Hi anyone else found the on set of me... - Restless Legs Syn...
Hi anyone else found the on set of menopause has made RLS worse?? As I have in the last year or so.
Yes totally. ~I have found at all hormonal times in my life the RLS got severe. I first got RLS when i was about 12. In hindsight i have come to the conclusion that puberty brought it on. It was severe. Then on all my pregnancies (5 in all) i was tortured with it and didn't sleep at all while pregnant. It totally disappeared when my children were born. And now i am aged 50 and going through utter hell again. So yes i am convinced that menopause has made my RlS worse. Would love to know what i can do about it though.
I've been put on Pramipexole Teva 0.125 was told by doctor to 1 at night and to increase the dose to 4 each night, well was so out of it! after taking 2 the second night I stopped any for 2 days just so I could get on with life, BUT it did give relief from RSL, so I took 1/2 and I,v built the tabs up to 2 a night getting some side affects, finding I'm getting very emotional which is just not ME!! also sleeplessness. Hope you find something soon. just been through months of hell. take care 
I take Pramipexole, and it has taken me nearly a year to just get to taking 3 of the .125 pills. But i am sensitive to meds and i cant handle the side effects, so i have increased really really slowly. I still sometimes get dizzy and sleepy the next day, but not emotional, and only sleeplessness if the dose isnt working.
hi Elisse I've taken 2 weeks to build up to 2 at night it is relieving RLS still have symptoms through the day, but I can cope with that. will try taking 1 1/2 again, it's been so long since I've slept more then 4 hours (and that was on a good night) it's going to take time to get into getting a good sleep patten (positive thinking)! thank you
Hi maesllan5, i also get symptoms during the day, sometimes. But i can cope with them. I also have breakthrough RLS in the night. maybe twice or on a bad night three times, and i am up and making tea, then back to bed again. So, never get a full night's sleep, but better than no sleep at all. Good luck with the 1 1/2 pill.
Haideejane, I find the hormone connection odd.
During pregnancy, RLS can be very severe, as a result of increasing hormones (and decreasing iron stores).
Then, at menopause, it worsens for those not on HRT, but not for those on HRT.
Huh?
So it's worse when you have buckets of hormones, and worse when you don't have hormones.
I have to assume that what you need is a healthy happy medium.
Hello Haidee Jane, Welcome to the forum! I don't believe that we've met before. I am
sorry that it's rough for you again with RLS..Are you taking any medicines for RLS?
What medicines did you try so far?
maesllan5- hmm...I have heard others say that as we age, RLS gets worse.
Maybe you are correct that hormonal changes make it worse. =}
Hello Yikes, Thank you. I am taking Mirapexin, it works well enough but some nights are rough. I find the only thing that really helps is Benzodiazapines, but i was addicted to these and sleeping pills and sedatives and antidepressants for years. 17 in all. Had to get off all this stuff as i felt i was slowly dying. Anyway when i came off them my RLS returned so violently that i have barely had a full nights sleep in 3 years. I also suffer from Irritable Bladder but only at night. I feel the two are somehow connected. I've only recently decided to take toe Mirapexin as i am so anti drugs now cos of my experiences with meds and Drs. I do not trust the pharmaceutical companies or Drs in general. I find none of the natural remedies do anything, nor exercise or being tired. Like i say, sleeping pills, Benzos and Mirapexin. I expect the Mirapexin in time will need to be increased. I hope it doesn't happen for a long time. I get RLS whenever i relax, day or night. Its a lonely place as i'm sure all RLS sufferers know as few people seem to have heard of it and think it must be your imagination. Ah well we just have to keep going i suppose.
YES!!! Definitely so much worse since menopause and my first experience of RLS was during both my pregnancies - I remember walking around the garden in the middle of the night, thinking I was going crazy! Must be the hormones.
Good news is, my doc has started me on iron tablets because apparently I'm anaemic and this can cause RLS he says - and I think it's working! Could a coincidence as I find it comes and goes sometimes anyway, but still ... would be great if something so simple actually worked. Doc is reluctant to try me on any of the other meds because of stuff I already have to take for hypertension. Interestingly, the anaemia theory ties up with the pregnancy thing, because I was seriously anaemic then as well. Possibly young girls starting their periods coudl be as well - maybe it's got something to do with iron deficiency as well as hormones? Isn't RLS more prevalent generally with women as well? I thought I read that somewhere. I've noticed in my job as a clinical coder (basically involves reading people's medical notes when they come into hospital and translating their diagnoses and procedures into a code form, so you see a lot of case notes) - that patients undergoing treatment for cancers sometimes have restless legs. I wonder if this might be due to anaemia as well? Hmmmm, food for thought ....
It's been proven that iron deficiency and storage of iron is the main reason that we experience those bad symptoms.. apparently the brain is starving for iron but for some reason, it's not getting enough to the brain..Ferritin levels need to be 50-70 (hopefully close to 70) and then you will be on the correct road. You are doing what you need to do..Add some vitamin C to the iron and you will absorb it much easier.. an orange or kiwi, something citrus so the acid helps better absorb the iron...no antacids for at least 2 hours before and after taking iron. =) Good luck =)))
Hey thanks Yikes, I've been taking a vitamin c tablet at the same time as the iron, on the doc's advice, but didn't realise the acid helped as well. I feel really hopeful that this might sort me out - or at least keep it at bearable levels ... even my husband is sleeping better, with me not throwing my legs around all night!
Hi Annie. I totally agree with Yikes. Iron pills are so very tricky to take. Supposedly if you take with food or milk you will hardly absorb any iron at all. If you take the kind from the drug store you might as well be taking a sugar pill unless maybe Yikes is right and vitamin C will do the trick. I took iron for a long time (many years) for RLS, however I was not anemic. I read that if you take iron (the bioavailable kind like iron gluconate) AT NIGHT right before bed, on an EMPTY STOMACH, it will stop the RLS in its tracks. It worked each and every night. Then I decided to stop taking it automatically and see what was happening with my body. I didn't just have restless leg, I had restless body. Most bizarre feeling. Sleep was absolutely impossible under those conditions. I would gut it out for about an hour or two and then I would run for the iron. After about 40 minutes I could feel my body relax like someone had pumped it full of the best relaxant in the world. I recently read that everyone's iron levels fall at night. But it doesn't affect the rest of the world the way it does us. Good luck and may the iron stay with you - bad pun 
Yes, i can say mine has worsened with age, but if that's linked to hormonal change's i couldnt say for sure
hello there,
I absolutely agree with the others that my rls got worse with pregnancies and the menapause.
Definitely got worse since menopause! all the literature states that RLS rapidly worsens after 65.
Cant say mine got worse with the menapause, but did with age, after 60 for me. Didnt have any RLS with pregnancy even tho my RLS is inherited.
Mine got worse with age, but definately not due to the menopause, and the last 10 year's have been the worse, it's rapidly increased, but im not in my 60's or going through the menopause as yet, so no not for me it isnt
Hey there Sunshine=) Been thinking about you.. How's it going?
I was thinking that you had your hands full so you didn't get on here
much anymore. =)) It's hard to track down the solution to solving
the RLS symptoms..Lucky for all of us when that perfect night of
sleep..for several hours in a row.. I am still in limbo..2 more weeks
or so..shooting for Dec (first week) to get all of that testing out of the
way for me. I am on an antibiotic that will screw with the test results..
so other than that, hang in there and give us a shout from time to time.
Take care =)
Hi I've not gone away just been learning my way round taking Pramipexole 0.125, days of being so out of it didn't know what day it was! taking 1 1/2 tabs at night not the 4 the doctor told me to build up, to take!!!! the doctor was useless told me I'm not getting RLS in my arms I recommended to him to update his knowledge of RSL, I had this website written down which I left on his desk. So my legs are no longer bothering me at night they do in the day but I can cope with that. Still only getting about 4 hours sleep but hoping that will get better in time. good luck with your tests 2 weeks not to long, will be watching out see how you go.
For me, no it's not linked to menopause, mine is inherited, and it has got worse with age, i dont think mine can get much worse though, almost 24/7, and as im nowhere near 65 it cant be that either, also mine just stayed the same during pregnancy and after, and i cant recall all the literature saying it rapidly worsens after 65, with age yes, but never seen it state a specific age
As we know or not know, there is Primary and Secondary RLS. Primary mostly relates to inherited RLS, Secondary relates to underlying conditions which can cause RLS. That can be looked up on all good websites. RLS, can get worse for most with age, everyone is different, that we have to remember.
sure are Elisse, there's no blanket statement of fact's, the expert's still not sure yet, so i dont think we can be either, except for the fact, that yes we are all different when it come's to rls
I've had the same experiences as HaddieJane and the onset of my RLS coinciding with the beginning on my periods in my teens. I have always experienced a monthly cycle with my RLS with it being worst at the times of my periods. Mine is hereditary and although I am beginning the menopause, I think the worsening of symptoms has been caused more through augmentation after taking Ropinerole for so long.
Yes I'm absolutely convinced that the menapause makes rls symptoms much much worse. I've had rls for years but my symptoms have got unbearable since I started early menapause, I think I have came to the end of the menapause but my symptoms are still unbearable. It also got worse when my body had any kind of hormonal change e.g pregnancy and times of the month and now the menapause, I only hope that things will get easier when I've came out the other end of my menapause. Sometimes I hate being a woman actually it would be interesting to find out how many women compared to men have rls
M4GILL, I JUST FOUND THIS, THOUGHT IT WAS RELEVANT SINCE YOU ASKED HOW MANY MEN HAD RLS.
bonnercountydailybee.com/co...
Thanks sister 3 that was very informative and it's interesting how only 10% of the patients are men! maybe if the research was done on these men they might find a common denominator that they wouldn't otherwise find in women and would give a clearer picture of what causes this disease! I know that sounds a contradiction but studies on everyone gives too many answers and only leaves more questions, maybe concentrating on the men will give more common answers, if that makes sense
Yes, you are right Spike, there seems to be more women than men that have RLS. I dont know the % but it has been documented some where.
That is interesting, I inherited it from my mum who inherited it from her mum and two of my sisters had it through their pregnancys as well as two of my aunties, but no men in my family suffer from it. I wonder if it's only the women who are carriers of this disease and the men who suffer haven't inherited it. Surely there must have been a survey of some sort. If not it might be worth trying to find out what % of men have inherited it compared to women. On any sites I have been on I haven't yet spoke to a male sufferer, not that I'm saying that men don't suffer from it but I would like to know if men inherit it or they just have it
Hi M4gill, im admin in another RLS group, and i just checked our member's, 1200 member's, and we have 8 male's !!, but i think we have to allow a bit for the fact that men seem to be less likely to join these group's than women do, so it's hard to tell, but i do agree with Spike28, women seem to be in the higher number's
I inherited my RLS from my father, i also have a brother who has RLS, so he inherited from my father too. Other groups i belong to have a few men, not many mind, just one or two. I think men just suffer on their own, and dont talk about it as much as women, who are known to talk more openly about illnesses. This group has a few men, we are not all women on here. Oh and just to add the Chair of this forum is a man too...!
So Sorry Elisse did not see the thread above, ignore my message below please, so emotional on the meds doctor given me!!
confused.me just deleted my reply. all good!!!!!!!
2 of my 5 sons have inherited it. My 29 year old son said that the only thing that helped him was cannabis. But he gave that up a year ago Praise God. Still, he's left with RLS. He's coping, he doesn't get it near as bad as me thankfully.
Although I went through menopause about eight years ago, after my recent hysterectomy (complete) I've had a nasty spike of RLS.
thank you all ladies for your replies, the ? crossed my mind was interested to see if it was related to menopause, I guess it's down to me getting older!! (gracefully) X
It figures that I found the humour in all of this..When we have our first period, it makes sense that RLS begins, the cycle of iron loss goes month to month and our bodies finally get back up to the near level and we have another period..all of those years we are going up and down with iron..Then as we age, the periods suddenly stop..you would think that we would finally rid ourselves of RLS since our blood supply doesn't go up and down..so maybe it's the pause in the making of new blood..we are living on Old Blood.. Like old car oil...Oh never mind where I am going with this..I am thinking about the old car breaking down...haha..Well, it's true..once we reach age 40, things start getting overhauled... but before Elisse jumps in here, I realize that men also get this so it kind of blows my theory but it was fun to brainstorm...;}} Elisse..
Women are the heart of the family and the home so that's why women gather to talk and gather wits and strength from each other..so bless the men that pop in here and give us their point of view.. how else would we know? =)
Its a good theory Yikes, but my RLS didnt start when my periods started. So, that also blows your theory, not just the men one. 
Lots of people dont start getting symptoms til later on in life. Its such a strange condition is RLS.
But i did laugh at your old car breaking down, some of us are just old bangers. LOL.
Same here Elisse, MY rls started way before my first period, so no conection here, errrrmmm how does that figure for the men with RLS 
hmm.... my RLS started when i was about 8yrs old never linked it to periods i was 8 yrs old when i started mine ... RLS not changed since menopause started last year , lmao sister3 unless you count men going through their second youth lol but you've a point there .. 
I would like to find out if the men that suffer from RLS what blood group they have, do they have their mums group or their dads? If this is to do with iron levels then it might just have something to do with blood. I have my mums blood group whom only 7% of the population have which is rhesus negative group o. If any men are on here do you know if you have the same group as your mother or father? I'm just trying to put it out there that the answer might lie with the men who suffer from RLS, just an idea
Hi M4. I am an O positive, as was my father who had a mild case of RLS and is now 89 and has stated he longer has any RLS symptoms. I truly believe that there is more to blood typing then doctors will acknowledge. Every person I have ever met with MS (about six people) all were B blood type - the second most rare blood type. My husband is also a B and he has a mild case of RLS but is always able to fall asleep after about ten kicks. So he doesn't know what the big deal is. One night he has to experience restless body. The more I read, the more I think that at the end of the day our RLS is exactly the same. An allergy is an allergy - it varies in terms of trigger and severity but I believe that there is always a cascading affect that goes on in the body with the last part being the release of large amounts of histamine. Any vitamin (ie vitamin c in large quantities) or drugs (Benadryl) that act as antihistamines will offer great relief to most. And I think the vast majority of people can be susceptible to allergy given enough of a particular trigger at any given point in their lives. And so it goes with RLS. I truly believe that there is a cascading event that goes on in the body that eventually results in the deprivation of dopamine. Also, like allergy, we have to avoid known triggers and then use vitamins or drugs that will allow our body to produce more dopamine. Like allergy sufferers we may have to take the drug or vitamin everyday because the trigger might be something in the air and we can't just stop breathing. So has anyone tried (just once) taking a bioavailable form of iron on an empty stomach WHILE they were having a horrible attack and not gotten relief?
Me AGAIN. Think of it this way, if I take a Benadryl in the morning then go to a party at someone's house at night who has a cat, that Benadryl will do me and my cat allergy no good at all. I believe the same is true for iron. I read that 99.9% of the iron we take in goes to organs other than the brain. But that's ok I guess. Most people's brains operate just fine with that percentage. However that .1% drops as sleep time approaches - in everyone. Once again, that's ok for most but not us. So that iron pill we take in the morning (if our body absorbs it at all) will go mostly to other organs and to the making of red blood cells. By night time, our overly needy brains are screaming for dopamine inducing iron. Iron + zinc = dopamine. Kind of like hydrogen and oxygen = water. But water in the morning does nothing for your thirst at night. But if you drink a boat load of water in the morning, chances are you will not be thirsty at night. That's why I think these iron infusions work so well even though they are not given during an attack.
I have had RLS all my life bit it was manageable until in my forties and had started menopuse. I also found that alot of the drugs create a rebound affect that make the RLS worse but to get off the meds once started is horrible.
I am looking for new information and treatment for RLS. MY SYMPTONS ARE GETTING WORSE AND INCLUDE MY ARMS NOW. I take Ropinerole and have increased to the maximum therapeutic dose of 8 mg daily. I will do anything to find the cause and deal with it rather than taking pills. Can anyone help with new treatments? Thanks.
THree years later Suzanmann, and I hope your dose of Ropinirole is much lower, or that you have changed to another med, 8mg is huge, twice as much as recommended. You will have augmented seriously.
Let us know how you are doing.
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