Went to see a neurologist today

[ookla]

He said my symptoms *sound* like RLS, but since I have it in the morning (as well as throughout the day and evening and night) and didn't get much relief from the RLS meds, he doesn't think it actually is RLS. He ordered new blood work (they took 16 viles) and scheduled an MRI of my brain and neck. I'm sure everything will come back negative, but I kind of hope not. That's probably a terrible thing to say.

[nightdancer]

RLS can happen 24/7, as is well documented just in this group as well as reputable web sites etc. I guess you should be glad that he is being so thorough, but just because RLS meds do not work for you, does not mean you do not have RLS. None of the approved RLS meds work for everyone, , in fact about only 50% of RLS patients. The dopamine meds do not work for even that % of people, it is about 40%, and gabapentin only helps a certain percentage and so on. Which means that they have not found the magic bullet yet, and that may never come. no new drug trials are going on. Most of my people with RLS have to rely on other meds other than approved RLS meds to get any relief, like the narcotic pain killers. I can personally testify to that, and I definitely have RLS. Severe RLS knows no time clock, and can happen at any time of the day. Most experts recognize this now.

[nightdancer in reply to nightdancer]

Good luck, and let us know how the tests turn out. I bet they are all negative, too, but good to rule things out.

[Hidden in reply to nightdancer]

Most of mine were negative besides vitamin deficiencies,

mineral deficiencies and MGUS, of course. I have some

minor neck issues but other than that, it's purely RLS.

My MRI, CT Scan, X rays showed little to nothing.

I really hope that they are looking at all of those things.

I have had the opinion of 5 doctors and each

has their own theory.

[ookla in reply to nightdancer]

Unfortunately, I seem to live in an area devoid of RLS experts. My insurance wouldn't even cover lyrica for RLS, so I probably can't go back to tramadol now.

[Hidden in reply to ookla]

Fight for it. Tell the doctor that you have no quality

of life without at least 4 hours of sleep.

Ask her/him to make a case for it. Good Luck.

[Hidden in reply to nightdancer]

Mayo clinic says that approved RLS meds along with narcotics

with the lowest grade being Vicodin, the highest being Oxycontin

work very well for almost all RLS sufferers.

Tolerance to Opiods is the problem, not people abusing

them or having a physical dependence of them.

The fear is ""What if you have an extreme painful time

in your life- the narcotics may not work, you will become

immune to the effects.""

[Hidden in reply to Hidden]

I have a severe RLS/WED for appr. 30 years and been on drugs the last 13 years. The only thing that works for me, I have pain and movements 24/7, and tried everything, is morphine.

I'm not afraid if somethings happens that causes me moore pain, an operation or an accident, because there are stronger drugs than morphine and I'm only on 58 milligrams since 2 years.

And by the way, I do not have any choice at all!

Sorry for poor English, I'm Swedish living on the southwest coast in Gothenburg.

[Hidden in reply to Hidden]

You are totally right. I agree 100 %. =)

The longer I am on this site, the more that

I learn. If I had rls going on 24/7, I would

also be on morphine -without a doubt. =)

The USA doctors are so reluctant to prescribe

narcotics in our rls treatment plan. I went to

a doctor's lecture on rls, other sleep disturbances

and heard audience members biggest complaint

is either no narcotics or very low narcotics being

prescribed for rls. The speaker doctor said that

they don't prescribe them often because it's

not a permanent answer..narcotics are meant to

be used short term or in end stages of a terminal

patient because of the addiction problems.

As you guessed it, the room got pretty noisy

with people upset about this practice.

Bet your location is gorgeous. Nice to meet you.

[Hidden in reply to Hidden]

It is not easy do get help here in Sweden either, the knowledge is so poor and I've been lucky that I met a pain doctor after all these years of terrrible suffering. He says that I can have up to 200 mg before there is any problems and then he'll give me Methadon.

And often a combination of different drugs works better than one single.

OK, there is an addiction problem, but in my life the RLS/WED problem are even bigger. Much, much bigger

[Hidden in reply to Hidden]

We think alike. What will he give you? 200 mg of what? I found out at that seminar that people are getting mixes of drugs to combat rls.. and unless a narcotic is prescribed along with a

dopamine drug, the success rate drops sharply in satisfactory treatment. That

information came from the audience members

who are not medically trained!! The doctor

went on to say that narcotics are bad for so

many reasons and should only be prescribed

in severe cases... so what are we to do?

Lie and exaggerate how often we have rls?

When I can't sleep, it's severe for me. My

body hates me the next day. If I get zero or

minimal sleep for two nights in a row, I am

a basket case!!

If the doctor is prescribing narcotics for

rls, how many other people will lie and

say that they have it just to get narcotic

drugs in their hands? The feds over here

watch doctors and keep track of what

doctor is prescribing those kinds of drugs

and for what? The doctor doesn't want

to have them looking specifically at them

so they under-treat pain and rls.

I do understand both sides of this. It's

up to the prescriber to determine who

is using drugs recreational or selling

them and who really needs them and

must have them to function in life.

How does it work at pain clinics? Do they

offer treatments for rls? Do they offer

alternative treatments? I've never had

an actual pain specialist..I had a pain

nurse for a consult. It wasn't enough to

get my questions answered.

[Hidden in reply to Hidden]

He'll give me up to 200 mg of morphine Depolan, if it is necessary.

"Morphine should only be prescribed

in severe cases" the doctors says, and yes I 'm a severe case, a very severe case! They have to believe us!

I do not need to lie, I have RLS/WED 24/7! Legs, arms and hands. And without help I cannot live.

I havn't sleep a whole night through for 13 years, I cannot work any more (I'm a speech pathologist) and my cognitive skills are out and away, my brain is so tired after all these years without adequate help.

Here in Sweden only pain doctors and other specialists can prescribe narcotics, no "ordinary" doctor can do that, and the fed are watching them here to. It is well known that opiods has good effect on RLS/WED and that we do not abuse it.

My pain specialist is in a pain clinic and had never met a RLS/WED patient when we met, so he knows nothing about my disease, but he knows a lot about the drugs and thats enough for me. I educate him and all doctors I meet about how it is to suffer from RLS/WED

Yes I'm on a mix at the moment. When I first started with morphine, I gave dopamin agonist (pramipexol) totally up because of a lot of very bad side effects and I did'nt want to eat them any longer. I've had them for 11 years.

But after 1,5 years I noticed that I needed dopamin for my zest to life so the doctor then gave me Fentanyl adhesive + morphine Depolan + pramipexol and that's ok, I'm not saying it is good, but it is OK most often.

The last two nights have been terrible, maybe because of the full moon?

[Lilmo1 in reply to nightdancer]

I have just returned from my GP who says he can't prescribe anything as there isn't anything out there that'll help. That sure wasnt music to my ears i must say i asked him for 2wks sleeping tabs as im sleeping on my feet last night got 1 hr after trying our own bed spare bed then sofa i gave up i couldn't even concentrate on my crocheting it was so severe..head arms shoulders legs the lot. I just cried.

[involuntarydancer in reply to Lilmo1]

Hi lilmo,

Have you tried any prescription meds for rls previously and if so what?

It’s certainly not true to say there are none. There are three main groups: dopamine agonists, anti-convulsants and opioids. They are none of them without their problems so obviously it’s better if you can manage without meds but you sound like you have severe rls and need treatment.

The first thing you should do is get your serum ferritin checked (get the actual figure - not just that you are ‘normal’) and if low start taking iron. Raising iron levels helps improve symptoms for many sufferers.

You could also consider ordering the medical textbook ‘Clinical management of Restless Legs Syndrome’ by Buchfuhrer, Lee, Hening and Allen. It’s on Amazon and it might help to educate your GP.

I hope you manage to access some reasonably knowledgeable healthcare.

[Lilmo1 in reply to involuntarydancer]

Thank you IVD love that name.

Doc gave me script for sleeping tabs 2week supply one every other night but sure the 'other' night that I'm to miss will be just as bad so i never missed it last night but cant say it had same sleep effect as first night perhaps i will do alternate nights.

Ive had Pramiprozole which honestly i can vouch has made RLS very much worse..helped ease it at first starting on it but then needed increased and 4 is max my GP who put me on it said i needed to go back down but i couldn't cause if it was so bad on 4 what would 2 be like couldn't even imagine it. But then I'd had enough and just did it really needed a help med something just anything was given 2 weeks of 2mg Diazipam..rubbish did nothing would've needed 5mg thats when i went back to GP and told me there's nothing else other than go private for physio and finance it myself..brilliant..not.

It has never been as bad as it has before Pramiprozole though was getting there thats why I'd ask doc for something was given risperole first they didn't work.

These sleeping tabs are helping but once the next weeks up that'll be it back to mightmare street.

Strange thing IND when i sit at my sewing machine i dont have none of it at times i go sew at it just for respite from it. Wonder why that works. Crocheting doesn't help or reading wonder why machine sewing.

Thank you for your most welcome words i will get myself that book. I have had RLS for as long as i can mind and im now 65. My Dad had it and 2 of my sons have early symptoms they say its hereditary.

[involuntarydancer in reply to Lilmo1]

Awful to think of your sons getting it. They should get their serum ferritin checked as low iron levels can set it off.

Do you mean pramipexole (for pramiprozole)? Are you saying you have recently stopped that drug? If so your symptoms will go through the roof for a while and you will probably be getting no sleep at all you poor thing.

The only thing that helps with coming off pramipexole is a strong opioid such as OxyContin. It might be worth asking your doctor for a temporary prescription for it - if I understand you correctly and you have recently discontinued pramipexole. Symptoms should settle down in 10 to 14 days and you should gradually start to feel better. How long is it since you took the last pramipexole?

[thedragon]

Hello Swedish. Good to meet you.

Yikes, I didn't realise how and why it's so difficult to get pain meds in the USA. That's harsh for you.

[Hidden in reply to thedragon]

the dragon and Swedish..

Not every doctor will prescribe but some do. I had one that

did prescribe. After some time I needed more of the drug

to settle the legs down. I built up tolerance very fast. My

doctor said that I had to make do with the dosage or I

had to start up on another kind of treatment. My legs are

not necessarily painful but restless as heck.

I had to ask about a pain specialist because it hasn't been

suggested that I should go that route yet. I didn't realize that

they dealt with other conditions besides true pain.

I tried to put myself in the doctor's place and see it all through

his eyes. It was only a good guess that they have to decide

who really needs to be on pain pills. It feels to me like he

is always looking at me in that way. I look normal, look like

I am feeling just fine. It's an invisible syndrome that I have. (rls)

No one could tell that I suffer greatly from RLS just from looking

at me.

Swedish, I believe you about having to take pain meds and if

they are working okay for you- keep taking them and thank

goodness that you found some relief.

[Hidden in reply to Hidden]

I do often say that if you could se my suffering in my face or body by just looking at me, I would have restrictions on going outside the house, they would lock me in, we have a special word for that in Sweden, but I do not know the english one.

The really good thing is that the morphine even takes the movements away, the restless body is calm, most often. And with a mix of drugs the tolererance is rising slower. I am 59 years old and do really want some 10 -15 years moore here on this planet.

[thedragon]

Just a little off topic here but following on from what Swedish said about some doctors knowing nothing about rls. My son's girlfriend is doing a nursing degree and yestcerday had a long lecture on rls. She called me to ask for more info. It was lovely to know there is now at least one more future nurse out there who understands! My son is also going to invent something to help us!!!!! But seeing as the last invention he did was a go bag in case of zombie attack.....i won't hold my breath!!!! He is 25!!!!!

[Wollyhat123 in reply to thedragon]

RLS- I suffer with this and have for forty years. I was put on a Parkinson's drug called Risperole. It had dreadful side effects ( one was massive weight gain in only six months). I went on a site and read all the "stupid" comments about putting a bar of soap under your sheets in bed, it didn't work. However, I was so desperate that the next night I "wet" the soap and rubbed it all over the lower part of my legs and feet. I had the best night's sleep in years. I read somewhere that RLS can be caused by magnesium deficiency and guess what - the soap I used ( Dove, white) has a high part of magnesium in it. Have been using it now since 20th July 2013, and have not had one bad night with RLS. I feel it starting up before bed time but once I put the soap all over my legs ( and leave it to dry on all night) it disappears. I am sure it is not a placebo effect.

[Hidden in reply to thedragon]

Here in Sweden there is a community of RLS/WED patients that regullary have lectures for the public, and those of the doctors who wants to come, we use to rent lecture locals in hospitals so it'll easy for people working there to come and listen. It is a necessary work to do, we have to inform as many as possible about this disease.

[gypsy49]

hi ookla sorry to hear about you having RLS , might be late in the day commenting on here but only just managed to get on here due to tech problems in told lol, like you i've had all the blood test done and the MRI they found nothing i have RLS 24/7 no rest from it ggrrrr had all the meds possible up to now nothing worked up to now... im living hope .. i see a neuro Dr who says next time i go (end of this month) and the meds he put me on didn't work he'll send me to a different consultent me being me didn't ask what kind of consultant lol brain wasn't in gear , my point is what ever we read about RLS always seems to state that it occures at night and in older people wish they would change that because im reading more and more peoples comments that they started in their youth RLS started with me when i was 8yrs old only in the last yr or so have a Dr started to listen to me hopefully you get all the help and meds to help you and being on here you have proof to tell your neurologist that RLS isn't just a night time thing but can happen at any time of day ..... Good Luck

[Hidden]

gypsie49

Good Luck with the testing. You are so lucky that you found a doctor

that cares enough to let you have all of the testing done. I think that it

needs to be done so we can rule out anything else. It would be terrible

if they didn't do a MRI and it was really pinched nerves causing you many

symptoms that mimic RLS..

It would be super fantastic, excellent if they found something that

could be fixed with a chiropractor or with a low dose antibiotic..

Speaking of Chiropractors, I heard an ad on the radio that they

can fix pinched nerves and get rid of RLS.. hmm.. They said

that RLS is really a form of neuropathy which they claim comes

from pinched nerves. What do you think about that?

[Hidden in reply to Hidden]

Do not believe in the theory about pinched nerves. I'm 100% convinced that RLS is due to something in the brain, the hormons or amino acids och nutrition things.

[Hidden in reply to Hidden]

Hi I'm new to this but in my case I think it is pinched nerves and possibly hormones too. It makes sense to me because I have a lot of systemic inflammation from Rheumatoid Arthritis and I believe RLS goes with many autoimmune conditions such as MS, Lups and RA as well as Parkinsons as a secondary condition - all of which would be responsible for pinched nerves I think. I have not yet been diagnosed or even asked my doctor if this could be the cause of my constant polyneuropathy, but having read stuff on here I now feel pretty confident that I have RLS and wonder if I might have been suffering from it for years actually. I am living a very healthy life re exercise and nutrition I really don't believe that whatever's going on with me has anything to do with my diet.

[Hidden in reply to Hidden]

I brought it up. It was just an advertisement on the radio.

I said it to hear discussions because I didn't really agree

with it... but then again, I didn't try a chiropractor..so how

do I know if it works or not. I'm sure that someone on this

site goes to the chiropractor. I am wondering their take on

this.... did the chiropractor help elevate some of the

symptoms? Anyone out there? = ]

Someone else brought up the hormone issue and

wondered if hormones had something to do with it.

I never asked a doctor that...I am scratching my

head wondering about that one..I did some reading

and I can't find that it says that it's hormones...

Doesn't mean that it isn't true.. I am still looking at that.

If you do ask your doctor tidat...please tell us their

thoughts. I want to know.

Welcome to the site.. you will fit in just fine. =)

[Hidden in reply to Hidden]

Thanks for the welcome Yikes (love the name!) - I will let you know if and when I find out what's going on with me. My GP did email me back this morning to say he doesn't believe my symptoms point to RLS - and he hasn't heard of it affecting arms or other body parts as well as legs. I already know this is wrong from comments on this forum!

My husband thinks I may have it still but because I've spent my whole life wriggling about and itching due to chronic eczema - and more recently due to having stiff and extremely painful joints and tendons sometimes - I may not feel things as others do. He says I have always thrashed about and been very restless in bed and he's lived with me for about 30 years now so he should know!

Tilda x

[funnyfennel in reply to Hidden]

After my divorce, my husband also said that at last he could get a peaceful nights sleep and that I moved every 4 seconds! Not to be meand but maybe twin beds are better, i know I used to try so hard not to move sometimes, at least now the bed is my own (and I have drugs)

[Hidden]

Swedish, I don't either but it was advertised on national public radio..

I think that it's a mis-firing problem in the brain. Amino acids ? That;s

one that I didn't hear about yet.

Nutrition I can attest to. I lost a bunch of weight recently and it is helping

with the pain of RLS..I am handling RLS better, I am more open minded

than usual. I have a greater sense of knowledge about rls..

Hormones... I am not even going to argue there.. I know nothing about

that stuff being connected to RLS.. You can try to explain that reason. =)

[Brica]

Flying Nun. I have had RL since childhood, off and on; I am now 81 and symptoms have worsened in the last 10 years. Have been on all the meds; would work for a while, then stop. Last few months, my symptoms lasted 24 hrs/ day. I thought I was going to die from exhaustion due to no sleep. Went on the RLS Foundation site ; they list Doctors who treat RL in your area. I found Dr. Risk in Marlborough,MA who has saved my life. I am on iron supplementation for the last 3 months and am nearly symptom free. Blood tests are ordered monthly to monitor levels of iron and especially Ferritin. Individuals vary to the meds which are used to treat RL.

[HilsK]

I have had RLS (though it wasn't named as such) since I was a little girl. The 'fidgets' as it was called were never limited to night time .... All I got was a telling off by everyone because I couldn't sit still! It runs in the female line of my family. Incidentally have you checked your Ferritin levels (NOT haemoglobin). Mine were and have been below 20 for a long time. I have just had two ferritin infusions and the level is holding above 100 ... and guess what ... no RLS symptoms. Our bodies need the iron from Ferritin in our brains to create Dopamine. For many people apparently this is the focus of where RLS starts. Not for everyone ... it depends what genes you are carrying.