Restless Legs Syndrome (RLS) Discussion Board

WOW. That is really incredible. I bet you really do feel better! I wonder if there were any toxins in the fish oil - heavy metals, maybe? - that added to the issue.

Funny, I started my journey with an elimination diet. I had no results, so headed down other paths. I am very envious when this works for others, but very grateful, too. Then sometimes I think, I am not sure I paid attention to things such as gelatin capsules, so maybe I should try again.

What a wonderful result. Well done

I have to do that. Especially since I've had improvements with dietary changes. But how. The task of looking up how to do it, and figuring out what to buy, and how to make sure I eat enough to keep going to the gym or decide if I will temporarily quit the gym and get depressed .... etc . I need to do it, though. Any pointers for where to start?

I had no idea gelatin was in so many things I was consuming. Most of my medications and vitamins had gelatin. When I did my elimination diet, I stayed on my prescription meds only and stopped taking everything else. The amount of gelatin in my prescription meds was small enough that I was nearly asymptomatic. Fish oil, vitamin D, vitamin E, multivitamins, and others were all giving me far more gelatin than the prescriptions. Since then I've found vegetarian and vegan vitamins I can take instead. I was taking most of the vitamins to try to make myself feel better anyway, unfortunately, and I'm feeling much better without them. (FYI, I was tested for heavy metals by a neurologist last year--and everything came up normal, except for slightly elevated copper and slightly low zinc.)

The elimination diet I used is downloadable from here: http://www.fammed.wisc.edu/files/webfm- ... atient.pdf

It assumes it will take several days or weeks for your body to respond to dietary changes. In my case, it took one to two days for symptoms to go away when I stopped eating something, and at most a few hours for symptoms to resume when I ate something I was sensitive to. I also scaled down the elimination diet because I knew my symptoms came and went rapidly, so they couldn't be triggered by something I consume infrequently. And I already knew about the dairy issues, so I'd already eliminated dairy altogether from my diet. To be honest it didn't take much effort for me to switch to the elimination diet because at that time I was already eating a quite restricted diet: fruits, vegetables, beans, legumes, brown rice, quinoa, etc.

Not directly related to the elimination diet, but I also saw a registered dietician, who was very helpful in figuring out nutrition when I went dairy free. I learned that the term "nutritionist" is pretty flexible, and people with minimal training can use it professionally, but the term "registered dietician" indicates college studies in nutrition and additional training. Most of the nutritionists in my area were selling supplements, vitamins, protein mixes, etc. The registered dieticians were not. YMMV but I learned a lot from my dietician, and I'm going to see her again soon to tune up the balance of foods I'm eating.

About eating enough to keep going to the gym...I wouldn't think that would be a problem. I was eating lots of protein from fish, beans, etc. I also ate a lot while I was on the elimination diet because I didn't know how much of a food might be needed to cause a reaction. I wanted to make sure if something was going to trigger me, it had the chance.

The only other thing I should throw in here is that one risk of doing this is of course aggravating your symptoms. I had to lower my neurologic meds (which were suppressing pain and other symptoms) in order to be able to tell if the dietary changes were making a difference. When I finally added the fish oil capsules back into my diet, I was in pretty serious pain within 30 minutes, and all I could do at that point was wait it out. In a few hours the pain faded a bit, and the next day it was gone.

I'm happy to discuss this offline with any of you. DM me. I hope this can help someone feel better.

Thank you! I can do this. I have the impetus now. I can't try until mid December, since I have a conference to help organize next month and travel right afterward. I can handle some bad symptoms if my life is fairly normal (no conferences, no travel). Christmas time will be good - I will take some time off, and there will be less pressure from work.

And thanks for the difference between nutritionist and registered dietician. I wish I had known this yesterday for a conversation I was having with a friend who might have Type II diabetes - I know he eats like crap, and I was trying to convince him to see a nutritionist, but he had had a bad experience with one. Maybe he saw someone who was not as knowledgeable as he needed - not a registered dietitian.

About eating enough to keep going to the gym...I wouldn't think that would be a problem. I was eating lots of protein from fish, beans, etc.

This is good news for me.

I can guess at a few foods I shouldn't eat, but I've never had WED/RLS symptoms from them (or if I did, they were masked by the generally high level of my symptoms at the time). My mouth itches when I eat eggplant (but not if I salt it for a few hours then rinse the salt off before cooking), so I probably have a mild allergy to eggplant. It's not so clear with pineapple; raw pineapple makes my mouth hurt mildly (not an itch). I can't remember if canned or baked pineapple does it, I don't think so. (and I have never liked pineapple juice.) Not sure if that's an allergy. So I decided yesterday that pineapple (which I hardly ever eat, anyway) joins eggplant on the list of banned substances. Interestingly, the bottom of the handout you linked to says that if you're allergic to latex (I get contact dermatitis from latex) you may react to, among other things, pineapple.

Hello! Can't believe it's been almost a year since I posted. The last time I updated you all, I was in full remission from my weird cavalcade of symptoms and feeling fantastic. I thought I had all the answers. Um...NOPE. My symptoms largely came back late last year, not as severe as before, but it was still puzzling. The latest answer in the puzzle is wheat. Eating wheat makes me fatigued, causes some mild pain, makes my body spasm sometimes at night, etc. At the moment, I am dairy, gelatin, wheat, and alcohol free, and my current symptoms are mild to minimal. It's been crazy. None of it makes sense. All my doctors are baffled. But I'm feeling good again, so I'll just shrug my shoulders and go with it. I hope you are all well, and @badnights, I hope you were able to try changing your diet and see if that helped. I've had my fingers crossed for you.

Oh, my. How frustrating! You did have a test for celiac, right?

I was tested about two years ago--colonoscopy and upper endoscopy. No sign of any sort of celiac issue. The doctors have absolutely no idea what's going on, other than maybe my immune system is generally becoming more over-reactive and as it does, I am having stronger reactions to certain foods? I'm taking a break from doctors for a while and focusing on figuring out which foods and medications make me feel better, worse, etc. Then I'm going to try to find a doctor who might be willing to try a mild immunosuppressant on me to see what effect it has. I still have chronic high inflammation levels, way above normal, even without dairy, gelatin, wheat, and alcohol, so I'd really like to get those levels down, and I don't know how else to do it other than medications. It's been quite the adventure!

Adventure is putting it mildly!

SnappyK I'm sorry to hear things have worsened, but I'm glad you;ve found another culprit. I can't believe it;s been a year either ... I haven't done a thing except survive from day to day. Sheesh.

Hello, folks! I'm checking in after a year and a half (A YEAR AND A HALF???) to say hey. I'm still trying to get a diagnosis for all my issues, but to the best of my knowledge, I have a mast cell issue. That's why I react to different foods and alcohol, why I feel worse in wintertime, why I feel so terrible when I get a virus, and why when I have a "flareup" I get brain fog. I take a combination of OTC antihistamines 2-3 times a day, and I'm back to work full-time, although I'm still fighting some pain and fatigue issues. I've been thinking of you all lately because the last few weeks, I've been having mild RLS-like symptoms in my legs in the evenings again. Everything old is new again! Now I'm wondering if the RLS-like symptoms I'd had before were a sign of a mast cell issue.

Anyway, I hope you are all doing well. Take care, and if any of you happen to have the answer to all my problems, be sure to let me know!

Hey SnappyK! Interesting! I will definitely keep you in mind if I solve it, lol.

I've been thinking of you all lately because the last few weeks, I've been having mild RLS-like symptoms in my legs in the evenings again.

Maybe your main problem is a mast cell issue but you have a susceptibility to WED/RLS which is being triggered by your use of antihistamines. If the antihistamines are helping with everything else, you can't stop them, but .. too tired to think right now, but maybe there is something to be done about the intermittent WED/RLS if it is just from the AH use...

Hi ViewsAskew and badnights! My legs magically got better, so I have no idea what that was about. BUT I just stumbled across this: https://jcsm.aasm.org/doi/10.5664/jcsm.8216 and thought y'all might be interested. Article title: "Restless legs syndrome is associated with mast cell activation syndrome"

I knew I'd read about mast cell something or other recently! I saw the same thing. It basically says RLS/WED is more common in people with mast cell activation syndrome, and questions if hypoxia is somehow the link.