Pretty sure it is RLS

Good morning. I've had RLS for years. I take a med called Requip but it has some bizarre side effects. One is wanting to shop too much--now you all know my weakness. I do have to watch it. WHy a pain med for RLS? DId you see a neurologist and not a PCP?

Yes, neurologist did nerve and muscle conductivity tests and all normal. In the last 5 months I have had just about every blood test nerve test and other test and if anyone looked at the the results you would think I am a very healthy guy. But something is certainly wrong. I started gabupenton about three weeks ago and hit helps but still have horrid tingling everywhere but allow me some sleep.

I never had any testing. My neurologist actually asked my husband if my legs moved a lot when we are in bed and Dave said yes. The rest is history. If I don't squelch the feeling of something crawling around in my legs it drives me insane. I have to move them to stop the feeling. Of course, it comes right back as soon as they're still. Also, I never used to be able to sit still. If I was flying I drove the person nuts to me for changing positions so much. Now it's not a problem.

I am a huge proponent of seeking a second opinion if something is still off. This is your body and if something is wrong, you know it. Have you told the dr. tha the gab isn't really working? Maybe it's the wrong dose?

So, what will you do now? How about a second opinion?

I had RLS. Dr. Put me on 900 mg of Gabapentin every night. Now I sleep almost to good. B-12 only comes from animal sources. If you are a vegetarian you may have to take a pill I was b-12 low so now I take the pill. RLS is gone.

I have an excellent PCP who is dedicated to helping me through all of this, we are working different options with meds and she is referring me to a university neuro center to see if they can provide some better answers. Right now I am on Wellbutrin and taking gabupenton. I have a prescription of ropinrole but holding off on taking them since I have read some things I don’t like with these dopimine replacement drugs

So your case interests me a lot. So how do you know you had RLS because you say it is gone but RLS is not curable. So I am not a vegetation and should have gotten plenty of B12 but think it may have been driven by my PPI use for reflux. But did not use that much so not sure? But sound like you had B12 deficiency also? What your your level when they tested? Also do you take 900mg of gabupenton at bedtime or throughout the day?

I'm glad that your PCP is excellent and that you trust her. And I don't like the idea of dopamine replacement either. And I have experienced some of its side effects at higher doses. Of course, the decision to take it is up to you. But your doctor prescribed it because she thought that the benefits could outweigh the side effects and give you relief, perhaps just until you can get into the neuro center. I also take Wellbutrin but I don't think that has anything to do with restless leg.

Also, I immediately got B12 shot series and now fine and take orally so b12 levels fine but still have the aweful RLS symptoms of tingling and pain…the part I am baffled by is moving my legs does not relieve anything…the pain and tingling isn’t her regardless

Hi, @ccstahl, sorry to hear about your issues!

I started having RLS symptoms (along with other symptoms) in 2019 and it was like torture! After about 18 months of testing and trying different meds my resting tremor had progressed significantly so my neurologist started me on Sinemet and my muscles relaxed within 1/2 hour. No more RLS. It was such a relief! I could sleep again. Prior to that I could only sleep by taking Pregabalin and muscle relaxers and still I woke up frequently.

Unfortunately, over the next year, the wearing off period brought back the RLS. I was given a sample of the Neupro patch and it works 24/7. I haven't had RLS symptoms for the past 6 months. Unfortunately, Neupro is prohibitively expensive but if your insurance doesn't cover (I think it's Tier 4) and if you're in a lower income bracket, you may be able to get help to pay for it. I have not noticed any side effects but I think it's a lower dosage (2 mg) and I have been taking it only every other day rather than every day as the effects last long enough for me. But I do exercise a lot and am pretty fatigued by the end of the day so that, in addition to the meds, helps me sleep.

I did experience RLS I think about 8 years ago and tried magnesium and it helped for awhile, so if you haven't tried taking magnesium you might give it a go. I've read that magnesium glycinate is the best-absorbed form of magnesium. But if that doesn't work and you're not opposed to it you could ask your doctor if Sinement or Rotigotine is an option, at the lowest dose.

Take care and good luck!

my situation is very rare. Only 300 people have it; please go to Mayo Clinic/Steve Grinstead. Also, Brain and Life April/May issue/Steve Grinstead. Google Superficial Siderosis. It has caused me to develop RLS and neuropathy among the 39 symptoms. I did have a B-12 deficiency and RLS caused by nerve damage from the SS. The RLS and the B-12 is under control as long as I take my supplements and meds. If your B-12 gets dangerously low they can give you a shot. I am not familiar with gabuenton. There is a difference between "gabupenton" and gabapentin, I think. I take my meds at bedtime. I know that I have RLS because it used to wake me up at night. Also, I did a sleep study and they said that I have RLS. I googled "gabupenton" please check spelling. Hope this helps.