I am hoping this does not turn out to be a depressing inquiry, but do WED symptoms ever spontaneously improve? Or do they just always progress?
Right now my ferritin is 110, and my Vit. D is good as well. Is this as good as it's going to get? (barring some new treatment working, but even then it would still be there, just masked)
What made me think of this was the other post about de-myelination in RLS sufferers. Usually once the myelin is gone it doesn't come back in diseases like MS, but if de-myelination turns out to be the cause is the WED de-myelination reversible?
Are there any known causes/triggers of RLS/WED that are reversible besides low iron and possibly low Vit. D?
I'm only 35 and have had this for 4 years already. So lots of time for it to get worse but also lots of time to find a cure, right? Thanks for any info, good or bad.
Tracy
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
My WED symptoms started at around age 30 and I am now 62 yrs old.
Congratulations on such a good ferritin level.
I imagine that if there was a 'for certain' known trigger to WED symptoms and the trigger was removed then the outlook would look positive. However, it is never just that simple. There are differing causes of the condition and many triggers and we rarely know just what particular cause/trigger can hit us at any time.
Also if the WED was secondary i.e. being caused by another condition such as pregnancy, then the WED would hopefully go away once one was no longer pregnant.
My own feeling is that if we've got it then we've got it, and its a matter of dealing with the symptoms as effectively as possible.
It isn't a thought any of us like, is it? That this is as good as it gets....and it may get worse.
I've had WED for 30-35 years- since I was a teen. It used to get better and then worse, then better. Once it was daily? It's never budged. That's been 7 or 8 years now, I'd guess. I just assume this is as good as it gets until the next big breakthrough.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
I searched hard when I first was diagnosed to find out if anyone ever got better. I found one anecdotal account of someone's symptoms going away, but darned if I can find it again (not counting internet "cures"). Also there was a lady posting here a while back whose symptoms unaccountably disappeared for a while, but then they came back.
I think we don't hear from the people who get better. They're out there, they just have better things to do than talk to us.... At least, it's a nice thought haha:)
As my sleep specialist said to me when I asked if I would ever be normal again: "Well Beth, it IS a progressive disease."
Nuff said.
But I like what my GP told me just the other day, and I needed the reminder. I said "it's only going to get worse, it'll never go away" and she said "it might be cured". Words to that effect. I sort of brushed it off and said "you believe in miracles, then" but she's right, and I've said it here before myself: we can't know when the breakthrough will come; it could very well come tomorrow. Like insulin for juvenile diabetes, which used to be a death sentence. Like the polio vaccine. Like anti-retrovirals for HIV. It will happen some day for us too. Maybe tomorrow.
I feel like donating money to research now.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
I do recall reading that RLS waxes and wanes sometimes, but as the others have said, once you got it, you got it. But if you have RLS induced by, say, iron deficiency, then once iron levels are correct, it goes away. I've lived with it for almost ten years, and I think mine came from my back getting worse, but that's just what I think. Also, literature does say for my kind, that I must get my back straight to make it go away, but there's no fixing my wrecked-up back.
Codeine controls my RLS very well, it's nowhere near as hateful as it was before I was treated, and I tried the other meds and they did not work, so I'm big on recommending the opiate category of drug. But like yesterday, I was up and about getting radiation for my cancer, had to stop at concrete-floored pharmacy to get some special skin lotion, and all week has been like that, and when I came home and got on the couch, my legs were just about to let loose, I felt that awful urge, and I propped one up to see if my muscles were rippling, which the little fibers do when it's singing, and didn't see anything, so I just rubbed and squeezed them and put them up on a pillow and eventually my aching legs stopped. They were just tired.
"It's not how old you are; it's how awful you feel."
Iv'e had rls for around forty years it started when I was about ten as crawly feelings and I was a constant fidget twenty four hours a day.
About thirty years ago it went into pain and has stayed like that, in varying degrees, some bearable and some unbearable.
Presently it's ok codeine seems to keep it at bay when it starts......but I have noticed that any sweeteners send it into orbit within half an hour.
Have also found when sitting having my knees at the same level as my hips helps immencly.
So I guess what I'm saying is that for me it seems to have improved at the moment, or maybe I'm in more control I don't know.
But when it does start its more painful than its ever been.
I've also heard of RLS symptoms seemingly going into remission, or lessening to an extent before coming back again. However I think this is all anecdotal evidence, posited by patients more than anything. So it should be taken with a grain of salt.
It has always been my experience that RLS/EKD symptoms progress, and do not regress, spontaneously or otherwise; with the exception being the RLS/EKD having been caused as a symptom of an underlying medical condition.
For Primary, Familial RLS/EKD I have never seen a report that credibly backs up claims of remission or the condition totally going away.
When I was diagnosed, shortly after turning 21 I experienced what would probably be called an extremely fast progression. I simply had this weird problem with one of my legs at night where it would want to twitch and kick on its own, although at that point I could physically stop it as I pleased.
Within less than two years, it progressed rapidly to Primary Refractory RLS that could only be successfully treated with opiates, with symptoms 24hrs a day, and symptoms in my arms, legs, and torso/spine.
"He said one of the biggest challenges for physicians is discerning whether a case of RLS is primary or secondary in nature. Primary RLS means the symptoms cannot be traced to another cause, whereas secondary RLS may be triggered by conditions such as diabetes, renal failure or an iron deficiency.
There are compelling data to suggest that RLS is an inherited disorder, with more than 50 percent of the sufferers having a family member that also has the disorder. Although RLS can affect individuals at any age, the incidence of RLS appears to increase with age. "
This statement from the penn state site disturbed me
Treatment is aimed at reducing stress and helping the muscles relax.
I cringe the same way when I see yoga advice for RLSers obviously written by someone who has only read about RLS (and not read thoroughly): they recommend all sorts of forward bends and poses that relax all the muscles in the front of the legs. You can always tell someone is not familiar with RLS/WED when they recommend relaxation.
I am not suggesting that the penn state facility can't treat RLS/WED properly. Probably a non-expert wrote the material for the site, and the physicians who actually treat the disease are more knowledgable.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Look through their research....one researcher is focused on brain Iron levels, myelin, etc. IV Iron therapy... and that's the article I really thought was good. If I find it before you do I will post the link.
Last edited by Laurachrissy on Sat Oct 15, 2011 2:12 pm, edited 1 time in total.
P.S.S.
search "fred"....at Penn State. Dr. JR Conner is the one that the article posted here recently regarding the brain myelin is who I was very interested in reading his works.....you can get them here.
Badnights,
That statement from Penn State really blows my mind. Stress and relaxation? That's prehistoric thinking. How in the HELL are we going to relax, when that's what sets it off??? And you know, SO many times people say, "Doc, I got a problem," and they just act like you're a mental patient and have stress, particularly women. Wailing women, I guess is still a cultural view of the female. We may cry easily because we're emotional, but when it comes to standing up to pain, well, I can testify that I only wail when I absolutely cannot bear pain another second, I'm BEYOND serious pain. I have the painful RLS, and I also have a very painful back from my car accident. Either one can really wreck my day, and both have driven me insane a time or two. I still remember my oft-mentioned story that was on this website, about a wife whose husband had such a hard time with RLS, it went untreated and he went around the bend and wound up in the nuthouse with RLS.
I was recently infuriated when my neurologist declined to increase my medicines, altho this has to do with my back rather than my legs. "Well, you're managing for now, so we'll wait on that." DANG. I thought what in the world do I have to do to prove to you that I'm miserable? My back has been absolutely killing me this year, and this isn't helped by all this stupid cancer treatment stuff, but I'm just two weeks away from it being all over, I shall be well, and so next time I see him, which I'm planning on getting an appointment sooner this year, I'll try again with that doc. I remember a few years ago coming to my psychiatrist and crying over how no matter what doc I go to, they don't want to take my back discomfort seriously, which RLS isn't a whole helluva lot diff. If it weren't for her, I wouldn't have ANY medicine for my back, which I stupidly turned over to my neuro, and now he's being stingy.
Ohhhhh, the Penn State thing makes me SO mad. If I weren't so distracted in my thinking from everything, I'd write them a note, which wouldn't do any good nohow, I suppose.
GG
"It's not how old you are; it's how awful you feel."
badnights wrote:This statement from the penn state site disturbed me
Treatment is aimed at reducing stress and helping the muscles relax.
I don't quite understand the statement about "muscles relax". If it were as simple as that wouldn't muscle relaxers be the cure? Idk, feels like my nerves are in overdrive; but why?
Did any of you read the other published reports from the links I posted concerning IV iron, lack of iron, etc. ? This gives me hope. This sounds like, yes!....it is something that could lead to a cure.
I really wish relaxing muscles would control RLS and PLM's. My symptoms are getting worse; less controlled, and I'm scared what is it gonna be like when I'm old and perhaps bed-ridden. It's a terrifying thought.
