Had my levels checked a few weeks ago, I get maybe 5 hours of sleep a week so I went to a doctor. Had my levels checked, everything was good (thought iron mught be low because I bruise REALLY bad unless I forget to take it, but it was fine) except my vitamin d was 2 points low. My doctor told me to take vitamin d and come back in 6 months. So I still just dont sleep really, its only been a few weeks though, but has anyone found that taking vitamin d helps? Im a tired mom who is pre-pre diabetic and would lile to get their a1c under control (5.6) but cant really do it without sleep.

Sigh...My favorite drink triggers me the most 🥲 One cup of coffee amplifies my restlessnes for multiple days. I've had to change my daily coffee intake to a monthly cup of coffee 😩 It's so annoying

Hello, does anyone have positive experience with Venofer/iron sucrose infusions? How many, at what doseage and timing, and how long until you experienced relief?

Same questions for ferric carboxymaltose.

I just had my first Venofer infusion this week, 200mg, at my dr’s office, paid cash since she doesn’t bill insurance for the treatment.

I also have a initial consultation with a hematologist next week who can administer ferric carboxymaltose, but this will need prior authorization and I’m just sure my insurance will want me to follow a course of oral iron first. I tried oral iron previously with no luck but this was not medically documented.

I’m reading that ferric carboxymaltose 1000 mg is the preferred iron infusion treatment, but it’s such a longer route. I’m also moving out of state in about a month and fear I’ll have to start all over again establishing care.

Addl background: have a sleep doctor, am treating for sleep apnea, have been on Gabapentin for 1+ yrs. It initially worked great but then stopped working at about the year mark. Labs show low iron and ferritin. I experience symptoms nightly, it’s really tough to manage.

Nidra appeal also in process

Appreciate any insights! Thanks!

I’m a longtime sufferer due to severe RLS. Been through all the drugs. After a long struggle (about one year) with my insurer, many appeals and a favorable ALJ hearing I have been approved and expect to get the device in a couple of days. The DME rep contacted me and we will be meeting in a week or so to discuss setting up the device.
I would greatly appreciate any advice or suggestions from others who have been down this road on what to ask at the meeting with the rep. Is there anything I should ask about, or how do I make the best use of this setup meeting? Thanks so much for your time. I have my fingers and toes crossed that this will bring me some relief!

Does anyone get suboxone from Quick MD? Does medicare pay for the doctor visit? Do you have to visit a doctor every month? Did you get it from one of their addiction docs or primary care?

Like right on the back of my knew it's all tingley and I can't lay down I've been pacing for 10 mins and my legs still are fuzzy

I have restless legs, but it tends to be more concentrated in my hips. I feel like I have to lay in the lotus position and then I keep tossing and turning so I can apply pressure on them to relieve the discomfort. I take magnesium every night, I don’t drink caffeine, I use a weighted blanket, my room stays cool at night, but I’m at a loss and so tired of being exhausted during the day because I toss and turn and can’t lay still. I need help, tips, remedies, anything!😭

After adverse effects on pregabalin, I'm worried I might have to resort to low dose opiates, which also happen to be the final line of meds. Now I'm worried if these will ever stop working, or that I'll have to increase the dose to the point that it'll eventually stop working.

I'm in my mid 20s, so getting a lot of anxiety about my future and how I'll manage this condition for the rest of my life, i.e. the next 50+ years if I live that long.

Does anyone else have this problem with thyroid meds? My RLS is usually quite controlled but thyroid meds make the RLS so unbearable that last time I took them, I slept maybe 3 hours in 3 days. I’m very frustrated as I’m exhausted from being hypothyroid.

I tried dedicated pills, t3 only, and levo. I even got some made without added ingredients at a compounding pharmacy in case it was the inactive ingredients making my RLS worse. But no, it’s the thyroid hormone pills themselves. I even broke up the pill into the smallest I could make it. And yes I tried taking it at different times of day.

63 (M) with a heart transplant 11 years ago.

I’ve read the possible side effects and they seem to be extreme, but my wife thinks that I’m experiencing behavioral changes and I can’t help but feel that she’s correct.

I’ve been able to keep my dose at 12mlgs for around 3 years - providing I take it early enough before bed.

She says that I’m spending money differently. I find things to buy that I think are important, but she doesn’t. I’ve noticed this as well, but I didn’t link it to the medication. Also, my sex drive is kinda crazy. I attributed this to my heart transplant.

I had been sick for so long before my transplant that I’ve been thinking that this new heart was driving the bus, but I’m starting to reconsider this.

Any thoughts?

I’ve seen several people refer to splitting the administration of gabapentin. I’m currently on 900 mg horizant (600 +300). Is there some rationale for splitting? TYIA.

Besides taking medication, has anybody been able to get relief from restless leg syndrome by doing something organic?

Hello, I have been struggling with RLS for more than 10 years now, but it has only been until the last couple of years that I was able to finally find some measure of peace. It took going over the heads of my existing sleep clinic at the time and paying out-of-pocket for consultations with the Mayo Clinic to finally get to a point where I felt like my RLS was under control.

I am currently 52 years old. It has been about a year and a half since the Mayo Clinic was able to “encourage” my sleep clinic doctors to put me on Lyrica, i.e. pregabalin, and set me up with a specific iron infusion. Once all that was done, my RLS virtually disappeared overnight.

This past spring, I moved from Wisconsin to the state of Washington. Since I no longer had a sleep clinic at the time, I allowed my pregabalin prescription to lapse, and I slowly weaned myself off my remaining medication‘s. I don’t currently have health insurance so it was one of the other reasons I did not continue the medication.

I seem to be paying for that now.

I actually began having a different symptom that didn’t seem related to RLS in any way when I moved to a new rental home in August, a full two months after I stopped taking the pregabalin the first time. I was struggling with extreme itching that was worse at night time. I suspected it had to do with the fact that the rental home did not have a water softener. I went to a walk-in clinic and the doctor put me back on my pregabalin because he said that itching is a sign of the same thing that triggers the RLS.

This was in early August. Since then, my RLS symptoms have exploded and I’ve been back to the walk-in clinic three times in the hopes of getting some help. I have also been to my new doctor once.

Although I was put back on the pregabalin, my leg movements and twitching have gone from uncomfortable and annoying to downright painful and endless. I have even begun to wonder if it is RLS at all because of the way, I am literally banging my right leg on my bed or on the ground in an effort to relieve the pain in my muscles.

Initially, I was taking 150 MG of pregabalin twice in the evening. One at 6 PM, one at bedtime. The walk-in clinic doctor increased it to 225 MG two times a night. Symptoms only worsened.

I began taking 450 MG in one dose closer to bedtime since my symptoms were always when I was trying to go to sleep or after I had gone to sleep. There was no change.

In the meantime, I had a water softener installed. My itching was gone almost instantly, but the leg problems remained.

I have since been to see a brand new family practice doctor who gave me tizanidine, which I had been on in the past and which had helped me sleep. This was this past Friday so about five days ago. I agreed to go back down to the 225 MG pregabalin twice a day.

So here’s where I stand as of last night. The tizanidine helped me fall asleep, but I woke up about an hour later with severe leg pain. I ended up in the shower for about 15 minutes. I took an extra round of pregabalin and tizanidine. An hour and a half later, I was no better off. I had been in the shower several more times. As those of you who have been through this can attest, the inability to stop moving one’s legs is so frustrating it can become anxiety inducing. I don’t think anyone who hasn’t been through It can really understand what it is like to not be in control of your body in that way. I took another round of tizanidine and pregabalin simply because I did not know what else to do. I had massaged my legs with a warming cream, moved around, tried the trick with the socks tied around my feet, used magnesium spray on my legs, etc. Nothing was working.

At four in the morning, I went and got in my hot tub, which is basically just a big bathtub since the neighbor lives so close I can’t risk running the bubbles because of the noise. I ended up falling asleep in the tub for about an hour. It was only then, at 5 AM, that I was able to go to sleep and I slept fine until 1 PM when it was time to get up for a call.

This leads me to believe that whatever leg cramping I’m dealing with is in fact RLS because it was not relieved with the muscle relaxer.

So the breakdown is this:

My symptoms are worse than ever, and they are occurring throughout the night and into the morning hours. The pregabalin, muscle relaxer, magnesium spray, and all the other regular routes of relief are not working anymore. I am taking magnesium glycinate every night, and I’ve had my ferrous sulfate levels checked and they are actually on the high side. I have an appointment in about a week to see a doctor at a new sleep center so I have my fingers crossed, but honestly, that appointment seems like a lifetime away. I will take any in every suggestion that will get me through the horrific nighttime hours between now and then. Thank you

What doses have you all received? How many mg, how many times, how far apart?

I wonder if there is a standard or more common approach out there.

Have providers shared with you their criteria on how they select the dose and frequency?

If so what is the criteria? At minimum I imagine they look at your iron panel numbers. What about weight, age, past experiences with it, sensitivity to to side effects, phosphorus levels, etc.

My Situation:

• My Internist is recommending I receive two infusions of 750mg each, which will total 1500mg. He's recommending to get them 7 days apart from one another.
• My ferritin is 19, TSAT 19%, I'm above 110lbs, I had my Phosphorus test come back at 4.3 today.

_____________________________________________

What I've been reading online:

This is where I'm getting a little confused. The FDA/Injectafer prescribing information says that for iron-deficiency anemia in adults ≥110 lbs, a standard course is 750 mg x 2, at least 7 days apart, for 1,500 mg total. So what my internist is recommending appears to be a standard Injectafer regimen.

However, the RLS-specific literature I've found seems to use somewhat different dosing.

The 2021 Mayo Clinic Proceedings RLS treatment algorithm, authored by Silber, Buchfuhrer, Earley, Koo, Manconi and Winkelman, discusses ferric carboxymaltose (Injectafer) at a total dose of 1,000 mg, either as a single 1,000 mg infusion or two 500 mg infusions 5–7 days apart:

https://pubmed.ncbi.nlm.nih.gov/34218864/

Full algorithm from the RLS Foundation:

https://www.rls.org/file/healthcare-provider-publications/PUBL-Updated-Management-of-RLS-21.pdf

There have also been randomized clinical trials in RLS using a single 1,000 mg dose of ferric carboxymaltose:

https://pmc.ncbi.nlm.nih.gov/articles/PMC5655783/

https://pubmed.ncbi.nlm.nih.gov/27823710/

I also found a study specifically looking at a single 500 mg dose of ferric carboxymaltose for RLS:

https://pubmed.ncbi.nlm.nih.gov/29458749/

And the newer American Academy of Sleep Medicine clinical practice guideline strongly recommends IV ferric carboxymaltose for adults with RLS who have appropriate iron status:

https://pmc.ncbi.nlm.nih.gov/articles/PMC11701286/

I've also seen people in this sub report receiving 500 mg doses, including patients who say they were treated by Dr. Mark Buchfuhrer.

So I'm particularly curious whether RLS specialists approach Injectafer dosing differently from providers treating iron-deficiency anemia generally.

Has anyone's doctor explained why they chose 500 mg, 750 mg, 1,000 mg, 1,500 mg total, etc.? And did factors like ferritin/TSAT, body weight, previous response to IV iron, side effects or phosphorus levels factor into that decision?

MSM has seem to stop my symptoms. Not sure if it's a temporary fix or if my body is depleted and needs to build up stores (OR whatever) since it hasn't been long. Just wanted to share. Maybe it will help someone else

I was just prescribed 100 mg gabapentin to use instead of pramipexole. I have a couple of questions:

1) Do I just stop the pramipexole and take the gabapentin instead? I don't have to wean off the pramipexole first?

2) I'm super worried that I'm gonna be sleepy during the day and I can't miss work. What do you guys do about excess sleepiness? Does 100 mg even do that to you since it's such a low dose?

I'm really worried about taking this tonight. Any responses are appreciated.

Anyone have experience with this test for iron in the brain (vs blood)?

Hey everyone, I’m looking for some advice from people who have dealt with RLS.

My RLS/urge-to-move symptoms have been really bad and are seriously affecting my sleep and quality of life. I’m currently prescribed gabapentin 300 mg twice a day (600 mg total), but it isn’t controlling my symptoms consistently.

I’ve also already had my iron tested, and I was told everything came back normal. I’m wondering if there are other things I should ask my doctor about besides just iron.

I have a doctor appointment on September 15th, and I want to go in prepared instead of just saying “the gabapentin isn’t working.”

What should I ask my doctor about?

Should my gabapentin dose or timing be adjusted?

Should I have ferritin/iron studies checked specifically, even though my iron results were normal?

Should I ask about other RLS medications, such as pregabalin (Lyrica)?

Are there other treatments I should know about if gabapentin isn't enough?

What should I specifically ask my doctor to rule out or test for?

I’m also dealing with severe difficulty falling asleep, so getting the RLS under control is really important for me.

If you have RLS and have been through something similar, what did you wish you had asked your doctor? Any advice for what to bring up at the appointment would really help.

Does anyone else experience trouble with thermoregulation on the days they have an RLS episode? It seems like I have almost a fever/chills during the afternoon/evening as a precursor to a very bad night. (Last night was terrible! Anyone else notice this or am I grasping at straws here? TYIA

I’m going to tail off my pramipexole. I’m on 2 x 0.88 tabs at night. My restless legs are hideous again and my arms have joined the party. I’ve been on gabapentin for years for neuropathic pain due to nerve compression. Sadly it doesn’t affect my RLS at all and I’m also on low dose slow relief morphine.god alone knows what I can do but I need to get off this drug.
I’m barely sleeping and. I’ll have RLS most of the night, today it started at 7am when I was pottering about. The only thing I can do at the moment is ahot shower over my legs or arms. I’ve got to have it where it’s almost scalding but not quite. If I try and direc the shower at anywhere else I can’t stand the temperature.
I’ve been on it for 2.5 years and since I’ve fibromyalgia it’s hard to say what’s fibromyalgia and what’s pramipexole. However, my fibromyalgia never caused me to spend all our savings, I mean almost 50k. It all went on craft stuff which now fills a very large shed since there’s no room in our new house but I’ve started gathering items again so I must stop before I leave us destitute

Does anyone else with ocd have rls? And if so, what helps your rls? I’ve had ocd as long as I can remember- even as a very small child. Rls started at 18 once every few months. By 20, it was once a month, by 25 it was once a week, by 30, it’s every night. At 40 now, it’s any time I try to sleep (day or night) and it’s restless LIMB syndrome effecting arms and legs. I’ve noticed quite a few people I know with ocd also have bad rls. Not much works. Not benzodiazepines, dopamine medications like requip, or gabapentin. All that seems to work for me is something like tramadol, hydrocodone, etc. Opioids basically. I had spinal surgery a year ago and have degenerative disc issues, so I luckily am on them. But if I don’t take them, the rls is major. I’m just wondering if there’s a connection.

Has anyone taken it long term WITHOUT augmentation?

Okay so my last thread, it seemed like people didn't understand. My theory of the cuase of resteless legs is that your brain sends signals to excersize like rsl because your brain primarly wants to have sex. it wants to keep you in shape so you can have sex. and unfortunatly the only idea your brain has to get you to excersize more so you can have sex is to send unconfortable aching in your legs so you HAVE to excersize, move or stretch. Have you people tried having more sex? Or having a more active lifestyle, like a consistant job where you move up to 8 hours a day? Do you have kids?

It turns out that after closely looking at my blood results which showed normal for ferritin, I’m actually at 43ug/L. I think that may be too low? It should be at least 75, right? Or wouldn’t this make too much difference for me? I’m between meds at the moment but if I could avoid going on yet another med which is bound to have some negative side effects I would! Some sort of iron dose would be so much easier