Neuropathy pain

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Neuropathy pain

Postby helen098 » Thu May 06, 2010 9:47 am

With all the bad news on this board recently I feel a little bad complaining about this
but I know you are the only people who can understand

My neuropathy seems to get worst when the weather changes and in new york the weather has been crazy lately. Normally the pain is about a 4 , manageable with the cymbalta, pain patches and ½ to one vicoden a week or so.
Since last fri/sat the pain in intense about a 8 to 9, I can’t sleep with the pain, my feet hurt all the time no matter what i do/don’t do. Usually after I exercise everything feels good for a while but not this week. The pain during my workout is bad and after even worst.
I can’t sleep, don’t want to eat don’t want to do anything really
I took the vicoden on sat/sun/tue and had a drink last night (figured if the pills don’t work at least have a drink- well no when I have a drink normally the neuropathy gets worst and today is no exception) and have felt hung over all week along with the pain.
I am cranky, argumentative and just generally a pain in the ass to be around, I have told a few people about it when they asked why I look so bad ( I love when people tell you how bad you look- are you sick? No just pissed off at the world)
And the response is this blank look then you still have that pain what caused it? why don’t you do yoga, therapy eat mango ect) .
Then I have to bite my lip so I don’t rip their head off and say no its from the chemo, it will never go away and please just leave me the hell alone before I kill you you normal person.

Maybe I should just crawl back in bed ( take a pill), tell them at work I am not sick just can’t deal with people right now and sleep with my dog till it goes away, though he likes to lay on my feet and even the feel of his fur makes me go nuts

Thanks for listening
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

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Re: Neuropathy pain

Postby Rick7 » Thu May 06, 2010 10:20 am

Hi Helen,
My Neuropathy is not as bad now as it was last fall, but it can still put me in a bad mood.
75 degrees seems to be a good temp for me.
Also, when I can, I get in a Jacuzzi and put my feet near the jets. That takes the pain away for a while.

I also found that wearing special toe socks designed to stimulate circulation help the pain.

I have a whole list of stuff I try to deal with the Neuropathy.

Eat Mango? I had not heard that one.

Good luck,
CC DX 1-7-09 at age 40 - Stage IV, T4-N1-M1
Surgery 1-16-09 - Folfox6 Feb-Aug 2009
Clear scans - PET/CT 9-09, CT 3-10, CT 9-10
Head MRI 3-11, CT 9-11
Head CT 2-12, PET/CT 9-12

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Re: Neuropathy pain

Postby tytiff » Thu May 06, 2010 4:21 pm

Oh Helen, I (being my husband Tyler) feel your pain. His neuropathy is just awful and it's getting worse by the day. The dr told him that since he is off chemo for his neck surgery, it should be getting better. It is not! The dr believes that the 3 crushed discs in his neck are exascerbating the issue, but Tyler disagrees because he never had this pain before chemo. We have no idea how he managed to get three crushed discs, he hasn't had a vehicle accident in years, nor anything that might make that happen. When Tyler tried to discuss this with the dr., he felt very shut down and the dr told him to STFU, in no uncertain terms. He feels he is not being heard by the dr. The dr says he has had this surgery for his neck, but that is not allaying Tyler's fears as far as the surgery nor the neuropathy. I know we/I should be grateful that Tyler is clean right now and this is a small issue compared to the big picture, but it is really messing with his quality of life. I understand your "pissed at the world attitude and all normal healthy people" sentiment. He has that in spades right now. He is normally an amiable, quite cheery guy to be around, but this is bringing him down. Sorry for the rant, but I can totally understand.
Tyler: pt Tiffany: crgvr
Dx 08/09 Age 41
15/15 rnds cmplt 5FU/Oxi/Avas
End chemo: neck surg
Dad of 3, teens
NED 03/10
3 New tmrs after chemo brk
New chemo 6/10
NED 8/10
3 new tmrs
Rad. 01/11
Clean scan 3/11
NED 6/12 no trtmt 15 mos!
NED 2/14

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Re: Neuropathy pain

Postby brigita » Thu May 06, 2010 6:21 pm

Hi Helen--What kind of shoes do you generally wear? As I'm sure I've mentioned on similar threads in the past, I have had the most luck with Crocs, which actually come in some non-ugly styles. They also make insoles that you can put in regular shoes--I have these in my exercise shoes and I think they help quite a bit.

I also wear Smartwool socks all day, every day (thank *goodness* we had such a mild summer last year so I could rock my socks & Crocs under jeans/pants instead of suffering in sandals & shorts). They aren't cheap but they really do the job and wear like iron. A friend of mine said that she often sees them on sale @ Clarks stores...?

I'm sorry that you're in so much's so incredibly frustrating and one more thing that people can't possibly understand without going through it themselves. :-/

I hope you can get some relief soon!
Stage III rectal @ 33, 4.5mo postpartum
Ovary transpo: 12/07
33 tx rad+Xeloda: 2/08
Lap LAR 0/11 +nodes: 3/08
8 FOLFOX tx: 8/08
Ileo reversal: 9/08
CIPN since 10/08
Normal uterus + lame ovaries = infertile
26.2 11/13

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Re: Neuropathy pain

Postby pollo65 » Wed May 26, 2010 3:54 pm

I keep reading the posts on neuropathy. I am seven months out od FOLFOX and still have neuropathy that makes me doubt the presence of my toes(except when they burn and tingle.) I too have had best results with CROCs, I have to wear "work" style for my job. I wear thick socks to bed, but if my feet sweat then they burn. I have had acupuncture done and it helps, but only last a couple and doesn't completely stop the tingling. I also tried Neurogen and that also helps temporarily, but people avoid me because the stuff is so pungent.
I am getting ready to go back for maintenance and dread the thought of neuropathy increasing.

CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
chemo break

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