Restless leg, arms

Discussion in 'Fibromyalgia Main Forum' started by Krbholmes, Aug 6, 2017.

  1. Krbholmes

    Krbholmes Member

    Wondered if anyone with cfs/fm can relate to the terrible sensation of arms and legs literally crawling and jerking so hard they can't take it anymore! My sensations are so bad it can last for days with no relief with any meds and I end up at emergency room and still haven't been able to get any relief there and am treated like I am a nut! I have been given huge amounts of pain meds and muscle relaxers to sleeping pills and Xannex and none of it stopped it!

    When my RLS gets this bad it has lasted non stop as long as 72 hours and I am left in so much pain from the constant movement and jerking and so sore and unable to rest at all I finally pass out from exhaustion. I have been jerking so hard that I have actually socked myself in the face and busted my lip.

    It is almost unbelievable and I don't see how this can be called RLS especially when you are prescribed meds for Parkinson's disease and it's the only thing that does help. I find mine gets much worse when I have not been able to sleep for days or I have overworked myself, especially my legs, such as a day I am feeling good and have a little extra energy. I noticed this began as leg pain then jumped to jerking and crawling sensations. I would not wish this on my worst enemy. I am scared to death to not sleep for a few days or put in a position where I have to walk more than normal. Then again this can come on if I am not active at all.

    I am 48 years old and have had fm for over 20 years, since 2012I've been home bound, I only seem to be getting worse and worse, I don't know what's next!
  2. Nanie46

    Nanie46 Moderator

    Hi Krbholmes,

    I'm so sorry to hear you are going through this.

    Unfortunately, conventional medicine does not usually look for the cause of symptoms or illnesses.

    They just prescribe pharmaceuticals to try to cover up symptoms, as you have experienced.

    Functional medicine practitioners look for the root causes of problems like RLS and FM. They help patients address the root causes to reverse the symptoms.

    Here are some good articles that may help you from a functional medicine perspective:


    Please come back and visit us here often. There are lots of great people.

    Take care!
  3. hangininthere

    hangininthere Well-Known Member

    This is a long-shot, but I know someone who got Restless Leg Syndrome when they started snacking on a lot of nuts. They are mostly bedridden with Chronic Fatigue Syndrome and I suggested a can of nuts on bedside table for when hungry and can't make it to kitchen for something to eat.

    A normal amount of nuts never bothered them before, but a lot of nuts did.

    I backtracked to when her RLS recently started, and tracked it to when she started eating a lot of nuts. I told her it could be from the nuts. She stopped eating them and her RLS quickly went away. Huge relief.

    Maybe you could be having a bad reaction to a food or med or supplement all this time.

    Or if you have Parkinson's Disease, maybe it could be from that when you overdo.

    Last edited: Aug 8, 2017
  4. sunflowergirl

    sunflowergirl Well-Known Member

    I'm sorry for all your suffering. How about alpha lipoic acid? My cleaning lady takes it for twitching/tingling of her legs. I had taken it when I had those "funny" feelings, and it seemed to help, then of course I stopped it. I'm starting taking it again.
    bct likes this.
  5. bct

    bct Well-Known Member

    Sun, I agree with you about the alpha-lipoic acid for "restless" nerves. It helped with my peripheral neuropathy.

  6. Granniluvsu

    Granniluvsu Well-Known Member

    Hi All,

    Thanks for this chat on RLS. I have had this on and off for years along with FM /CFS etc., mostly at night but some nights a lot worse than other. How much do you all suggest taking.

    Thanks Barry, Sun , Patti, Nanie, et al. Hmm, that is interesting about the nuts too. Any info on this would be super :)!! It seems like it s one ething after another - geez !I'll see if I can get that at the health food store. Hope it helps. Do you all take it at night every night?? or what?

    Now I have something like a rash UNDER the skin too but sometimes you can hardly see it and have to really have to look. and other times you can see it, at least I can. Also my skins has gotten more itchy and burny. Wondering if it might be nerves or stress with some of the stuff going on over here. Sorry to witch over to another subject on you. Any ideas anyone. Thought of allergies too but I have eliminated some things off and on without much results from various supps.

    Thanks to all ,
    Huggz and God bless,
    Last edited: Aug 11, 2017
  7. hangininthere

    hangininthere Well-Known Member

    I just thought of this. Could it be Tourette Syndrome? It has unbearable jerking and tightening of the muscles that's exhausting and painful when the Tourette is a severe case. It oftentimes gets worse when you're under stress.