Is this RLS?

Posted , 10 users are following.

I have been having tingling in my legs for the last 6 weeks.  It never stops.  It's slight enough that I can't feel it when I'm moving but if I'm still, regardless of whether I'm sitting, standing or laying, I feel it.  It never stops, day or night.  I might get 10 seconds of relief after walking around for awhile, but that's the best I can hope for.  

Does this sound like RLS?  Or is this something else?  It's ruining my life because I cannot sleep.  I didn't sleep for even 5 minutes last night.  Nothing.  I have a ton of stress in my life and I don't have time for this.  

So far, here's what I've tried (with no success):  

I've been gluten free for 10 days

No alcohol

No caffeine

I take magnesium, iron, a B-complex, vitamin D, and an herbal sleep aid daily

I take probiotics twice a day

I drink kombucha

I avoid grains except for rice

None of the above has helped.  Of course, I have been under a huge amount of stress.  Just yesterday I was threatened/attacked by a homeless guy while walking down the street.  I can't seem to go even one day without some major stressful event that causes my adrenaline to spike.  

Oh, I should also mention that I saw a neurologist 5 weeks ago. He said I don't have Parkinson's or ALS, wrote me a script for a muscle relaxer (which doesn't work even a little bit) and that was that.  

0 likes, 18 replies

Report / Delete

18 Replies

Next
  • Posted

    Hi Nikki

    I have rls but I've never had the tingling sensation that you are describing it may be the start of rls or it could be something else I would go back to your dr, I know what you mean about stress it can do all sorts of strange things to your body we are buying our first house my partner is in his 50s and I am nearly 50 and I've never experienced a process like it and my nerves are shot to peices over the stress of it all,anyway please go back to your gp I'm sure they will help.

    Good luck

    Sharon67835

    Report / Delete Reply
    • Posted

      So, how would you describe RLS?

      The feeling I have is sort of twitching/vibrating/tingling.  Sometimes my muscles twitch visibly, but most of the time it's just a feeling and you can't see it from the outside.  It isn't painful but it's irritating enough that I cannot get any sleep.  And, like I said, it never stops.  It sounds like most people with RLS eventually get a break in the sensations, but I never do.  sad  

      Report / Delete Reply
    • Posted

      With my rls I get a uncontrollable erge to move its not always just my legs its my whole body and it always at rest night and day,my neurologist put me on ropinerol and codeine they also discovered reverently my iron,b12,and folic acid levels where low which can make rls worse so I was put on supplements which has helped a lot,my rls can be uncomfortable and painful at times,I do get some tingling but not always it is mainly that I cannot stop moving when at rest and I cannot control this sensation.

      Report / Delete Reply
  • Posted

    Have a look at the RLS -UK web site. There are some useful pointers about whether or not you have RLS. An irresistible urge to move your legs is one of the criteria. Diagnosis can be a drawn out business. 
    Report / Delete Reply
  • Posted

    Yeah, maybe it isn't RLS. I don't feel as irresistable urge to move, but the tingling always stops when I do. So, I would prefer to be moving, but I can stay still if I need to.

    Anyway, I'm pretty sure stress is there trigger on my case. Stress can alter your guy microbiom and cause many problems that way. I saw a therapist yesterday and just describing all the things I have stressing me out had him looking stressed. I've had at least 10 major stresses in the past 2 months. I was attacked on the street on Tuesday, for example.

    Anyway, I guess I need to just keep trying to figure things out. I can't get in to see my doctor because she's booked until November. By then, who knows what will be happening.

    Report / Delete Reply
  • Posted

    All I can suggest is to spend time searching for a Doctor who knows something about 

    RLS. Very few physicians know enough about it to treat you. Mine happens to be a pulmonologist. I take ropinrole (the generic for Requip) and have to take it exactly on time and if I forget, I regret it because it takes 2 hours to work. I have not found that diet changes made a difference with me  but I would continue with the supplements. Make sure you take an iron that is absorbed, not all are. Sometime. A warm bath at night is helpful. This is a disease that is an extreme nuisance and definitely can interfere with your sleep. I am lucky that ropinirole works for me and that I haven't had to increase the dosage. Also I exercise at the gym at least 3 times a week which seems to help. I wish you the best at getting control of your symptoms. All of us who suffer with this disease understand what you are going through and wish you the best in finding what will work for you.

    Report / Delete Reply
  • Posted

    I think stress does make it worse in my experience . I had rls during  pregnancy   and it drove me mad. I had low iron levels at the time which can be related to rls , have you checked your levels ? I took floradix and spatone which are natural iron supplements.

    I've also worked out since that I get relief from putting my feet in a bowl of hot water, as hot as I can stand it. I dip feet in and out to warm to the temperature then gradually feel comfortable putting whole foot in. The heat relaxes my joints and muscles and seems to calm down the restless feeling too. I also take a hot water bottle to bed and place it between my feet ( with socks on ) and the heat works this way too. Hope you find some relief, it's a lot to deal with every day especially whey you're tired . Good luck .  

    Report / Delete Reply
  • Posted

    So, after some further research I guess I have benign fasciculation syndrome.  It's a little similar to RLS, especially since in my case all the tingling happens in my legs.  But, no urge to move which is basically the hallmark of RLS.

    Unfortunately, there's no cure and I have not had much luck with anything so far.  I managed to see my doctor and both she and my therapist recommended I take a week off of work.  I took 3 days off (plus the weekend) and no change.  I've also seen the chiropractor for adjustments 4 times now and got a therapeutic massage (which hurt like hell).  Nothing.  The relentless twitching continues. 

    I can tell you this much, it really sucks.  I basically cannot sleep; last night I had to double my dose of ambien to get to sleep.  I haven't slept without medicine for a couple weeks now, and that's really scary.  

    Report / Delete Reply
  • Posted

    Hi Nikki

    I know how you feel it is scary I take ropinerol,codeine,tramadol, and if I have a bad attack of rls I can take diazepam,they way I look at now is I will have to take most of this medication for the rest of my life my neurologist has recently confirmed this but he also said yes its scary because some if this is addictive but as your going to be taking it for the rest of your life I wouldn't worry about it,yes its chemicals but if you need it you need it and as long as your sensible I try to be then you should be fine,I don't have the symptoms nowhere near as bad as I use to,

    Hope this helps put your mind at rest try not to worry.

    With regards

    Sharon

    Report / Delete Reply
  • Posted

    Have you tried eliminating Kombucha from your diet?  Honestly I'm going through the exact same thing right now, and the only thing I can think of as the common link is the Kombucha.  I just drank some Kombucha, and my calves tightened up and my feet started to tingle more.   Kombucha has been linked to muscle cramps and RLS.   I'm going to go off Kombucha completely and see if things improve otherwise I will visit a doctor shortly. It will be interesting to see if it's the Kombucha.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up