Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

Jump to this post

try *Gabapentin,probably at 300 mg.,twice or t hrice a day!*

*Another drug is an antidepressant called CYMBALTA.*

Liked by grammydove, Beverly

REPLY
@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

Jump to this post

Hi EMILY ANNE…I noticed in your note something about restless leg
syndrome and lately I have not seen anywhere a tip that I found in our
local newspaper years ago in a column written by an MD and seems to work for
some. And it did/does for me. When I tried it, it seemed to work for me
but I was convinced the results were psychosomatic. The tip is to put a bar
of soap under your sheet at night. Simple enuf and yet questionable. After
successfully using this tip for years (don’t argue with success) , one night
my legs were all over the place. I figured at first that it truly was
psychosomatic. But I looked for the bar of soap, I couldn’t find it at
first. It had slid off the mattress and was almost under the mattress where
the sheet got tucked under the mattress! I put it back in place and no
problems since. And that also was years ago! I do remember though that
there is one brand of soap that others say doesn’t seem to work…and if I
remember correctly it was Dial. And the bar doesn’t have to be under your
legs…just under the sheet somewhere on the side!!!!!! But if one brand
doesn’t work, try one other. And I’ve had it under cotton as well as
flannel sheets. Many wrote to that column to say it worked for them. The
column Dr. admitted many times, no one knows how/why it works. @gailfaith

REPLY
@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

Jump to this post

I USUALLY GO TO THE MAYO CLINIC WEBSITE FIRST. U WILL FIND RESTLESS LEGS COVERED THERE.

Liked by grammydove

REPLY
@martid

There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.

What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.

Jump to this post

GABAPENTIN AND CYMABALTA HAVE BEEN RECOMMENDED BY THE MAYOCLINIC AND OTHERS.

Liked by Beverly

REPLY

I have taken the Meds mention here. Those Meds over time , stress the liver and no longer helped. My liver test where not good, so now I take very little Meds and avoid damaging my liver miore with long term medicine useage. As I age , my body canno longer handle those strong Meds. Healthy eating and moving around gently helps. At night , I start mindfulness and drink tea and massage. I feel less stress, more in control and kettle to none pain med. if needed. And “no” , I am not a old person, just smart about my body’s needs.

REPLY
@timerdude

I have taken the Meds mention here. Those Meds over time , stress the liver and no longer helped. My liver test where not good, so now I take very little Meds and avoid damaging my liver miore with long term medicine useage. As I age , my body canno longer handle those strong Meds. Healthy eating and moving around gently helps. At night , I start mindfulness and drink tea and massage. I feel less stress, more in control and kettle to none pain med. if needed. And “no” , I am not a old person, just smart about my body’s needs.

Jump to this post

Ask your *Nephrologist what Meds U CAN TAKE. A NO may mean that the kidney
does NOT clear them well and so they will build up in the blood and maybe
elsewhere.*

Liked by JohnWBurns

REPLY

I tried Gabapentin for a couple of months. I didn’t work for me, and it turned me into a zombie and made so many mistakes at work. I’ve tried the usual, Mirapex, Requip; they don’t work for me either. I was put on a Fentanyl Patch for pain, and that seemed to take care of my restless leg syndrome. I’ve been on the same dosage for years, but after my seventh spine surgery in January, I decided to see if I could come off the Fentanyl and have lowered my dosage from 100 down to 75 mcg/hr and it still works for RLS. It might be worth considering.

REPLY
@painwarrior

I tried Gabapentin for a couple of months. I didn’t work for me, and it turned me into a zombie and made so many mistakes at work. I’ve tried the usual, Mirapex, Requip; they don’t work for me either. I was put on a Fentanyl Patch for pain, and that seemed to take care of my restless leg syndrome. I’ve been on the same dosage for years, but after my seventh spine surgery in January, I decided to see if I could come off the Fentanyl and have lowered my dosage from 100 down to 75 mcg/hr and it still works for RLS. It might be worth considering.

Jump to this post

Y DO I GET THE THOUGHT THAT U DID NOTt CONSULT MAYHOCLINIC.ORG?.

just rechecked, under “Restlss Legs Syndrome” and saw several drugs to try. However, U MUST look at side affects of each:Ambien might be a problem after 2-4 weeks and others too might be a problem. Check with your Neurologist!!

REPLY
@painwarrior

I tried Gabapentin for a couple of months. I didn’t work for me, and it turned me into a zombie and made so many mistakes at work. I’ve tried the usual, Mirapex, Requip; they don’t work for me either. I was put on a Fentanyl Patch for pain, and that seemed to take care of my restless leg syndrome. I’ve been on the same dosage for years, but after my seventh spine surgery in January, I decided to see if I could come off the Fentanyl and have lowered my dosage from 100 down to 75 mcg/hr and it still works for RLS. It might be worth considering.

Jump to this post

Here is the information from Mayo Clinic on Restless Legs Syndrome that @ujeenjack referred to above http://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/basics/definition/con-20031101

REPLY
@timerdude

I have taken the Meds mention here. Those Meds over time , stress the liver and no longer helped. My liver test where not good, so now I take very little Meds and avoid damaging my liver miore with long term medicine useage. As I age , my body canno longer handle those strong Meds. Healthy eating and moving around gently helps. At night , I start mindfulness and drink tea and massage. I feel less stress, more in control and kettle to none pain med. if needed. And “no” , I am not a old person, just smart about my body’s needs.

Jump to this post

Timerdude when my meds caused my liver to have a fourth of liver damage,
my sister in law gave me an Atkins diet book. I read an put myself on
the diet. I started on the first level. I was really dedicated to
it because of what I had studied. When I went back to the Dr. and had
the live test again it had healed it self. He asked what I had done
differently and I showed him what I was eating and how I cut all
sugar out of my diet. I’ve never been a consumer of liquor. He told
me to live on this diet as if I were a diabetic. I’ve been on it for 12
years. I do have cheat day’s!!. If you have ever had gout you can’t do
the diet. A lot of people stop the diet because they say it makes them
feel bad. They feel bad because the body detoxifies.

REPLY
@painwarrior

I tried Gabapentin for a couple of months. I didn’t work for me, and it turned me into a zombie and made so many mistakes at work. I’ve tried the usual, Mirapex, Requip; they don’t work for me either. I was put on a Fentanyl Patch for pain, and that seemed to take care of my restless leg syndrome. I’ve been on the same dosage for years, but after my seventh spine surgery in January, I decided to see if I could come off the Fentanyl and have lowered my dosage from 100 down to 75 mcg/hr and it still works for RLS. It might be worth considering.

Jump to this post

Thank you for the link. It’s strange, but the RLS moved from my legs into my arms. So I guess you could say I have Restless Arm Syndrome.

REPLY
@painwarrior

I tried Gabapentin for a couple of months. I didn’t work for me, and it turned me into a zombie and made so many mistakes at work. I’ve tried the usual, Mirapex, Requip; they don’t work for me either. I was put on a Fentanyl Patch for pain, and that seemed to take care of my restless leg syndrome. I’ve been on the same dosage for years, but after my seventh spine surgery in January, I decided to see if I could come off the Fentanyl and have lowered my dosage from 100 down to 75 mcg/hr and it still works for RLS. It might be worth considering.

Jump to this post

U R A RESTTLESS PERSON!

REPLY

It’s actually called Periodic Limb Movement. I have RLS but my daughter has Periodic Limb Movement. When I had my sleep study done, my legs moved 7 times per minute all night long! Symptoms have been found to be worse with a low ferritin leveI. I take B12 but have also been on Mirapex (Pramipexole) since 1991 with great relief. I had to go from .5 to 1.0 mg after being on it about 5 years, but haven’t had to increase it since. I only take it at bedtime or when taking a long flight. I also find warm baths with a good amount of epsom salts helpful.

REPLY

I would like to thank each of you who replied to my post. I have ready them all carefully and will go back and make detailed notes as I have time. They are all very interesting and it is reassuring to know I am not alone. You feel that way when you seem to be suffering from something that is a little out of the norm. People tend to consider you a hypochondriac sometimes if you don’t have a “normal” disease.” I was lucky and got an appt today with a nerologist for the first time. My appt had been for NOV but there was a cancellation and my faithful husband/caregiver had been checking everyday so what a blessing. God bless you all with a beautiful day.

REPLY
@emilyanne

I would like to thank each of you who replied to my post. I have ready them all carefully and will go back and make detailed notes as I have time. They are all very interesting and it is reassuring to know I am not alone. You feel that way when you seem to be suffering from something that is a little out of the norm. People tend to consider you a hypochondriac sometimes if you don’t have a “normal” disease.” I was lucky and got an appt today with a nerologist for the first time. My appt had been for NOV but there was a cancellation and my faithful husband/caregiver had been checking everyday so what a blessing. God bless you all with a beautiful day.

Jump to this post

So glad you got an earlier appointment @emilyanne. I hope you’ll have a minute to let us know what you find out. All the best.

REPLY
Please login or register to post a reply.