New to Rls

[Julesjpc]

I am new to this forum and to be honest I never knew that what I was suffering from was an actual illness.. I would appreciate any advice or tips how to reduce Rls

[Kaarina Administrator]

Hi Jules

You may find some help from visiting rls-uk.org/ if you have not already done so.

Also getting your ferritin level checked out is a good idea. The ferritin level needs to be 70 - 100 for people with RLS

Kaarina

[Hidden]

It depends on whether or not this is a more recent development or a longer running thing?

If recent check Iron levels as Kaarina suggested. Also look at medications that you may have taken.

Treatment wise you have anti-depressants, (which for many actually make things worse), opioid drugs like codeine, anticonvulsants like Gabapentin dopamine agonists, (often have very nasty side-effects), like Mirapexin or Neupro patch, benzodiazepines and then there is Cannabis and Kratom.

There is loads to learn - avoiding caffeine and alcohol help too, as do hot baths for some.

Good luck and hopefully with the knowledge on here you will get some relief.

[Cathy12345]

Hi Julesipc

A lot of people with rls drink tonic water (contains quinine) and eat a banana (high in potassium) during the evening.

I find this helpful in addition to my medication. Also keeping your legs warm at night by wearing knee length socks during the evening in winter (if you live somewhere in the UK that is) and ensuring you have adequate bedding at night. A hot water bottle is good. I use two in winter.

Do go to you doctor and get proper advice regarding medication.

I also ensure that I drink around three litres of water a day but that doesn't help everyone. It helps me.

Best wishes

Cathy

[Hidden in reply to Cathy12345]

As far as I know quinine is for leg cramps as opposed to RLS. I'm, not sold on the banana part of that either as surely a multi-vitamin with potassium - like Centrum would sort out that problem - maybe for those with secondary RLS, and I would imagine mild RLS at that, (although that is only my opinion).

Julesipc - are you up for giving us a little more info - rough age, duration of problem, any in your family with it and what you have tried?

[Julesjpc in reply to Hidden]

Hi Raff's, and thank you all for your replies.

I am 53 and have only recently been suffering from restless legs. I have had a couple of attacks whilst at the cinema to the degree that I had to leave my companion and walk around at the back of the room. Most embarrassing.

I was suffering again last night for the first time at home just watching a film on the TV.

I notice that alcohol should be avoided, last night I had a glass of white wine spritzer so notna great quantity.

Also I am a regular drinker of coffee but I don't find that this is a trigger.

I have only had a few attacks, and as I am mid menopause I already taken iron supplements.

Does anyone know what causes RLS?

[Hidden in reply to Julesjpc]

It can be caused by a number of things - low Iron levels, potassium imbalance, drug interactions, (if you have started medications like an anti-depressant you may very well have your culprit in that). Some anti-histamines, and anti-sick tablets along with anti-psychotics can all cause it.

RLS is related to the dopamine levels in the brain hence drugs that increase these levels being used to treat it.

Kidney disease, thyroid problems and arthritis are some conditions linked to it.

With you being mid menopause are you taking HRT? Leg cramps are associated with HRT - if that is the case quinine is your friend, (although rotten taste if taking tonic water to get it imho).

[Julesjpc in reply to Hidden]

I am not on HRT nor am I taking any other medications prescribed or otherwise, but I think I will increase my iron intake and potassium and see if that helps

[Hidden in reply to Julesjpc]

Jules, ask your doctor for a ferritin level test first before you increase taking iron. Taking too much iron when you dont need it can be dangerous. Your ferritin level needs to be 70-100 for people who have RLS.

[Hidden in reply to Hidden]

Yeah a plus 1 on Elisses post - too much Iron can damage organs so always worth a checking - I would ask for a U&E, (Urea and electrolytes), also as this will show your potassium levels.

Certain things like Vit C and Fish oils are safe enough to rattle away at, (not advocating them for RLS nor big doses either) but other things like Iron and Potassium, (Potassium helps maintain good heart function and too much can cause abnormal and dangerous rhythms) need to be checked out before trying to alter them.

A good GP/MD will be in valuable - just hope you get a good one!!

And if a bar of soap is mentioned we all here give you permission to slap them

[nightdancer in reply to Hidden]

AND, I had a ferritin level of 4 when I first got tested, had 3 iron infusions done, we got my level up to 142, and it did not help my RLS one bit. I am finding in my support groups that I manage, iron is not as big a thing as we used go think. Some swear by it. ME, not so much.

I am with you on the "bar of soap" raffs!

[Mopsy1950 in reply to Hidden]

Hi I might be dum but what is a ferritin test ? When I was finally diagnosed with RLS I was ready to slit my wrists no one could find what it was I felt I was losing my mind the pain night after night back and forth to doctor until I got a locum that was in to help surgery he looked up symptoms on computer and THAT worked out that was what I had made appointment for hospital check but don't think I had ferritin test by the way the locum doctor was a Canadian

[Hidden in reply to Mopsy1950]

Ferritin is how your iron is stored. Its a different blood test from the normal one. For RLSers, the experts recommended the ferritin level should read 70-100. Low ferritin can for some be a reason for RLS. With your doctor's supervision taking iron pills can help some, but not everyone.

[Mopsy1950 in reply to Hidden]

Hi Elisse am actually on iron tablets at the moment waiting to go for half knee replacement and they found I had low iron but this is only recent( mores the pity )had RLS for to long for that to be the reason but must ask for them to check for ferritin levels next time as I'm on the highest amount of clonazapam I can go on at present but never heard of most of the tablets all you girls talk about tried 3-4 different ones but the body got used to them over a couple of months ,what I'm on now have been on for the past 8 years just going up and down on pills depending if I was good or bad ,long time since I've been on top dose though

[nightdancer in reply to Julesjpc]

Do not increase your iron unless you get it tested FIRST. Seriously, iron overload is dangerous. It is recommended by any RLS specialist to have your ferritin level done (shows how your body stores the iron) and it is a different test than a regular iron serum test.

[Mopsy1950 in reply to nightdancer]

Hi nightdancer ,love the name,,, can imagine where that came from ,I don't think we have specialists over here for RLS all I know is that we have the same sort of treatment as Parkinson's never been told a lot about it when at the doctor they have to go on comp to find out what's what

[Cathy12345 in reply to Hidden]

I was us writing about what helps me and others who I have known personally. I went on a week's holiday with my aunt (my father's sister) once and we both had a drink of tonic water with our evening meal and a banana for dessert each night for the same reason. My father and grandfather had this problem as my two brothers.

I am aware different things help different people.

Cathy

[nightdancer in reply to Hidden]

Qunine is for leg cramps only, and is not even sold in the USA any more. It has a very strong black box warning on it for heart damage, serious heart damage. The Federal Drug Administration removed all Quinine from our stores and over the counter meds. "To be used only for the treatment of malaria" because the risks outweigh the benefits for treating anything else with Quinine.

[Hidden in reply to nightdancer]

I know it is prescribed in the UK for leg cramps but not for RLS.

[Hidden]

Hi Julesjpc. My opinion is the same as raffs regarding the tonic water. Have you been to the doctor to get diagnosed..? There are two types of RLS, Primary and Secondary. Nobody knows the actually cause of why RLS happens, its neurological. There can be reasons why we get RLS. Primary RLS is the genetic kind, inherited from a parent. Secondary RLS is a underlying condition which could be the reason of your RLS. raffs has listed most of them. Most of us have the Primary RLS rather than the Secondary RLS.

[Julesjpc]

Hi Elisse, to be honest I only found out last night that this was a genuine illness. I had never heard of it before. So yes I will make a doctor's appointment and get checked out first.

[Hidden in reply to Julesjpc]

Good idea.

I remember you YEARS thinking there was something wrong with me that I couldn't sit at peace and that it was all in my head - when I discovered that it was RLS it was great as I could then do something about it.

If you don't recognise the problem you can do nothing about it!

My daughter uses Tonic Water with some degree of success - I worry she has Primary/idiopathic RLS like me, (and my father) - as I know the sh1t she is going to face and the damage it will do to her life

I appreciate that everyone is different, although I would believe if the Tonic water quinine works it is due to a person having cramps as opposed to RLS or the placebo effect - and if the placebo works than that is all good.

[nightdancer in reply to Hidden]

yep, nothing wrong with the placebo effect. But tonic water has a miniscule amount of quinine, barely registers when it is tested, so I say yes on the placebo effect, and there is not enough quinine in tonic water to help. And, yes, it was never meant for RLS, but for leg cramps. at some point in "RLS history" leg cramps became a mistaken symptom of RLS. Leg cramps are muscular, RLS is neurological.

[nightdancer in reply to Julesjpc]

70% of RLS is genetic, so even if your parents did not show symptoms, they could be carrying the recessive gene and passed it to you. Did we ask if you are ANY meds for any other condition? Some meds can be horrid and make it so much worse. The list of Drugs to on rlshelp.org is very comprehensive and also on the RLS-UK site .

[Hidden]

I am a strong believer in the placebo effect too.

[Windwalker]

For 40 years of suffering we now have a name for it Willis-Ekbom is the disease to join Fibromylgia which is as much a mystery as RLS and Rheumatism. None of his doese any good until a cure is found or a real good treatment comes along by accident.

[nightdancer in reply to Windwalker]

The real name is still RLS/Restless Legs Syndrome. The US RLS Foundation tried to make the official name WED or Willis Ekbom Disease, but legally they could not do it., so they announced on their FB page and web site a couple months back they are going back to the original LEGAL name of RLS. WED is copyrighted wedding magazine, and it did not "fly" with the magazine people. So, RLS it is now and forever. You will notice that the RLS-UK NEVER used the "new" name WED. They, and all other countries and orgs were smart enough not to try and change it. Thank goodness! We who have been around support groups and the US foundation had a little "we told you so" moment when they announced RLS is now the official name AGAIN. lol But, Willis was Dr. Willis from the 1600's and he wrote the first ever description that we know of "flailing of the limbs, so that the afflicted are as if they are in the greatest place of torture". Dr. Ekbom actually did the most research in the 1940's and he named it RLS. So, that is good enough for me.

[nightdancer]

Are you from the UK or the USA? A good US based web site is rlshelp.org It is Dr. Buchfuhrer's site who is an active RLS specialist and researcher. The treatment page has a LOT of info.

[Hidden]

Looks like most of the ground has been covered; thought I'd mention the one trigger that affects my RLS- lower back issues. Don't know if you stress your back or not, but I abused mine for years and years, then one day over 10 years ago, it started hurting from neck to butt (bum, if you're UK!), and hasn't been the same since. Dealt with restless legs that was bad enough to make me frantic at night, but never experienced the pain that many here experience. I'd be up for several hours at night walking it off, and miserable the rest of the day. It was chiropractic for my back and neck that relieved maybe 85 to 90% of it for me. I got an inversion table, and use it every night. That seems to help me a lot as well. And I can say that as my lower back goes, so goes RLS for me. Just thought I'd bring up that possibility just in case it might be relevant. Hope you find relief.

[Spudellen]

You will plenty of advise here Julesjpc. It is an excellent web site.