Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016
@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.

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after  having  kemo I  started  have bad flashes My Dr  tried everything. Then by accident  my pain management  Dr  gave me cymbalta for fibromyalgia   It didn’t  help my fibromyalgia but I noticed it took away my flashes. Maybe  it would  work for you 

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Thank you for the suggestion. I’ll Ask my doctor about it. Have a good night

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@dbentley

I have been dealing with painful peripheral neuropathy for about 10 to 12
years. My main pain is in the bottoms of my feet but the neuropathy has
worked up to my knees. You talk about a frustrating experience. I
have tried every prescription, compounds, Anodyne therapy, Acupuncture and
Spinal Cord Stimulator. I am on a new and improved Spinal Cord Stimulator
now. I was told when all else fails the last thing they can do is a Pain
Pump. Well I have had that for about 2 years and get a steady dose of
Hydromorphone, Fentanyl and Bupivicaine every day, all day long. I can
also take up to 4 Hydrocodone a day and I also take Lyrica. I have had
Bilateral Endovenous Laser Ablation in both legs and Tarsal Tunnel surgery
on both ankles.

My average pain level is 5 to 6 every day. Now my only hope is that one
of the programs of the new Spinal Cord Stimulator will help. I am
seriously considering going to Mayo Clinic. Would be an expensive trip
from Texas.

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Dbentley I am so sorry for all you have been through and still no relief. I hope this procedure will help you.

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@grandma41

Gabapenti. Totally helps me sleep, but I don’t like the dizziness it has caused.

Sent from Yahoo Mail on Android

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Salena54 thank for your reply. I have both peripheral neuropathy And restless leg syndrome along sigh arthritis in my hip and spine. Night is the worst for rls I take requip and tramadol and. Natural sleeping Aid. Otherwise I would never sleep. I have a TENS machine for the neuropathy which I find to be quite affective though I still have pins and needles all the time in legs and hands and sometimes numbness. I used tha e migraines too so I feel for you they can be quite debilitating. Mine stopped zagged
Menopause. Thank you for your concern and I hope you can get relief soon.

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@painwarrior

I’ve been on a Fentanyl patch for years for my peripheral neuropathy. It’s the only thing that works to keep the burning pins and needles feeling at bay. My strength on the patch is 100 mcg/hr. I replace it at the same time every three days. I really can’t survive without it.

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ThAnk you you have a lot of strength too. Let us know how hour ms test turns out I will be praying for you too and all the others who are in pain

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@grandma41

Gabapenti. Totally helps me sleep, but I don’t like the dizziness it has caused.

Sent from Yahoo Mail on Android

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I’m glad you can get some sleep and have to use whatever works for you. Take care of yourself.

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@grandma41

Hi it is actually Valor II

Sent from Yahoo Mail on Android

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I put the brand in the previous email.   I’m not at home right now or I’d look it up for you

Sent from Yahoo Mail on Android

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@johnbishop

Hi – I’ve had peripheral neuropathy in my feet and now legs for a little over 10 years. I’m probably more fortunate than most since mine is mostly numbness and tingling and no sharp pains. My doctors had me on gabapentin for awhile but it did nothing for me and when I discussed it with a new doctor team I was told gabapentin is only for pain and not numbness. I had to have an ECS and MRI before I could meet with a neurologist. The tests confirmed I have nerve damage but we still don’t know the root cause. I have an appointment for May 2nd with the neurologist and I’m hoping to find out what type of neuropathy I have which may help when talking with other people with the same type of neuropathy who have found what works for them. Two excellent sources of information are the MN Neuropathy Association (http://www.neuropathy-mn.org/) and the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/).

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Thanks for the links. And keep us informed on how your neurologist turns out. You have had neuropathy for a long time. Mine has been about 4years and seemingly came out of nowhere. Take care.

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@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?

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Hi I have had peripheral. NeuropThy for about 4 years. It seemed to come from nowhere it was just there. I have been looking for a place to connect with others who have the same problem to see what works for them and mAybe I can help some one else.

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@dbentley

I have been dealing with painful peripheral neuropathy for about 10 to 12
years. My main pain is in the bottoms of my feet but the neuropathy has
worked up to my knees. You talk about a frustrating experience. I
have tried every prescription, compounds, Anodyne therapy, Acupuncture and
Spinal Cord Stimulator. I am on a new and improved Spinal Cord Stimulator
now. I was told when all else fails the last thing they can do is a Pain
Pump. Well I have had that for about 2 years and get a steady dose of
Hydromorphone, Fentanyl and Bupivicaine every day, all day long. I can
also take up to 4 Hydrocodone a day and I also take Lyrica. I have had
Bilateral Endovenous Laser Ablation in both legs and Tarsal Tunnel surgery
on both ankles.

My average pain level is 5 to 6 every day. Now my only hope is that one
of the programs of the new Spinal Cord Stimulator will help. I am
seriously considering going to Mayo Clinic. Would be an expensive trip
from Texas.

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Thanks, according to the Doctors and the Techs, the new Stimulator is
supposed to be working wonders on some people. They told me last week
that most patients will get relief within the first programs, I have just
had my 11th and still nothing. But with this type stimulator there are
supposed to a lot of potential programs so maybe there is one out there for
me. The Doctor did say that they would consider it a success if I got 40%
relief. I would gladly accept that.

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Gabapentin does nothing for my pain, but makes me weak. Fentanyl
patches do nothing either. I am jealous of people who get relief and
do not have bad side effects.

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@rabbit10

Thanks again John I will ask about the patch. Do you also have heavy legs and clumsiness.
My doc tells me to walk but I feel so weak I don’t walk straight. Clumsy like I was drunk. So I do t walk do you get any form of exercise?

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You do need a cane for off balance walking or can have bad fall. Might
even need a walker. I have to use one or the other.

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