RLS Dead End?

Posted by akhw @akhw, Mar 18, 2023

My husband’s RLS has ‘progressed’ to both legs, day and night. He has tried all of the approved drugs for RLS at increasing doses prescribed by a neurologist, as well as cannabis. He has been taking oxycodone for about a year. (The RLS Foundation has stated that opioids are the preferred treatment after Gabapentin & pregabalin). Heated leg massagers, walking, sports massager, Irish Springs at the bottom of the bed….his frustration & hopelessness level has peaked.

Any coping recommendations when all has failed?

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rjjb | @rjjb | Mar 25, 2023

In reply to @akhw "We’ll check into the Flexeril. We’ve tried all of the approved medications…& ended up with augmentation..." + (show)

My doctor prescribed pramipexole 0.5mg. It's no cure, but
does ease the pain of RLS. especially when trying to sleep.

akhw | @akhw | Mar 25, 2023

In reply to @rjjb "My doctor prescribed pramipexole 0.5mg. It's no cure, but does ease the pain of RLS. especially..." + (show)

We found that with pramipexole & ropinerol, he experienced augmentation. Many people report success with these Gabapentin or pregabalin, but these didn’t work either. He’s had some success with oxycodone.

Like with other drugs, every body is different; we’ll all keep trying different thing until we find something that works for us.

All suggestions & stories are helpful.

rjjb | @rjjb | Mar 25, 2023

Get a prescription for Pramipexole 0.5mg for RLS.
It's no cure, but does ease the pain, especially when sleeping.

paulawesterlund | @paulawesterlund | Mar 25, 2023

In reply to @akhw "Seems like we’ve tried everything else…pickle juice today." + (show)

I learned about using a shakti mat on You Tube from a Swedish nurse. You can get them at amazon. My partner calls it a bed of nails. I lay on it without a shirt at nite before bed. It only hurts for less than a minute and then it relaxes you. She thought it might take your mind off the RLS. I think it actually enables relaxation by forcing the nerves to "shape up".

tim1028 | @tim1028 | Mar 25, 2023

You'll notice that the RLS Foundation recommends getting Ferritin levels to 100 thru iron supplementation or IV iron infusion. Make sure you are consulting with a RLS center if excellence. Mayo Clinic us one.

cookierockwell | @cookierockwell | Mar 26, 2023

I have pretty severe RLS, and I have found that I react to various prescription drugs and OTC. For example, benadryl is a killer for me, as are statins. Is your husband on any medications or supplements? I google everything before I take it, e.g., "benadryl restless leg syndrome" but without the quotes. Another thing I react strongly to is dehydration, so maybe pick up some Drip Drop powder or other dehydration powder and have him drink a glass or two each day to see if it helps. Best wishes for a resolution soon.

akhw | @akhw | Mar 26, 2023

In reply to @cookierockwell "I have pretty severe RLS, and I have found that I react to various prescription drugs..." + (show)

Thanks. You should get the most issue of Nightwalkers, the Restless Leg Foundation publication. It has a 1/2 page listing of various types/classes of drugs that can trigger RLS. Benedryl, statins &certain anti-depressants are listed as potential triggers.

My husband drinks over 64 oz of water with electrolytes added & ferretin levels after infusion are over 100.

We’re still hoping that we’ve overlooked something or that something new has been discovered.

Thank you all for your helpful suggestions. Keep them coming.

akhw | @akhw | Mar 26, 2023

In reply to @rjjb "Get a prescription for Pramipexole 0.5mg for RLS. It's no cure, but does ease the pain,..." + (show)

This has been suggested by several acquaintances as being helpful. It was prescribed by his neurologist at increasing doses, but never seemed to help him.

I’m glad that you’re getting some relief.

cookierockwell | @cookierockwell | Mar 26, 2023

In reply to @akhw "Thanks. You should get the most issue of Nightwalkers, the Restless Leg Foundation publication. It has..." + (show)

Just signed up for the foundation and downloaded that issue of Nightwalkers. Very good info. Thanks for the tip.

akhw | @akhw | Mar 27, 2023

In reply to @cookierockwell "Just signed up for the foundation and downloaded that issue of Nightwalkers. Very good info. Thanks..." + (show)

I think that you’ll find the info provided by the Foundation to be very helpful.

I’ve shared the ferritin level & possible trigger info with my primary physician. I think that we often expect our doctors to have answers to everything & that’s unrealistic. We need to be advocates for our own health, especially for something like RLS.

Thanks to all of you for suggestions.