I hate my legs they hurt all the time - Restless Legs Syn...

Restless Legs Syndrome

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I hate my legs they hurt all the time

NancyAshworth profile image
5 Replies

I have restless legs for more than I want to recall. Besides that I have lymphedema and am experiencing a bout now going on 2 weeks. My ankles swell up, sting, look like I don't have an ankle bone, painful to walk and feels like I am walking on balloons. The pain is hard to describe since it seems like people don't believe you. My husband thinks that the medical community are not helping me. I will finish later as I am having a hard time thinking.

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NancyAshworth profile image
NancyAshworth
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Graham3196 profile image
Graham3196

I suggest you search this forum for FODMAP diet and ask your doctor if he thinks its safe for you to try it. He should be familiar with it for patients with IBS but probably doesn't know that it helps some RLS sufferers. Assure him that it helps many people with RLS and its simple with no medicines. I have no idea what effect it might have on your lymphedema but get some expert advice. Is your doctor helpful?

NancyAshworth profile image
NancyAshworth in reply toGraham3196

I now have another doctor as my other doctors keep leaving the area. I have been to the Mayo Clinic in Scottsdale, Arizona. I had a GP and suggested that I go to an Internal doctor so I did. Now I am seeing an NP and my first visit she took the time to listen, ask and answer my questions. I live in an area which is sort of remote from all the big hospitals. A lot of my friends go to Durango, Colorado and then the other place is Albuquerque which is a 3 hour drive. All this and medications add up to where I no longer could afford but I do have insurance. Every time my legs get inflamed and swollen doctors send me to get an ultrasound done to check if I have a blood clot. Which it never shows up just cellulitis. They all say elevate your legs and stay off of my feet. Well, is easier said than done when your family need something. I will search for the FODMAP diet another friend suggested the Paleo diet for autoimmune conditions. I need to get going maybe talk more later.

Graham3196 profile image
Graham3196 in reply toNancyAshworth

Hi I am not expert of the theory of these diets. I haven't seen any suggestion that RLS is an autoimmune condition. The fact that some people are better when on an elimination diet seems to be regarded as strong evidence that they are allergic to, or intolerant of certain substances found in the foods they have been eating. So this suggests that RLS is caused or triggered by these certain substances. With this in mind the idea is that you go on the exclusion diet and you find you have no symptoms you can then test which substances are causing problems by eating foods that contain those substances and watching to see how your body reacts. Its usually a combination of what you eat and how much. For example I have found that I can drink a cup of milk but not a cup and a half. Perhaps if I continued on drinking a cup a day I would accumulate whatever causes the problem and have symptoms again. I might be able to tolerate a half cup a day for ever. Then you try another food to see what effect it has. Gradually you build a list of foods you can eat and how much of each you can eat, This then leads on to your very own personalised diet.

I don't know if the Paleo diet is structured this way. If you particularly like the Paleo diet then perhaps you could try it for 12 weeks and see if it helps your RLS. If not just move on to the FODMAP diet and try that. I suggest you find a dietician to help you because they will help to do the job systematically and you might get a quicker answer. . Of course your doctor needs to confirm that your other conditions wont be worsened by the diet.

I hope you are one of the lucky ones who are helped by a change of diet.

Cheers

Graham

NancyAshworth profile image
NancyAshworth in reply toGraham3196

Thanks Graham I really haven't tried any diets as of yet. It makes it hard when my husband doesn't really like some of the foods that would be served up on these diets. That would have me making 2 different meals. A lot of times I don't even eat as I am not hungry. I will look at the FODMAP and see if it is something I could try. I was trying CBD oil soft gels and liquid drops (hemp oil) that I got through the mail system. Talked it over with my doctor and I first need to consider getting a card if I go that route as I work in the health field. Said that when a drug test was done it probably would be positive. So, I am looking at so many options that I get burned out. I must go and get to work.

Graham3196 profile image
Graham3196 in reply toNancyAshworth

Yes its a drag being the one with the strange diet. I do the cooking in our household so I get to see and smell the real food while I prepare my rice and tinned salmon. Actually I have established that tuna doesn't affect me and I think its tastier than salmon so I try to get excited about tuna and rice. Rice cakes can be good if you have some aged cheese and peanut butter on them. Or rice cake with a fried egg sitting on it. Don't forget a nice piece of porterhouse once in a while. I usually have a banana for breakfast. I always have decaf tea or coffee. I was advised that tea is acceptable but decaf coffee is a bit better than tea so I alternate them. Just keep reminding yourself how good it will feel if it works. The exclusion diet does not last for ever so you only have to exclude every thing for a few weeks.

Incidentally have you read in this forum that someone found that a dose of Vitamin B12 plus a dose of folate every morning worked for them, Search this forum or B12. I have tried it and I think it helps me but its hard to tell while the diet is working. I only have one guinea pig!

You might find some anomalies. I found an excellent brand of FODMAP Friendly bread but after a while I determined that it was triggering my RLS so it had to go on the banned list.

Good Luck

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