RLS not what it seems

[dogeyed]

dear viewsaskew and trevb,
thank you for helping me. again, I am sorry for the rants. we all know what it's like to have a bad day, my situation is no more or less than anybody else's. Sugar, I hope hearing about my whole-body rls helped and perhaps others will respond you on that issue.

Now, on the topic of diet, ibMoving said "carbs, sugars, etc.," and I was simply wondering about the "etc." plus his SPECIFIC carbs. I appreciate everyone's speculations about diet not having any effect, but I asked ibMoving to come back. Now, in response to his post, some folks told him they are in good shape, so his idea of moving ain't the solution. And he also mentioned the bad effects of "low iron" foods, which I am aware of iron cramps, and suspect that's what helped him. And I understand how diff people respond to diff meds, foods, in diff ways.

My point is: While it APPEARS that diff foods affect diff people, like allergies, we STILL have diabetics, for example, who have to watch what they eat, and I had previously heard rls people who eat like diabetics do better, and since ibMoving says it was food for him, I wanted specifics of what ibMoving's diet was that banished his rls.

One other response: Johns Hopkins is doing its thing, but it bothers me (but does not surprise me) that so many physicians, our front-line soldiers, don't know what this is, and that our government, via the social security administration disability officials, don't recognize it for its disabling features. I was lucky, my family doc pegged it within minutes and treated it with adequate success. But the SSA don't understand how bad rls can get, which is unfortunate for me and some others, so thanks for the book name and author, I'm gonna send it to them.

In closing, kind and patient people, I think I must drop out of all this for now, for I find myself getting upset. I've been out of work, had some time, so thought I'd pop in. While all converse is valuable, I didn't realize I would get so much resistance to a fairly simple question:
ibMoving, what was your diet?

[tiredgene]

Contrary to the original post, I feel that RLS has been the underlying force in my becoming overweight. I have suffered from RLS for as long as I can remember (42 now). As it has gotten worse over the last 10 or 15 years, my weight has gone up. I do not eat as healthy as I should, but do not overeat until the dreaded daily occurence of bedtime. This is when I end up, usually a few times a night, eating the least nutritious foods at the worst time to do so...at rest. And it is all done not to satisfy a craving but in hopes of "eating" myself to sleep. Couple this pattern with RLS-induced daily fatigue, and you can see the downward spiral. So in contrast, and as I tell my doctor, I think my weight gain is mostly due to RLS.

Off the subject, this is my first post in a RLS forum. I have been lurking here and on others and I'm glad to see I'm not alone. I have been suffering from this disease for a long time, and it's very hard to deal with when there are so few others who understand or even listen. The effects of RLS on my life are becoming noticably profound as this disease has worsened. People are shocked when they find that my wife and I can not sleep together due to my "wootchiness". I can not go to the movies with the rest of my family (we have two young children), I either spend the whole time thrashing or sleeping. Mid-afternoon fatigue sometimes reaches a point near dimentia, my half-hour ride home from work is sometimes very frightening. If the fatigue doesn't hit, then I get severe daytime symptoms in my legs, arms, or both, to the point that concentrating on work is extremely difficult. I took Sinimet for a couple years with mild relief, then nothing...in fact it started making it worse. Now I'm trying Requip and while I get sporadic relief, it seems to be making me more fatigued in general and now I suddenly have these daily severe lower back pains when standing or walking. As for the RLS symptoms, while there is occasional relief with the Requip, the episodes that do occur are much more severe. I'm afraid to take any of the opiates because it seems that the dosages required for relief would effectively disable me, which I can not afford, though daily life with RLS is becoming more and more of a struggle.

I'm sure most of you have heard or suffered through these things before, but thanks for having a place to talk about it.

[dogeyed]

Dear Tired Gene,
I found your mention of lower back pain familiar. I read where Johns Hopkins did a study last spring on the spinal cord's relationship with RLS. I do not know what the result is. But it's another commonality that should be put in any survey. Opiates will at least let you sleep for once. Don't even have to take them all the time... they have a residual effect for me. Yes, posting here can help. And thanks mods for advice on systematically eliminating foods from diet, I'm doing it. But I really need to go now.

[Anonymous]

Hello all.. I'm new to the website, but not, of coarse, to RLS.. I was born with it as was my late brother, Tony.. I can remember as a little girl sleeping with my Grandmother and her yelling at me to lie still and stop moving my feet around.. Poor Grandma, if only she knew what we know now about RLS.. There IS no lying still or stopping your legs from moving around, at least, not without the help of drugs.. This weekend I lacked the funds (due to an old and somewhat worn break system on my car) to refill my Mirapex prescription.. Wow, oh wow!! I've been on them for so many years that I had totally forgotten how vicious this miserable disease is!! 24 hours after my last pill RLS came back with a vengence!! I couldn't believe it had been this bad in the past, but I guess it was just something I put out of mine.. Even now, as I sit and type this my upper arms and the bottom of my feet are twitching like mad.. I feel like I have the screaming heebie-jeebies!! This must be what 'possession' feels like.. Anyway, on to my question.. During the last five years (especially since I've been on the Mirapex) I've noticed that my lower back (around the L5 vertibrae) is getting more and more painful and I can't help but wonder if it has something to do with the RLS or, perhaps, even the Mirapex.. I've had a MRI done, but the doctor said he couldn't find anything but some mild disk bulging and mild Arthritis.. And yet, each day the pain seems to get a little worse.. Has anyone out there come to associate back pain with RLS?? Thanks so much for any help you can provide.. Susie

[becat]

Hi SusieQ and Welcome,
I'm sorry to hear about the car, just replace a tranmission last week.
I'm even more sorry to hear about the Mirapex. I'm not sure this will help and someone correct me if I am wrong......but i think there is a generic to Mirapex. Pramipexole Dihydrochloride
Now I've never used it, nor do I know if it works the same as Mirapex, but it could be a cheaper form.
As to your back problems........I have always had back problems without any major injury, other than falling, as we will in life somedays. I know that one leg is shorter and they may be part of mine.
I can tell you that many of us have back problems and RLS is a whole body issue for many. I have pain with mine RLS all the time and on bad days or overly active days my lower back and hips seem to feel the strain more so than normal.
Is this worse since you ran out of Mirapex?
I hope you can get your meds soon and well on the way to feeling better.
Nice to have you here.

[Kris]

That's interesting. I have bone spurs, I know, L1-L4, and mild degenerative disk disease and scholiosis. All I've had is an x-ray but my lower back gives me trouble. That is the hip that I have RLS in too.

[Walking After Midnight]

I realized lots of carbs, sugars, etc with little or no exercise causes my legs to feel like I needed to twitch and move around after lying down at night. So what do I do? Stop eating crappy foods, get off my bottom, and move!

See...lots of carbs....Me
Sugars...me
Little or no exercise....me
eating crappy foods...me

You guys messed me up.
I thought she WAS ON TO SOMETHING!

hee hee.

[AriaDragonfly]

I excersise quite regularly(actually lived on a farm for a year and a half lots of movement there, hard work) am not overweight at all, and I eat quite well( vegetable soup or salad anyone?) While it is true I have lower levels of Iron being a vegetarian it is not severe because I take suplements. Yet I still have a severe case of Rls....so I dont know if it is "crapola".