Needing sleep...

[Goonergirl]

I've suffered with RLS since I was a child, I'm in my 40's now and it has definitely got worse in the last 5 years or so. I have tried every natural aid I have ever heard about, I've rubbed things on my legs, bars of soap at the end of the bed, stretched, run on the spot, walked round my house up and down stairs before bed, you name it, I have done it. Now it's started in my arms-although not as often as my legs, and now I'm struggling to keep it under control, even with medication. I take iron tablets, and gabapentin. I will also take tramadol in the evenings but that's for a different medical reason. The gabapentin I have been taking since December, it worked really well until about 2 weeks ago and now it's all started up again. I feel completely deflated, I hoped this would be the miracle cure that I have wanted to find for the last 30 odd years. So I'm back to trying to work and look after a large family on barely any sleep, it's a miserable way to be. Sadly, 2 of my 4 children also suffer with it, youngest is only 10 and it started when she was about 3-4 years old, she doesn't get it every night thankfully, I hope it stays that way for her. My son suffers during the day as well as night, I know he's having a bad night when I hear him walking around his room at 3 in the morning, it must drive the rest of our household mad hearing us getting up and down all night!

My husband is very understanding, but unless you have actually suffered with it, you can't possibly begin to understand how it is. I can't even explain to people what it feels like...I can't quite hit the nail on the head with the feeling/pain and the lack of control of my jerking limbs! Some people I speak to think it's funny... believe me I am not laughing at 5 in the morning when I have a whole day ahead of me and have had zero sleep.

I would like any other ideas, vitamin suggestions or prescription drug ideas that anyone may have that I may not have already tried. I'm willing to do anything, I just want to be able to sleep.

[Hidden]

Goonergirl your story is a carbon copy of my own. First of all I am so sorry for you that the kids have it. Mine mention sore legs off and on but I don't think its RLS - I am so worried they'd be blighted with this condition . I hope by the time your kids are up a bit that it either settles down or there is a cure/proper treatment.

On the Iron are you taking Gentle Iron on an empty stomach with some say orange juice in the evening? Apparently this is the best way to take it.

I've also got benefit from very hot showers/baths and doing stretched, (really pushed myself with them):

besthealthmag.ca/best-you/s...

&

sportsinjuryclinic.net/spor...

Have you ruled out dietry influences? Be aware that many prescribed drugs can exacerbate the situation too, (SSRI's and anti-histamines are notorious).

Take care.

[Goonergirl in reply to Hidden]

Thanks for taking the time to reply Raffs. I have heard that taking iron in the evening may help, I take mine very early in the morning so it's definitely something I'm going to try. I don't take anti depressants or antihistamines, but your right when you say some medications do make it worse, I actually think that when I take tramadol, then my night can be worse.

I will also look at the links you sent.

Thankyou for you help.

[Hidden in reply to Goonergirl]

Hi GG, I agree with Raffs, iron (gotta be ferrous bisglycinate) seems to only work (for me) when I take it before bed on an empty stomach. If I took it in the morning it would do nothing for my night time RLS.

In addition to the antidepressants and antihistamines there are numerous other medications that can make RLS worse than it has to be such as melatonin, statins, calcium channel blockers, antacids, sugar substitutes, hormone replacement, the pill and metformin.

Good luck!!!!

[Goonergirl in reply to Hidden]

Thanks for your reply, I'm definitely going to try taking the iron at night. I am also on the pill, so I will speak to my GP when I next see him.

Thanks for the advice.

[Hidden in reply to Goonergirl]

Yes, definitely speak to GP. Plus I thought the rule was women in 40s must stop pill? Am I imagining things again?

[Goonergirl in reply to Hidden]

I'm 44 and have only been on the pill just over a year after having coil removed. But still worth talking to GP about. Thanks.

[18jeffries in reply to Goonergirl]

I can't make my mind up as to whether my RLS became worse after having my coil removed or is it just a coincidence?

[Goonergirl in reply to 18jeffries]

I didn't have the hormone coil, so I'm not sure if that would make a difference to rls or not. I think all things should be considered so don't rule it out.

Thanks for your reply.

[Kaarina Administrator in reply to Hidden]

tredlight, I think you are imagining things again. On what are you basing your statement on regarding you thought the rule was women in their 40s must stop taking the pill?

[Hidden in reply to Kaarina]

I would answer that but I think the women here might hunt me down so I wont say it.

Found this might be worth a read:

Eckhart, P. MD. Restless Leg Syndrome No Estrogen Pills: Estrogen Pills May Contribute to Restless Leg Syndrome. Retrieved from restlesslegsyndromecure.com...

PS If you women hadn't tempted Adam in the first place you'd not likely have so many problems

[Hidden in reply to Hidden]

Weak men would be my answer to that.

[Hidden in reply to Hidden]

Makes sense! The pill essentially mimicks pregnancy level hormones and as we know those pregnancy hormones mess with RLS. Thank heavens for the D-Cure.

DELIVERY

[Hidden in reply to Kaarina]

I googled it. It was the rule due to increased incidence of blood clots which equals increased incidence of stroke. That was the pill of old - 10 to 15 years ago. Todays birth control pill has a newer formula with less estrogen so I guess the rules can always change. My sister in law is a Rheumatologist and my age and about 12 years ago told me she was stopping birth control and I should do the same because that was the medical recommendation at that time. Be well. XOX

[Hoffie in reply to Hidden]

thank you for you post... I am new to this forum and did not know some of my other meds might be making my RLS worse. Shame on my doctor for not telling me.

[Hidden in reply to Hoffie]

You're welcome. Your story is a familiar one. Your mild or even completely silent predisposition to RLS ramped up with the start of certain drugs and then got ridiculous when you injured your spine. I predict a full recovery. Switch out whatever medication you're taking for an RLS friendly one (ie instead of Benedryl try Claritin), try to get your spine in as good a shape as possible maybe via a chiropractor and replace the prescription RLS drugs with ferrous bisglycinate (Called Gentle Iron or Ferrochel). I and numerous other people on here take one 25mg capsule of ferrous bisglycinate one hour before bed on an EMPTY stomach. You see RLS could also be called the anemic brain. Your body stores of iron can be great but your RLS brain has no iron reserves. That lack of brain iron is probably what led us all to have a lousy dopamine transport system which scientists have seen on PET scans. Not diseased, just pathetic. A bad transport system means we have very little dopamine traveling down our spines (aka the central nervous system) to our arms and legs. It is that dopamine, a neurotransmitter, that quiets our arms and legs. And to make matters worse, you have an injured spine which is yet another impediment to the transmission of that dopamine. If you think about it, as lousy as our dopamine transport system may be, by day most of us do ok. One theory is that our blood iron levels drop at night and since we have no brain iron reserves our dopamine receptors come to a grinding halt. Iron is like the food or the grease that keeps our receptors humming along. I believe that's why taking a little highly bioavailable iron at night is so effective. BUT if you're taking clinical doses of an antidepressant or say 5mg of melatonin then that one 25mg capsule of bisglycinate won't cut it. You might need two. You might need more than two, but you can't take more than two. Plus if you decide to try the iron you can only try it for two or three nights and if you like it you must get your doctor's permission before continuing on. Some people get relief with that first pill and for some it takes weeks, even months. And for some...nothing ever. Remember, two nights then you call your doctor. Kapish?

[Hidden in reply to Hidden]

And you can't even take one iron tablet if you have hemochromatosis which is a rare blood disorder that causes a constant state of iron overload in your body. Or if you are currently battling cancer or in kidney failure you should not take even a single iron tablet without your doctor's permission. If you have a serious illness you probably shouldn't take any vitamin or herb without your doctor's permission. If you're an essentially healthy person then two nights of one iron tablet shouldn't do you in

[Hoffie in reply to Hidden]

Unfortunately, iron builds up very quickly in my body and my doctor says I cant take it. My spine issues are not going away. Two serious motor vehicle accidents and degenerative disc disease are the cause and I have had these issues for almost 50 years.

[Hoffie]

I feel your pain, I can't remember the last time I had a full night of sleep. I have tried everything like you and found the only thing that works for me is either marijuana or oxycodone. Hate to take either but sometimes I am just desperate.

[Joolsg in reply to Hoffie]

If they work, keep taking them. Desperate times = desperate measures.

jools

[SLMCP]

HI there I am so saddened to hear about your children. It will be my worst nightmare ever if my children (aged 10 and 7) end up with RLS. I would feel so enormously guilty it would be hard for me to cope and deal with it. I wouldn't wish RLS on my worst enemy, it is horrendous and life altering as you know. I am currently on Pramipexole and codeine and have had some good nights sleep over the last few months. The RLS is still with me, I get it at odd times throughout the day, but am so very grateful for the sleep I do get. I do hope and pray that you find something to help you, likewise your children too. God bless you all. xx

[Goonergirl in reply to SLMCP]

I do feel terribly guilty about my children having it, they seem to both take it in their strides at the moment though. I was prescribed pramipexole but the side effects are just too much for me to cope with. Last night I had a good night, and like you I am grateful for the good nights I do have, no matter how rare they may be. Thankyou for your reply, it does mean a lot when people understand.

[Backtobasics95]

The only thing that has absolutely 100% worked for me is cannabis. I was vaporizing regular street stuff for about a week and it was great, but the effects began to wear off. Currently in the process of buying seeds online and learning how to grow my own. It is illegal where I live but I am growing it in the bushes 2km from where I live, so I'm gonna be reaaally careful. Also I have RLS and it pushes you to the fucking edge so I have no choice. Desperate times = desperate measures like the guy before said

[Goonergirl in reply to Backtobasics95]

I have heard that cannabis helps a lot, just not sure if I want to try it yet, but even prescribed meds have side effects-some pretty bad, so not sure cannabis would be any worse! If it helps you, then that's great, just don't get caught in the bushes!!! 😃

[Backtobasics95 in reply to Goonergirl]

Yeah that's what I'm stressing about. All I can think about is me walking up to my plant with no cops around then when I begin harvesting BAM cops everywhere. Seriously tho I recommend trying it just once. I was hesitant to try it but after using it since, I am never seeing my doctor again about prescribed drugs. As to the side effects, from what people are telling me, it really depends on what strain you try. With some experimenting I hope to find 2-3 different strains that work perfectly for me with limited side effects. Don't wanna get too deep but at some point you just gotta say fuck it, I want to live my life normally.