If anyone heard of a pain condition similar to this?

My sister has had uncontrollable diabetes many years. It has begun to lead to horrible neuropathy, where her feet are painful and numb, in both feet. But before that started a few years ago, about eight years ago she started getting massive pains in both legs , with twitching, 24/7. It has never stopped. She was tested for neuropathy then with EMG, but it was negative.

However just one diabetes specialist believes this is also neuropathy. But three others said twitching isn't a typical symptom of it. So my sister is not only in physical, but mental anguish daily wondering what this is. Now the neuropathy has made her skin so INCREDIBLY dried out, it breaks my heart. She can never go anywhere with me like before because of the pain.

She is the best person you'll ever meet, and doesn't deserve a drop of this awful debilitating disease.
If anyone has heard of the pain condition in her legs, any ideas welcome. It's a fatigue in the legs too, as if you just ran a hundred miles and are about to collapse.
She talks about dying All the time, and I can't bear it. 🙁 She's my best friend. Any ideas ?

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aboveaverageaveragejoe · 51-55, M

Does she also have water retention in her legs and possible redness? Two things, reduced kidney function and/or a heart issue preventing blood properly circulating. Is she overweight or obese?

Have her doctor see if eGFR and BUN blood tests would be appropriate. Make sure there isn't elevated creatinine which is an indication of gout.

Good luck. I'm not a doctor and this is not medical advise.

Baybreeze · 41-45, F

She gets edema occasionally but she's thin..it's from the neuropathy in her feet🙁 Her blood flow is ok but she's getting discolored on feet because the blood leaks from neuropathy high sugars over time. @aboveaverageaveragejoe @aboveaverageaveragejoe

Muthafukajones · 46-50, M

Don’t you mean uncontrolled diabetes? Diabetes is treatable

HikingMan · 51-55, M

My ex wife has neuropathy, but it was not even close to what you’re describing. Her dad’s neuropathy however sounded a lot like this though.

He finally got years of relief from a surgical procedure he received at Laney Clinic in Burlington MA.

As I understand it they implanted a device in his brain that was attached to his pain centers and worked similarly to a pacemaker.

I can try to find out more specific information if you’d like and try to get back to you? It’s entirely possible that I’m misremembering it but I’m almost certain it was neuropathy based.

Baybreeze · 41-45, F

@HikingMan Oh yes I remember now you shared this not too long ago. I've heard of something very similar..Spinal stimulator. Where they implant a small device near the spine, that stops pain signals to brain. But her doctor said you have to have lower blood sugars, so that there's low risk of infection. It crushed her to hear she couldn't get it.
Yet I researched and found a medical article that did a study..and even diabetic with high sugar in a Spinal stimulator trial, had NO infection.
Ty for your idea friend, and I'll research if there's a brain type stimulator.

HikingMan · 51-55, M

@Baybreeze Her dad had diabetes too.

Jenny1234 · 56-60, M

Fibromyalgia?

https://www.moregooddays.com/post/neuropathy-vs-fibromyalgia

Miram · 31-35, F

Yes, it is certainly neuropathy. Likely of small, unmyelinated nerve fibers and the tests don't really detect that.

Fasciculations can indeed happen in sever or early signs of neuropathy. The diagnosis answers all of those symptoms.

Pain, fasciculations, dry skin, long history of unmanaged diabetes..it is neuropathy.

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Baybreeze · 41-45, F

@Miram Unfortunately no treatment has helped, and others say it didn't help them too.. Gabapentin doesn't help, Lyrica, nor did a foot massage machine. But she's checking soon on one other med that someone said truly helped their pain. Fingers crossed. She eats very low carb.

Miram · 31-35, F

@Baybreeze

There are five primarily classes of medications. They have only tried the first class which has less than 30% success rate. Way too soon and unrealistic to be giving up.

Since her diet is low carb, and I assume zero sugar?.. she should bring up checking her intracellular magnesium and potassium levels to her doctor..low carb diet can have that "side effect" which leads to even more twitches.

Maybe they should consider magnesium supplementation since it can stop leg twitches within days.

I think she should quit the forum. I have bunch of reasons as to why I think that but I don't want to be too imposing and take too much of your time. I am sorry you're both going through this.

I experience plenty of it too and not just because of my profession. Many members of my family have diabetes. My mother died because of it.

Baybreeze · 41-45, F

@Miram Her magnesium was ok so they didn't prescribe it. But perhaps I'll have her check if she could still take a low dose... If it does help twitches, it would be worth it.

She stays on the forums Bec they all experienced what she is, every neurologist they've seen, said "I don't know how to help .just try to deal with it. " And I've read these people comments, it's heartbreaking. So many neurologist do not know a lot on it. One doctor she saw herself was very discouraging..he said there's really no treatment for neuropathy besides getting your sugars down. 😟

And yet they don't come down because she can never take the insulin she really needs. Even a half unit can make it crash low FAST. Her PCP said it's too dangerous to try figuring out dosage at home. We are calling a number that might help overturn insurance that won't cover IV insulin in hospital (UNLESS you're in DKA.) Her doctor said they would help diabetics doing poorly before, without DKA, AND insurance stopped it over cost 😧

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