Neuropathy

[lisa in pain]

Hi my name is Lisa and I am 43 years old. I had chemotherapy for breast cancer my last treatment was in october of 2007. Right now there are no signs of cancer. I have been diagnosed with neuropathy which the doctor says was caused from chemo. I have yet to have an EMG ( next month ). I have been in pain since my first chemo which was 13 months ago. My neurologist has tried every medication out there and nothing works for me. Last visit he discussed putting in a neurotransmitter into my spine. I am not going to do this procedure because it is too risky. Also, he thinks I have some kind of joint disease or arthritis which is also causing me problems and pain. I have to walk with a walker or a cane. I only get about 3 hours sleep a night. I'm so glad I found this forum. I would like to know if there is anything else I can do for this condition. I have numbness in my hand, legs, and feet. Also, pain in the entire body. My muscles spasm constantly. Any help would be greatly appreciated. Thanks

[johnjean]

I believe the chemo wrecked my body also.Ever since chemo,I have developed ,neuropathy,hypothyroidism,tinnitis,and 50 lbs. of fat on my body.But I have Great Curly Hair thanks to chemo.We gotta keep our chin up and think of funny stuff that will happen with neuropathy. Like,when I fell out of the shower. ( hahaha ) Have a good nite. Jean

[lisa in pain]

I too have curly hair now, use to have straight red hair now I have curly black hair. Love the curls hate the black, dying it now. Are you still able to work? I can't work and have to apply for social security. Did you have breast cancer? The chemo also attacked a previous surgery I had on my back.(spinal fusion). I broke my back 6 years ago and was doing well til this. I too have gained about 30 pounds since november and I also fell out of the shower. Now have a chair I use in shower. Also have this great walker which we got for free from a friend. I love it, just wish I didn't have to use it. You keep your chin up too. Maybe they will find a cure for neuropathy one day. Lisa

[johnjean]

I too have curly hair now, use to have straight red hair now I have curly black hair. Love the curls hate the black, dying it now. Are you still able to work? I can't work and have to apply for social security. Did you have breast cancer? The chemo also attacked a previous surgery I had on my back.(spinal fusion). I broke my back 6 years ago and was doing well til this. I too have gained about 30 pounds since november and I also fell out of the shower. Now have a chair I use in shower. Also have this great walker which we got for free from a friend. I love it, just wish I didn't have to use it. You keep your chin up too. Maybe they will find a cure for neuropathy one day. Lisa
Hello Lisa. I have not worked since the lung cancer,an upper lobectomy was performed,took a while to heal. I'm collecting S.S. disability,hope you get yours soon. Yeah,I have a chair,but only use it to shave the legs. The VA gave my husband a wheelchair,a walker or two,a cane,all in storage. I'm not ready for all that yet. Nice chatting Lisa. Have a good day. Jean

[DKENEPP]

I use 150 mg Topamax and Vicodin. Don't know if you tried it. But I never had cancer but my son did at age 22, during finals at college, stage 2 testicular cancer. Had the surgery and started treatment every day. First radiation. His treatment was as 2pm and he vomited every day from 6pm until 8pm. He was only 135lbs to start with and went to 122lbs. None of the meds helped. So he started smoking weed. He never vomited again and gained weight, and tolerable pain level. I made him tell the doctor, he said do what ever you have to. If you lose any more weight, in the hospital you will go.

Not telling you what to do, but there is medical marijuania for a reason...it works.

[johnjean]

I would love to smoke some weed for my neuropathy,but I'm chubby enough.I take 10 meds a day,two, puts weight on me.No more meds,not even pot. Jean

[DKENEPP]

Topamax will make you lose weight unlike neurotin and the others. It is one of the better side effects.
This is terrible to say but I am in my 15th yr of this and as the nerves completely die off and the feeling is just numb it is easier to deal with..

I trip a lot and slurr and would never pass a DUI check point even thought I am sober. If a close my eyes and TRY to balance on one foot I will fall over with in a second. I look "kicked" with out the fun.

You need a good neurologist to help you. Don't stop at 6 or 9 it took 8 years for some one to believe me and just this year to get a diagnosis. Be relentless, like a kid who wont take no for an answer. Get mad and make them listen. It works. If you just give up you will end up sitting in the house as a couch potatoe as life goes by.

There is fun to be had! I am 50 and I probably went to 30-40 concerts last year. From old 80's bands, cuz my friend at work it stuck in the 80"s to alternative like Clutch, Audioslave, FooFighters.
We travel everywhere...you only go around once.

Just the other weekend we were at a 2 day festival in Columbus Oh, Rock on the Range. It was great.
The kid next to me was only 21, but we had a great day with him and his friends and hooked the next day. I gave him a Debbie does Dallas hat, they were giving them away and had to explain it to him. Told him to ask his granddad. Told him Debbie does alot of things and goes alot of places his granddad will explain. He laughed and wore the had for 2 days like an idiot.

You have to push to get the right Dr and Meds, dont give up. I did and lost a couple of year. You hurt just as much staying home as going out. Hang in there, it does get better, you do develop a pain tolerance. But pain meds are necessary.

Go have some fun!!!!

Dani :)

[johnjean]

Haven't tried Topamax yet.I take Lyrica 400mg & pamelor 75mg daily.I 'm doing OK but not great.My neuropathy started 3 years ago. I was on Cymbalta plus Lyrica,both are $118.00 each. I stopped the Cymbalta and I'm so happy the SWEATS stopped. I stopped wearing makeup,wore my hair in a ponytail and did not want to socialize.I was WET WITH SWEATS x 20 times a day,but never at nite.Menopause you're thinking,I did that x 46. 59 now.My Husband is happy also ,the electric bill went down.We live in S.Florida,our winter is hot also,Cymbalta does stop the pain tho. Of the 10 meds I take I didn't know which one was the culprit. Cymbalta was it! So GLAD my sweats are over.And now the other issues of my body... Take Care Jean

[DKENEPP]

Hi, I am going to be 51 and haven't done the "change" yet, as gram calls it. She was 60 and still hot flashing. I can't wait because I am always freezing, but that is because everything is numb and I can't feel temperatures I guess.

But I just wanted to tell you that Lyrica's side effect is weight gain, at least that is what my doctor told me. And with out the Topamax or something like it to block the signals, a morphine drip probably wouldn't stop the pain. At one point I was in lala land on a fentinol patch which is highly profitable on the black market. It is like morphine, it gets release throught the skin over a couple a days and then you put a new one on. The guys at work were offering me $75 a patch, can you believe it!!! And the dumb guys said they would slit them open and suck on them. That means a 3 day dose at once, death you would think. But they were so addicted to all kinds of stuff I guess they were lucky to stay alive. I had to tell management so they would leave me alone.

But the point is even with that plus Ultram an opiot I was in pain. Only got relief with
Topamax and Motrin and occassional small dose of vicodin. Doctor said it stops the seizure your body is having, blocks the goofy signals the damaged nerves are sending. She was right. Since mine are the small nerves, I can't feel anything topical anywhere now. I use the ducky that tells you the bath water is hot when bathing my grandchildren because when I feel its hot, it will peel your skin off.
I trip alot, can't feel legs and feet, or tongue. I am a real party!!! So my hands are so weak I can't snap the babies pants so I buy zipper sleepers. My daughter in law finally asked why the baby is changed when she gets back after I baby sit and my son told her you know her hands dont work.
She thought I was kidding.

I have had 3 seizures in 2 years, I hope that stops. Lost my license for 6 months, that sucked. But you have to be safe. Like I said what a party!!!!

Try the Topamax and try to keep positive it could always be worse! You survived the bad part for a reason.....you must be here for something right?????

Dani :)

[johnjean]

Hi Dani, Isn't Topamax made for headaches? You mentioned seizures,what brought them on ? The neuropathy ? Please say it ain't so ! I was told My neuropathy would not get any worse,which has been true except for the break thru pain.How is the neuropathy affecting your hands,mine get very painful when not in use. Like sleeping,watching TV,can't close my left hand at all.Funny thing happens in a store,I use my right to grasp the paper money and the other for coins,hell,I can't close myhand and down they fall.haha.Must take my hand to the Body Shop for repairs!! haha... Good Day Jean