Peripheral neuropathy and restless leg syndrome

Hello MrsGruffy (lovely cat)

I had terrible neuropathy in my feet some years ago. First thing in the morning putting my feet on the floor from bed was like standing on red hot shards of glass and the pain shot right up both legs.

I was put on Amitriptyline but as I suffer with an anxiety disorder I thought to kill two birds with one stone say to speak. I ended up on 75 mg of Amitriptyline but a side effect of that dosage was numbness and the neuropathy got worse. Too high a dose has the opposite effect.

I went down to 25mg every night and the neuropathy in my feet had all but gone though the neuropathy in my hands was still really bad at times and nothing seems to help that.

I was put on Duloxetine also about a year ago and since I have had no more issues with my feet. It is used for two complaints. Anxiety Disorders and Diabetes Neuropathy.

I also get neuropathy in my skin and just the feel of the blankets touching me when in bed can be agonizing. This is not a regular occurrence but I will experience this maybe once or twice a year at most. It's like having sharp needles under my skin pushing to get through. Not sure if you or anyone else out there has had this!

Not sure if any of this helps but I can relate to the pain.

Yes! I can relate.

I have RLS as a side effects of two drugs I absolutely must take for depression and insomnia. I have tried every drug available and this combination gives me the least RLS and the most lifesaving benefit for my "brain disorder" as I like to call it.

I take Clonidine to reduce RLS. There are about 4 drugs in that family that can help. It's a case of trying them out one by one.

RLS can be very hard to diagnose and treat. But I encourage you to keep looking for answers via your GP. He or she may refer you to a neurologist, and if I needed that I would insist on it.

Duloxetine is a bit like Lyrica - for some people it works great, for others it does nothing. I have considered both many times over the years but prefer not to gamble since I am worried about any drug that could make my morbid obesity worse. Each drug also costs about $200/month in NZ, and I am on a fixed income because I can no longer work, at age 49.

When my RLS was really bad during the day I could not sit in a chair and be comfortable. The only thing I could do was lie on my tummy on the floor with a pile of pillows under my torso. For some reason that made my legs feel calm and normal.

My feet are always cold, even in summer. I wear socks at all times. If the room is cold then they feel like blocks of ice. A wheatbag helps. But if you have any numbness you have to make sure you dont get burnt.

I also throw off the blankets most of the time while in bed, and even the top sheet at times. I must fall asleep then pull them over myself. There's no way I could share a bed with a partner again, LOL.

When I had a sleep study and was diagnosed with sleep apnoea (and had that resolved with CPAP use), I found they also test for RLS-type disorders such as involuntary leg jerks, which ruin your sleep quality.

As such, a sleep specialist is as good as a neurologist at treating such disorders. Worth a try if you have to wait to see a neurologist. It may be quicker to get a sleep study and you probably meet the criteria for one.

Hi @MrsGruffy So sorry to hear of your conditions, I too suffer from RLS, Restless leg syndrome, also known as Willis-Ekbom syndrome, for many years, I also get it in my arms too, though it is not a severe as my legs. I managed to get some help from my GP by taking Ropinirole, I take it later during the day and before bed, it was so bad a few years ago I couldn't even sit down without my legs jerking and the horrible sensation and it is also more common in women. It hasn't been 100%, but taking Ropinirole has been a lifeline for me, I couldn't do without it. Take care

https://www.nhs.uk/conditions/restless-legs-syndrome/

MrsGruffy said:

Thanks Robinredbreast! I will discuss that drug with my GP too. It feels really good to have people who are going through the same thing give such great advice on what is working for them. I can't thank you all enough xo

Click to expand...

Good luck

@MrsGruffy
I don't have RLS but do have neuropathy in my feet and to a much lesser extent in my fingers. Some months ago I started taking R-ALA supplements and it has made quite an improvement. The neuropathy is still there but improved to the extent that it doesn't interfere with my daily life. The fingers now are hardly noticeable. Feet are slightly numb but at least they don't hurt. I'm also about to evaluate a TENS device once I research all the brand offerings. Try the R-ALA. You've nothing to lose.

By the way, as well as the R-ALA it goes without saying that I strictly control my blood sugar with diet of no more than 20g of carbs each meal. Walking every morning also seems to help. Good luck with it.
Glenn

Crocodile said:

@MrsGruffy
I don't have RLS but do have neuropathy in my feet and to a much lesser extent in my fingers. Some months ago I started taking R-ALA supplements and it has made quite an improvement. The neuropathy is still there but improved to the extent that it doesn't interfere with my daily life. The fingers now are hardly noticeable. Feet are slightly numb but at least they don't hurt. I'm also about to evaluate a TENS device once I research all the brand offerings. Try the R-ALA. You've nothing to lose.

By the way, as well as the R-ALA it goes without saying that I strictly control my blood sugar with diet of no more than 20g of carbs each meal. Walking every morning also seems to help. Good luck with it.
Glenn

Click to expand...

What sort of cost is R-ALA?

I'll look it up when I can get to my bank statements. I don't actually remember but I think it was about 30 Aussie bucks for a jar of 120 capsules. I will check though.

Crocodile said:

I'll look it up when I can get to my bank statements. I don't actually remember but I think it was about 30 Aussie bucks for a jar of 120 capsules. I will check though.

Click to expand...

That's not too bad then (don't worry about looking it up, I can always google it). I have tried dozens of alternative remedies over the years and lost thousands. So I'm a bit more skeptical now. That's all.

@Jenny15
It is probably worth a shot. Bear in mind though that I know of at least one sufferer where it was no help. On the flip side there are others that it has helped. I'm somewhere in the middle where I got measurable help but no disappearance. Sounds like a lottery. This is why I am looking into a TENS device. They are not expensive and have both good and lousy results.

If you go down the R-ALA path, remember that R-ALA and ALA are not quite the same thing.
Have fun,
Glenn

I'd recommend getting your iron levels checked with Restless Leg Syndrome if your doctor hasn't already checked. And if you're having that test, being tested for B12 at the same time is also a good idea.

https://www.hopkinsmedicine.org/neu...less-legs-syndrome/what-is-rls/treatment.html

Crocodile said:

@Jenny15
It is probably worth a shot. Bear in mind though that I know of at least one sufferer where it was no help. On the flip side there are others that it has helped. I'm somewhere in the middle where I got measurable help but no disappearance. Sounds like a lottery. This is why I am looking into a TENS device. They are not expensive and have both good and lousy results.

If you go down the R-ALA path, remember that R-ALA and ALA are not quite the same thing.
Have fun,
Glenn

Click to expand...

Thanks. I have tried TENS and it was one of the best pain management tools I've ever used. I keep meaning to get around to ordering one. They're very cheap.

Indy51 said:

I'd recommend getting your iron levels checked with Restless Leg Syndrome if your doctor hasn't already checked. And if you're having that test, being tested for B12 at the same time is also a good idea.

https://www.hopkinsmedicine.org/neu...less-legs-syndrome/what-is-rls/treatment.html

Click to expand...

Good suggestions, in my experience. I have at times had a deficiency of both, which is now corrected. Vitamin D is also important for general health. My GP doesn't usually test for it because in his opinion most people are deficient (we have lowish sunshine hours in my part of the country). A lot of people struggle to spend enough regular time outside in the sun, and then there is the risk of skin cancer, which is higher in NZ than in the UK. I am prescribed a Vit D supplement because of a history of depression.