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Restless Legs - Updated Algorithm vs. AASM Guidelines for Iron
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told that it would be discussed with the medical director, but that they go by the AASM guidelines, which appear to be outdated with regard to iron infusion criteria when compared to the algorithm the Mayo Clinic put together.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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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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5 ReactionsYes, I have had the sensations where it travels to other parts of the body. That can be part of the augmentation. You are correct when you say that many people do not understand how debilitating this is. I wish every provider in a sleep center had to experience it for three days in a row to better understand how bad it is.
If you copy and paste the link below of the pdf of the document (I attached it, too). Even with this documentation, you will probably still be denied for a number of reasons. At present, mine was denied, despite the fact that I absolutely meet the criteria. That's fabulous that you have a doctor who is willing to try whatever will help because I am meeting resistance right and left. I have requested the rationale, but expect that I will meet resistance.
I would love to hear how your story turns out, so please keep me updated.
https://www.rls.org/file/general-free-publications/MayoClinicProceedings.pdf
RLS Mayo Clinic Updated Algorithm (RLS-Mayo-Clinic-Updated-Algorithm.pdf)
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5 ReactionsMy husband has RLS. Dr. prescribed Pramipexole Dihydrochloride. It helps but still will have problems. He doesn't know who to go see for second opinion. Any suggestions?
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2 ReactionsI have essential tremors. I only take .5mg of Alprazolam. Doesn't help much. How can I tell if I have Parkinson's Disease?
I take a pramipexole tablet, 0.5mg (prescription), and
sometimes a couple of Tylenols at bedtime. No cure, but
it does help me get a good night's sleep.
You are correct, most people do NOT understand how
debilitating RLS can be. I have had this problem
for about 30 years.
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2 Reactions@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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2 Reactions@georgia18, and all..one more thing...I added Melatonin at bedtime, OTC, and I use a CBD supplement gummy 😴 to help with pain, anxiety, sleep. These are very helpful!
Ess
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2 ReactionsI am glad you found some relief. I have been on so many different medications over the years I have a hard time remembering what's what if you know what I mean. The last couple of comments had me thinking about what I have been prescribed over the years. The following is what I can remember. (The constant lack of sleep messes with your memory.) No surprise, it looks like the top ten meds for RLS.
Neupro
pregabalin
Horizant
gabapentin
ropinirole (twice)
clonazepam (for about 8 years along with other meds)
pramipexole
There were others, especially in the yearly years, but these were the ones I remember. Several stick out for me. The Horizant went from 600mg/day to, 3600mg/day. The clonazepam was 4 pills (don't remember the mg, but I think it was .5mg) in conjunction with the other two or three meds I took. I got to where I was taking so many meds at night, I had to take a pill in the morning, so I could function. Just part of the misery associated with trying to figure out a regiment that works.
After reading your post, I am going to revisit my OTC supplements to see how your regiment could boost mine.
Thanks for the comment.
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2 ReactionsMy primary doc says I am in fine health. My hematologist on the other hand, scares the hell out of me with more blood tests, genetic tests, and more. I do not know who to believe. I go to Mayo in Phx when the local docs don't seem to know what they are doing...as long as Medicare pays!
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1 ReactionPlease 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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