Vent about Permanent Neuropathy
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Last chemo tomorrow
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Ali68, hope things went well for you today.
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So glad chemo is over, my DH asked doctor should she have one more to be on the safe side, WTF I could have hit him.
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Ali68 congrats on end of chemo. !!!
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Congrats to ali68! Thank you for a place to vent about neuropathy! I feel a bit guilty to even complain, as I feel so lucky & blessed to be alive. I'm sure that no one really understands , except here, that it is unpleasant always feeling like I am wearing my socks all bunched up on the bottom of my feet, even when I'm not wearing socks, lol. My feet feel a bit numb, stiff and achey. And even into my ankle and above that. But I mostly ignore it, as I know so many suffer with even worse symptoms. My oncologist said my symptoms might be even worse had I not taken glutamine during my abraxane/taxol. It's been 4 years since I finished abraxane/taxol, which caused my neuropathy. Best wishes to all of you!
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Babysandpiper, I took glutamine and wonder if I got any benefit - hard to tell. Very discouraging to hear it has been 4 years for you. Yes, theoretically we should be grateful to be alive, and those words come out of my mouth when talking to most people, but I don't really always believe it. Numb and tingly fingers constantly wanting my attention, not ever able to get my work done without discomfort and distraction.... takes everything I have some days to get through and at the end of the day I wonder why bother. Still, I know there are positive things I can do to help others, and that is the important thing.
Ali68, you would be completely justified in doing bodily harm to your DH! But I am sure he is like my DH and many others - they really are terrified of losing us, and would rather have us even with disabilities than not have us at all (sometimes I do marvel at that, especially when I am grumpy). What is next for treatment for you? Surgery? Hormonal therapy? Other? Best wishes always.
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Surgery then rads
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I just found this thread ... I felt so alone! I am sorry we have these issues as result of treatment, but now I know I am not crazy. I had TAC x6, last treatment December 2011. My neuropathy did not present until about a month after my chemo was done. It is in my feet. Numbness, tingly like foot is asleep. And I finally figured out why I have been so clumsy, tripping & falling. We were on vacation and I tripped, picked myself back up - there was no pain - then I saw bloody footprints where I walked. I needed 3 stitches. Then 2 weeks ago I was visiting a friend and missed their bottom step, fell and banged up my foot and a knee. It hurts to walk up and down stairs. And now that it is sandal season again, I find I have lost the ability to "grip" with my toes & keep my shoes on. I feel more secure with tie shoes. My doctors tell me it will get better as time goes on, but I have the sinking feeling this is the "new normal". God how I hate that phrase.
Thanks for the sympathetic ear. Hugs to all.
Debbie
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Girlpowerdebbie, poor you it must get better that's what I say. I can't feel my face and mouth sores are horrible. Sunken eyes and no eyebrows or lashes makes me cry. I had cold cap and it didn't work well I have bits of hair it looks a mess. My list is endless and all I hope is things get better. I had problems from day one so I'm so glad chemo is finished I couldn't do anymore.
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Girl Power, There are some things you can try. Accupuncture works for some people, the sooner the better the result. I was told about this by my doctors, not some shady referral. Gabapentin (Neurontin) is very helpful for some people. Read back through the thread and you will find some hints.
Tie shoes yes. I discovered how bad mine was when I had a booklight inside my slipper and I was walking on it and didn't know it. My Onc ended my chemo two treatments early b ecause it got so bad. It is still about the same for me nearly two years later. I also get these rushes of feet electrocution. It hurts and burns. I am grateful I don't get them all the time. Some people do. My hands are affected but not as severly. I too fall over. Usually I will have stepped on the toes of my other foot as I am getting up and as I turn to walk my stepped on foot is stuck in place and I go plop.
I love slides so that is something I need to change so I dont seriously hurt myself.
I hope you feel less alone now and certainly less crazy.
Welcome, Ginger
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I have to wear crocs. I can't stand anything on the top of my left foot. Wearing compression socks has not been fun so far with our extra warm spring weather. I am not sure I can stand this summer. So I set a goal...I go for six hours and then I keep going till I can't stand and pull them off. I stumble a lot...have yet to fall thank you Lord but many close calls. It's been 2 years and 3 months since I stopped chemo...I think it is here to stay. Left foot is the worse and of course the tips of the fingers...still can't stand my fingernails to get long nor to have finger nail polish on them.
I quit the lyrica and I think I am going to ask my GP about trying neurotin.
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Hey y'all..... Has anyone with lymphedema and nerve damage have increased pain in the upper arm/arm pit area when walking.... Especially in the heat of the day? I love the warmth and heat of summer, as it makes me feel better than ever being cold. And I love the warmth of a well heated pool. It's the only thing that makes my right arm auctally feel warm inside. But.... I find that when I am in the heat, my arm and shoulder and hand screams in pain. Way, way, more than the usual daily pain. Since it is something I can point to, the heat causing these symptoms, I was wondering if it's something related to lymphedema. My arm does not swell, nor do my fingers/hand.
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Hi cindy, I have no experience with what you describe. You might want to look more in lymphadema even though you are not sewlling. After doing a search and not finding anything you might want to start a new topic with a descriptive title.
Me, my Onc convinced me to go ahead and try the neurontin and if I get symptoms similar to chemo brain again I can just stop. She said the syptoms go away right away with Neurontin. I will try starting tomorrow.
I am still get electrocution pains in my feet plus of course numbness and hurting too. It would be great not to have numb feet but also to have the pain gone as well.
I am realizinf more and more that I must never even step out of bed without shoes on my feet. I am that numb and afraid of injury.
Laters all Ginger
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It is nice to find this thread. I thought I was alone with the numbness in the toes. And walking a straight line. That is tricky. Thanks to the ladies about the idea with neurotin. I may ask my onc for a script. I take l-gllutamine for prevention but I am not sure if it is working. Hang in there ladies.
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I took glutamine for several months and found my finger nails grew like crazy. I wonder if that is just a coincidence.I did not take it for prevention though but to restore me. I had neuropathy from the time I was in my first four chemos and then it got much worse when I went on to taxol.
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I stopped the Effexor and realised it had helped my neuropathy. I had terrible withdrawal symptoms. I should have weaned myself off of it in hindsight.
I realised I needed something more for my neuropathic pain in my arms and hands. I tried Lyrica (pregabalin) and it made me too sleepy and brain dead so I stopped taking it.
My primary doctor prescribed neurontin (gabapentin) for me just yesterday. I also take amitryptaline 30 mg but my dr won't increase that because I have tachycardia.
I'll let you all know how I get on with the neurontin.
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lifelover do let me know how neurotin works for you.
I am going to ask my MD for a script on Monday for my toes and feet. I will let you know how to workds. I am also taking a B6 vitamin. I wonder if I should switch my antidepressant to Efflexor form Wellbutrin.
GirlPowerDebbie You could try l-glutamine and see if it helps. It could not hurt to take the supplement. There is neurotin and B6 so maybe those can help you too.
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Just a word of caution about B6 - too much can cause neuropathy also! So DO NOT take mega-doses!
Effexor did not work for me and it was hell getting off of it - took about a month with slowly decreasing dose every few days - I was only on it 6 weeks to give it a good chance to work, and was on the lowest dose. Neurontin (Gabapentin) also was not helpful for me and gave me OTHER horrible SEs. But what I know is that these drugs work for LOTS of people and do NOT cause bad SEs and lots of people tolerate them - I am glad that I at least tried them!
Anyone know if L-glutamine is supposed to be helpful AFTER you get neuropathy? Anyone have any experience with it long-term? Thanks.0 -
A note about Effexor. One should ALWAYS take a long time coming off of it or you will get a seratonin syndrome that will make you feel like you have the worst flu of your life. ALL doctors need to tell their patients this when they first go onto the drug. No one needs to feel it is "hell" going off of the drug if they do it correctly and have been so instructed by their doctors. It is an expected part of using this drug. Ideally one would take even longer than a month and have little to no side effects during the process.
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Gingerbrew, my MO actually DID tell me to come off Effexor slowly, but then again, she is the one that told me it would "take a while" to get over chemo and everything else, without much specific timeline. I realize there are no absolute timelines, but there are some estimates she could make based on her general experience. So she said to come off it slowly, and I thought that meant over a week or so.... so after a week, I was on half dose every other day and started with the withdrawal symptoms - yes, very much like the flu- dizzy, nausea, aches.... so had to go up to half dose every day for a week, then took another 4 weeks to get off, and had no further problems. I knew I wasn't supposed to just stop it abruptly, but had no idea it would take THAT long to clear! Anyway, glad that little speed bump is past!
Lifelover, if the Effexor was helping the neuropathy, why did you go off it? You may have said in an earlier post that I missed.0 -
Hi Linda,
I went off the Effexor by mistake - I didn't get to the pharmacy before they closed at 1pm on a Saturday and they weren't open on Sunday. I did some research on Effexor and was a bit horrified. I decided no matter what it took, I would stop it cold turkey and never take another one.
The main reason I started taking the Effexor was for panic attacks and hot flushes. Recently I was thinking about stopping the Effexor because I wanted to learn to deal with any panic and anxiety without meds. However, when I stopped the Effexor my neuropathy got worse so that's when I learned it was supposed to also help neuropathy.
Weirdly, since stopping the Effexor, and aside from the horrific side effects of withdrawal, there was one brilliant result for me - I started to feel "real" again. I can't put it into words but I felt like I had my old self back.
I'm hopeful that the gabapentin will start building up in my system and work.
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My onc said for the sore spots on my feet to put Udder Cream on twice a day and stay out of shoes and socks. He said excessive walking can irritate it as well. I think I have that hand foot syndrome. He did not recommend a medication yet. I still take the l-glutamine.
Thanks for the tip about the B6. BTW I take Xanax for my panic attacks and anxiety. I am also on Wellbutrin which I know I will have to stop after chemo. To me, the Xanax works the best.
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Thanks Lezza for the tip about Xanax. Unfortunately, my primary care physician doesn't want me taking it. I can't remember why but I think it had something to do with the possible addiction draw for something like me. Hmmmmm, I think that means that I have an addictive personality. That's why I've been advised to take meds like Cymbalta and Effexor amongst others. Cymbalta was a great drug and helped me hugely with my panic attacks however you can't take it with Tamoxifen.
I also take B6 and hopefully it is doing something.
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lifelover: Hope your primary can think of an alternative for you while you are on Tamoxifen. I know I have to give up Wellbutrin when I start that drug after chemo. Yes, xanax is an addicting drug. I will have to be weaned off it one day myself. I take super stress b vitamins every day not only for my toes but for my mind too! Take care.
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Lifelover and Lezza, xanax CAN be addictive, but is not always. Depends on YOU and how you take it. If you take it only as needed, it can be a very helpful drug. If you have an addictive personality, such as alcohol or other drugs, you are at high risk for getting addicted to xanax as well. I have a PCP who is also a palliative care doc and she prescribed xanax as an alternative to other drugs to use if I needed, and I find that I need one about once every week or two. Just knowing that it is available, is legally prescribed for a valid reason, and that my doc knows all my meds and possible drug-drug interactions helps me get through without most of the time. Many physicians don't know the difference between addiction and pseudo-addiction. I suggest you might want to see someone in palliative care or integrative care who truly understands the mind-body connection and who is willing to try drugs or possibly other non-drug therapies to help alleviate some of your symptoms.
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I have been taking xanax for over three years. Not as an addiction but as a solution to help with panic attacks. My MD said it is okay to take long term. I only use when I feel an attack coming on and it seems to help stop it in is tracks and I am grateful for that. Especially now during this journey. It is how I use it. There are lots of alternatives out there. I have used other herbs as well. I always look for non drug therapies too.
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Is neurontin expensive? I am thinking I am going to have to go back on something during these hot days of summer. Couldn't sleep last night because it was hot and my feet throbbed. I don't want to go back on Lyrica. Copay is just to much.
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Hi Kitty,
I get Neurontin free on the National Health Service here in the UK. I would think that it is less expensive than Lyrica because it was produced prior to Lyrica. Lyrica is supposed to be a wonder drug replacement to Neurontin. I think Neurontin didn't help some persons. However, more people tolerate the side effects of Neurontin than they do Lyrica. This is my understanding though based on what my GP has told me.
As your pharmacy about the cost. I'm sure they'll be helpful.
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Not sure which has helped, but I am getting a little relief from the chronic tingling burning fingers - now just have it when I am tired and typing or tapping piano keys and am clumsy, make lots of mistakes that I have t correct, but it seems to be just when I am active, and am getting relief with rest (not as true a few months ago). Am only using topical cream twice a day. They changed the base a little and made it more concentrated so it is easier to get most of it rubbed into the skin in less than half an hour rather than over an hour each time. No SEs to brain, thinking, emotions, etc. Insurance is actually paying so i have a low co-pay every 2 weeks. Had also been using acupuncture, but not sure it did any good, or at least not much. Then again it could have been combination. At this point, I am continuing the cream, discontinuing acupuncture, not taking any other drugs for it as most have had unbearable SEs for me. I am just thankful to get a little relief and hope that is a sign that more improvement may be on the way so I can get back to piano and more writing. It has been 21 months since I had normal sensation.
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I am a ten-year survivor, and I believe I will never be the same again because of neuropathy and Chemobrain. The changes were subtle. I have no pain, but my legs feel like dead logs. I stumble all the time and drag my feet. If someone pushed me, I would fall on my face. I can't do steps without handrails. I can't run or do anything athletic anymore. I was only 35 then and greatly miss my athleticism. I feel so guilty for complaining since I survived. I've worked at a desk for years, but now our organization is reorganizing, and I've landed in an entry-level, physical job. Again, I feel guilty since I have a job. My boss tells me I'm slow and has witnessed my clumsiness. I would like to get a quick diagnosis and file for disability since they want to get rid of everyone anyway. So far, I've had some tests, but every doctor I see seems to not have a clue. Any suggestions?
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