Hi there! I'm lookin for some suggestions

[deemarie1975]

Hello. I'm new to this site, but not new to RLS. I've had it since I was in high school and didn't even know that's what was wrong with me. It is so bad right now that it wakes me up about an hour after I am able to fall asleep. My arms even get the creepy crawlies now. I know my pattern and there doesn't seem to be anything I can do to fall asleep. If I can't fall asleep within an hour, it's too late and I'll be up til 3/4am. I think the stress of laying there not being able to sleep contributes.

My doctor seems to think that loosing weight will help, and I do too, but I need relief NOW!

I've read some of the research pertaining to Iron and Potassium and have tried to eat more foods rich in Iron but haven't seen the results I would like to see. I might try a daily supplement to be more consistant.

I like the info that I've read here about aspertame. I have to admit that since I've been dieting, there is more of it on my diet. I don't drink soda, never really have, but I do drink alot of Crystal Light. I won't be anymore.

I've tried cutting out my morning coffee and all that did was make me even more tired during the day.

I don't like the idea of taking a drug that is used to treat Parkinsons. That's a little scary to me. Have they even done any research to find out what the long term side effects of those drugs. I don't think they've been around long enough for anyone to really know.

Now I'm gonna go to the non-pharm forum and see what more of you have to say

[ctravel12]

I deemarie I did post you on the non-pharm forum,. Have you had your ferritin level checked. If not talk to your dr about getting some b/w done as I know if it is too low or high that can be a problem.

Please keep us posted.

[deemarie1975]

Thanks for the suggestions. I do not have health insurance right now, but will soon and the first thing I'm going to do is have a physical. I did have one about a year ago and my doctor knew about my RLS at the time. There was not anything abnormal showing on my blood work then. Do you know if that is something that is checked on a normal blood panel work-up or do you need to ask for those specifically?

[SquirmingSusan]

Hello Dionne and welcome to the forum.

As far as I know, RLS has nothing to do with weight. It's a neurological disorder that has to do with dopamine in the brain. Having had weight problems all my life, it ticks me off when the doctors blame everything on weight. Yes, you will feel better overall if you lose weight, but your RLS likely won't go away.

In the sticky post at the top of this section is a link to the Mayo Clinic Algorithm for the Treatment of RLS. There is a lot of good information in there and you can print it and take a copy to your doctor. There are lots of options for treatment of RLS.

Yes, the Parkinson's drugs are scary, but they can work very well for a lot of people. The key is to stay at the lowest possible dose that relieves symptoms and not increase the dose just because the starter pack has higher doses or the doctor wants to increase the dose. They are expensive, though.

If you have RLS less than 4 times a week, there is Sinemet, which is an older medication that works very well and should be less expensive. But it sounds like you have it every night.

If you do need daily medication, there are the "benzos" (Valium, Klonopin) and the pain meds (Codeine, Vicodin, Oxycodone, methadone, etc.) which are inexpensive but sometimes hard to get a doctor to prescribe.

Please learn all that you can so you can educate your doctor about the disorder and get some serious treatment.

[ctravel12]

Hi Deemarie. You have to ask for the b/w for the ferritin level. As far as I know it is not the normal b/w routine that they do.

[KBear]

You could start with a multi vitamin with iron but I wouldn't recommend adding a separate iron supplement unless you know that your iron and/or ferritin levels are low. I think an iron count is commonly included in a CBC but not ferritin which indicates your stores of iron. The ferritin level is a key indicator for some of us with RLS. Depending on who you talk to ferritin levels should be at least 50 and perhaps as high as 150 to treat RLS.

The algorithm (attached in my signature line below) is a great place to start. Eliminate any potential diet and drug triggers, and take steps to improve your overall health. I've had RLS whether I was fat or thin doesn't seem to matter but a healthy diet, and regular exercise certainly can't hurt, just don't overdo the exercise.

Your RLS sounds like mine, if I don't fall asleep within an hour I can count on it coming on strong. Sometimes even when I do fall asleep it wakes me up an hour later and prevents me form sleeping until after 3:00 AM. I have had much success with diet, exercise and an occasional sleeping pill when I find myself getting sleep deprived. The real trick is finding what will work for you.

Good luck and keep asking questions.

[Polar Bear]

I found the algorithm to be a saviour in that my doc paid attention to it! I am one of those who has rls 24/7, I could not function now without my meds, tho I had tried for many years. I tried supplements and non pharm tricks but the best relief I have had is requip with codeine 15mg as required. And I still have breakthrough. It is always there. Fortunately here in UK we have the National Health Service, and pay only a nominal sum for medications.

I found soaking my feet and calves in icy cold water for about 15 minutes to be one of the best ways of getting relief for long enough to get to sleep.

Good luck, Betty

[tazzer]

hey deemarie what ever you do don't take tylenol pm....the antihistime in it tends to make RLS worse.

it's hard when you don't have health ins. and also a doc that is hesitant in prescribing sleep aids or pain meds.

having your iron level checked is good, hot baths help some people, i bought one of those hand held massagers that has a heat setting on it and it really helps when i put it on the soles of my feet.

i wish you luck and sleep

tazz/dee

[jumpy]

Tazz...what's with the soles of the feet? I, too, find that rubbing with some kind of lotion helps. Sometimes in the middle of the night, I'll be sitting on the side of the bed rubbing. Got the softest feet in town...Pat

[cmoore1958]

I lost about 25 lbs. about 6 months ago. My rls is worse over the last few months that it has ever been. So, although losing weight is a plus for general health, I don't believe it has anything at all to do with making rls calm down.

Cyndi

[mesolo]

I know this might or might not work for you but I'm going to tell you anyways. Background, for as long as I can remember I had (now in the past tense) RLS. ON a scale of 1 - 10 mine was a 10! I finally got so tired of it I Googled the causes and found one of the reasons was an Iron deficiency. To be honest with you I didn't know how much Iron I was getting in my food but thought that was a good place to start. By the way, I don't have health insurance either, which in this case was a good thing because that forces you to eat better, for one thing instead of relying on pills which don't cure you but cause you to become dependent. Then I Googled foods rich in Iron and happened upon Total and Cream of Wheat. I don't like Total but love Cream of Wheat, so I though that would be a good start. I was also skeptical thinking that something as simple as taking more Iron in my diet would cure me. BTW, I would say my pain on a scale of 1-10 was a 10!!!
I took the Cream of Wheat and instantly felt a difference. Not trusting my first instincts I took it regulary for the next couple of weeks and now just take it at least once a day. Wollah!!! It worked, not only is my RLS cured but I didn't have to take any medication to cure it. I really believe the cure is in the cupboard. If you need more information please feel free to contact me.

[cmoore1958]

Hi Mesolo,

I'm new to the board by about a month, but an old-timer when it comes to rls. While I appreciate your post about what is working for you, I also realize that you are one of us and may need more help and support in the future. I seriously hope you don't, but I've know several people over the years who were "cured" of rls only to have it return months or years down the road. And, when it came back it was a lot worse than before. Please know that if your rls returns, we will support you, care for you, cry with you, yell, scream, vent, throw darts or whatever with you.

I am not iron deficient. I also eat a lot of iron-rich foods and healthy as possible since I am diabetic also. This does not matter where my rls is concerned. Actually, my rls is worse since I've become diabetic. However, I agree with you that eating right is a very positive thing towards good general health.

Then there are the "syndromes", "diseases", "abnormalities", etc. that are caused by different things. Chemical balances and the release or storing of certain hormones greatly affects our internal organs as well as our nervous systems. Everyone is different, as is their geneology which plays a significant role in our health - good or bad. Wheter we are on prescription meds, herbal remedies, vitamins, minerals, healty-wise diet, or any other regimine, we are putting a preverbial band aid on the disorder. All treatments help us to cope and live our lives the best we can physically. But we kid ourselves if we say we are "cured" and no longer have a disorder or health issue just because a treatment is working.

I'm sorry if it appears I am preaching (my dad was a preacher )because I am not. I'm genuinely concerned that you have lost your perspective on the big picture and all the intricate parts. I pray your rls stays away for the rest of your days and it may. Just remember it's staying away now because of many different circumstances, one of which is your diet. But like any treatment a person's body can become accustomed to the treatment and breakthrough.

Okay, my soap box is official off! I don't know you personally, but you are family if you have been or are now a part of the rls group of amazing individuals! Take care of yourself and please keep us posted on how you are doing and what is working for you -- it just may work for someone else for a while too.

Hugs,
Cyndi

[mesolo]

cmoore1958, you don't have to worry about me (I'm also diabetic) because I've already taken care of my problem just by being proactive. Sometimes that's all it takes. BTW, if mine comes back you'll be the first to know, but don't be too disappointed if it doesn't.

Oh, while we're on the subject of health, I use to have an irregular heartbeat too, but because I was proactive it was cured.

As I recall, you said you wanted to get help NOW and you also said you're trying to eat more foods rich in Iron.

How many mg. of Iron are you taking per day? Do you even know what the requirement is, because I didn't before I started taking it? You may not be seeing any results because you may not be taking enough IRON. ???

This is just something to think about.

[cmoore1958]

Mesolo,

I think you misunderstood my reasons for what I said. I will NOT be disappointed if your rls doesn't return -- I will be elated! I just saw a friend devastated about a years ago when hers returned after about 3 years of absense. I guess I wasn't too clear, sorry I didn't express myself well.

I can't take iron supplements because they make me really sick. I do have my ferritin levels tested and they are very good. My iron is good. I just eat a lot of iron rich foods to keep it that way.

I take a proacive approach as well and feel that is the only way to go. All of us react diffrently to any type of "treatment" for our problems because of our individuality in our bodies. I think it is great that you are able to control your rls. My rls is made worse by my fibromyalgia. The 2 disorders seem to feed off of each other. Sometimes I can't tell which one is causing my discomfort.

I'm lucky that I don't take any of the hard pain killers to control my rls. I pray I never do, but I also do what I can to take care of myself so it doesn't get worse. I do have breakthroughs and bad days . . . but I also have good days.

You are fortunate to have your rls controlled. It would be great if your approach worked for me, it just doesn't. I do commend you on your determination and attitude. And I wish you all the best for today and the rest of your life. Sometimes I care too much about people that my emotions get in the way of my words and I don't express myself in a very undersandable way.

Take care of yourself (as I know you will). Stay strong and well.

Cyndi

[deemarie1975]

mesolo..... You asking cmmore1958 if they knew what the recommended daily Iron intake is. I don't know what it is, but I would like to know.... Could you tell me, please?

cmoore1958....... I wanted to try taking a multi-vitamin with Iron and they seem to be making me ill too. What kinds of foods have you been eating to increase your Iron?

Thanks to both of you!