RLS Dead End?

This is so encouraging for you! Please update us.

@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

@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

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.

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.

@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

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.

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

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.

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