In 2002 I was diagnosed with Ekbom's Syndrome by a Professor of Neurology in Birmingham. I was informed there was no treatment available. Previously I had endured this distressing condition for approximately 10 years. The pain became intolerable and I was prescribed very strong analgesics by my G.P.
In 2004 I retired. I was concerned about these drugs and discontinued taking them. I then discovered I had Lactose Intolerance and commenced a Dairy free diet. After 2-3 weeks the pain and restlessness in my feet, legs and hands began to subside. Now, unless I am lazy about my diet I am symptom free.
I have to be vigilant about the hidden Dairy Products in food, I have found Lactose in crisps!! I use a magnifying glass in the Supermarkets to read the allergy information, the print is very small on packaging. Lacto free milk, cheese, yogurt and cream are readily available in shops and there are plenty of soya products.
I have tested this remedy on myself constantly over the years with the same result - If I eat dairy products the Ekbom's returns..I did contact another help group with this information but was ignored. This has made me reluctant to share with others as people may think it is a hoax. Having found this site and reading the distressing messages I have changed my mind.
IF YOU WANT TO TRY THIS REMEDY YOU MUST DISCUSS IT WITH YOUR G.P. AND GET DIET AND CALCIUM INTAKE ADVICE
I hope this blog helps you all. If you do try it and your condition improves please keep me informed, if there is a link between lactose and Restless legs then maybe some researched could be initiated.
Written by
magsday
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Hi magsday. Wow - hadn't considered this. I definitely think diet has a lot to do with it, so I'll give it a try. Willing to try anything after a really bad week of hardly any sleep at all!
I give it a try starting today. It's 6.30am and I've only had about two hours sleep so lets hope this is the start of some reasonable sleep again. Thanks
This is really interesting...thanks for sharing...I've often wondered about diet. Not just avoiding certain things like coffee and ice cream! I just have to find the state of mind to make such a big change!
It really does not take long to learn what to eat milk, cheese, yogurt, cream, milk chocolate (dark chocolate is ok) are the problem foods and the substitutes are very good'
Hi it is great to hear from you all I really hope it works for you . There is a huge amount of info.and advice on the web about Lactose Intolerance. Lactose is a milk sugar and you need an enzyme called Lactase to digest it .Lactase in the body can decrease with age and lactose is left in the blood as lactic acid. Athletes can get pain from lactic acid which collects in their muscles during exercise. If we cannot digest Lactose does it collect in our legs, feet and hands.?
Did you know we are the only mammals on the planet which willingly drink the milk of another mammal and that milk is meant to support much larger animals than us!!! Enough gassing I hope this is being typed in the right place I have never blogged Before, but i am enjoying the experience.REMEMBER THE CALCIUM!!! CHEAP IN THE SUPERMARKETS
Uh, for once I hate to be Nancy Negative, but PAIN is not a symptom of restless legs syndrome. It may be one of Ekbom's syndrome, but not RLS. Anyway, glad you found relief and don't have to take drugs anymore.
Some people DO have pain with their RLS. I am one of them.
Dear Mag
I just found the following article about the subject you brought in :
Symptoms of Lactose Intolerance in Adults
If you’ve been wondering if you are lactose intolerant then you’ll want to be aware of these specific symptoms of lactose intolerance in adults. The symptoms can range from mild to severe depending on the amount of lactase your body produces. Some symptoms that you may experience are listed below:Excessive Bloating
Vomiting
Cramps and pain in the lower region of your stomach
Bubbling sounds within the lower area of your stomach
Gas
Diarrhea and loose stools.
Unfortunately the symptoms in adults mentioned above can be a result of other issues and are not a definite way to say for sure that you are lactose intolerant. It’s best to get it officially diagnosed by a doctor, but if you’ve experienced a combination or all the symptoms listed above there is a chance that you are lactose intolerant. Some of the symptoms of lactose intolerance in adults may only appear when you eat certain foods, for example dairy products. If you consume ice cream, cheese and milk and immediately experience some of the symptoms mentioned then the chances of you being lactose intolerance has just increased.
As you grow older you may experience these symptoms of lactose intolerance in adults even if you’ve never had issues in the past with dairy related products. It can suddenly occur in adults as they age, so do not think that because it was not an issue you’ve dealt with prior, that it cannot occur now as your body changes as you age.
For most people they will start noticing lactose related issues in their late teen and early adult years. These symptoms usually continue on for the rest of their life. You can treat the symptoms but there is no known cure. The best way to eliminate the issue is to change your diet to be lactose free. The small intestine is what produces lactase and if that is not occurring, then you’ll continue to experience the symptoms as outlined earlier.
There have also been cases when a person is born lactose-intolerant but it is definitely rare. It is more common in adults, and to be more specific when they age. These symptoms of lactose intolerance in adults tend to be embarrassing as well. No one likes to know that they can be caught in an awkward situation where they are having diarrhea issues, so if you know that you are definitely lactose intolerant then by all means always ensure that you do not consume foods that can lead to the said issues.
If you’re thinking that you may be lactose intolerant or you are experiencing the symptoms of lactose intolerance that is described above then the only way to know for sure is to visit your doctor and let him/her run the appropriate tests. Keep in mind there are other issues that adults experience that are similar to being lactose intolerant so the only way to know for sure is to visit your doctor and get an official diagnosis. At that time the doctor will be able to let you know if the symptoms are related to you being lactose intolerant or if you are experiencing another issue such as irritable bowel syndrome.
I had those symptoms off and on for some years and put it down to the drugs I was on. I took Dihydrocodeine at night it did nothing for the pain but did " Knock me out" now I think this helped to control these unpleasent symptoms during the day. I travelled a lot in my job so In some ways I was very lucky. I had wonderful treatment from my G.P. who insisted I had xrays during that time and they have been repeated again in recent years for other reasons and I have no problems. It was not until I came off the analgesia and those gastric symptoms persisted I was diagnosed with Lactose Intolerance and all my symptoms gastric and rls ended with that diagnosis. It would be interesting to know if othe people suffer from these symptoms too. I am amazed at all the drugs that are prescribed these days for rls. They were not available when my rls was causing so many problems. I was offered amphetamines by tje Consultant but we decided not to go down that road. Thank you for your concern.
I have not one of those symptoms described above. And my RLS is not pain, it is horrible sensation of something inside my skin trying to find room in there to circulate. Sot of like a pressure that does not hurt but feels like it is squeezing all ability for your arms, hands, legs and body to breath and in fact, when it gets really bad if I do not move, I cannot continue to breath. But I have found nothing that works. The patches and Horizant together were working, but now it seems that too has passed. I have tried not eating dairy in the past, but I am not sure how perfect I was at considering all foods that have dairy products hidden. Even though I do not have the symptoms of lactose intolerance, I will try it. And yes, I have have found that Aspertame is listed in some places as a problem for RLS suffers. I discontinued all contact with that , but it made no difference.
As always, what works for one doesnt work for someone else. That what is so difficult about RLS, I also have not got any of the symptoms mentioned about Lactose.
Having never had contact before with other suffers I was surprised that RLS does seem to present itself in so many various ways. I agree that the Lactose theory may not work for everyone or may just have worked for me. At that time I would have stood on my head, naked in Hyde Park if someone had said I could get some relief.
LOL, i said once in another support group, that i would run around the block naked in the snow, if i thought it would help.
Yes, RLS, does vary for many of us and what some can take and some cant.
Chocolate, caffeine , sugar and many other food stuff, can make it worse for alot of us, Then, someone else can eat or drink anything and it doesnt bother their RLS. The same with exercise, some find to helps, some find it makes it worse, some find it doesnt make a difference either way.
Thanks Elisse I wish there had been this kind of support around 20 years ago. My G.Ps were good but called the condition Funny Nerves!! and as it was not life threatening I did not make too much fuss. I felt very isolated.
Lots of people felt that way years ago, and even quite recently, as they dont always know there are support groups out there. GP's didnt know how the treat RLS, years ago, so many suffered on their own, trying to cope. My father had RLS, altho he wouldnt have known what it was or even thought about going to a doctor about it. I have to say, his was only mild. The reason i knew i had it was because of me remembering my father sitting on the edge of his bed thumping his legs and my mother and father eventually sleeping in separate beds, my mother saying his fidgiting kept her awake.
RLS, is not life threatening in its self, but sleep deprivation can lead to other health issues, and how many of us have left like enough is enough and wanted to sleep and not wake up ever... That is one the reasons that not enough money goes into research because it is considered not life threatening.
You are right. My husband has benefited from my improvement but he was so patient. I do have very occasional restless nights. I sometime get the tingling and cold feet but I think this is down to circulation and age I am 70.
For Lactofree information visit lactofree.co.uk/products this company produces items made from ordinary milk with the lactose removed (fresh or uht). I much prefer them to soya products. You can get small portions of lactofree milk to take out with you. The soya cream and the yogurts made by Alpro are good. I also use Dream Rice milk on Cereal. In tescos I found some lactofree chocolate and caramel puddings. They move these products around in the supermarkets so it is easier to ask where they are.
The Lactofree company make hard cheese (they have improved it lately) and tubs of soft cheese. Otherwise you can have a normal diet, it is only the processed foods you have to watch i.e.pizzas, ready meals etc. Once you have got the lactose out of your system (about a month) it seems you can tolerate a small amount of lactose, i can eat ice cream and Dark chocolate so you can have a night out and not be miserable. I lost weight when I started this so it is beneficial in that way. I do not find it any problem now.
Hi, beer is fine, the more the better, I am so hoping this works for people. I do not know how long this site has been going I wish I had found it before. Mind you I have not looked for a long time.
I am lactose intolerant, so do not consume dairy, and it has not made any difference in my RLS. Wish it did, though. Will stick with my pain meds. they are the best thing for my RLS, anyway. No dietary changes have made a bit of difference, but I gave it a good go.I've had RLS since I was 14, now am 56, well, 57 in 2 wks.
I am so sorry to hear this but hope you have a good birthday I met a woman at the weekend whose sister (as a child) screamed with pain in her legs when she was put to bed. once lactose intolerance was diagnosed it went away..
You have had it the same amount of years as me . I started having it at 11 and am now 53 soon 54 . It has never been as bad as it is at the moment .
Thank you magsday for your information, it is really helpful, and never be afraid to put any details on this site as we are willing to give anything a try if it will help us to be pain free and get rid of RLS. I am reading the other replies that you have had, and note your information about consulting a Dr before going on a Lactose Diet. Thank you again. Widgelegs.
Hello Widgeylegs thank you for your comments, The lactose free diet has worked for years for me and I really hope it will help other people. It does take some dedication keeping an eye on the allergy advise on products but you quickly learn what to avoid. The very sad thing about this condition is the lack understanding from some of the Medical Profession, who appear unaware how painful it is. I am concerned, people that try this diet will not supplement their calcium intake. I take it every day. Nice to chat to you. magscave
Hi I to suffer from RLS and as it worsened I decided it may be diet related and started eliminating foods the last being milk and products containing milk. This is very hard to do as there are many processed foods that contain milk. When I did finally start reading labels carefully and watching resturant foods it worked the RSL disappeared and I sleep like a baby through the night with no symptoms. I tested this as well and the RSL returned when I reintroduced dairy each and every time just as you stated.
I replace the dairy with almond milk and I still get my calcium. This may not be the solution fo everyone but it certainly has worked for me.
I looked at this blog because ice cream makes my RLS horrible within the hour. I thought it was sugar. I never dreamed it could be dairy. I'll check this out. Thanks Triggers I know of for me are alcohol, antihistamines, stress, lots of exercise or yard work, SSRI antidepressants, artificial sweeteners and (the saga continues) I avoid all these and still have attacks of pain. Hopefully dairy will be the last one!
Have just joined tonight and have been reading some of the posts. I have found that avoiding lactose has changed my life. I rarely suffer severe pain and have cut down on my medication drastically. I am interested in the post about joint replacements. My RLS started soon after my hip replacement at age 50, and I did not connect it at the time. There is also a genetic connection for me. My father suffered from it as does his sister and two of my brothers. Interestingly another brother does not suffer from RLS but has a severe intolerance to lactose. I say severe because I have found that I can eat small amounts of cheese (which I understand is low in lactose) so I am hoping this will keep up my calcium and prevent osteoporosis. However I used to be able to have the odd bit of milk in tea/coffee if I was out somewhere, but just lately this has triggered off painful episodes, so I shall be taking my own little bottle of milk around with me in future. I am also interested in the posts about sugar and shall see if cutting out sugar will improve things further.
Thank you for this. I've had RLS since I was a kid, but in the past 5 months the symptoms were exacerbated and it was a nightmare. I stopped my vegan diet around the time the RLS kicked in hard. Madopar augmentation was horrific. I was sleeping from 4am to 7:30 and working full time with two small kids. Then today, my new doctor called to tell me that my blood work shows lactose intolerance. I am meant to pick up the dopamine free patch against RLS tomorrow but after searching for "Lactose Intolerance and RLS," I came across this! Thank you. I will give it a go and see what happens. Please God I hope this takes care of it.
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