Vent about Permanent Neuropathy
Comments
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Balance: the Lebed DVD has a section devoted to balance exercises that are gentle and effective for improving treatment-related balance issues. The rest of the DVD is excellent stretch and breathing exercises and some simple dance-type moves to tie it all together and make it fun. Also great for LE.
http://www.lebedmethod.com/store/?productID=3
Hope that helps,
Binney0 -
Thanks Binney. I bookmarked that one for later when I have some extra money. Thanks again.
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I have neuropathy in my hands and feed due to taxol. I finished chemo in August. My fingers don't work and hurt, especially first thing in the morning. My chiropractor suggested dipping them in hot wax (like some salons do after a manicure). I bought a wax spa bath from Bed, Bath and Beyond ($30) and use it every morning. It definitely helps my hands and fingers feel better. Just a suggestion to help. I'm still hoping that this gets better over time. I have tried different drugs and just hate the drug hangover.
rcca
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Hi KittyDog -
I'm very sorry to hear about your current suffering from the neuropathy pain - I too know it all too well and it sucks. There are a few other discussion boards in breastcancer.org that contain a lot of information and links to other websites that may provide items and info to help with the day to day living we must do. I started a topic titled: Nerve Damage - CIPN & RIBP http://community.breastcancer.org/forum/69/topic/762916?page=1#idx_4 and there is another one out there titled: radiation-induced brachial plexopathy at http://community.breastcancer.org/forum/64/topic/698235?page=14#idx_394
Also on Susan G Komen there are some discussion boards relating to survivorship side effects with different responses that are interesting to read through relating to Lymphedema and Neuropathy - They are under the Survivorship > Living with Persistent Side Effects forum at http://apps.komen.org/Forums/tt.aspx?forumid=56
And of course - Step Up, Speak Out website dedicated to making a difference in Lymphedema and RIBP - great website with tons of information and suggestions on coping with the disabilities we encounter. http://www.stepup-speakout.org/
Stay strong - vent often - it's good for our physche!! ;o)
Cindy
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I have an update to share - I went to my Physical Medicine Dr last Friday - We discussed my increasing symptoms of:· Sleeping difficult - wake every 1 - 1 ½ - 2 hours from pain and discomfort - I dream about the pain, uncomfortable feelings and that my right hand no longer is useful - so, not only is it my day to day - but also continues into my nights.
· Ambien helps the sleeping - without it, there would be no rest - she (Dr) did say that I should request my Primary Care Dr to change it to the CR type of Ambien which is more time released, and it may help me rest longer periods between waking.
· I miss at least one day a week from driving to work and getting up early when I had a bad night - I then work some from home, so it is not really counted as sick day or missed day. I am fortunate in my line of work to be able to work remotely if necessary. Still - it is hard and way more tiring than before the symptoms progressed.
· Occasional headaches 7 - 14 times per week - strong pain in front side of forehead - nauseating for minutes - off and on over period of days
· Right side neck/jaw pain and jaw weakness for chewing - this is weird, as my jaw gets so tired, I can't chew but for a few moments. Then stop chewing and rest a few longer moments, and start again. Because of this, I have been choosing softer foods.
· Increased left hand pain - finger nails & fingers & palm/thumb
· Increased left forearm pain, top and bottom
· Increased left upper arm pain in front bicep
· Increased left side of chest near armpit stings/burns
· Increased left hand weakness - dropping more and small tasks more difficult - I almost took a co-worker's eye out this week, when the little coffee creamer cup went flying out of my hand, up in the air behind me, just as the guy walked into the break room! Oops!
· Left hand coordination getting worse
· Increased right hand/fingers/arm very itchy
· Right hand sensitivity greater -and again not being able to stand the right side to touch anything - not even allow it to rest on my leg while sitting - I have to turn it upwards so the back of my hand rests on my leg.
· Right hand weaker - and markedly thinner, muscle tone almost non existent - bones protrude, skin sunken in around them - bruising easily occurs - forefinger will sometimes not move at my will.
· Right fingers move on their own, lift up, bend, twitch etc. When they do this, I push them down or straighten, but as soon as I relax, they go right back to moving on their own.
· Right forefinger always pulls up like it's always pointing
· Right fingers feel like they are quickly vibrating inside, but not outwardly moving - Left fingers started doing the same.
· Right hand - little and ring fingers always feel like they are bent under even when straight
· Right fingers will often twitch and jump uncontrollably
· Right hand increased pain in fingers, finger nails, and large thumb joint
· Right forearm strong sharp and burning pain, top and bottom
· Right upper arm bicep and front shoulder sharp and burning pain
· Right upper arm above elbow nerve/muscle constantly jumping/twitching
· Right back shoulder nerve/muscle jumping/twitching
· Right body side between ribs nerve/muscle constantly jumping/twitching
· Right side of back near spine nerve/muscle constantly jumping/twitching
· Right side of spine between shoulder blades area burns
· The nerve/muscle jumping/twitching in hands/arm/back/side makes me feel exhausted - it just doesn't stop - 24 hrs a day, something, or all are moving - its not painful when the nerve/muscle jumps/twitches, just annoying and exhausting.
· Not sure what to do with the right arm anymore, how to hold it, where to rest it - hate the feeling when my hand touches anything
· Toes more painful on top of nails and toe tips
· Toes are numb tingly from above foot joint - stronger tingling/pain than lower leg symptoms
· Legs below knees tingly through the feet - constant
· Legs- restless legs during the day and more so at night
· Top of feet often intense pain
· Bottom of feet get burning hot - yet to the touch they are cool. This is throughout the day and night
· Right knee misfires a lot lately.... I will be walking or standing, and at anytime my right knee will buckle.
· I am riding a recumbent bike 5 miles - 32/35 minutes, on level one, 4-5 days per week - but still feel so weak at the beginning in upper legs and exhausted at the end.
· Stopped Aromasin for one month to see if it was adding to my pain and discomfort - no improvement or change noticed - I only have 9 months to go on it to complete 5 yrs, so I started taking it again on 2/14. I will finish the 5 year cycle on this drug for my Breast Cancer.
I asked her what she thought about acupuncture and it possibly helping with the stinging/burning pain - she was not sure, as she does not perform that. However, she has a colleague that is an MD and performs acupuncture. She said she'll reach out to her and get some feedback on whether she thinks it may help, or possibly hinder and cause the nerves more distress and irritability. Haven't gotten a response on that question as of this writing.
I also said that since my symptoms are getting worse, I wasn't sure if the low-dose Cymbalta was still working. She said that the dosage can still be increased and be considered low-dose for nerve pain treatment as opposed to depression doses. But, she said to see if it is working at all, stop taking it for a week. Within a week's time I would be able to tell by the way I feel regarding pain. I stopped taking it on Saturday, and by Tuesday I could definitely tell it must have been helping to take the edge off of the pain and helped with the feeling of raw electrical wires running through my limbs... I also noticed increased sensitivity to noise causing me to feel like my insides were startled by anything remotely loud. I started back on the Cymbalta today - Thursday - in hopes it'll go back to taking that edge off of some of the symptoms.
Good news to share - I will participate in two separate studies relating to RIBP - one with Dr Dorsey, at the Univ of Maryland. The other with Dr Radina, at the Miami Univ of Ohio. I am looking forward to helping those who have a desire to help us survive survivorship!
Hope all of you are doing well - stay strong - survive survivorship!
Cindy0 -
It might be wise to get your cv2 antibody level checked. If neuropathy hasn't gone away or subsided after chemo, that may be the problem. What the oncs told me for years was chemo-induced neuropathy was not that at all.
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Gracie, I think I had paraneoplastic syndrome and my neuropathy got
better after the tumors were removed, but it didn't all go away..I switched
healthcare providers midstream so there is no actual diagnosis in my record.
but I know that is what I had as it started before my chemo..
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SoCalLisa....I don't know much about this...with me it started with numb fingers and toes after taxotere. As I got further into treatment it spread to my feet and legs and hands and arms. One day I got into the tub and was paralysed by the water (very very weird) and couldn't move my legs to get out. The tissue in my legs looks and feels like it's been replaced with cement and sometimes I don't know what my hands are doing unless I'm looking at them (they FEEL like their clenched, but they're not). On occasion, I have absolutely no control over what my arm is going to do. I told my onc this couldn't possibly be JUST neuropathy and that's when he did a blood test and found out about this CV2 thingy. I'm angry that it's put me in a wheelchair so I didn't ask any questions....I figure it must be bad because all he said was that he was sorry he had to give me the bad news and that the bigger my tumor load and the more regression from treatment, the worse it would get. He put me on 60mg of prednisone to see if that might help but no luck so far. Can you share anything you know about it and what if anything you did to help it?
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I use Lyrica and acupuncture..
other meds did not help me
but I have nothing compared to you.
I had sock and glove neuropathy and
loss of fine motor coordination and balance problems
and some other minor issues..
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Thank you for responding so quickly. Yes, I forgot to mention the balance problems (hence, the wheelchair). I can't seem to stand without falling over. For some reason, onc didn't think drugs like Lyrica would work....I'm going to ask again. Thanks.
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Lyrica is my miracle..I am back playing tennis again, I never thought that would happen
but I do have to be very careful..it took a while to start working and build up the dosage
it doesn't get rid of all the pain but it sure does help soooo much
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Would you consider your case to have been more pain than numbness/loss of sensation or the other way around? I didn't have pain so much as I couldn't feel my arms legs and face.
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Hi Gracie - I am not sure that I had the CV2 test - I just researched it online - and I do have those symptoms - my onc was not buying the theory of advancing neuropathy occuring this long after chemo, for it to have been caused by the chemo. The vincristine and taxoter bothe caused me a lot of tingling/numbness in hands and feet during the chemo doses. So who knoiws at this point - there's so much they don't yet understand about side effects and how each person reacts to the drugs and radiation. Your discription of your legs feeling so hard, like there was cement poured into them is exactly how my shoulder, arm, neck, clavicle areas are.... that started just before I finished radiation - I brought it to the radiologist's and onc's attention, and they shrugged it off since tests/xrays/lab/scans all showed negative for additional cancer activity. It is like none of the many Drs I have seen thus far have a clue about it. I understand your balance issues - I now also walk very wide and deliberate - loose my balance all the time - misfire in legs.... I will ask if the cv2 test was done w9ith my lab work though for sure - thanks for telling me that - take care of yourself - stay strong!
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You take care too, Cindy. Something to check into anyway, even though there's nothing that can be done about it....it's still nice to have a diagnosis instead of consistently being told it's run-of-the-mill neuropathy.
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Gracie, I agree, once you have a definite diagnosis you can
go from there
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I checked with my Physical Medicine Dr on the option of acupuncture - she in turn, reached out to her friend and colleague who is an MD and performs acupuncture, regarding my specifics, and if she felt it could help. She responded and said she would not recommend acupuncture in my specific case, as it would not provide any relief or be beneficial. It could cause the nerves and remaining muscle tissue to become more unhappy than happy. I also asked about the CV2 antibody lab test - she said she will research that to see if it would be something to add to my lab work up, based on the criteria and active symptoms I have, and she'll let me know what she determines. I hope y'all are doing well and getting ready to enjoy spring! The trees are blooming here in TX - beautiful!
Stay strong, Cindy
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Cimdy please report back on the CV2 test and what it means. I just discovered I did not have my slipper on my foot when I really thought it was there. I thought I could feel it there. Neuropathy is a pain in more ways than one.
I would of course rather have the side effects than cancer. The small problem is that the cancer was not causing any symptoms, I felt fine. The SE's are a big pain. I am grateful that there is treament and I know I am fortunate to be able to have treatment I am just weary of the whole march along this road.
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Hi Gingerbrew - the weariness of the march to wellness is indeed hard to do - and we sisters know that road all too well. I understand the weirdness of the phantom slipper - I usually can't tell if my feet are covered or not when i lay down.... Or if someone is touching them.... it is a very odd sensation. I have to actually look to see what is going on with feet, and in particular, my right hand/fingers.
The CV2 antibody test - as I understand it - looks for the possibility of other cancers that may be hiding away, producing a chemical in the brain, that causes symptons similar to the neuropathy we encounter from chemo and radiation - the difference is, that it also seems to attack the eye nerves and may cause sight problems. I do not have the sight problems - and I really don't feel that I have anything more going on than my severe RIBP/CIPN. However, I was curious as to whether or not I had this test in my lab profiles and if not, is it one that should be added as precautionary. My Primary care Dr said she would research and talk to me more about it once she gets the facts. I heard about the CV2 issue in this forum from Gracie1. She may be able to provide more detail than I did - and please Gracie, correct me if I stated anything incorrectly.
Stay strong,
Cindy
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Saw this pop up active today, how appropriate, my feet kept me awake most of the night they hurt so bad. So this morning I'm hobbling over to get some coffee, thinking, at least if you were going to keep me up all night you could not hurt so bad when I'm getting the coffee I really need because you kept me up all night...
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It is 90 degrees here today. Fans etc on, yet, I have my feet wrapped up because the neuropathy makes them feel so cold. I hate neuropathy
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Add to the vent, the fact that I'm soaking towels and potholders to get the blood out because I missed a crack in a glass, and before I could notice the cut in my finger I couldn't feel, blood was over everything. ugghh
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So sorry your neuropathy is acting up. Mine is too but the opposite of yours. My feet feel worse when they are hot and they feel like they are on fire unless it under 72 in the house. Oh joy living in the south that is impossible right now. It is cooler here today but tomorrow it will be 98. Oh more joy because I have to be outside for a school activity the next two days. What was I thinking when I said yes I would help.
Chin up and trudge through the pain.
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I hear ya kmmd & KittyDog! My hands and feet are cold no matter the temp inside or out.... And at the same time they are feeling like they are on fire. There is no peace. I can no longer hand wash dishes, especially knives. I don't know when I've sliced a finger until I too see blood.
Stay Strong -
Cindy0 -
So glad to have found this thread. I thought I was the only one. My hands and one foot cleared up but I have neuropathy at the bottom of my right foot. Some of you have it so much worse that I feel I shouldn't complain Has anyone gone to a neurologist and was there a recommended treatment that helped? Anyone getting relief from acupuncture?
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hrf, I found an anesthesiologist who works with chronic pain after cancer treatment who is just beyond wonderful, it has helped. Acupuncture helped some too
Cindy, thanks for letting me know I'm not the only one. It is hard to break a lifetime of habit and get used to looking for cuts rather than feeling them
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I wanted to offer some hope. I had neuropathy in my finger & toes. Was told by onco doc that most likely caused by the Taxotere that I took with Carboplatin and Herceptin. Now I am 6 mons from the last chemo combo and 97% of the feeling is back to normal in my fingers, however the toes have improved just not as much.
Good Luck to all.
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Thanks NormaJean, however, in my case it has been over 2 years, and 2 years was given to me as the time when if anything was going to come back it would by then
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I thought Neuropathy was a serious complication of Diabetics. I have a relative who suffers greatly with it but she is diabetic. I never knew it could affect others in so many horrible ways. She is using Gabapentin (the stronger version) but lately it has gotten much worse. It is so sad how much suffering much be involved with just trying to live our lives.
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Medigal,
I have an Aunt who has unexplained neuropathy. It is sad how it effects their lives. The only good thing about ours is that it most likely want getting any worse than it is.
It has been a little over a year since my last chemo. I saw some improvement and really thought it was better until our hot weather hit. My neuropathy seems to be worse with heat. Extreme cold also make it act up more but the heat is by far the worse. We have more warm weather here than cold. 98 today with a heat index of 101. I wish I lived at the beach...then I cook soak my hot trobbing feet. Pool is almost full so pray I have the stregth this year to climb the ladder.
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Hi ladies saw this thread and thought I would chime in. I have breast neuropathy caused from radiation. My DH also suffers from periphial neuropathy. My BS put me on amatryptiline for the nerve pain. Both DH and I went to a pain Dr. last Friday and because I was having breakthough pain he gave me a compounded cream 120Gm CMP Gabaprofen. I know that it has gabapentin in it as well as an anti-inflamatory and analgesic. It really works for the breakthrough pain. DH has tried gabapentin and Lyrica with not alot of success. So he changed is dosage to a low dosage gabapentin and also something similar to matryptiline can't remember the name and the same cream he gave me. DH said he is still feeling pain but really likes the cream as much as I do. If any of you having problems have not been to a pain Dr. you might want to give it a try. We like him much better than the neurologist my DH was seeing.
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