1. < Neuropathy

Desperate for Help! Neuropathy related to cancer or hereditary?

Posted by vtgal @vtgal, Apr 25, 2023

I was diagnosed with neuropathy about a year ago soon after starting on Letrazole for breast cancer. It has moved from my feet to my hands now. It is disabling and painful. I had to retire on disability which was not my plan. Nothing works for the pain. I have tried gabapentin, Lyrica, pregabalin and oxy. I use Sombra cream which helps somewhat. I’ve tried TENS, I use prescription Lidocaine patches, I have tried Tramadol, and all I can think of. It’s worse at night.

I believe my neuropathy may be hereditary. My mom had it but later in life. I’m 59 and she didn’t have it til about 80. I was thinking the Letrazole may have triggered it. I came off of it and am currently not taking any meds for the cancer. The neuropathy has only gotten worse.

I need a miracle! Does anyone have an answer to take away my pain? Thanks

Interested in more discussions like this? Go to the Neuropathy Support Group.

aaron_az | @aaroncush | Apr 27, 2023
In reply to @gina5009 "You do not mention where you have your pain. Is it in your hands. If it..." + (show)
@gina5009

You do not mention where you have your pain. Is it in your hands. If it is I have a suggeston for you. I have Raynaud's disease. This causes a compression of the blood vessels to my hands if they become cold. Therefore, it is important to always keep them warm. Gloves of course, but I find that Compression gloves are so much better. I also make some small square bags, fill them with rice and sew them closed Put them in the microwave for 1 minute. They are hot and stay warm for 5 or 10 minutes and they warm my hands. They are great if you are going outl they fit easily into coat or jacket pockets. Hope this helps.
Gina5009

Jump to this post

I get pain up and down my left side from my head to my toes, always moving around. Thanks for the suggestion.

REPLY
gina5009 | @gina5009 | Apr 27, 2023

Yes, I have the pain in my hands, Blood flow is cut off and they become quite cold
Gina5009

REPLY
kimegraves | @kimegraves | Apr 28, 2023
In reply to @vtgal "Same boat. I’m looking for answers. Get this…. Original PCP said neuropathy is due to Amyloidosis...." + (show)
@vtgal

Same boat. I’m looking for answers. Get this…. Original PCP said neuropathy is due to Amyloidosis. Rheumatologist said no. It’s not that. It’s radiation injury from radiation after lumpectomy. Radiation doc said no. Looks like a bone marrow issue. Oncologist said it’s not that! I’m back to now neurologist doing more tests and am going to do the genetic testing. It’s so frustrating!

Jump to this post

Hello @vtgvtctclara
I am so sorry that you have such pain!!!! Most of us that are experiencing neuropathy have great empathy for your situation. I have to say that Gabapentin has help me with my pain but I am on a high dosage. Everyone responds to medication differently and you have to find what works for you….. many of us offer advice and what works for us so perhaps you will find something that helps soon. I have also found that anything that contributes to an immunologic episode makes my neuropathy pain worse. If I have a day that I have high sugar intake I truly pay for it. It is very difficult but I try to eat healthy and eat large amounts of fruits and vegetables and protein. I also find that if I over exert myself I pay and have increased pain for days.
You have to find what is right for you. I have also found that physical therapy and exercise also helps decrease my pain. The worst part of my day is at night, pain just seems to be the worst, so I have increased my gabapentin and try to stay hydrated. Please stay in touch and let us know how you are doing. You have great support with this group!
Kim

REPLY
1 reply
bcdsat | @bcdsat | Apr 28, 2023

I am in the same situation as you. I am trying the red light therapy. There are tons of devices you can order at Walmart.com. Search under red light therapy. I ordered the handheld device. Have been using for 10 days and is helping pain, numbness, and bloodflow. My husband had arthritis in his thumb and knee. He used 2 times and no more pain. Chiropractors are charging 4,000 to 6,000 for their red light sessions!

REPLY
1 reply
bcdsat | @bcdsat | Apr 28, 2023
In reply to @annregister "OMG!!!!! I feel your pain. I hear it in your words. I was diagnosed with sensorimotor..." + (show)
@annregister

OMG!!!!! I feel your pain. I hear it in your words. I was diagnosed with sensorimotor Polyneuropathy and small fiber neuropathy. I have tried everything, with really bad side affects. Just today….I went to pain management (1st time) and I was told that it looks like I’ve tried all the go to medications. What they suggested was to lose weight, exercise, get my diabetes under control. Well….my primary Dr. took me off of my diabetic meds because he said I had my A1C under control and I would love to get back to my life….walking three miles a day, chasing and teaching first graders, and driving. So now what????? I am out on disability through work but that only last a year. I’m so stressed out. I’m in extreme pain 24/7. I don’t know where to go to from here. Why won’t drs. listen instead of making us feel like it’s our fault we’re sick and in pain?

Jump to this post

Try the Red Light Therapy on Walmart.com. Have tons of devices to choose from. Have been using for 10 days and is helping me with pain, numbness, and blood flow.

REPLY
1 reply
vtgal | @vtgal | Apr 28, 2023
In reply to @bcdsat "Try the Red Light Therapy on Walmart.com. Have tons of devices to choose from. Have been..." + (show)
@bcdsat

Try the Red Light Therapy on Walmart.com. Have tons of devices to choose from. Have been using for 10 days and is helping me with pain, numbness, and blood flow.

Jump to this post

Thanks! Will check it out

REPLY
1 reply
vtgal | @vtgal | Apr 28, 2023
In reply to @bcdsat "I am in the same situation as you. I am trying the red light therapy. There..." + (show)
@bcdsat

I am in the same situation as you. I am trying the red light therapy. There are tons of devices you can order at Walmart.com. Search under red light therapy. I ordered the handheld device. Have been using for 10 days and is helping pain, numbness, and bloodflow. My husband had arthritis in his thumb and knee. He used 2 times and no more pain. Chiropractors are charging 4,000 to 6,000 for their red light sessions!

Jump to this post

Sounds awesome. Thanks!

REPLY
vtgal | @vtgal | Apr 28, 2023
In reply to @kimegraves "Hello @vtgvtctclara I am so sorry that you have such pain!!!! Most of us that are..." + (show)
@kimegraves

Hello @vtgvtctclara
I am so sorry that you have such pain!!!! Most of us that are experiencing neuropathy have great empathy for your situation. I have to say that Gabapentin has help me with my pain but I am on a high dosage. Everyone responds to medication differently and you have to find what works for you….. many of us offer advice and what works for us so perhaps you will find something that helps soon. I have also found that anything that contributes to an immunologic episode makes my neuropathy pain worse. If I have a day that I have high sugar intake I truly pay for it. It is very difficult but I try to eat healthy and eat large amounts of fruits and vegetables and protein. I also find that if I over exert myself I pay and have increased pain for days.
You have to find what is right for you. I have also found that physical therapy and exercise also helps decrease my pain. The worst part of my day is at night, pain just seems to be the worst, so I have increased my gabapentin and try to stay hydrated. Please stay in touch and let us know how you are doing. You have great support with this group!
Kim

Jump to this post

Very helpful. Thank you for sharing. I am willing to try anything!

REPLY
vtgal | @vtgal | Apr 28, 2023
In reply to @vtgal "Thanks! Will check it out" + (show)
@vtgal

Thanks! Will check it out

Jump to this post

So it’s an actual light? Just sit under it or near it?

REPLY
davelobb12 | @davelobb12 | Apr 28, 2023

Just like me you have done it all. I tried accupuncture also. For sleeping the best think is Medical Cannibas. You don't have to smoke it. you can vape or gummies. It works. As far as pain the doctors don't understand this disease but if you can get something like Tramadol it will help. The Medical establishment has let us down. I dont know of any thing being done for this.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.