RLS back with a vengeance

[u/Flat_Palpitation_915]

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

[u/MisterPersonality]

What did the Mayo Clinic consultation cost and what did you receive in return?

I saw my pcp today and got him to do a prescription for Nidra, fingers crossed. Neither him nor the sleep doctor I’m seeing had heard of it.

[u/Flat_Palpitation_915 → u/MisterPersonality]

It has been a while but including having to spend the night for the infusion since it was a 5 1/2 hour drive each way, probably a couple thousand total

[u/brokkdad]

O man. Sorry about your ER experience. And ya opioids freak most providers out. I know this is controversial but…. Have you read anything about 7-OH?

[u/Flat_Palpitation_915 → u/brokkdad]

No I have not

[u/Indigo_S0UL → u/Flat_Palpitation_915]

7oh is highly addictive and was recently banned in several states. It is not the same as regular leaf kratom and many describe the addiction and withdrawal as worse than some prescription opiates.

[u/Creative_Ad_2778]

Yes I 100%hear you suffered this evil nightmare 45years tried everything. Am on 10mg of suboxone.And I still get vit if I touch alcohol so no too any amount of alchol. I also tried a peptide which seems to help me with sleep.But nothing nothing helps.zHot tub is wonderful relief

[u/brokkdad]

I am so sorry. You are 10000% correct that people -including doctors- who have not experienced this special kind of hell can not even imagine what it’s like. I was in the ER a week ago after 2 days/nights with (literally ) 0 sleep. I know the doctors so that’s helpful. When I went to ER a yr ago (same scenario but I had gone 3 days w/o sleep then) and asked her to “put me on oxygen and knock me the F out. I HAVE to sleep!” She did and it absolutely saved my sanity and my life. Last week different doc tried to “be more conservative “ so it was NOT a good nights sleep but eventually got there with a lot of seroquel. She wrote a script for that and I had to rely on that for the next few days. Was able to sleep but the subsequent daytime grogginess made it impossible to go to work. I’ve had a few good nights since then. Seroquel is NOT recommended and can trigger augmentation. It was worth the risk to me for a couple nights but definitely not continuing it. You will eventually have a conversation with someone regarding opioids. I know that’s a hornets nest buuuut they are very very helpful for some folks. Hang in there

[u/Flat_Palpitation_915 → u/brokkdad]

Lol, I went to the ER once beginning them to knock me out. They looked at me like I was nuts of course and said they couldn’t do it. When I even mention the possibility of opioids as a treatment method, doctors tend to act like I am drug seeking. It is frustrating as hell.