Restless Leg Syndrome or what?

I'm going nuts! For two months now I've had twitchy tingly legs that are disrupting or preventing sleep. It feels kinda achy, but mostly tingly and sort of twitchy. My legs don't actually jerk. Massage doesn't really help. It seems like getting up and moving around does. I'm trying ice packs tonight. Is this Restless Leg Syndrome? Can't be peripheral neuropathy, right? I've had A1c's below 7 for years, and I am at about 6.5 now. Any advice?

Have you had your thyroid checked lately. It could be hyperthyroidism. I have no medical training or anything, just suggesting it might be an idea to get it checked out.

I find what helps is a herbal relaxing tea - the one that helps me most is lemon balm / melissa / balm mint ... it goes by various names. You can pick it from the garden if you are in one of those countries where it grows, or you can buy it dried and loose or in tea bags in health shops.

I always think it's not going to do any good as I keep moving my legs around and trying to make them relax. I remind myself that I have to actually be lying down if I am going to go to sleep ... and the next thing I know I'm waking up (not necessarily in the morning, but the legs are feeling better ..) saying "oh! I slept a bit!"

Never had any serious help from medicos on this one. They may or may not call it restless legs - it doesn't make any difference whether they do or not because there is no easy answer anyway.

It could be any number of things. Nerve problems (particularly impingement) can cause spasms. It could be a sign of disturbed sleep, sleep apnea can cause RLS in several ways, lowered oxygen levels and jerking awake. And it could also be just an imbalance in electrolytes. Or it could just be RLS.

It could be a sleep disorder. I have what's known as periodic leg movement, which is similar to rls. my legs move 400-500 times per night. I use cpap to control my sleep apnea. a polysomnogram may be needed. I also have severe peripheral neuropathy which I cannot control. My suggestion? Have your doc refer you to a sleep disorder center for an overnight test.

I have RLS. Sounds a whole lot like what I have going on. They have Requip or Mirapex that you take before bed that is usually quite helpful if that is what this is. Unfortunately there is no real diagnostic test for RLS. Basically if you have these types of symptoms, especially in the evening, and moving helps this is diagnostic for RLS.

This site is a support group in California's website. They have a doc who has written a few books on RLS that answers email questions that they then post online. Found the info quite informative and even emailed and had answered a question I had. Good Luck

I get RLS infrequently, but it is a bear. I find Motrin really helps me.

I've had RLS for as long as I can remember. In my family, it's genetic. The symptom, for me, is the feeling that ants are crawling in my muscles and bones, and the only way to relieve the feeling is to get up and pace around. It's most common in the evening, or any time that I have to sit for a long time. I have gotten relief from Xanax (alprazolam), but the biggest problem with that is that it's addicting, and you need larger doses as time goes on to get the same effect. Requip did not work for me, and I have never tried Mirapex. However, adding an iron supplement, melatonin and valerian root have helped immensely. The iron is because they have found out that many or most RLS sufferers have a deficiency of iron in the brain. The melatonin is primarily because I have problems with circadian rhythm anyway, and it DOES usually knock me out.

I'm doing these medications with the full knowledge and consent of my doctor -- if you have RLS, nowadays, most doctors know about it, and are able to help. I suffered from it for decades, and I'd tell docs about it and they'd just shake their heads and say "I dunno." I hope you get help if it is indeed RLS! :-)

I've had RLS since my teens. I was diagnosed with T1 37 years ago at age 21. I had symptoms that would cycle for a few months on, then a few months off, but now I have it all the time. I take Requip which is quite effective but have heard that the longer you're on it, the more you need. I had known about this drug for awhile and finally asked for it last year, when I was in the hospital for 4 months. No way was I gonna lay there and suffer.
Before I started the med, I used to get considerable relief from soaking in a very hot bath - but be careful if you have circulatory problems. Other things that help are stretching and massage.
It is a real bummer to deal with. I live in Minneapolis and one of my sisters lives in Fargo and I had never been able to see her home because I couldn't tolerate the car ride. Same goes for planes. When I was still working I had an hour bus ride and would frequently have to get off after 20 minutes and walk about 10 blocks and then get on another. It would then take me about 2 hours total to get home. Never seemed to bother me in the morning though.
Many people think restless legs are caused by lack of dopamine - Requip is a "dopamine agonist" and increases the level in your blood.
There is a lot of info on the Web, but, as always, take it with a grain of salt. There are also a ton of snake oil creams and ointments for sale, but I've tried several and found them a waste of money.
Good luck. It's bad enough to have to deal with the db and then have RLS on top of it. Ick.

Kathy, I'm so sorry to hear you have yet another troublesome condition in your already complicated life! :-(

I wonder if anyone else in your family has it? I've been looking up the genetic research on it, and there is definitely a genetic component. And it might be good to have your ferritin monitored -- if it's low, you might be able to supplement, but I don't know how that would affect your other health problems.

At least I'm glad you are getting good results from Requip.

And the Restless Legs Syndrome Foundation http://www.rls.org has good information. There is still a lot to be learned about it, but at least we're not getting brushed off, or told it's an imaginary disease invented by Big Pharma, although some people (including MDs) still believe that and will openly say so. I just wish they could walk an exhausted mile in our shoes!!

I am with you Natalie. Kind of like everyone saying let me give the Doc a unit of 2 of Novolog and see how they like having a hypo......

Natalie you mentioned requip didn't work for you. You might want to try Mirapex if the RLS gets out of hand. Mirapex did nothing for me where the Requip really helped me. My Ferritin was also slightly low at Dx of RLS but I did not get any change from Iron supplementation. My ferritin was low at that point because my RLS symptoms were so crazy I had basically stopped eating. One of those chicken and egg things until I started eating better and taking iron for a while and could say it wasn't effective.

Like Xanax, pain medications have also proven to be pretty effective for many people. While I have met few non addicted people who actually WANT to be on these types of meds at the height of my problems I decided even being physiologically dependent on either was a far sight better than these symptoms, if it ever got to that point. Needless to say taking them ONLY when the symptoms are unberable has proven to be safe in MY case. My suggestion if anyone goes this route is to have a frank and in depth discussion about these concerns with the prescribing Doctor. Also, if addiction is a concern of anyones I would also challenge you to read about dependence vs. addiction. They are often seen as the same thing but are not. When I was trying to find something, really ANYTHING at the worst of my struggles with RLS I did a great deal of reading on this type of thing. It really changed my perception, mostly only colored by the typical media type reports, which we have all seen with Diabetes are usually less than accurate.

Anyways, I wish anyone struggling with RLS luck with their endeavors to find something that works for them. Not a fun thing to deal with AT ALL.

Hi Joe,

Sorry for you uncomfortable legs problem!

You mentioned that what's going on with your legs disrupts your sleep. Do you usually sleep in a particular position?

Marty1492

Yes - in roughly the fetal position on my right side. And I have for years. I've only had the RLS thing bad for about 6 months...

Hi Joe,

I only rarely have crawly-feeling symptoms, but my legs feel stiff and uncomfortable. The sleeping position that works best for me is sleeping on my stomach and sliding down far enough so my feet hang over the bottom end of the mattress. Don't know if it will help you, but I wanted to offer it.

And, for me, the crawly-feeling symptoms have been associated with low iron.

You've probably already read it, but Wikipedia has a good description of RLS along with a long list of possible causes.

Best wishes in solving you own symptoms!

Marty1492

Are you being followed by a Neurologist? My Neurologist really helped me out with this problem. It was trial and error because of another complication I have but we found the right medication. Requip worked extremely well for me but interfered with my stomach, therefore I had to discontinue use. Check with your physician regarding RLS medications.