RLS/VEINS: Here is what the national... - Restless Legs Syn...

Restless Legs Syndrome

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RLS/VEINS

31 Replies

Here is what the national sleep foundation says about RLS / Veins.

It has everything to do with circulation. The valves in our veins malfunction

and it creates rls. They sent 113 people in for treatment of varicose veins..

(venous stasis affected) and 98% of the people experienced relief from RLS.

Here's the link to the National Sleep Foundation..

sleepfoundation.org/sleep-d...

31 Replies

Dr. B says differently.

dekker profile image
dekker in reply to

Varicose veins are on the list of mimics of RLS. The symptoms of varicose veins can look very similar to RLS complaints but they are NOT RLS. There is no urge to move which we all know is nr 1 criterium for a RLS diagnosis.

Dekker

in reply to

Very, very, very respectfully to Dr. B and I am going to tread very carefully here when I say this.

Dr. B has built his life around working for the treatments and cause of rls..

It's very understandable that every single fact regarding RLS must be backed up by years of trials and proof or he simply will not be credited..

I don't think that he said "no" without a doubt. I think that he is not willing to jump on this just yet or maybe he is just going to watch how this plays out. He has not given us a clue to what is on his mind except to say that the studies were inconclusive that they did do and that the studies need a control, a solid backing by a third party.. he needs to see more proof..

I know that the RLS foundation gets it right 100%. They check every single thing out and give specific reasons that the information is false if it is.. they would never put a cure or treatment on their pages if they were not 100% sure..

I believe the same about the national sleep foundation..so obviously, there is some good indication that this is true that it works..

The purpose of a forum is to gather different ideas and stories to share. We can pick up on good information, take some wild guesses, get facts, share.. but I would hope that everyone arrives knowing that they won't agree with the next person always and there will be all kinds of different opinions. I am telling the group that it is a fact that the national sleep foundation backs these doctors.

The way that I read how it goes is that the veins have a reflux .it means that the blood flows in one direction and suddenly the vein starts pushing the blood flow to go in the other direction.. it's called a reflux just like when the food and acid comes up from the tummy and you get a mouth full of whatever is down there.. the veins do the same thing (if they are troubled veins) so how they treat that is by injecting a solution into the troubled veins and the blood flow problem is fixed most of the time. Other times they may do more drastic things like removing the veins.. These doctors are saying that 36% of the patients that show up in their clinic with the vein problem also have RLS. Of that 36%, over 90 % are cured and they do use that word "Cured" of RLS..

What we are not being told is what happens in 10 yrs or even 5 yrs.. those are things to be studied yet.. and that's my guess why Dr. B is not budging on this just yet.. it will take that information for the RLS foundation to accept and to put it on their websites. Some doctors said that they know how long it lasts but it has to be tested by an accredited tester before they can say yes 100% certainty. XX

nightdancer profile image
nightdancer in reply to

Cured would mean it never comes back. If you read Dr. Buchfuhrer's site and the entire study, which is not listed here on the Sleep Foundation site,

the study was 113 people, as stated, and was done years ago. the word cure should not be used. Treatment would be better. Coincidentally, Dr. B and I were discussing this, and you will notice on his web site he has added notes in the last week after the blood pressure med info, and the vein issue, and one more I cannot remember now. It is the same study that he references on his web site, 113 people. I can get the year for you if you would like, but it was a loooong time ago, at least 10 years. since then, they (experts) have argued this over and over, but since he is one of the most respected experts and works with all of these people, he does not believe at all, and he says this on his web site, that a neurological condition can not be treated with vein therapy. It may get rid of your burning, maybe cramps (that are not RLS). Since he and I just discussed this, and also have read all his books that he has written with many other RLS researchers and doctors, all of who say they "doubt" that this one study of only 113 people could have been flawed. But, I thank you for bringing it up.

in reply tonightdancer

How interesting that the two foundations disagree.

nightdancer profile image
nightdancer in reply to

The RLS Foundation knows this was not a clinical study and that is why they took it down years ago. 1995, Yikes. 113 people, no control group, etc. LOTS of studying would have to be done in a clinical setting, with meds on one group, no meds on one, and placebo on another. That is how it is supposed to be done.

sleepfoundation.org/sleep-d...

One more time, I am showing you this from the sleep foundation's website..

They are claiming it to be true.

I am wondering who did the study and who were the people who carried out the vein ops. Alot of vein clinics will say they have treated people who have RLS and have cured them. And reading on that link, it says similar symptoms to RLS, and it doesnt give the important sensation of having the urge to move. So, for me i will listen to Dr. B and he says no connection. So, thats my opinion on this.

nightdancer profile image
nightdancer in reply to

I quoted Dr. Buchfuhrer's site and it says the group, kind of abbreviated.

This is what the National Sleep Foundation has to say about it. I copied and pasted it as a courtesy to those who can't find it within the link that I showed . It's on their website.

VEIN TREATMENT FOR RLS

98% of patients affected by RLS in a recent study found symptom relief after treating varicose veins in their legs with non-surgical sclerotherapy*. Many physicians believe that it is the underlying vein problems that are causing the Restless Leg Syndrome, and by treating this with an outpatient procedure, patients can get relief.

How it works: Varicose veins are caused by unhealthy valves within the veins. When these valves fail or leak, the blood falls backward through the poorly functioning valves causing the blood to pool and appear enlarged, twisted or bulging. Scientists first theorized a connection with RLS due to the similar side effects of varicose vein sufferers including pain, fatigue, itching, burning, cramping, restlessness and throbbing.

The modern treatments for varicose veins (and the corresponding RLS symptoms) are highly effective, and don’t require surgery. A specialist called a Phlebologist does a procedure called sclerotherapy, which has little to no pain, and usually takes an hour. The patient is able to walk afterwards and then resume normal activities.

in reply to

Yikes I have been spending some time reading and thinking about this as I say every avenue must be explored.What about the many (myself, mum and daughter included) who do not have any varicose veins but suffer severely with RLS. What about the many children who suffer surely they dont have varicose veins?

in reply to

Are they pre-dispositioned to have defective veins? Do the veins valves slowly go out or do they do it suddenly? I've never ever heard of a parent that took their little kid in to have their veins tested or examined by a specialist.. I don't know that. To answer you P1pp1ns, I'd have to ask a doctor that examined children's veins.. I mean that with great respect towards you. Xx

in reply to

How many people DO have varicose veins and do not have RLS. ? :)

in reply to

The veins go deeper than just the surface ones. It would be insane to even guess how many. We would have to pull out the ultrasounds to get our answer.. I am still hanging on very,very tight to the reflux of the veins, particularly the long veins because when you have blood trapped in the lower legs, it's backed way, way up like a traffic jam on the highway.. so eventually there will be nowhere for the blood to go at all..as the heart pumps it down..you can imagine what's happening down the way...pretty soon the legs swell or worse. The force of the blood rushing down the legs hits that flapper that should be open but isn't so it bounces off that flap and reverses..Now my theory is that the legs will have some non-oxygenated blood pooled there...the message to the brain is to slow down the pumping of the blood..so less iron and less nutrients, less blood flow is going on..I think that the nerves, the muscles, the entire being of the leg is now malfunctioning... It's like being at the amusement park on tilt a whirl..and suddenly it S--L--O--W--S down.... Now we have got problems - messages start misfiring.. the brain tells the leg to move to pump that blood back up to the heart..

but it goes nowhere or trickles....

The brain keeps on saying "move the legs, move the legs"

so when we do..that little trickle is just enough to survive..

Just enough to give the congestion relief..

So there you have it in the best way that I can explain what

I think is happening... It makes sense to me..

I don't know if the valves close slowly or if they suddenly

do it but it makes sense that as time goes by..the valves

close up tighter.. and symptoms of RLS get worse..

Eileenk profile image
Eileenk

Thanks Yikes

That will make for some interesting reading in the early hours!! My mother had terrible varicose gains, is it hereditary do you know? I have thread vines but the doc didn't seem too concerned. I was a smoker for many years so wouldn't be surprised if there was some link with poor circulation.

Kaarina profile image
KaarinaAdministrator

I have had numerous VV ops but sooner or later more develop. :( I had my first VV injected at age 16. I have suffered with RLS on and off for years. It is back again and VVs are back as well, with a vengeance. I have been putting off going down the route of another op yet again for a long time. I have never made a note of whether my RLS improves or goes away after removal of VVs or not. If I have these VVs removed I shall make a point of seeing if my RLS improves.

nightdancer profile image
nightdancer in reply toKaarina

Thank you, Kaarina! I deal with about 3,000 people in my RLs groups and since 1997 I have never net anyone who had this done and "cured" their RLS. Cure would mean it never would come back.

nightdancer profile image
nightdancer

The study was done in 1995, there was no control group, and none have been done since, and that is according to the RLS USA Foundation. Google any site that claims RLS may have something to do with veins. This same non scientific study is the only one ever quoted. Many of the people that had the surgery were on dopamine meds for RLS anyway, so hard to tell if it was the surgery or the medication. 1995 is pretty old. I have never found anything newer, and I am a firm believer in control groups, which have to be used for scientific study. I am shocked that the sleep Foundation would even list it. By the way, the US RLS Foundation only has a dead link to that study now, meaning they did not want it on their site, and if they do not know, who would?

nightdancer profile image
nightdancer

Sclerotherapy is a treatment for varicose veins in which a chemical (sodium tetradecyl sulphate) is injected into the varicose vein. In a recent study (Dermatol Surg 1995 April;21(4):328-32), 111 of the 113 treated patients(98%) reported initial relief from RLS symptoms. Follow up showed a recurrence rate of 8% at 1 year and 28% at 2 years.

This is an interesting study which shows surprising results. The improvement of RLS symptoms from sclerotherapy is not understood. Patients who have both RLS and significant varicose veins may want to consider sclerotherapy before starting chronic drug therapy.

NOTE: Most RLS specialists do not recommend sclerotherapy for treating RLS. "

This is from rlshelp.org (and this section was published in 1996, so at the time it was "recent" study, though it was non clinical). Dr. Buchfuhrer added this note 9 days ago, to say that it is not an acceptable form of treatment. he has learned along with us, but to say on the sleep Foundation site that this is a recent study is not correct as you can see the date is 1995. so lots more studying would have to be done before anyone can call this a "cure". I hope this helps.

Pete-1 profile image
Pete-1 in reply tonightdancer

I do not have varicose veins but do have RLS which is treated by Pranipexole that I take primarily as a treatment for Parkinson's disease. However I do have damage vein valves resultant from a Pulmonary Embolism that I had about 6 years ago. So even though my RLS is not caused by varicose veins I do have vein disease of a sort and that is a problem relating to circulation.

in reply toPete-1

Pete, I don't think that the problem veins are all at the surface. I think that some of them are deeper and some of those might be problems. Someone asked me why little kids have rls and not varicose veins. My thought is that there may be a malfunction of their valves even at that early age. I was told by one vein doctor that once a surgery is performed that they are cut open, their veins always get clamped off and the veins never will function the same again. He said that other veins will take over the duty but you will have problem veins leftover that will still continue to do their job, just not a well done job.

Your Pulmonary Embolism must have been one of those moments when you are standing at the edge of a cliff..I had my lung fill up pulmonary edema after surgery. I think that I might have died because the panic was so severe that I passed out a few times. My oxygen was 60 for an hour.

Thanks for your contribution. This is exciting conversation.

in reply tonightdancer

I plan on bringing some more ideas to the table.. maybe later today or tomorrow. I've been talking with doctors about this stuff.. lol.

mjb

ToMe Oct 20 at 8:33 PM

The 2008 study performed by Hayes (who is a vascular surgeon and not an RLS doctor) has never been reproduced by other medical centers. The study is not blinded and has not control group. As such, it is an interesting preliminary study but there is no way to tell if the entire therapeutic effect of surgery was due to the surgery or a placebo effect.

None of the true RLS experts here in the USA recommend or believe that vein therapy has any role for RLS. The National Sleep Foundation likely had a person or doctor who is not well versed in RLS add sclerotherapy to their RLS page.

mjb

in reply to

This is what Dr. B had to say about it.

in reply to

So, Yikes, what are your thoughts now on the Vein/RLS connection.

in reply to

I just cannot give all of the power and responsibility to one doctor. I think that Dr. B is brilliant, giving, a wonderful person. As for me, sometimes when I am looking for something- it turns out to be right in front of me the entire time. If I stood any closer, it would bite me in the nose..

I wonder how he has the time outside of work to research theories, examine other possibilities, converse with other doctors, even experiment on his own... He's just the best RLS doctor on the planet and that's a ton of pressure on him.. He would have to s-t-r-e-t-c-h himself so thin...

I am going to keep looking out there for new ideas..and when I see them, I will bring them home here to discuss with everyone. Why not? That's what the forum is for.. so it's an older study- I can't find the data to catch up with the "ten years down the road - how are they doing" on the vein/ RLS studies..so I am thinking that they either ran out of money to keep researching or the getting rid of RLS was a flop...My guess is as good as your is.

I don't think that it's a bad thing for people to start sharing what they find out there because it gets us away from our usual woes that go with RLS.. and we all like to hear even the craziest of ideas..brainstorm is a good thing!

in reply to

My guess would be the latter. But Dr. B isnt the only one who seems to think this. He has said none of the true RLS experts here in the USA recommend or believe that vein therapy has any role for RLS. So, he is not alone. I am sure there are others who do alot of work for us regarding research etc. I know Dr. B is good, but even he wouldnt be doing it all on his own.

Yep we discussed, pulled it apart, turned it inside out and back again and i think have a conclusion as far as we can go. :)

nightdancer profile image
nightdancer in reply to

Exactly what I said about the Sleep Foundation. they are not the most reliable source of info, as said by our good doctor. ;)

harryredwards profile image
harryredwards

strongly feel that this condition is due to a central nervous system problem not localised to the legs.It affects my arms and occasionally my head. medications that dampen down brain activity eg gabapentin and also anti- Parkinson drugs work in most cases.

Mopsy1950 profile image
Mopsy1950

Have had varicose veins for some years a few horrible lumpy ones ,I was told and looked at pamphlets about veins ,if I had them treated it would probably get rid of my RLS (Wrong ) I have been in for quite a few treatments of injections ,they inject a foam substance into the vein and wear compression stockings for about 6 weeks I think it was ,,I am still going through the process as it takes some months for the veins to mend I go back in March ,my veins are a lot better AND I thought my RLS was better at first but they are back full force and by this stage of my injections don't think it's going to help ,not a complete waste of money as at least my veins are looking better

Lilmo1 profile image
Lilmo1

I'm reading its only people with varicose veins in the study of rls so what then if you have rls but NOT varicose veins. What's the prognosious on that if known?

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