Vent about Permanent Neuropathy
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I have not herd of melatonin helping but I am willing to try! At least it might knock me out so I sleep through the night pain in the summer months.
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Melatonin didn't do squat for me. I'm not at all thankful for any of it. Nor did the damage the chemo did end up being worth it. I'm just thankful I'm tolerating the AI so far and hope it works for a long time. It destroyed my career and took away many things I loved to do. I've learned to get over the anger, but will never forget how I was blown off when I complained about bad neuropathy after the first round of chemo. My med onc flat out refused to report to the FDA, I should probably just do it myself, you don't have to be a physician to submit a drug complication to the FDA
So this remains the thread I started where I want people to be able to come here and vent about how much this sucks. You don't have to be cheerful or thankful for a darn thing because this sucks.
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kmmd, Maybe I don't have the right to post here until I have waited thru'
the two or more years to see what CIPN I will be left with after that
point. I still have hopes that my nerves may regenerate and I like to have a degree of optimism about it; but I am also horrified and angered that I may be forever numb. For me, the chemo issue, and all that followed, has been very complex.0 -
kmmd,
I enjoyed the You-tube video, great song...then I noticed how beautiful her hair is, and reminiscing those days of youth and thick beautiful hair...
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Hi ladies....anyone have luck getting Soc Sec Disability having BC and Neuropathy?
Just got turned down.....I am so miserable in pain I dont think they understand how debilitating neuropathy is.
Dana
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With FEDERAL SSDI they don't typically approve lower stages especially stage1 because of the requirement that you will be unable to work for 12 months or more. They expect recovery at some point or the use of adaptations like mobility chairs I suppose. Stage 4 gets expedited review and likely approval because the potentially terminal nature of our situation.
Can't say about state or your employers temporary programs but that's where I'd go next.
It sucks but it is what it is.
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elimar of course you should post here.
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Keep trying. Most times it takes several appeals. You may need a lawyer, usually do.
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Any suggestions for cold numb feet at the end of the day. Should I warm them? I sure as hell want to.
Electric socks, foot warmers?
Its nice to kill the burning and the lightening strikes but this damn numbness......I guess I'm stuck with it.
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Heating pads are great for cold feet, hot shower?
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Chickadee - I love my heated throw. You can find at Pennys, Target, WalMart etc for around $20.00. Of course with our feet numb, mine NEVER feel warm - but it helps my attitude and warms my knees anyway. Or sometimes I toss it around my shoulders.
I bought winter,warm knee socks at Target & usually keep a pair on. I still love my Acorn slippers (also can be found at 'astronaut slippers' on google.
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thanks for tips. Have to see if they still have them before spring stock goes on shelves
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Chickadee- Hello again - As you know I did not have chemo, alas I do have neuropathy in my feet for whatever reason still unknown.
When my feet are cold (and it's not comfortable) they are only numb, when they are warm or hot they also burn and ache, so since I naturally have cold feet, I stay with the cold and therefore numb only. When I am asleep and have gotten to a snuggly warm point with my feet, the pain and burning is back and wake me up. grrr.
dsgirl
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dsgirl I too prefer the cold numb feet over the hot burning feet. However I do understand those who have the same type of pain when they are cold. We have had extreme cold weather this month for our area. Friday I experienced that pain in my cold numb finger tips. Even with gloves on they were so cold and numb that they hurt. I get it now and I am so glad this is not our normal weather. In many ways it was worse than the burning and throbbing that the heat causes my numbness. The cold pain was just that painful.
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I found these nice diabetic knee highs at Walmart today. They are sock like at the bottom and loosely knit up to the knee. My feet like them for bed. We'll see if they do ok in my shoes tomorrow.
I also plugged the tub for my shower and got the hot water over my feet. That was tingly, not 100% but better than cold. Boy what I wouldn't give for one of those fancy step in tubs they advertise with the bubbles. sigh
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You may want to check at a sporting goods place , like Dicks, for battery operated heated socks. And I think there may be mittens or gloves. Hunters use these while out. Or ice fishing.
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My recommendation would be to test the heat with your arm or something that doesn't have neuropathy. I've hurt myself a few times trying to gt my feet warm but not realizing how hot water, heating pad etc are because of the numbness. I can't stand the pain from the cold, warm my feet and hands up then can't stand the hot burning sensation that follows. At least in this cold you can warm them up, in the summer warming up my feet gets me hot and brings on worse hot flashes.
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ooooooh I like the socks so far.
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Chickadee were they by chance Medi Peds? I discovered this brand of diabetic socks at Christmas and really like them to. I have been wearing them with my crocs. Feet still get cold by not like wearing nothing. I think we found these at Kmart.
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Dr Scholls, Walmart. So far so good.
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Chickadee - for my cold numb soles and toes I use a vibrator with a heat setting from Sharper Image. I got it decades ago hoping it would help bursitis -- no luck with that, but it helps now with my feet. Something similar must still be sold.
It's not a wimpy battery vibrator -- you plug it in the wall. The heat setting is always the same and safe. You can feel the massage down to at least a quarter inch below the surface of the skin. I get each sole and back of toes warmed in about 3 minutes per foot, then do a few seconds on the center of my chest on the scar line where things want to tighten up. Once or twice a day.
This is no cure but it is more effective than foot rollers or plain foot massage or socks, all of which I was doing and feet were still getting worse. For the first week or two with the vibrator my feet felt painful rather than numb, but I was told to expect this by PT and to continue anyway. The "pain" was an irresistible urge to flex and stretch my feet. Then it suddenly stopped and as long as they are stimulated feet just feel a bit chilly.
I think this improves the whole leg circulation. Thighs had been feeling heavy and suddenly improved at the same time my feet improved.
I had 2 rounds of 5-FU for another cancer.
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16Chirstine
Your words gives me hope, thanks for posting
I so want to have warm feet and no pain.
Chickadee, so good to read the socks are working for you.
dsgirl
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16Christine, thanks. Something else to look at and try.
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16Christine, Are you saying the 5-FU caused your numbness? I have always thought mine came from a platinum drug, but I've had 10 rounds of 5-FU. I have used a back massager on my feet (no heat) and a neck massager (with heat) also. I agree that, initially, it caused my foot to have mild pain discomfort, but I reasoned that feeling something might actually be a good thing in this case. Getting my husband to massage my feet with lotion would make my feet feel good during the massage, then more discomfort right after, then feel better in the hours that followed.
Now I think that anything (like heat, exercise, massage) that gets the circulation going in the feet might be beneficial in helping the nerves recover. I have nothing to support that theory but time will tell. Funny you mentioned the strong urge to flex your feet. I have that compulsion too.
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elimar -
Yes, my guess was the 5-FU, it's the only chemo I've had (given with mitomycin C). My hands and feet were painful for the four days of each 5-FU round -- hand-foot syndrome. That went away, but gradually my toes and soles of my feet became numb 6-12 months later. Maybe my Arimidex (AI) doesn't help. And I had pelvic radiation for another primary cancer plus a hysterectomy for endometrial cancer (all in 2012) that messed up circulation a bit.
At this point I can't be sure what treatment caused what particular difficulty. Yours could be caused by either drug, or both.
Edited to add - Along with the heat massager, the best thing is a warm foot soak in Epsom salts (magnesium sulfate). It really gets the feet tingling. Actually after this long a time I have little hope of any more nerve recovery, I'm just trying to maintain reasonable blood circulation.
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Christine could you please tell me how long it took to get rid of hand/foot syndrome? I am 7 weeks PFC. It is driving me crazy! Thank you!!!
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I have to take Lyrica twice a day. I have been using it since it came out. Nothing else worked for me
I thought that our jacuzzi would help but made it worse.
I also take a vicodin after lunch and try to lie down for a while afterwards.
It all helps. I have had to deal with this now for 12 Years
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lovewins -
Sorry to hear that. Hand-foot drove me nuts but I think the worst of it faded within a week. I complained loudly and irrationally to the MO's PA about my symptoms and was really embarrassed when as soon as I shut up she had an explanation. That was just around the time I hit bottom and the MO had to send an ambulance to my home to get me to the hospital (2 weeks after 5 weeks of simultaneous chemo and rads) for dehydration, low platelets and other bad hematology. So hands and feet were the least of my worries at that time.
I do remember that my left shoulder where I'd just had the axial node dissection hurt just as bad as hands and feet -- as though tiny new areas of circulation were being killed off as well as the extremities.
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I got Periferal Neuropathy during chemo. It started during AC a d then got really bad during Taxol and I was taken off after two treatments. My feet are numb on the bottom, I fall, I fall over because I can't feel it if I step on my toes. It has been three years now and it is not improved. I cannot wear my cozy slippers because my feet just slide right out. My hands feel like I have gloves on and tingle just a liitle, enough to be annoying, My feet and legs get electrocution shocks and I just ride them out because there doesn't seem to be a way to predict them. So Grrrrrr.
I must just feel like moaning today, yes I can luve with this but I want it to go away.
Cranky Ginger
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Thanks Christine...Wow you went thru a lot! I hear ya....I have had a few melt downs since I had BC and I went thru far less than you have. My feet I think it is prolly mostly neuropathy...I have just started massaging my feet. At first it freaked me out to touch them because of how it felt. Glad you are getting some relief.
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