Restless Legs - Updated Algorithm vs. AASM Guidelines for Iron

Posted by J2414 @georgia18, Nov 2, 2023

I have had restless legs for over 15 years and was originally treated with a dopamine agonist. It worked great until I experienced augmentation. Since then, it has been the worst experience in my life. I have already tried a slew of medications, have impeccable lifestyle habits, and would like to avoid opioids and methadone.

After reading the Mayo Clinic's updated algorithm, it became clear that 1) nobody had ever adequately assessed my iron levels (only ran CBC, but no ferritin, iron, or TIBC) and 2) After finally getting the right panels done, I meet the criteria for an iron infusion based on the Mayo Clinic's guidelines: https://www.rls.org/file/general-free-publications/MayoClinicProceedings.pdf

However, at the sleep center where I was evaluated, I was told that my iron is fine. I sent in a copy of the algorithm and was told that it would be discussed with the medical director, but that they go by the AASM guidelines, which appear to be outdated with regard to iron infusion criteria when compared to the algorithm the Mayo Clinic put together. Upon my request, the medical provider referred me to hematology while he consults with the director of the sleep center, but the referral was sent in without any type of priority scheduling. That means that I am supposed to manage without iron until the next available appointment four months from now. In the meantime, I am now on day 2 without any sleep directly related to the RLS.

How do we get doctors to understand how serious this is? It seems like an iron infusion would be so much better than being placed on another medication that either leaves me severely cognitively impaired or nauseas and vomiting (I've tried everything possible). The Mayo Clinic is a reputable organization, yet it seems like the sleep doctors are not interested in learning about this. Has anyone else experienced this? I want to scream and cry because I am so completely exhausted and disgusted with the situation, but I realize that would not be productive and would be misinterpreted. Has anyone experienced something similar? What have you done to resolve the situation effectively? Have any of you gone to the emergency room for lack of sleep? If so, what was your experience?

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

ess77 - Elizabeth | @ess77 | Nov 6, 2023

In reply to @reillyg1013 "Please check out RLS foundation.org. The algorithm you cited has been on their website for quite..." + (show)

@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

slip275 | @slip275 | Nov 7, 2023

In reply to @ess77 "@reillyg1013, @chucklesg, @euscsey and all...I was on heavier medications for multiple reasons, diagnoses, and years. I'm..." + (show)

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

ess77 - Elizabeth | @ess77 | Nov 7, 2023

In reply to @slip275 "Hi Elizabeth, Is it typical to see a hematologist for RLS?" + (show)

@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

slip275 | @slip275 | Nov 7, 2023

In reply to @ess77 "@slip275 and all... Don't think so. My RLS journey began in 2019 Mayo sleep study and..." + (show)

Blessings to you, too, Elizabeth! I pray you continue to improve daily. Thank you for responding🌼

zinzu55 | @zinzu55 | Nov 26, 2023

In reply to @euscsey "I have started on the same journey as you. I've had RLS for a little over..." + (show)

@euscsey

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.

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I too have the RLS travel to my arms and torso during a severe attack. I use pramipexol 0.026 mg retard and mostly respond ok to it. Sometimes on long rides I take a lighter dosage one.
Just recently started at a clinic specializing in RLS and found out about ferritin. It was very low and now I'm on a high dosis of iron pills. 3 a day. Haven't tested my blood yet to see if it works. My doctor told me to do strenuous exercise in the afternoon
( get my heartbeat up and sweat) and activate my brain at night. Like learning a new language etc. Not easy to do! But its a new approach apparently. Anybody else heard of this?

doriskay79 | @doriskay79 | Apr 27 11:01pm

In reply to @ess77 "@georgia18, @ mamaear, and all...My heart is with each of you dealing withRLS and the lack..." + (show)

@ess77

@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.

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I too just started that Vitron with c
I found a doctor that said Ferritin should be 75 and mine was25 and that s interesting that your doc says 100.
So that’s good that both doctors are acknowledging that even though our levels were normal but low. That mine told me to try an iron medication

euscsey | @euscsey | May 1 12:14pm

My blood work always showed my iron was good. I have had RLS for at least 20 years. I have tried many combinations of drugs and have finally landed on one that seems to be working for now. As you know RLS is relentless and will figure out how to flare up after a while.
Right now, I use a 6mg NeuPro patch, 225 mg of Lyrica, and 1mg clonazepam. I take them at around 7pm and when I am ready for bed at 10-11pm my legs are not an issue. There are the few occasions where I might have a slight flare up. A couple over a one-month period I'll take any day. My next challenge is to find a way to drop the patch. It runs over $1000 for a three-month supply.

degarden_girl | @degarden_girl | May 2 7:48am

It seems that others on this site have a far worse experience with RLS than I have had. You have my sympathy as it is a terrible condition. No one has mentioned Vitamin D3 which is what I take for RLS and which works for me. I started at 4000 IUs at bedtime and when that worked, I reduced to 3000 IUs and then to 2000 IUs. It works for me and it is a pretty benign resolution. Others with a more severe RLS might find it helps reduce the severity of the issue. I hope you find peace. RLS is maddening.