Vent about Permanent Neuropathy
Comments
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Gingerbrew, you can have a cranky day if you need it; PN just plain sucks and there is little to do to escape it some days. (((((hugs)))))
lovewins, I know how you feel about the creepy feeling when touching your feet. My hands were so bad early on that I found touching anything soft, like my cat or the skin on DH or anyone (including my own skin!) just felt plain creepy. Very odd how the whole CIPN "syndrome" has so many combined symptoms with pain, abnormal feelings, loss of touch and balance .... etc. That creepy feeling eventually has improved about 95% - took about 2 years. Now in year 3 am still having lots of issues, but not as bad as the first 2 years.
SoCalLisa, you have really been dealing with this for so long! Am glad the Lyrica is working for you! And I know it is not 100%, so am sending you some hugs, too!
And Christine, sometimes it takes irrational loud complaining about symptoms to get noticed! I took the quiet, don't bother the doc she knows what she is doing approach, and minimized my initial problems (she asked "are you having trouble doing your buttons?" - NO - but she ignored me when I told her I was having pain in my fingers when I tried to floss my teeth!). So you complain as much as you need to with your providers, get the help you need!
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I did acupuncture and it helped at ton. Before treatment I couldn't feel in my fingertips at all. Now I barely notice it, just when my hands get really cold. But I've always had issues with circulation to begin with. Best of luck, ladies!
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addisonse, How many accupuncture treatments did you have and over what period of time did you go from numb to barely noticing it?
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I did acupuncture for my feet. It helped a tiny bit
The person who did it was a MD. She said that the circulation was a lot better.
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Hello All.
I know I have not posted in a while but please know that I lie in bed every night reading all the new posts on my phone while trying to fall asleep. Please know that I sympathize with all of you who feel like you are obsessed 24/7 with discussing/dealing with these never ending symptoms of neuropathy. Your words are always heard here and appreciated by those of us in the "toddler" stages of this life effecting side effect.
Stacie - thank you for sharing your results of your EMG. I am scheduled for my EMG on Monday. You noted that yours was "normal" what does that mean? I will share my results when I get them!
I did meet with my neurologist on two occassions now. On the first visit he discussed the"it will get better" diagnosis from my oncologist. He noted that there is a definite issue between oncologists and neurologists and the lack of information that oncologists give to chemo patients while receiving chemo treatments which could result in neuropathy that could be life altering. He informed me that while it is his hope to better my quality of life and manage the burning/pain issue -the neuropathy will be with me for the rest of my life. I questioned if I would ever be able to drive again. While he stated he hoped he could bring me to that point - he noted he could not promise anything. He scheduled me for EMG and increased my gabapentin to 2400 mg a day. He noted that I had no reflexes at my knees, ankles,wrists or elbows.
The increase in gabapentin has made me extremely tired but seems to have ellivated the constant burning. There was a few days where I did not have the fire! I went back to the neurologist and he advised he wanted to put me on tegretol. I'm now taking this twice a day in addititon to the gabapentin. The Burning fire is now only a few days a weeks - usually when I push to do to much.
I am nervous about this EMG - whether the results will be good or bad. I also worry about how much medication I take to make these symptoms manageable. I miss my life, my friends, my career Will I ever get them back? On a side note the "contact" person from my long term disability called to check in on me. After asking me several questions she advised me that "not being able to drive" is not a part of my job description and would not be basis to continue my claim. Really? Walking and driving seem pretty important to get me to the job! Has anyone else had this problem?
Fingers are completely numb - guess I've been rambling for way to long. Thank you all for listening!
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Dawn, are you experiencing other problems besides the neuropathy? Fatigue? Inability to specific tasks? You have to be very specific about what tasks you can and cannot do as related to your job; if driving and walking are not essential to your job (they were not essential components of my job either), then there are ways to accommodate for that, such as taking taxi and using wheelchair, assuming your work is set up so that you can do that. If you are required to type a lot, you could use a voice recognition program like Dragon - which I did for a while. Ultimately, it is the combination of symptoms that keep you from performing your job that would qualify you for disability. Your doc will need to document ALL symptoms you have, including any difficulty with daily tasks of living, how long you need to rest, etc. Don't be afraid to let them know that because of this, you take twice as long to get yourself showered and dressed, hair done; if you are like me, it took nearly 2 hours and then I needed an hour to rest because I was so exhausted. I could actually DO some of my job, just didn't have the ability to do it all day every day consistently, kind of an occasionally I could do a couple hours here and a couple hours there. That is NOT what my employer needed, so you see it is a combination of symptoms that qualify someone for disability. Best wishes!!
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Thank you Linda for your response! I guess in my head I was saying - there is no way can do this but I was just expecting them to understand because of the neuropathy. I understand the driving no being part of my job - however I have a two hour commute each day. I also work in a correctional facility - which means walking is a necessity for safety reasons. As I noted the meds are helping somewhat - however they make it impossible for me to function. Guess I'm still hoping for the light at the end of the tunnel.Is anyone out there taking the combination of gabapentin and tegretol? Do you ever get "used" to it? Hugs to everyone!
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I never got used to the "gabby". I was a school bus driver before I retired. The stuff made me so sleepy I wasn't safe on the road. I had to stop it. Don't know about the other med.
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Neurontin made me very sleepy,but Lyrica doesn't
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EMG is scheduled for tomorrow morning at 9:30 am - kinda nervous! I know I had this test several years ago when I did damage to my ulnar nerve. Can't remember how long this test is though.Anyone? So what results am I hoping for....besides the obvious I want to wake up tomorrow and have no sign of neuropathy/fire/burning/numbness! lol
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Checking in and thinking of you all (as always) who suffer the ever monstrous PN. Mid to late summer here, and though it isnt as hot as usual, my feet have had some real tough episodes with burning. I only have the minimum Neurontin (gabby). Doesnt make tired. Only 300mg. Dawn, so sorry you have to take that whopping dose. Really feel for you when I heard you say about this horrible burning. Gentle "cool" hugs. When I tell people "no my feet dont just get hot they actually BURN", its like they still just cant comprehend. I have to emphasize, "no its like theyre actually on FIRE". UGH. The only way I can deal with this is keep off my feet when its hot and only do things in small doses.
What is EMG?
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Musical so sorry your dealing with the heat.... its winter here in New England the freezing cold doesn't really help this side effect either. Cool hugs to you too! Yes, dealing with the tiredness from 2400 mg of gabby a day in addition to the tegretol I take twice a day.
An EMG is a test ordered by my neurologist. They put thin needles into different areas (feet, legs, hands arms) and then send small electrical currents through the needles to see if there is nerve damage........0 -
Dawn, I had "nerve conduction" tests but it was a long time ago and cant remember exactly what it entailed. Would that be the same thing? My PN was not initiated by chemo but undoubtedly chemo has made it worse and I did 4 rounds of FEC. Oh yea winter doesnt let us off the hook, but I find its worse in the summer if I stand for too long or am on my feet. Everything is a workaround, what, with having to balance LE into the equation as well. I HAVE to walk to offset the bone density issues the AIs cause and if I work around it and do this super early I can actually do 2 miles. Very rare is it my feet arent burning by the time I finish. Its worth it though because the walking definitely helps with the aching joints.
I feel for you having to take tegretol as well. Hoping your body does get used to it so you can function. Tiredness is horrible.
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ok so I had the EMG/nerve conductor test on Monday. I must say not a fun test but bearable. Unfortunately I did not get the results I was hoping for. The doctors initial report to me was that there was evidence of moderate neuropathy bordering on severe neuropathy in my lower extremities. He again informed me that he cannot reverse this neuropathy - but he can help relieve the pain/burning. He noted there was abnormalities and would we discuss the test results at my appointment next week once he receives the full report.
So now I worry about the report results and the brief talk of abnormalities. I worry that this will be life...numbness, endless drugs to deal with the pain, drugs that make me pretty much brain dead. I can't remember anything anymore, I'm so tired I can't function. Sorry I'm sounding so down.... I guess I just am down. I expected to be back to work, living my life by now. I expected to be driving again. Will I ever drive again? Anyone else having the same issues? Are you driving again? I will keep you informed once I see the neurologist again on Tuesday.
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Hi, all!
I see that most of you
are having trouble with sensory neuropathy and pain. But I was wondering if
there are any ladies with motor problems, or…well, severe motor neuropathy?My mom started post op
chemo in Sept. Had 4 circles of Cyclophosphamide (Cytoxan) and Xeloda, and was
fine, feeling really well. Then she
entered the second part of her treatment – Taxotere. It all just went downhill
from there.The first week after
they administered it, she was feeling poorly. The second week her legs started
to give out, she had trouble getting out of bed. The third week – almost complete
paralysis from the waist down. She has almost no reflexes, and motor skills are
severely impaired if not non-existent. Her Dexason doses were tripled, but
there was no improvement. Her next chemo has been postponed in order for her to
‘rest’, but they want her back on it in a week. I don’t know…I don’t want them
to stop her treatment, but the accumulative aspect of Taxotere scares me.The whole thing was so
rapid! And I know a lot of patients have sensory neuropathy, but she doesn’t
have any problem with pain, or even any major problem with numbness. It’s just
the motor neurons. But such fast decline! So basically, a very active woman
ended up in a wheelchair in a matter of 2 weeks! What.The.Hell?And, can you hear me
panic? Because I totally am panicking.0 -
Alyon - I have basically dead feet & legs from mid calf down. Docs tell you CIPN usually gets some better over 2 years, but my neurologist said never back to where we started. And then there's the 30% who don't get any better at all. I would make sure your Mom sees a good neurologist to get his/her advice and have some tests done before taking any more Taxotere. Just my personal opinion, but I'd do it that way if I had it to do over.
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I had such a severe allergic reaction to Taxotere my MO stopped it. Was like hand foot syndrome ALL OVER my body. Awful.
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Alyon - I am so sorry for what you and your mom are going through. Although I did not receive Taxotere ( I had taxol) the "side effects" are extremely quick and seemingly permanent. I agree with minustwo - get your mom to a good neurologist. They are much more experienced with these types of neuropathy and have more "tricks in their bag" to help deal with these symptoms. Good luck to both of you!
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I had taxol also. I went down hill just that fast. First it was hard to stand on feet because they hurt so bad. Then I had problems walking to the week they admitted me and took me off the taxol, I couldn't get up off the couch. I still have motor issues especially when I am tired. I have a hard time with steps and I also have balance issues so when tired, I walk like I am drunk if you didn't know me.
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Alyon, I echo everyone else in saying we're so sorry you guys are going through this.
KittyDog had to laugh when I read your post, I've described myself as looking like a drunk duck on many occassions.
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Has any one been told to avoid Caffeine with CIPN? I just discovered something. In December of 2012, I started doing green drinks and several days went by and I noticed I hadn't had a cup of coffee. I wasn't trying to quit, but with my penchant for espressos and drive-thrus, I thought I could save some money. Never looked back and over a year without coffee. I don't get caffeine, other than a very occasional cup of green tea.
Fast forward to my replacement drinks - from kambuchka, to Pelligrino water, to beer (short-lived) and then this last week I bought a 6 pack of diet coke (very unusual for me). My feet just burned within an hour or two of drinking each coke. I had done nothing that day in the way of activities on my feet to justify that feeling, and in fact have had none of those feelings for awhile.
I think diet coke was definitely the culprit - and I would guess, the caffeine.
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Kam, More likely the aspartame, or combo of the two.
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elimar - is that a known thing? I suppose if Taxol can poison us, why not Aspartame. What other things might we be ingesting that would irritate our nerves? You are right, Aspartame - ugh. I usually eat organic, even vegan, so dipping into diet coke is just so not me. Thanks for reminding me of Aspartame. What was I thinking?
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You'll all be pleased to know that I've always stuck w/regular old Classic Coke. That way it's mostly the sugar that will get me (which I can use since i lost 67 lbs) - oh yes, and the caffeine. Interesting about the caffeine and the neuropathy tho. No one else has suggested it but I'll do a test down the road when I get finished w/rads.
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MinusTwo - I think elimar is correct, it is the Aspartame, not the caffeine. Apparently, Aspartame is a neurotoxin!
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Anyone else having paraneoplasstic.syndrome?
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Good heavens Lisa - just a quick glance at google to see what it is convinced me I don't even understand the vocabulary. Is this something you've been diagnosed with? Was it not ameliorated with the chemo/radiation tx as suggested? How did you ever find a doc clever enough to pick it up?
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I had this as a result of having undiagnosed breastcancer tumors. My T cells attacked my nerves instead of the tumors. After my surgeries it stopped but the neuropathy never got better.
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Hiya everyone I am new to the site and was diagnosed with IDC at the end of 2012 It was estrogen pos the rest negative The Oncotest was 37% chance of recurrence. I was suppose to do 8 rounds of chemo and did the rads as well. After my first chemo session I was not able to walk up the stairs without being total exhausted Heartrate of 120+/min. and pain in my bones Onc told me side effects. So after the 4 treatments i was suppose to change to a stronger med, and I decided not to go for it. It brought my changes for recurrence up another 7% Anyway to make long story short. I would not accept that numbness and pain and off balance I felt like I was drunk) dizziness etc I knew it had to be more. So in may of 2013 i had my last rad and started the 5 year pill. After a monthI decided to stop that as well. By june i had already three trips to the ER with high heart rate and trembling and feeling exhausted. Everytime they told me give it time! It will get better! Side effects and Neuropathy ! So i was fed up and in november after another couple of trips to the ER they finally send me to see Neurologist. I was shaking and having pain so bad at that point the ER crew though i might have another neurological disorder. I had asked the neurologist to test me also for thyroid and not only test me for TSH.but also for FT3 and FT4 Guess what! I was super hyper! The numbers were 10 times higher then supposed to be....good thing I escaped thyroid storm!I Now i found out that the chemo had activated the antibodies of the Graves an auto immune disease. I am so happy i listened to my little voice who was screaming at me at points! lol It only took almost a year to come this conclusion. As of today am now still waiting to see endo for this. Moral of the story Do not accept right away what the doctors say..if you feel there is more going on then please TRUST YOURself! Thank God I am still Cancer free and i feel positive now for the future (trust me i had suicide thoughts at points) Bless Karin x
P.s. I almost have my levels normal again and the only symptom i now have i still hihgh heart rate here and there Can not seem to get my FT3 down lol. But pain in bones and wrists numbness and even edema is gone!!
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Well, thank you all
for the input on Taxotere motor neuropathy.Our doctors are not
all quacks
even though it seems so. They wanted to keep her on Taxotere,
even with side effects, because she has specific targeted therapy. Before we
went in for chemo, we had extensive in vitro testing done. Chemo sensitivity
testing on primary tumor tissue and blood sample cultures showed marked cell
death when Xeloda, Cyclophosphamide, and Abraxane was used. Abraxane was not an
option for us, since not all European countries have it on their approval
lists, and wohoop-di-do, ours in one of those. Paclitaxel had lower effects,
but Taxotere was right alongside Abraxane, and was the best option. Since we
finished 4 circles of Xeloda + Cyclophosphamide, Taxotere was the next get go,
thus they don’t want to give up on it.In other news: We are
boarding the depression train. We went to a neurologist, and he said there
could be improvement with physical therapy. Still, we also had to go in for a
brain scan to rule out mets that could up the horrible neurological
consequence. Good news? No mets to brain or compression of the spinal cord! Cue
smiles?Not really.Mets to posterior rib
ends, both sides, Th8 to Th10. It’s like they are ganging up on the spinal
discs just waiting to pounce. Considering the fact that we are, currently
dealing with motor neuropathy and a wheelchair, the idea of a future spinal
compression is just so depressing. I almost slapped the rheumatologists who
said – ‘Eh, if it spreads, there won’t be much of a difference, she just won’t
have sphincter control’. I’m not prone to cursing, but while he was stating
this I thought – fu#k you, mister. F you.Do I even need to mention how devastated I am about
the mets?0
