Restless Legs Syndrome (RLS) Discussion Board

The pain medicine doc even said "They call it restless LEGS, so you CAN'T have it in your arm!"

I've had that said to me too, and also "it's only at night, you can't have it in the daytime". Same doctor said both things to me, I corrected her and she seemed to accept it. That's part of the reason I HATE the name restless legs syndrome. People think they know what it is just from the name!

and what most of us here want? A good night's rest! Why is that too much to ask?

Indeed!

Same problem with potentially seeing Dr. Buchfuhrer...I would have to pay out of pocket, which isn't feasible. My best chance might be seeing a neurologist, if I can last that long.

If I could go back in time, I would sell everything I owned to see someone who knew what they were doing. I don't know how the system in the US works, can you get a referral to a specialist at an RLS Quality Care Center, if there;s one near you, instead of to a random neurologist? https://www.rls.org/treatment/quality-care-centers

The iron supplements might have a significant effect. Give it 3 or 4 weeks. Mine make a big difference.

"Funny" thing is, initially I did call it Willis Ekbom syndrome, but was met with a blank stare, so I said restless legs syndrome and he said "why didn't you call it that to begin with?" But then he said the "then you can't have it in your arm" thing, to which I wanted to say "you don't know about either, so why even bother?" But...I didn't. I don't get it. This is fairly common, especially in us 60+.
Actually, I saw my psychopharmacologist yesterday, and he said what about ropinirole? I said I'd heard too much about augmentation on it (although it seems to help some people). Of course I had to explain what that was. ARGH!
Holland, you're right about fruits and flakes, and it looks like you're in CA too, so you should know! Actually for me, it's even worse. I grew up in Berkeley In The Sixties lol. Well, I would try the kratom or mm, but I don't want a "high." I'm spacey enough as it is. However, when my pain doc yanks the opioid next week, I'll be forced to reconsider.
Thank you for the help, all! Everyone is so kind and compassionate, and knowledgeable. Wish my doctors were...

chuas2 wrote:... Well, I would try the kratom or mm, but I don't want a "high." ..

Users on this board, me included, don't get high with kratom. Recreational users of kratom typically take much bigger doses, but apparently the "high" even then is quite mild.

Unfortunately, medical marijuana, to be effective for RLS insomnia (it doesn't seem to help with urge to move), must have significant THC in it. I found, as have others, that to effective the dose must contain enough THC to make me at least a little "high." I would typically go to bed as soon as the stoned feeling kicked in, I didn't have any particular desire to feel the high, just go to sleep. Anyway, I would rather take 15min of feeling high and get to sleep than toss and turn for hours and feel bad the next day.

Everyone is so kind and compassionate, and knowledgeable. Wish my doctors were...

A lot of us find ourselves providing information for our doctors, or pointing them to information - educating them, in a sense. If they need it, and are open to it, it might as well be one of us who does it.

And the doc who yanked my one hydrocodone a day just cut off my .5 mg of ativan. I think I'm going the kratom and mm route, high be damned.

chuas2 wrote:And the doc who yanked my one hydrocodone a day just cut off my .5 mg of ativan. I think I'm going the kratom and mm route, high be damned.

Another option is another doctor. I have found I have to walk a VERY fine line and not to appear to be "doctor" shopping, but if someone is treating you against all the literature regarding RLS, what choice do you have? Of course, you may be in an area or situation where you have no other options.

Here is hoping you DO have options.

Ok, yesterday's visit with so-called-pain doc. He actually looked at me and said " some people need it [opioid therapy] and some people don't. I don't think you need it." He then went on to NOT address the RLS, saying that he has a lot of patients and NOT ONE complains of this. He also said something like "RLS...as in restless legs? in your...ARM?" Priceless.

But yes, he's cut me down to one hydrocodone a day (he already yanked the other of my two pills a day and refused the ms contin), even though (which he acknowledged), I'm on very small doses and have been for about fifteen years. And says the ms contin goes in four weeks.

I am still trying the CBD/THC tinctures 18:1 and 1:1. Doesn't seem to be helping with the RLS, and makes my chest feel tight (a symptom I remember of the few times I've smoked). So I went to try and get kratom from the SoCal place recommended by stjohnh, but they apparently don't sell it anymore or I forgot to enter the secret decoder ring number.

I apologize if this is in another thread, I didn't see it. Also considering suing my doctor for makeup. Concealer in particular. Not being able to sleep because you feel like you're being shocked is not a laughing matter. Me trying to cover up the dark (nice shade of blue tho) circles under my eyes sort of is.

Ann, I forgot. This doc is with a huge pain mgmt center (I have yet...and I've looked...to find a pain mgmt doc not affiliated with one of the two we have in the immediate area), I'm first going to ask this guy if anyone in the clinic knows more about RLS (and the doc admitted that he doesn't know much about it). Then I'll have to consider outside my area, because the other one doesn't accept my insurance.

chuas2 wrote:Ann, I forgot. This doc is with a huge pain mgmt center (I have yet...and I've looked...to find a pain mgmt doc not affiliated with one of the two we have in the immediate area), I'm first going to ask this guy if anyone in the clinic knows more about RLS (and the doc admitted that he doesn't know much about it). Then I'll have to consider outside my area, because the other one doesn't accept my insurance.

It makes is so difficult - docs not knowing, the restrictions and the general panic about opioids, and our insurance situation in the US. So sorry you are going through this.

I burn every time I hear of this. If he is cutting you off from a medication that has been helping you - - w h a t d o e s h e p r o p o s e t o r e p l a c e i t w i t h? Has he even bothered to answer this question? Is he under the delusion that you won't need anything - that the disease will just go away?

Have you asked him that question and gotten an answer?

Thank you Beth. I appreciate the outrage, even if I truly wish that none of us had it. Yes, he said he had a lot of patients, NONE of whom complained of RLS. So off I go. He mentioned suboxone, and a place where you can do yoga, get acupuncture, and meditate, as if I could actually sit still long enough to do any of those things.

So based on the fact that he doesn't know anything about RLS, and that I don't have a diagnosis of cancer, I can "get along fine" without the very low dosages of opioids that I've been stable on for fifteen years or so.

I've been somewhat resistant, but am going the kratom route. Sigh...

chuas2 wrote:Thank you Beth. I appreciate the outrage, even if I truly wish that none of us had it. Yes, he said he had a lot of patients, NONE of whom complained of RLS. So off I go. He mentioned suboxone, and a place where you can do yoga, get acupuncture, and meditate, as if I could actually sit still long enough to do any of those things.

So based on the fact that he doesn't know anything about RLS, and that I don't have a diagnosis of cancer, I can "get along fine" without the very low dosages of opioids that I've been stable on for fifteen years or so.

I've been somewhat resistant, but am going the kratom route. Sigh...

He clearly has NO idea what RLS is. And, all too many of us end up with a doc like this. Here is my story for what it is worth...

I have seen about 20 of them over the years. Once I was forced to fly to Dr. Buchfuhrer because my doctor said he could no longer treat me, I was in such a better place. Yet, two years later, I STILL tried another local doc. She said she would work with him. She did...for awhile. But, she cut me off on a Friday afternoon, leaving me without anything. Thankfully I had small stash. Back to CA for a couple years. And, AGAIN, I tried a local doc. She was great for almost two years, but she went on maternity leave and her replacement? Let's just say it didn't go well. Every month I had to pay, out of pocket, for a full price visit - $130 at the time. After a few months, she brought a nurse in with her to "witness" the appt because she was going to cut me off, too, unless I agreed to start over with a sleep study, stop opioids, etc.

Back to CA I came. I still tried one more time - someone was raved about on here about how great the doctor was, so I made an appt. She didn't even understand the iron issue - was totally against infusions (this was 2014 or 2015) saying they would kill me. She was using data she likely learned in pre-med in 1990.

And, after that? I was done. Completely done. Never again will I go anywhere except a Quality Care Center if I can do anything to avoid it. I would move to a hovel to afford seeing someone at one of them - seriously. So, we moved to So Cal. I have spent thousands, literally, on doctors who do not get it, do not want to get it, and refuse to read about it, and more. And, the pain to my psyche? The lost sleep? The 15-20 drugs tried? Insanity.

Insanity, just about describes the position some (most?) of us are in. I had requested a trial rx of gabapentin encarbil from my GP. I take gabapentin but not the compound. Yesterday, my GP emailed me and said "no, you're already taking gabapentin, that is what is recommended for RLS. If it isn't working for you, see a neurologist."

Okayyyyy then. So much for doctors, whom I thought operated under the credo of "Do No Harm...?"

The CBD:THC compounds that I've been using now for two weeks (?) have the same effect on me, that other people reported here. Stuff is a bit sedating, but doesn't do anything for the rls. I'm online at Kat's Botanicals right now. Hope kratom can make a difference...sigh.

Views & chuas2 - Sometimes doctors have no heart. It beggars belief !!

THC helps me a lot, but only in combination with opioids. I think without the opioids it would be almost useless in my case ... but opioids alone also don't help enough that I would want to live without the THC.

Good luck with the kratom. It is quite likely it will help you.