Restless Legs - Updated Algorithm vs. AASM Guidelines for Iron

Please check out RLS foundation.org. The algorithm you cited has been on their website for quite awhile. I didn’t thoroughly read the article you linked, but I perused it and can tell you that you would benefit greatly by that website. I have had RLS since childhood (genetics) and finally sought help in my 60’s. Fast forward to severe augmentation after 3 years on pramipexole. I joined the RLS foundation ( not necessary, but very well worth it in my opinion) and got so much information. I left my sleep doctor and educated my PC (who told me a serum ferritin level of 23 was good -HA)on everything I learned. That was the point where I took matters into my own hands.
I now supplement with magnesium glycinate ,500 mg, every night 45 minutes before bedtime and 65 mg of iron +vitamin C , usually in the morning. Am I cured- no, am I having better nights- more often than not. Even if you choose not to join, there is still tons of information on the foundation website.

@reillyg1013, @chucklesg, @euscsey and all...I was on heavier medications for multiple reasons, diagnoses, and years. I'm off it all now...off gabapentin, Lyrica, oxycodone, heavy ibuprofen, alprazolam, Cymbalta, Robaxin, and more...I continue to take Cymbalta for Fibromyalgia and it's excellent help for me. Robaxin is wonderful. Alprazolam I'm reducing but will continue. I have found the regimen I laid out in my earlier message is excellent for my needs, and helps me lose the RLS discomfort and symptoms.

I think the magnesium, Proferrin Clear, Requip, Robaxin, melatonin, CBD, and Kenalog cream as needed, on my legs, feet, and lower back and the occasional Bumex to control my edema caused by Primary Aldosteronism. Edema causes my RLS symptoms to flare so I have quite the balancing act to keep it all under some control. I'm happy to say it's helping and at the moment, I'm pleased with the improvement I'm experiencing. I occasionally use a prescription magnesium cream or Voltaran, but the Kenalog is far better for the more difficult times.

Yes, I suggest you check out the RLS Foundation as well. You will learn a lot and get some insights that may help guide you in the right direction. I have received good guidance from my Mayo hematologist and the Mayo sleep department. My hematologist is my go-to person for this entire scenario. Highly recommend you seek the knowledge this specialty and Mayo provide.

Blessings, Elizabeth

Hi Elizabeth,
Is it typical to see a hematologist for RLS?

@slip275 and all...
Don't think so. My RLS journey began in 2019 Mayo sleep study and discovery of low Ferritin bloodwork levels, known to contribute to RLS. I went to hematology after sleep nor PCP would or could order more iron IV infusions. Had 2 last year and raised levels, helped every day drastically improve until began going down again. PCP and sleep couldn't reorder infusions and I was anemic with lots of issues, so happily referred to hematology. He saved my life! Improved every day since!

I give him the deserved credit!!!
Blessings, Elizabeth

I have started on the same journey as you. I've had RLS for a little over 15 years. Sometimes I have attacks while sitting at my desk and my leg jerk so severely that I broke the lap drawer. I've even hurt my foot from jerking so hard. I get bouts while driving long distances and need to pull off the road. Have you had the sensation go to your arms? I agree that most people, doctors included, don't understand how debilitating severe RLS can be. Most people think it’s just a nuisance and that it goes away after a short period. I don’t know about you, but I ‘ve have bouts last for hours. They hit you at all times of the day and night. You get so frustrated and angry because you are so helpless and tired. Always tired. Day after day. Sleepless night after sleepless night. I got so tired that I once nodded off while eating a candy bar sitting in front of my computer trying to do some work. TWICE. Dropped the candy bar on the desk, then the ground. I get to where I dread going to bed because I know as soon as I do, I’ll have another bout of RL. Off my soapbox…
As you mentioned, I too have been experiencing augmentation. I have used the patch for years, thinking it was my magic treatment until augmentation. They have supplemented my patch with various medicines and dosages to help with the RLS but also to help me sleep at night, but they only help once my legs settle down to a point I can try to go to bed. Sometimes that is 1 or 2 in the morning, and I get up at 5 to go to work.
I haven't come across the study you mention. I, too, have had my iron checked. About a month ago was the last blood test which came back within guidelines. I am going to do my research and bring the algorithm to my doctor's attention. I will be interested to see how he reacts. He has always appeared to be willing to try whatever will help. I’ll post what happens. My doctor is trying to get me into a specialist to try and get another assessment.

@georgia18, @ mamaear, and all...My heart is with each of you dealing withRLS and the lack of knowledge, poor understanding, no follow-up, ignorance etc within the medical complex.
I've had severe, increasing through the years, RLS interfering with sleep and daily activities progressively. At 72ish, I had another sleep study, after taking most of my care to Mayo Florida. Thank you, God! That 1 action has given me hope, support in all areas of my health, and extended my life time AND my quality of each day!

I was diagnosed with RLS, severe obstructive apnea, etc. I was sent for specific Ferritin bloodwork, 1st time in my life.
It was 15! Quite low Ferritin, but some can be lower. Sleep told me the docs like to see a level at 100+ for RLS and other issues. I began taking OTC Vitron C, iron supplement with C daily. I had 2 iron infusions. I was shocked at the changes in my health, my life! It was a huge improvement.

I added magnesium supplement daily, was taking B Complex and B 12 injections, D3, Zinc.For the 1st time in years, decades, I saw improved sleep and overall health.

I use now a bi-pap with 2 L O2 nightly as O2 levels were dropping nightly...finally diagnosed during a hospital stay and c-pap didn't keep O2 levels up at night. Finally, docs saw what I had said for months, O2 was in 80s at night! Best thing ever...O2 and Bi-pap. And Ferritin.

I take 1 tablet of Requip early evening, giving it time to begin working prior to bedtime. I now take ProFerrin Clear, supplement my new hematologist at Mayo began I get from Amazon!! This change made a huge difference. Less constipation, increased Ferritin levels and closer to normal iron profile bloodwork, improved RLS drastically. The Vitron C stopped helping and created bowel
issues, ferritin levels dropped but no one would give me iron infusions I asked for, begged to get. Only down to 40s, not low enough! My PCP, non -Mayo, couldn't get infusions approved, but referred me to Mayo hematology! That wonderful man changed my life, once again, by putting me on the ProFerritin supplement and closely watching my iron profile and Ferritin levels, as they rose!

I'm a new woman now. Still must take Milk of Mag nightly for slow bowels, but so what! 🤷 I sleep well, have better brain clarity, less fatigue, some real energy, etc, etc, etc.i lift my legs more easily! Don't feel like heavy tree trunks! Walk easier, steadier, fewer balance and less leg pain.

Ok. Now, I've told this story. Take it and run to the doctor who will hear you!

Blessings, Elizabeth.