don't want to imagine what could have been my "fate" if I hadn't taken all these things?
I think I've said before, I hate walking like an old lady with my numb feet. I hate it even more since i fell 2-1/2 years out - mostly because I couldn't feel or see my feet - and apparently have done lasting damage to my shoulder. Now I walk even 'tighter' since I'm afraid to fall again. And I really hate being afraid. I've about decided I'll have to stick to walking on a treadmill with handles instead of our lovely parks.
I am grateful that for the most part I don't have pain.
0 -
Bosum - if you're having pain, are you taking anything for it? I would certainly try to find a drug that helped if I had ongoing pain - although I understand that's difficult also.
0
