suggestions please

For everything and anything else not covered in the other WED/RLS sections.
moonlight
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suggestions please

Postby moonlight » Thu Feb 21, 2008 3:39 pm

Hi :(

Suggestions please ,I am still taking iron ,will be getting it checked on monday, for a good number of weeks the rls has been at bay.

But now am getting rls during the day and in the evening quite bad and am getting woken up every morning around 4.00am with my legs giving me jip, sometimes after a walk I can go back to bed and sleep other times no way.

I am now begining to dread going to bed as I am just waiting for it to start, result through the day I am exhausted but don't want to sleep.I doesn't seem to matter if I am exausted the rls still starts.

huggles
moonlight :(
sleep is not only a dream

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Neco
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Postby Neco » Thu Feb 21, 2008 4:00 pm

Hang in there, just lay it into the doc real hard and make sure they know it is getting WORSE. :(

Were you ever able to try epsom salts?

Sojourner
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Postby Sojourner » Thu Feb 21, 2008 6:04 pm

M, Agree with the Z that make sure the doc is aware of how things are going or not going. Also, while I do not want to diminish the pain and unpleasantness you are feeling it may perhaps be part of how this disease comes and goes. Keep that positive attitude that it will turn around but in the meantime, again, do all you can to make sure your provider knows things are not going well.

Truly am sorry for the bad times. Hoping tomorrow will be better.

M.
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waterloo2
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Postby waterloo2 » Thu Feb 21, 2008 6:17 pm

Hi Moonlight

Now just how ya feeling girl i had a really bad night last night with rls/arthiritis too argh im feeling rough today didnt get dressed
until this afternoon.

Up for a chat later on.

waterloo2 :roll:

mackjergens
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Postby mackjergens » Thu Feb 21, 2008 6:58 pm

Moonlight,
You might wish to think back these last few days and see if maybe you can discover something you ate that was different, or have you taken an OTC med for a cold or etc. You might be able to figure out what triggered this last RLS attack. Sometimes (not always) its something we have eaten or taken that makes it raise its ugly head again.

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Postby ViewsAskew » Thu Feb 21, 2008 7:22 pm

Good point, Mack.

Can't remember what you are taking for the RLS, either, Moonlight...hope it's not problems with the drugs themselves....but it is a possibility to have your doc look into.
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Aiken
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Postby Aiken » Thu Feb 21, 2008 11:25 pm

Could be the weather as well. I don't know if I've seen other people say so, but just as summer makes RLS worse, certain weather changes seem to make it worse for me as well, kinda like people say their bones ache when the barometric pressure changes. In fact, that may be it, because barometric pressure changes actually do make my hips ache for some reason, and that in turn always makes my RLS worse.

Or I might just be imagining that it's to do with the weather and it's really because I had too much caffeine or something. This is why people do proper experiments! :)
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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Neco
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Postby Neco » Fri Feb 22, 2008 12:10 am

Unfortunately she is only on Iron, she doesn't take anything else.

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Aiken
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Postby Aiken » Fri Feb 22, 2008 1:38 am

If your iron levels are low, you could try taking it with vitamin C, which improves absorption and is good for you anyway. You could also try IV iron infusions.

Isn't calcium recommended as well? You just have to make sure you don't take them together, as one of them inhibits the absorption of the other. I simply take calcium on the days when I don't take iron.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

becat
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Postby becat » Fri Feb 22, 2008 3:49 am

Hi to all,

Great ideas already, gotta love that.

I think everyone gave you great advice, I'd add that I would call the doctor....I know that you are not in the same healthcare system we use here, but a call can't hurt.

Moonlight, it can very helpful for you and your doc to track your symptoms for at least a month or 2. Create your own rating level of comfort or discomfort and be sure to record the time and the day. The first month I would record the time you first notice a problem and the discomfort level.

Many people talk about keeping a sleep diary, in your case, I would keep a self diary.

Meaning: what you eat, drink, take by way of medications and supplements ( with both of these write down how much you take and the time),
sleep: what time you go to bed. How long it takes before you fall asleep. How many times you wake up and the length of time you stay awake. Record naps (daytime) as well.

You might want to list stress levels as well. Remember that sometimes even great exciting things are seen by the body as stress. I got reminded of that last night at a hockey game. Had a great time, enjoyed it throughly, but with all the excitement (hey it's was front row seats and right next to the glass, that's exciting)....anyway, my legs thought it was a bit much. LOL

This is something you could drop at the doc's office and maybe avoid a wait for an appt. and might be able to speed things up with a phone visit.

Aiken, I react to weather, always have. This year I have not gotten my cold winter break, heat and humity (weather wise) hurt my legs. I may not be able to trust the weatherman, I can trust my legs. LOL

About the Iron, yes Vitamin C is helpful and a couple more than what I will list, as many of the others would need to be checked like iron does, with blood work several times a yr.

Manganese, Vitmain C, and A good organic or vegtable based B-complex.

Calicum is great for the muscles, helps them relax. But no not mix magnesium and calcium together. Calicum cancels out the magnesium, so take at seperate meals....or apart at different times of the day. I use the meals thing, because I'm lazy and thats the easy way to remember. LOL

Hope helps happens soon,
Lynne

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ctravel12
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Postby ctravel12 » Fri Feb 22, 2008 9:31 pm

Hi Moonlight and so sorry for what you are going through. I cannot add anymore as what the other members said was great support. Please do get ahold of your dr and let him know what is happening and please keep us posted on what he says and has done for you.
Charlene
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dogeyed
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Postby dogeyed » Sat Feb 23, 2008 10:14 am

Moonlight,
Low iron is just one of many ideas about RLS and treatment. Also, RLS can be aggravated by a lot of stuff, too. For example, if you did a lot of walking or running around the day you had your attack, it's because heavy use of leg muscles will set off RLS. Also, as someone else said here, OTC sleep aides or stuff with benadryl in it, will cause RLS to flair up. Then there is indeed the weather. My legs have been absolutely killing me all thru January and February, the cold weather gets into my legs somehow and makes them hurt.

So, natural solutions until you visit your doc... support stockings on the legs will help you fall alseep, heating pads on the legs sometimes works, you can also buy melatonin from the health food store and it will give you some rest, stretching the calf muscles helps get the wheebie jeebies outta your legs long enough to sleep, and a hot soak is always helpful.

There are medications that work pretty good, too, I hope your doctor will try some out on you, until maybe you find something you like. One thing that works for a large percentage of people are the opiate drugs, but takes some willpower to successfully use them, as the buzz is hard to resist. I am heavily sedated for a number of health issues, several types of drugs, and still I sometimes just hate my legs.
GG

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Postby Polar Bear » Sat Feb 23, 2008 5:16 pm

Yes, sometimes for no seeming reason the old legs just go daft. I have been doing reasonably well, then last night... wow.... all over the place, for about 4 hours nothing would help. We have been watching '24', now on our 4th series... and last night cos I couldn't settle, we watched 4 episodes... there's me walking around the bedroom, and hubby suffering with a cold till 3am. I say hubby suffering !!!! :roll: last week I had this same cold and just got on with it, of course he reckons he has flu...All I hear is aaah my shoulders hurt, my bones hurt... he admits men are obviously poor patients.

Anyway, eventually when the walking around the bedroom for a couple of hours didn't work, I took an extra codeine and that helped.

However, this '24' is obviously having an effect, I dreamed hubby and I were kidnapped. Jack Bauer has a lot to answer for. :lol:

Sorry Moonlight, didn't mean to hijack your thread. Just to let you know that 'you'll never walk alone' - there is always another of us looking at the same moon.
I hope this is just a hiccup for you.

Betty
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moonlight
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Postby moonlight » Sun Feb 24, 2008 10:34 pm

wow thanks for all your support guys

I have taken a lot from it, I am looking at what I eat and drink,I will add it into my diary I already keep for mood and when I have rls....have found alchohol has no ill effect on my rls.

I counted up and have had it 16 times in the last month...and that's with being on iron...mind you before that it was every time i sat down every day,so there is an improvement.

I don't take OTC med for colds as i can't with the propranolol all i'm allowed is paracetomol and that don't help rls.

I'm not sure bout the stress ,been really bad with stress over last few days ,todays the worst unable to calm and constant shaking ..so it will be interesting to see if i have rls tonight..at the moment my legs ache and have funny feelings.

Didn't know bout the calcium etc ,vitamin c ,i have run out of but i was taking it with the iron.

I haven't noticed any diff with the weather and weve been getting it very cold , rainy and mild .

Got dr appt tomorrow and am going to discuss it again and see what she comes up with, she will also check iron levels again.

It gets you down always living with are you going to get to sleep, stay asleep, get up at some unearthly hour when everyone else is asleep, be in
pain or be down right uncomfortable every night.But that is life for us I'm only glad i found the site and have youre support.

huggles
moonlight x
sleep is not only a dream

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Aiken
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Postby Aiken » Mon Feb 25, 2008 3:12 am

moonlight--

I forget if you've said, so I'll just ask. Do you take any form of reflux/heartburn meds? They can severely cut into your ability to absorb iron, if you take enough.

I take protonix, which is a proton pump inhibitor similar in strength to prilosec, once a day. When I was having chest discomfort last year, my gastroenterologist had me switch to 2 nexium a day. Since nexium is at least twice as strong as prilosec, I was getting 4x my previous dose, and my iron levels plummeted despite supplementation. That's when I tried the IV infusion instead.

Now I'm back to my original PPI dose and I'm doing okay on the oral supplement.

Anything that reduces the levels of acid in your stomach--PPIs, H2 blockers (pepcid, xantac, tagamet), antacids, and even calcium supplements taken too close to the iron supplement--can all inhibit your absorption of iron.

Might not be a factor, but it's something to be aware of.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.


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