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told that it would be discussed with the medical director, but that they go by the AASM guidelines, which appear to be outdated with regard to iron infusion criteria when compared to the algorithm the Mayo Clinic put together.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?

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@reillyg1013

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.

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@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

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@ess77

@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

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

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@slip275

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

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@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

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@ess77

@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

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

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@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?

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