RLS "All Over My Body"

Hi, I just joined after this site popped up while I was looking for others who get RLS all over. It's making me crazy, but I've successfully treated mild bouts of it in the past by taking iron supplements, usually Fergon, one tablet twice daily. That cleared it up in a few days and added a feeling of more energy. I usually discontinue the vitamin after about three months. This time around nothing's working. I've been on a med regimen since 1996 for what was finally diagnosed as Dystonia. Back when a group of weird symptoms presented, I wasn't taken very seriously. The meds have helped a lot. It took a few more years to accidentally find the culprit, which was aspartame sensitivity (a popular artificial sweetener found in most diet drinks and foods). My symptoms back then were tremors, muscle rigidity, mild lack of full coordination in my limbs on the left side, and twitches all over. My muscles and ligaments hurt but the most miserable part was an intense burning in my legs that felt as if I'd been badly burned. It came on rather quickly, with a rapid progression of about six weeks. I went from being a healthy middle aged woman to barely being able to pull myself together each day. Now I take an acetylcholine blocker, Benztropine, the minimum dose twice daily, to aid in controlling muscle tremors and twitches. (It's also used in Parkinsons treatment) I take a very low dose of Chlorazapate, a mild tranquilizer, to control what presents like a Benign Essential Tremor, and low dose Baclofen twice a day to aid in muscle rigidity and a pulling in my neck. I also maintain my blood pressure with meds. A few days ago I changed to a different BP med to see if there's a side effect causing the RLS. I'm 60, travel a good bit and am fairly active and healthy now. You wouldn't know there was ever anything wrong to look at me. In 2008 I suddenly began having vertigo and I thought it was unrelated to the dystonia. A friend showed me an article about the effects of aspartame in some individuals, one being vertigo, but the list also included many of my symptoms. I decided to cut that from my diet immediately and completely to test the result. Sure enough, within a few weeks I began to improve. It took several more weeks for my body to fully respond. The burning is gone, most of my muscle "inflammation" subsided, and the coordination issues went away. My neurologist was taken aback by the difference, though I didn't tell him of the "experiment" for a full year. I didn't want to be dissuaded until I was sure the improvement was linked to discontinuing the sweetener. Now years later it's common to see articles about aspartame being a neuro-toxin. I have to say I'm baffled also about the restless legs "all over my body" situation I'm currently experiencing. I've experimented with diet, side effects of meds, noting caffeine intake, and for sure I've removed Splenda from my diet just in case. The iron I've resumed taking has raised my energy level, but hasn't offered relief of the RLS this time. I, too, would love a good night of sleep. I don't think my diagnosis of Dystonia currently applies. I feel like I have residual damage from the aspartame intake long ago. To add to my family history, my sister began having neurological symptoms, slurred speech, and then inappropriate laughter, at age 58. We are ten years apart in age. Her favorite thing was diet coke and she always had one in her hand. It was too late to try to fix her situation and she passed away at age 64, her diagnosis being Progressive Bulbar Palsey. A bad way to go. There's not much anyone could say that would make me believe she, too, wasn't sensitive to aspartame. I'm doing a very good job of holding my own, so if we can get this RLS thing gone, life would be that much better! I pray everyone in this group finds relief.

7 Replies

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  • You are on a lot of medications which may or may not be responsible for your symptoms.

    You could look up the list of contraindicated substances on the ---(rlsuk) ---site.

    Or alternatively email Dr Mark Buchfurer on the (rlshelp.org) site , with what you have related to us.

    I do hope you find help, and so sorry to hear about your sister.

    Good luck.

  • Meric ,Madlegs has just advised what I was about to write. I dearly hope that you get a solution.x

  • I wish that drs would understand how hard is is to have RLS. I have been trying to get off of my Meripex for awhile. I use to take almost 2miligrams of Meripex and now I'm down to .50 milligrams. I have been having augmentation and it's really hard for me but I'm not giving up. I have been trying to get a lower dose in my Meripex in extended release because I can manage a more normal life and not want to go to bed so early and miss out on life. My insurance company decided to wonder if I needed this medicine and I thought really? So they have to talk to the dr first I thought I have had this since I was eight years old all my life they don't really understand this RLS we put up with. The reason I want off of this medicine is because I'm afraid someday they would just take it away and then what? I know I ask my dr for something to relax my muscles while I'm trying to drop this medicine and he said no. I couldn't believe it so now what I'm just taking it in my own hands to stop it and that's not right to me. I wish we could have more help with this and drs would take us more seriously because we all need understanding and care. I hope you are doing better and I wish that for all of us.

  • Hi Meric,

    There's a good reason aspartame ( and other artificial sweeteners) are called the devil's candy. They all poison our bodies. Well done for getting off the stuff. I really hope you find some relief from the many and varied neurological symptoms you have.

    Take care

    Jools

  • This sounds intersting. Is aspartame just in artificial sweeteners, or is it in lots of other things? Which foods should we be avoiding??

  • It is in quite a few diet drinks and diet foods, I stopped using sweeteners after reading about aspartame there seem to be for and against .

    Go to supersweetblog.wordpress.co...

    It gives lists of food and drinks containing aspartame.

  • it is com at the end and click on foods containing aspartame .

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