Chemo neuropathy

unstpabl1 · 07-19-2010, 03:46 AM

Quote:

Originally Posted by mrsD

I like that analogy... I was limping along earlier this summer like that old DeSoto! The fins back then! Ahhhhh... you know there is a TV series set in the mid 60's called MadMen, on AMC...I've been watching those cars avidly. HEHEHEHEH.. Season 3 is on Comcast onDemand and season 4 starts next week! (I'll miss that because of our vacation, and hope they put it up onDemand too) When I was a little girl in the 50's, and teen in 60's I loved those old cars! They have great detail on that show, with all sorts of stuff from the 60's..the cars are great! I also enjoy the clothing, details. If you like nostalgia, you'll love MadMen! (MadMen stands for Madison Ave. Men...who began most of our advertising. It is very interesting to watch to see how they come up with ads etc)

You might find the d-ribose I am testing out useful too. It has really perked me up, I have to say.
Here is that thread:
http://neurotalk.psychcentral.com/sh...ghlight=ribose

My right ankle which has been killing me lately since spring, has finally started to go down...I've had 3 normal days in a row this week. The swelling is down, and the stabbing nerve quiet for now. I am pleased. But no guarantees in this PN life...so it may return. I will enjoy the peace while it lasts!

I am thinking the ribose is working!

My grandma had an old Desoto. Don't have cable so I haven't seen Madmen but heard it was great. I'll look into the D-Ribose. Hope you have an awesome vacation

GolfPat · 07-21-2010, 06:45 PM

I was supposed to take Gabapentin 3 times a day, 600 mg each time. I was falling asleep standing up! I now only take it at night - 900mg. I see some difference over not taking it at all which I did for a week, so I continue the nighttime only program which my doctor approved. And, of course, I sleep like a baby. I also have tried acupuncture and electrical pulses, neither of which helped me at all. I'm pretty well convinced that the chemo damaged my nerves severely and they ain't gonna be getting any better but I keep plodding along doing whatever I can to enjoy life. Walking the golf course it out, but there are still carts

Quote:

Originally Posted by unstpabl1

Hi. I discovered this forum last night and spent the last 6 hours or so reading thru it till I confused myself

Thanks to the folks that run it. There is a ton of great info.

I have neuropathy in the toes and fingers from chemo that ended last December. It got worse about a month and a half after chemo ended. Minor in the fingers and after reading the forum I'm much better off than most. I didn't know anything about this before.

I've been on gabapentin since Feb. I absolutely hate it. I try to only take 300mg's a day. My prescription is that 2x's a day. I'm in a fog. I gotta get off this crap

I read thru the suppliment section and am wondering if I'm on the right track. Today, I bought Jarrow Methyl B12 5000, Doctors Best Benfotiamine 150 mg, Acetyl L-carnitine 250 mg and Magneseum 1250 mg.

I probably can't get tested because I'm on Medical but will ask. Reading about B-12 deficiencies, I'm a good bet

Using the Suppliment Sticky I'm looking at Methyl B12 5000 mcg once a day?
500mg Acytyl once or twice a day? 300mg Befotiamine once or twice a day?
Magnesium twice a day? I picked it all up this morning

Yup it's a newbie question

Is it better to take them all together or separate them through the day and to start with a lower dose?

I would appreciate any guidance as this is new to me. Being a regular on many forums I realize what a PIA it is sometimes to answer the same things, but I swear I read asw much as my brain could handle in my gabapentin fog

Thanks
Mike

unstpabl1 · 07-22-2010, 01:02 AM

Quote:

Originally Posted by GolfPat

I was supposed to take Gabapentin 3 times a day, 600 mg each time. I was falling asleep standing up! I now only take it at night - 900mg. I see some difference over not taking it at all which I did for a week, so I continue the nighttime only program which my doctor approved. And, of course, I sleep like a baby. I also have tried acupuncture and electrical pulses, neither of which helped me at all. I'm pretty well convinced that the chemo damaged my nerves severely and they ain't gonna be getting any better but I keep plodding along doing whatever I can to enjoy life. Walking the golf course it out, but there are still carts

I caddied before this happened

Now I'm extremely uncomfortable in shoes. so I'm not working at all.

i was instructed to take 300mg gabapentin 2xs a day, but it really brings me down. So I mostly was taking 1 at night and 2 when needed. Yours is much more severe looking at the dosage, but I do want to offer you some optimistc yet guarded hope

I'm not quite at the 2 week mark since starting this and I'm not taking the full dosage of supplements that I listed here. I'm not taking alpha liopic/R-liopic yet. i'm only taking 300mg benefiatimine, 500 mg acetyl L ....., 1 magnesium, CoQ10.

I've had 2 days where i needed Gaba 2x's and I'm on my second over 48 hour period without any. One of the days I needed a 2nd gaba, I slept for a few hours w/o socks on. A first since this started. I also am more upbeat since starting this so the supplements are helping my mood.

So I'm saying that maybe this regimen may lower the amount of gabapentin I'll need and hopefully eliminate it entirely. Personally, I expect a full recovery

Hopefully, if it's helping me maybe it'll reduce the dosage of gaba for you.

I'll post here either way so others can see what happens

And carts are the only way to play golf, because they have drink holders

Be Well

JoanB · 07-22-2010, 06:06 PM

Quote:

I like that analogy... I was limping along earlier this summer like that old DeSoto!

What was that funny-looking AMC car from the 70's that had a tendency to burst into flames on impact? That'd be me, or at least my feet.

Gabapentin: I was on 3600mg a day, and didn't notice a bit of sleepiness. One neurologist was heard to ask, "how is it possible that you're conscious?"

Funny how we have such different reactions to these things.

unstpabl1 · 07-23-2010, 12:28 PM

The AMC Pacer or the Gremlin. The pacer looked like a fishbowl on wheels. It may be the ugliest car ever

You woulda made a great fighter. Nobody coulda knocked youse out

On another thread it was recommended to take CoQ10 AM and PM 100mg. I'm taking an Ultra high absorbtion buy Qunol. Says up to 6x's the absorbtion. can you take too much CoQ10? Think the Ultra High absorbtion thing is a gimmick?

Oh I'm on the 2nd 48 hour period in a row w/o needing Gabapentin(a first) and Week 3 starts today

JoanB · 07-23-2010, 12:50 PM

Yeah, I thought it was the Pacer too, but I Googled "AMC Pacer fire" and didn't find any reference to that little problem.

But here's validation of your "ugliest" speculation: http://theweeklydriver.com/2010/01/2...rs-ever-built/

I'm not a good fighter, though...I punch like a girl in addition to throwing like one.

Kitt · 07-23-2010, 01:04 PM

Quote:

Originally Posted by JoanB

Yeah, I thought it was the Pacer too, but I Googled "AMC Pacer fire" and didn't find any reference to that little problem.

But here's validation of your "ugliest" speculation: http://theweeklydriver.com/2010/01/2...rs-ever-built/

I'm not a good fighter, though...I punch like a girl in addition to throwing like one.

It was the Ford Pinto.

JoanB · 07-23-2010, 02:26 PM

Oh yeah! The Pinto!

Thanks Kitt!

unstpabl1 · 08-26-2010, 11:28 PM

Update: On 7/31 I decided to try training on my own at a friends kickboxing gym. I had about 3 more times prior to that where I only needed Gaba every other day. Not saying I was doing great but it was an improvement. I had bad days as well

I was wondering if doing workouts that required a lot of movement of the ball of my foot and toes might increase circulation and aid healing. This is where most of my trouble is. I realize this is a risk

It's been back and forth. Some really bad, but almost always recovered enough to work out a little the next day. However last week was bad and I decided to take a few days off from the gym. I took Friday-Monday off. I took Gaba Thursday night and didn't need it again till late Monday afternoon. Almost 4 full days

I'm still only doing the supplements 1 time a day but will up it in the next few weeks.

Also started taking baths with Epsom salt as I'm sore. This may be helping my feet but the verdict like all of this is still out

I'm think I'm slowly improving

mrsD · 09-01-2010, 06:44 AM

Epsom salts really help me. I buy them in bulk at Costco in fact!

If the ball of your foot really hurts, I'd make sure you get X-rays of that. The sesamoid bones are there and can move or crack or crush and cause alot of pain. Sometimes the tendon itself is the culprit. I had one steroid shot in my left foot for this years ago and it helped. Both of my feet have sesamoid bone damage, and my podiatrist told me to only walk in firm soled shoes...not spongey types. This prevents the bone fragments from moving around and inflaming the tendon sheaths more. Surgery for this is possible but he said may lead to a bunion down the road, so we manage it with Salonpas and conservative activities.

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