Neuropathy help

[sksjasams]

I have idiopathic peripheral neuropathy in both feet, up past my ankles. Currently taking two prescriptions. The best they do is take edge off.

Is there anyone who has found anything that helps?

I tried 15 sessions of acupuncture. It didn’t help at all, and if anything, only made it worse. I didn’t give up because she was so sure she could help.

I tried 4 sessions of cold laser therapy. And I bought a tens unit, but have only tried it once. Has anyone had either of these things help?

I have edema in both legs. I got custom compression socks but they need to be adjusted because they were too tight and making my numbness worse.

I’m feeling pretty desperate at this point…

 

[Southernmiss]

Have you tried vitamins and supplements? My mom has seen improvement with supplements recommended by her doctor.

 

[sksjasams]

Have you tried vitamins and supplements? My mom has seen improvement with supplements recommended by her doctor.

Yes, I’m currently taking alpha lipoic acid, turmeric and krill oil.
Also, multivitamin, vitamin D3, vitamin C, and airbore.
I was taking vitamin B100, but my levels were too high, so I was told to stop that.

 

[tarheelmjfan]

Nortriptyline is the only medicine I've ever found that really helps. Nothing else worked for me. One major warning... if you ever decide to stop taking it, you may experience suicidal thoughts. Only you know, if having relief from the pain & burning is worth that.

 

[princesscinderella]

Here’s an article about antidepressants being able to help treat neuropathy. Maybe it can help you. My neighbor was having this issue with Chemo and they prescribed him antidepressants to help and it worked. https://www.aafp.org/pubs/afp/issues/2006/0601/p1933.html

 

[prairie_girl]

Gabapentin! It will change your life.

 

[ronandannette]

Gabapentin! It will change your life.

Similarly, I was prescribed pregabalin for crazy neuropathic facial pain caused by an infection inflaming my cranial nerves. I have literally never been so sick in my life and the relief was MAJOR in only a few doses. As a happy side effect, the chronic pain, numbness and tingling in my hands from carpal tunnel virtually disappeared while I was taking it, although I didn't really realize that until I stopped the drug therapy and it came back.

@sksjasams - please ask your doctor specifically about these two drugs, if you're not already taking them. One or both of them could really make a difference for you.

 

[Pea-n-Me]

What’s going on with the edema in your legs?

 

[sksjasams]

Thank you for your replies!

The two prescriptions I mentioned I am taking are gabapentin, and then added in duloxetine (cymbalta, an antidepressant) almost two months ago.

I will ask my doctor about Nortriptyline.

Has anyone tried cold laser therapy or a tens unit? or anything else you found helpful?

 

[sksjasams]

What’s going on with the edema in your legs?

I’m really not sure. I’m on furosemide (lasex). And I’ve seen an OT a couple times. But she is only recommending compression..the custom stockings. She also wants to try to get me approved for this pump thing.

 

[tarheelmjfan]

Thank you for your replies!

The two prescriptions I mentioned I am taking are gabapentin, and then added in duloxetine (cymbalta, an antidepressant) almost two months ago.

I will ask my doctor about Nortriptyline.

Has anyone tried cold laser therapy or a tens unit? or anything else you found helpful?

Gabapentin didn't work for my sister & me either, so I'm not surprised it isn't the answer for you. I hope you find the answer soon.

 

[Pea-n-Me]

I’m really not sure. I’m on furosemide (lasex). And I’ve seen an OT a couple times. But she is only recommending compression..the custom stockings. She also wants to try to get me approved for this pump thing.

I hope information in these links can help you.

https://www.niddk.nih.gov/health-in...e-diabetic-neuropathies/peripheral-neuropathy

https://www.trihealth.com/institute...ment,nerve, causing swelling and inflammation.

To help with the edema, which can contribute to nerve pain, you should watch your sodium intake (no salty foods and snacks, which cause fluid retention) and be sure to elevate your legs when sitting - even better if you can recline yourself at that time, to help with fluid flow. Idk if you’ve tried seeing a PT to help with some of these issues but that might be worth a try, also. Try to stay as active as you can to keep things moving and flowing. These are functional remedies.

Medications help dull the pain but unfortunately can come with side effects. Have you had your Vitamin B12 levels checked? You didn’t say if you’re diabetic (and you don’t have to say) but those can run low if you are, and you can buy them in the vitamin aisle to take. Finding a long term solution will behoove you, so I would try to work on getting some of the edema out of your feet and legs if it were me. Work with your PCP to see if the lasix dosage is where it should be right now and possibly see a nutritionist for dietary advice and ideas.

Good luck. I know how difficult this can be.

 

[cabanafrau]

First thing I would try is PT, along with trying to be more active. Been working for months to get my mother in shape to go through hip replacement. One of her biggest issues and biggest pain drivers was edema in her legs. Once we got her in the routine of PT and exercising at home the edema finally resolved. A couple weeks ago she tweaked her hip during PT and was unable to attend PT for a couple weeks and reverted to her constantly sitting and doing nothing routine. The edema came right back and her pain shot through the roof, making her even more reluctant to do anything. Finally got it through her head that she needed to get moving again, even if it just meant starting with lots of ankle pumps while sitting. Once she gave it a serious effort the edema began to subside a bit, easing the pain somewhat and causing her to realize she could eliminate the edema and the issues it causes by pushing herself to resume as much activity as she could bear. Now that she firmly understands how much worse she feels when she has the edema she's very committed to staying on top of it. Activity definitely keeps the lymphatic system moving much better.

 

[sksjasams]

Thank you again for your helpful replies! I really appreciate it.

I’m not diabetic. I will ask my doctor about nerve entrapment though.
My B12 level was high/normal and my B6 was way too high, so I had to stop the B100 vitamin.

I’ve been doing PT since May. Mainly to strengthen core and hips.
She did suggest a foot peddler last week. Does anyone have one of those?

I‘m definitely going to start doing those ankle pumps. Never heard of those before. I work at a desk and can’t elevate my feet there because it hyperextends my knees (I have arthritis in my knees).

Thank you again!

 

[tarheelmjfan]

Thank you again for your helpful replies! I really appreciate it.

I’m not diabetic. I will ask my doctor about nerve entrapment though.
My B12 level was high/normal and my B6 was way too high, so I had to stop the B100 vitamin.

I’ve been doing PT since May. Mainly to strengthen core and hips.
She did suggest a foot peddler last week. Does anyone have one of those?

I‘m definitely going to start doing those ankle pumps. Never heard of those before. I work at a desk and can’t elevate my feet there because it hyperextends my knees (I have arthritis in my knees).

Thank you again!

It sounds like we're in a similar situation. My neuropathy is due to arthritis related nerve damage.

 

[Pea-n-Me]

Thank you again for your helpful replies! I really appreciate it.

I’m not diabetic. I will ask my doctor about nerve entrapment though.
My B12 level was high/normal and my B6 was way too high, so I had to stop the B100 vitamin.

I’ve been doing PT since May. Mainly to strengthen core and hips.
She did suggest a foot peddler last week. Does anyone have one of those?

I‘m definitely going to start doing those ankle pumps. Never heard of those before. I work at a desk and can’t elevate my feet there because it hyperextends my knees (I have arthritis in my knees).

Thank you again!

A lot of it is related to gravity.

https://www.medicalnewstoday.com/articles/320986

If you can’t elevate your legs at work, you definitely should when you get home. And try to recline, so the fluid that’s down below can freely leave your lower extremities. The sitting position keeps it trapped there.

 

[prairie_girl]

Gabapentin didn't work for my sister & me either, so I'm not surprised it isn't the answer for you. I hope you find the answer soon.

That’s surprising. I know a lot of people who take it and have never heard of it not working for someone. I hope you found some relief.

 

[tarheelmjfan]

That’s surprising. I know a lot of people who take it and have never heard of it not working for someone. I hope you found some relief.

I eventually did, thanks.

 

[LMRSTAR13]

I'm so sorry you are experiencing this. My husband had such bad neuropathy he couldn't walk. His pain management doctor prescribed gaba, duloxitine and tizanadine and oxycodone
He could not take the oxy because of the side effects. After a year of treatments he is better. He has come a long way. But he is not totally pain free. He had a spinal stimulator installed as well. That has not helped him. the only way out of this is through it. Keep trying, stay positive and ask for help. I will pray for you.

 

[ronandannette]

That’s surprising. I know a lot of people who take it and have never heard of it not working for someone. I hope you found some relief.

I also found a measure of instant relief in acupuncture (which I had never tried before), but the OP says it didn't help her at all. I guess everyone is different.