Hello everyone, I am posting because I am totally confused. My sleep doctor who works with my neurologist said that I

[Josana13]

Probably didn't have restless legs because everything she tried hasn't worked. I Took Pramipexole for man years until I went into Ugmentation and had to get off. My symptoms are as soom as I lie down, my feet have to keep moving. I have to get up and walk. Keep pressure on them. I get on stationary bike, put them on ice, get in hot tub until they calm down. I lie down and a couple of hours later they start again. I get an average of 2 to 3 hours of sleep. Exhausted and frustrated .

[Madlegs1]

If you were on Pramipexol, and not taking other triggers, such as antihistamines, antidepressants or statins or just about anything !?,

Then you may have something else.

Pramipexol is a very good control of RLS and may be used as a diagnostic tool.

[SueJohnson]

Your symptoms sure sound like RLS. Did the pramipexole help at all at any time when you took it? If you went into augmentation, it sounds like it did. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. If you meet this criteria, you have RLS.

[erinjee]

When you say that you had to get off of the pramipexole, how long has that been? Are you free of it now completely? It took me years to get off of the pramipexole properly and I could not and have not been free of the augmentation effect/withdrawal without buprenorphine.

[SueJohnson in reply to erinjee]

That is great !!! I know that must have been hard for you. Are you taking any medicines now for your RLS?

[erinjee in reply to SueJohnson]

Hi Sue! Yes, I take buprenorphine on the regular now. I have klonipin for break through which I needed at first but don’t use at all now. Buprenorphine has been full miracle for me it does leave me with some tired during the day but I think it’s a far cry from what was happening with the prami over 20 plus years. I’m very thankful for it.

[SueJohnson in reply to erinjee]

That's great ! I'm so pleased for you.

[fishinphil1946]

Dear Josana13,

I have been diagnosed as having family inherited peripheral neuropathy. My symptoms are the same as yours. I also have sleep apnea. I could not find a neurologist here in south Texas. After reading the posts on this site and the Mayo clinic report, I decided to get off the 2mg/day dose of pramipexol. It took 32 weeks at a reduction of 0.125mg/2 weeks for me to get off pramipexol. I still take 1200mg gabapentin/day. When I am very tired, I seem to get an additional mild case of RLS. If your feet seem to lose feeling, you may have PN or a form of CMT (Charcot-Marie-Tooth) syndrome. My CMT symptoms began when I thought my socks kept bunching up when I wore waders while fly fishing. I had no idea what was happening and ignored it. I was wading in a stream with lots of baseball sized rocks which were hard to walk on and fatigued my feet and ankles. Today my feet and ankles have a variety of discomforts all day long. Keeping busy and feet on the ground take my mind off the "pain." I found a neurologist and have an appointment August 29. I also gained 50 pounds and at 76 years old it has been difficult to lose the weight. I doubt that there are any medications to help with PN. A proper diet and exercise are worth a try. Higher priced and properly fitted, knee length compression socks help me during the day. I remove them at night. The PN diagnosis requires some tuning fork testing. Something else to consider!

[SueJohnson in reply to fishinphil1946]

It sounds like the gabapentin is not quite always controlling your RLS. I assume you are aware that you need to take it in 2 doses of 600 mg each since it is not well absorbed above 600 mg. If not doing that will probably do the trick. Take 600 mg 1 to 2 hours before bed and the other 4 hours before bed. If you are already doing this, ask your doctor for a prescription for 100 mg capsules and take one 6 hours before bed. Also, have you had your ferritin checked?

[Valeriej21]

Find a neurologist that specializes in movement disorders. There are other classes of meds than the DA’s

[RLS4Life]

I have had RLS for as long as I can remember. The first medication to help me was Pramipexol. I have been taking it for 30 years. SueJohnson's five points for diagnosing RLS are correct for most people, however, RLS can occur at any time of day and in any part of the body.

While typically evenings and bedtime are when symptoms occur, it is not the time of day that is significant, it is the need for sleep. In other words, if your work hours were 10 pm to 6 am and you go to bed at 11 am, then you would find that your RLS occurs in the morning. My RLS can occur at any time of day; in addition to evenings and bedtime. It can wake me up or start after I wake up. My first recollection of RLS is when I was a preschooler. On family road trips/vacations my father would need to stop the car so that I could get out and walk around.

For most people, RLS occurs in their legs. For some, it also occurs in their arms. And, for others, it can occur in any part of their body; I have had it in every part of my body except my chest, palms, soles, and, to put it politely, bathing suit area. The worst is when it occurs in my skull.

I have been on more medications than I can remember, including gabapentin, sleeping pills, and benzodiazepines. As I said above, Pramipexole was the first medication to help me. Benzodiazepines make it worse. Escitalopram, an anti-anxiety medication has stopped it from occurring in my skull. A few years ago I had a motorcycle accident, and when I was released from the hospital they gave me hydromorphone for pain control. A couple of months later I read that one of the earliest treatments for RLS was opioids. Since I hadn't used all of the hydromorphone, I started taking 4 to 6 mg of hydromorphone at bedtime along with 2 mg of Pramipexole. This had a tremendous impact on the RLS. I am now down to 2 mg of hydromorphone and 1 mg of Pramipexole at bedtime. I also take 1/2 to 1 mg of Pramipexole in the afternoon. Occasionally, I will take another 2 mg of hydromorphone and 1/2 to 1 mg of Pramipexole during the night, or 1/2 to 1 mg of Pramipexole after waking up in the morning. Now, for the most part, RLS only occurs in my legs, arms, and lower back.

Although not encouraged by my doctor, I find that a small amount of Cannabis will settle my RLS until the medications take effect. I have ADHD and take Methylphenidate (Ritalin). It can also help my RLS. My RLS tends to act up in the morning if I forget to take my Methylphenidate.

Something that many doctors do not know, iron/ferritin is a big factor for RLS. Low levels of iron/ferritin (Borderline Iron Deficiency or Iron Deficiency) can play a big factor in RLS. Get your iron/ferritin checked.

[Bugsybarb22]

My neurologist in past never found a med to hel me since 2014, Sent me to pain specialist and he started oxycodone which works. I had a temporary spinalcord stimulator trial for 7 days without a single episode and waiting now for permanent one. I believe you have RLS if your symptoms verify it mbut just not the right solution. I understand how frustrating it is not to have an answer. Have you seen pain specialist? Best of luck.

[Josana13 in reply to Bugsybarb22]

My pain specialist is working towards a spinal cord stimulator. I pray something works because I don't know how long I can go without sleep. Thank you all for your responses. God bless each and every one of you. I think RLS is the number one worst problem due to the sleep issue, but yet not taken seriously. At least with other problems people can sleep. RLS is a nightmare. May we find an answer soon.

[Poe7]

I have had RLS for well over 13 years. Before having it every night then every day and every night I had it every once in a while and each time I was pregnant. My symptoms have never been controlled by anything except for an opiate. I took Tramadol for a very long time until I learned about augmentation which the tramadol caused. I now take methadone and my symptoms are 99% controlled.

I have tried Requip, Mirapex, Gabapentin, Horizant, Lyrica, Trazadone, Topamax and several others that I can't remember right now. None of them worked one bit for me. But I absolutely have RLS. My Dr says I have severe Refractory RLS. From what I understand Refactory means that when you have a condition doesn't respond to the normal treatment. (If someone is reading this and I'm not explaining it the right way please correct me).

So I said all of that to say that if you meet all the criteria for having RLS you have RLS. Reguardless if you're symptoms aren't controlled by every RLS med.

It took a lot of time to figure out what mine responds to.

I hope you are able to find relief soon.

[SueJohnson in reply to Poe7]

On refractory RLS, you are correct it doesn't respond to the normal treatment but not that it doesn't have the normal symptoms.

[Poe7 in reply to SueJohnson]

Oh thank you for the clarification. I wasn't 100% sure about the exact meaning. I fixed it ☺️