1. < Sleep Health

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?

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

akhw | @akhw | Mar 29, 2023
In reply to @cookierockwell "God bless you. I just did a search of my labwork, and found in December of..." + (show)
@cookierockwell

God bless you. I just did a search of my labwork, and found in December of last year my ferritin level was only 16! I'll be calling my PCP in the morning. Thank you so much for posting about this. I never would have known otherwise.

Jump to this post

This is so encouraging for you! Please update us.

REPLY
ess77 - Elizabeth | @ess77 | Mar 29, 2023
In reply to @cookierockwell "God bless you. I just did a search of my labwork, and found in December of..." + (show)
@cookierockwell

God bless you. I just did a search of my labwork, and found in December of last year my ferritin level was only 16! I'll be calling my PCP in the morning. Thank you so much for posting about this. I never would have known otherwise.

Jump to this post

@cookierockwell, @tim1028, @akhw and all...Wonderful news, Cookie. I'm thrilled you read my message and found your results. Wow, that's pretty low for ferritin. You must be having a lot of exhaustion and all that goes with low levels. I'm so sorry, but so glad you're heading to help! FYI: my PCP wasn't concerned at all about ferritin levels and actually told me my iron levels were fine based on the good hematocrit and hemoglobin levels. It seems we're helping more folks by guiding our PCPs to new areas of interest to resolve our issues. I love how this is working...Connect is a wonderful method of reaching others with similar or the same issues and getting so much support, but look at how we're affecting other areas as well. I love it.

Be better and be blessed. I'll be thinking of you and looking for good results based on the test results. elizabeth

REPLY
ess77 - Elizabeth | @ess77 | Mar 29, 2023
In reply to @akhw "I’m curious about the Mayo Clinic RLS Specialists. We’d need to travel from a rural area..." + (show)
@akhw

I’m curious about the Mayo Clinic RLS Specialists. We’d need to travel from a rural area in Eastern Washington (with only 1 flight/day that connects through Seattle), to the Bay Area in California. The flights would be difficult because of my husband’s RLS, as well as costly given airfare & hotel. How frequently would we need to see the specialist?

My husband has tried every drug approved for RLS, Magnesium, Vitamins B12 & D, Calm, leg massager/heaters, weighted blanket, walking (of course), sleep specialist/CPAP machine, marijuana, ferritin level monitoring & most recently a shiatsu massage mat.

He has found that oxycodone give temporary relief, but it makes him drowsy.

Does my husband need a referral from his primary physician, the local sleep center or his neurologist? Each one has a piece of the puzzle.

Jump to this post

@akhw, @cookierockwell, @tim1028, and all...Mayo doesn't have an RLS specialist. I actually was first tested by the Mayo sleep dept after an overnight sleep study showed serious RLS difficulties. She ordered the ferritin level testing and the 2 separate IV infusions I've had to date. My PCP will hopefully take over this process, but since I regularly visit the sleep dept for follow-up she may as well. I use a bi-pap with oxygen added at night. That has truly been a lifesaver for me. I was better with the bi-pap, but adding the oxygen after needing it during a hospital stay has been lovely. I sleep much better, and deeper, and definitely notice a difference with O2. What a help.

It sounds as if you and your husband are accomplishing a lot in addressing RLS. I love the weighted blanket. I find it helps me greatly. Living in Florida, I use it on my lower body and often just on my feet and shins, even in the summer months. It's quite helpful.

Off to bed. Blessings. elizabeth

REPLY
tim1028 | @tim1028 | Apr 1, 2023

Mayo is listed by the RLS Foundation as RLS Center of Excellence. Probably all the Sleep doctors are also expert in the diagnosis and treatment of RLS.

REPLY
tim1028 | @tim1028 | Apr 1, 2023

There is a forum that is part of the RLS Foundation: bb.rls.org. It may be of interest to some of you. I've been a member for 12 years and have found it very helpful.

REPLY
1 reply
ess77 - Elizabeth | @ess77 | Apr 1, 2023
In reply to @tim1028 "There is a forum that is part of the RLS Foundation: bb.rls.org. It may be of..." + (show)
@tim1028

There is a forum that is part of the RLS Foundation: bb.rls.org. It may be of interest to some of you. I've been a member for 12 years and have found it very helpful.

Jump to this post

@tim1028, @cookierockwell, and all...Thank you, Tim. I apparently misspoke and stated information solely based on personal experience. I was thrilled and surprised when the ferritin testing was first suggested and I began down this road. All my personal experience is with the sleep department.

Tim, thank you. You are a wealth of support and information. I've been on the RLS Foundation several times and appreciate your referral. It's quite active and helpful. It's great to have another sound resource. Are you participating in the upcoming webinar? It looks interesting but I'm not familiar with the speaker. Do you learn a lot from the seminars and such offered?

I'm anxious to learn more and more about this RLS that's made my life much more difficult for many years with no diagnosis or treatment forever. That's been true of many things with which I've dealt in my crazy health journey. I determined to stop that roller-coaster in 2019 when I came back to Mayo for help. They found answers to questions I didn't know to ask!

I'm off to do more research on the RLS Foundation site. It's full of information and support.
Blessings, elizabeth

REPLY
1 reply
tim1028 | @tim1028 | Apr 1, 2023
In reply to @ess77 "@tim1028, @cookierockwell, and all...Thank you, Tim. I apparently misspoke and stated information solely based on personal..." + (show)
@ess77

@tim1028, @cookierockwell, and all...Thank you, Tim. I apparently misspoke and stated information solely based on personal experience. I was thrilled and surprised when the ferritin testing was first suggested and I began down this road. All my personal experience is with the sleep department.

Tim, thank you. You are a wealth of support and information. I've been on the RLS Foundation several times and appreciate your referral. It's quite active and helpful. It's great to have another sound resource. Are you participating in the upcoming webinar? It looks interesting but I'm not familiar with the speaker. Do you learn a lot from the seminars and such offered?

I'm anxious to learn more and more about this RLS that's made my life much more difficult for many years with no diagnosis or treatment forever. That's been true of many things with which I've dealt in my crazy health journey. I determined to stop that roller-coaster in 2019 when I came back to Mayo for help. They found answers to questions I didn't know to ask!

I'm off to do more research on the RLS Foundation site. It's full of information and support.
Blessings, elizabeth

Jump to this post

If you want current, reliable , helpful information, The RLS Foundation is the best source. I personally have not participated in the webinars, but am a subscriber to the quarterly newsletter, Nightwalkers, which I recommend to anyone affected by RLS. Regrettably, many PCPs, neurologists and even sleep medicine practitioners are not up-to-date on Restless Leg Syndrome. As with any medical field, knowledge is expanding exponentially. Take care, Elizabeth.

REPLY
akhw | @akhw | Apr 1, 2023

Amen. I’ve found that the Foundation has the best information & have begun passing articles on to my husband’s medical care providers

REPLY
tim1028 | @tim1028 | Apr 4, 2023

Here is a link to the Mayo Clinic Proceedings listing the best protocols for managing RLS. The physicians listed are all well-known experts in RLS.
https://www.mayoclinicproceedings.org/article/S0025-6196%2820%2931489-0/fulltext#secsectitle0070

REPLY
paulawesterlund | @paulawesterlund | Apr 4, 2023

I found a recommendation by a Swedish Nurse on U-Tube. It is a Shakti mat (Amazon). My partner calls it a bed of nails. You lay on it shirtless before bed and it relaxes you, it may randomly stimulate some acupressure sites and it
certainly distracts you and takes your mind off of RLS. Try to lay on it for at least a half hour (some sleep on it all night). It only hurts for the last minute.
It has enabled me to sleep more often at night. (tho not always). I have also read on Tube about a Dr. who does nerve surgery in the legs and actually cures people. Just keep on looking for ideas. Don't give up. Paula W

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