What Ignites the First Episode?

Does anyone remember anything specific about what may have ignited your first episode of RLS? I think that some medI cation may have had something to do with my first episodes of RLS. It started with a horrible pain in the instep of my right foot. It burned, and pulled. I thought that I was having another episode of plan t AR fascitis, which I had suffered some years back. That condition had been helped by a shot in the foot and the purchase of some Birkenstock sandals which really helped and which I virtually wear all of the time.

48 Replies

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  • ...plantar fascitis...

  • Morning my first episode was definitely linked to my thrombotic illnrss. I only now have 30% of my blood flow to my legs. But must admit it was quite a few years till I knew what it really was. Hot restless legs Drs don't do well that's howcmine started.

  • There are some medications that can cause RLS.

  • The flow of blood to your legs is not a reason for RLS. RLS is not anything to do with circulation, its a neurological condition.

  • Right, RLS is a neurological condition, movement related sleep disorder, and it has nothing to do with circulation or blood flow. That is an OLD theory, and is not a consideration at all any more, no matter how many ads we see in the internet for "vein clinics", especially in the USA.

  • carol1948. when i had my second baby the doctor noticed a protruding vain he said best left alone unless you get any pain. Eventually my leg started to ach so i was sent to the hospital for an injection in my leg. i can,t remember how long after but thats when both my legs started with this awfull aching i am going back 37 years so doctor,s were,nt aware of RLS back then. so i put my RLS down to that injection or is it coincidence if it is thats a big coincidence

  • RLS and pregnancy are definitely connected. That is why more women than men have RLS.

  • My genes ignited my first attack lol

  • primary RLS ;) me too

  • you shouldn't have worn them so tight!!!! lol

  • Who are you talking to here in this reply? ;)

  • Pippin's Jean's!!! I thought it was funny

  • It was funny! ;) I totally missed that since I was really into researching the genes that day. Good one , though.......

  • Good question! I have theory, as I no longer suffer from RLS, that it probably all started for me with a car accident. But it eventually manifested into something worse. For some I believe it can be viral, trauma or even long term stress (which would include physical or emotional stress) Please go to (deleted as contravenes forum rules - Kaarina - volunteer) for the full theory as it is too long to post here. Maybe you can find some of the references of help.

    Cheers,

    Kelene

  • I would like to know how to look the deleted item up on the Internet. Under what heading or query could I look it up, please? You don't need to give me the stuff you're not allowed to post. Thank you.

  • Honestly I don't know what I am not allowed to post, as I am not selling anything, just telling it the way it was for me. "My story" is way too long to type everyday with every post. Unfortunately CFS and RLS is complicated and to just give you one or two links wouldn't tell the whole story anyway. I could give you an e-mail, e-mail me and I will send you the link. Is that allowed?

    I have deleted your email address for your own safety. You can private message on here should you wish to pass on your link to anyone interested. Kaarina - volunteer,

  • I do not know what search terms you could use to look up the site, I am sorry. If I can't give you the link it is pretty hard. I am, however, reworking my site to be more specific and not use the forbidden cure word. I'm hoping to have a new posting in a week or so. (I don't know how the private message thing works on this site either...which doesn't help! I will post again, maybe in a week or so. Cheers for now.

  • Kaarina told you , you can send a private message to anyone in this group.

  • Why are links not allowed Kaarina, or was that delete a mistake? links are pretty keynto helpingnpeople on these boards.

  • Hi Aspmama,

    Links can be very helpful and the link by Kelene was not deleted in error - as it was deleted from 5 different threads all made at the same or similar time. The link ended in cure and there is no cure as yet for RLS.

    Anyone wishing to see the link can private message Kelene on here.

    Kaarina

  • Exactly, we like to have factual information in the links, and RLS may go into remission, or "go quiet" sometimes. But , as kaarina says there is no cure, and no web site saying so should be posted. The RLS-UK is very good at providing the facts as we know them to this date. IF a cure is found, this is probably the first place, or one of the first places you will see it! ;)

  • Sorry I am not replying to the right link or thread of our conversation, my computer is slow and every time I go to navigate this website, it seems I get thrown about to where I don't want to be!

    We agree on many points: no I do not believe candidas causes RLS or CFS it is overrated for sure. I would have felt fantastic 20 years ago if that were the case; Yes, I have experienced ignorance and downright arrogance in people, and furthermore where you least expect it, with medical "professionals."; Yes, I agree "cure" is a word loaded with emotionally charged knee jerk reactions (for me no cure is synonymous with impossible and for you cure is another hack term for someone trying pedal a new elixir. I get it.)

    Why I even bother to be on the forum? Yes, to learn a thing or two, but mostly because when I was at my worst (and we are talking spontaneous crying in public-only once though-, not knowing how I was going to support myself that was legal and moral, because part-time minimum wage doesn't cut it and you don't get disability if you can't prove you are sick, I made a little deal with God. (If you are not religious please do not throw up...real or not, its still relevant to me. :) "I can accept that I may be the helpee in life, but if you could see to it to make me well, I promise to be the helper." So now that I feel better I must tell people at least what I have done to get to where I am: it will not be everyone's answer, but I cannot believe I am the only one. There will be some shreds of info. that will help.

    Yes, there is a method to my madness, so to speak, and I have been trying and trying to rework things in my head so that I can find the words to deliver it properly and not further add to the confusion already out there. Also because I do have family and work obligations I cannot keep posting as much as I would like. So for your convenience and mine I will rewrite a new page on my site, I will not use cure as the title, I will be more specific, and I will cut and paste it here on this forum if I have too!

    By the way I love your user name here too! "Nightdancer" thats great!. I am willing to bet you are a craftsy, artsy, out-of-the box thinker too! I will repost as soon as I can, although it may take me a week or so, so please bear with me. TTFN

  • WOW... !! If the volunteer read the webpage they would see that I include all of the links as reference material to help as I stress that RLS can be related to many factors. And I beg to differ...I HAD RLS. Now I wake up appreciating how calm and relaxed my muscles are every morning. Only someone who had RLS can really appreciate that! The only reason I put "cure" in the name of the page is 1) I feel cured and 2) when people google search for help they use the search term "cure" and my intention is for as many people as possible to google search this page even if it helps them only 5%...that's better than no help at all. Feel free to e-mail me at (your email address has been deleted for your own security - Kaarina). I will eventually further edit my page as one reader seemed to think I was saying Candida was a cure...I simply stated that it helped me somewhat (not 100%) because my gut inflammation fueled the condition...I even give the medical reference that proves it can happen.

    Oh, and volunteer person.....I love that you are volunteering just as I am by spending the time to post things on this forum. I hope you feel appreciated, because you are even though I didn't like being edited :)

  • Kelene, Kaarina has asked you not to post your email address on here. If anyone want to get in touch with you ask them to PM you on here. That is available to use for members on this forum. Kaarina has deleted your email address once already.

  • Please try to pay attention. no email addresses. That is what private msgs are for on here. Rules apply to everyone and as far as Candida, if you are referring to me, it is almost impossible for Candida to even grow to the point that you are speaking of. I know a doctor, a FORMER doctor, who diagnosed all of her patients with Candida, without examining them or running the charged for blood tests. I have all the court papers and her license was removed in many states in the USA. As far as the references, some of the sources are very questionable, have their own agenda, etc. And, I also agree with Elisse. Not sure how long you have been "cured", but as she said, if you stopped doing what you are doing, the RLS would right back. You are describing treatments, not cures, as there is no cure for RLS. Sorry, but it is true. Lot sof treatments can help,l and I can go 2 weeks sometimes without feeling a twinge, but that does not mean in any way, that I am close to curing myself, it means my treatments and meds are working for me right now. Sometimes RLS can go quiet, sometimes for months, with no obvious reason. So we have to take the quiet times when they happen and enjoy them. But, if I stopped my meds, or stopped the yoga, or the other things I do, I would have RLS 24/7.

  • I love your conviction! Just a few questions and points though. I would like to know what the test are for RLS hereditary version, as I have always thought there must be a genetic predisposition as there are for example weak hearts. Also, I have read the guidelines, which didn't help. Where is the rules section you are referring to? Also, as a note, I know Doctor who lives in Italy who cures people of their cancer (have a friend who saw him successfully) ...maybe not all cancers...but his success rate is right up there.) He lost his license because his treatments are natural. Even my brother who is a brilliant pharmacist understands how his treatments would work. Today he continues to cure people, and I have spoke with others whose family members sought him out and were successful in there treatments. Also, my mother has had "lifetime remission" of her disease scleraderma for which her treatments were also holistic: they told her she will die and "no cure." That is why I am hesitant to admit "no cure" there is a serious undertone of "no hope" by censuring the word. As for Candida, I am certain their are quacks out there, but if a Doctor says sounds like you have Candida and a natural treatment helps (not completely fix or cure) then I say it doesn't hurt to try, and you have only to gain as I did. Anyway, I would love to know what that test is, and would "lifetime remission" be acceptable?

  • Did your doctor diagnose you for RLS..? I would have thought you would know more about RLS than you seem to, if you have to ask if there is a test for the genetic type of RLS.

  • Nope, I gave up on Doctors years ago when the best answer I would get is "I don't know" and anti-depressants even though I was not clinically depressed. On my web page I do mention that I didn't even have a name for the condition: thought I suffered alone. I found the best answers through friends, trial and error and by researching what other doctors had to say who were "interdisciplinary" Doctors who practice way beyond my geological area. But I will research it on my own in case, as everyone seems to attest, that it may rear its ugly head again. I never heard of types of RLS even after seeing a number of specialists. I guess that's what forums are for, but since I no longer suffer from RLS or Chronic Fatigue I am either the luckiest person in the world, or I know no more or no less then than I need to. Thanks anyway.

  • Lots of doctors have that "I don't know" look because they really do NOT know. In med school, a doctor studying to be a GP gets 6 hrs of training in all sleep disorders, so we have to train them sometimes, and I have done my fair share of that! I now have great team of doctors, my RLS is mainly under control with the right meds and other treatments. It can be a lot of work, but finding the right doctor makes all the difference in the world. When you DID see doctors, what kind did you see? RLS is neurological, so sometimes a neurologist is best, depending on the doctor him or herself. OR a sleep specialist ,since RLS is considered to be a movement related sleep disorder. The right doctor CAN be found with lots of effort. I also have a pain control doctor, since my broken back has never healed right, and have been managing RLS groups for 20 yrs. Sine you are so curious, I had the first online support group for RLS, an email group, which is still going since 1996. I work with several RLS specialists, and have known then for decades, One who pulled out the RLS research in the 70's , Dr. Wayne Hening, may he RIP, was the one who spearheaded the genetic research. Several large families have been studied. As of now, you cannot go get a genetic test yet, but SOON. i know some people who participated in the family studies. So, there are two kinds of RLS, Primary and Secondary.

  • I also had no name for RLS when I started, just put "restless legs" in for my first search, since it had really ramped up to the point that i HAD to find out what was wrong with me. So, your story and my story are not that different. I found out there was a thing called RLS, and have not stopped for one day ever since. So, what were your RLS symptoms like? You have never described them, and if you have cured yourself why do you need to be in a support group? I bet you are learning things you never knew, obviously the genetic part, fro sure, you did not know about. Again, Candida is a VERY over diagnosed condition. Physically, it is almost impossible to get that much "overgrowth" to cause all the issues people seem to think it does. Just telling you what I have learned. trading "knowledge".

  • I was going to ask you what your symptoms were like, can you describe them. :)

  • Thats tough to describe...but at its worst it was like low frequency vibrating, you feel like running 20 km but know a 5 minute walk is tough, muscles don't relax, and when I "managed" my symptoms..I still had to get up early because of a numb arm, or leg....simply the opposite of relaxed. How about you?

  • Weird feeling in my legs, mostly my right leg. buzzing is a word i sometimes use. did you have the urge to have to move your leg/legs to get relief. ? Get up in the night to pace..? Never had or have any numbness in my arms or leg/legs. Did you ever have the criteria for RLS..?

  • the vibration thing sounds like RLS, but "numb" would have nothing to do with RLS, and could be a different nerve problem. Numb is not a word that describes RLS, not that I am saying you do not have RLS, but it sounds like something else was going on, too.

  • Yes, the numb thing happened much later. Could be related to my sympathectomy.

  • There is genetic testing that has been done in STUDIES for Primary/hereditary/genetic RLS in several large families. The genes were discovered and named in 2001, 2004 and 2007. Primary RLS is easy to spot, as in my family, where both my sisters, my mother, my 2 nieces, my oldest niece's kids, who are 8 and 11. If it runs in the family, it is primary or genetic RLS. Secondary RLS can have many underlying causes, like taking the wrong meds, end stage kidney disease, and so on, Inflammation is a theory right now, and SOME, very few, experts are looking at that. Lots of theories, but genetic RLS is REAL. Real easy to google it. Yes, I have conviction, and after 20 years of constant research, and having several mentors in the RLS field, I can say for SURE genetic RLS exists. That is not negotiable, as the genes are there to be studied.

  • Also you might feel "cured" but you are not. You have eliminated your symptoms by doing whatever you are doing. If you stopped what ever you are doing then you would still have symptoms. A cure is when whatever you suffer from is gone completely and cant come back. You have treated yourself, its better to call it a treatment for RLS, not a cure, as there is no cure for RLS only treatments.

  • When I get a chance I will read the forum rules. In the meantime I should note there is no cure for scleroderma either, and yet my mother who is now almost 80 shows no signs of its return since she "cured" herself. If RLS is an unfortunate accumulation of conditions which can be treated separately and naturally, then I would hate to deprive people of the hope that there is a cure at least for some.

    Feeling wonderful,

    Kelene.

    PS is "remission" acceptable?

  • YES, remission is the word you should use. I have over 5,000 people, and lots of them have had remissions for months or even years, and then the RLS comes back with a vengeance. And, it is all kinds of different people, from different geological areas, different diets, different meds, etc. It is not trying to take "hope" away to say there is no cure, it is the truth. And, we believe in always telling the truth. We give people hope in other ways, by supporting them, leading them to factual information, etc. Truth and honesty is always the best route to take in life and in RLS. But, I HAVE studied Candida "overgrowth" extensively, because of that doctor that got busted for more than false diagnoses. One always has to look for the agenda behind the information when it is questionable. This doctor wrote an article about RLS back in 2009, and this is a direct quote "If you people with RLS, if it exists, would just get your lazy asses out of your recliners and move around, you would not have RLS!". That is her exact statement. I am really good at email campaigns, and she was buried with emails from fellow RLSer's to the point where she took it down off her web site. ;) NOW, she admits RLS exists, and pushes magnesium as the cure all. It CAN help some people with the severity of their symptoms, and I would never tell anyone not to take it, since it is really safe to take. BUT, no one tells us to get our lazy asses out of the recliners!! We pace half the day and night as it is. Shows she knew and knows nothing. She only pushes magnesium because she has several books out and claims to be able to cure almost anything with mag and that is just ridiculous.

  • I remember very well. I had to have an MRI and when they injected the die or what ever they use, I had a severe reaction and had to be injected with a very high dose of BENADRYL, after about 2-3 hrs when the Benadryl started wearing off is when the RLS started ALL OVER MY BODY. I didn't know what was happening but I felt like jumping out of my skin. I never got another episode like that but then I noticed when I was in the car for a long distance drive I would start the restlessness but I STILL didn't know what was happening so I discussed it with my MD and he sentido me to a Neurologist who diagnosis me with RLS and put me on Gabapentin which didn't work and made me gain 25 lbs in 1 1/2 months and I got off that med and by mistake I had to take TRAMADOL for something else and low and behold I noticed how it worked with the RLS . I now have been on TRAMADOL for over five yrs. I take one 50mg pill at 5:30 pm and another at 11:30 pm and I'm good to go till the next day. I believe this is called type II because it wasn't hereditary but caused by another reaction that triggered it. Good luck.

  • I can't remember a time when I haven't had it. When I was young (teens and 20's) it only came on when I was very tired. It's just gradually got worse as I've got older. Now in my late 50s. My mum has it and my gran had it so obviously mine's hereditary.

    I take clonazepam with a side order of gabapentin. I'm scared to change meds as I don't know what would happen but these knock me out and I don't get much of an evening. I can't see a way round that though. I just have to live with it.

  • They say pregnancy will trigger it in some women. So that would indicate hormones perhaps, or pressure on the nerves in the lower spine?? I can't remember the first episode, but I do remember my legs jerking in a movie theater when I was in college, and I remember thinking at the time that it wasn't the first time I'd experienced it. I was worried about what the girl next to me might think!

  • The theory with women getting RLS during pregnancy, or having it ramp up, has to do with the excess cortisol, so yes, some hormone issues there. That is why more women than men have RLS. There are so many things to connect up, and impossible to find ONE cause right now.

  • Good to know. Cortisol is the stress hormone, and I'm sure everyone here knows that stress makes matters so much worse! Though I didn't know that cortisol production goes up in pregnancy. Thanks for the info.

  • Stress doesnt make RLS worse for everyone. I for one have never found stress ramps my RLS up at all. Just saying. :)

  • That is a hard question to answer, especially if you have Primary RLS. Sometimes some of us have had it literally since birth so there is not always a trigger. Secondary RLS is not inherited, so that a trigger COULD be found or remembered. I have primary RLS, but I DO remember when the RLS ramped up to the next level. My entire family has RLS , so mine is definitely primary, but Amitriptyline is the drug that really ramped it up when I was about 30. That is when i sought help, and that was early 90's, so we did not have all the online support groups we do now. I had to find the one site that was on line which was Dr. Buchfuhrer's and he saved me, literally. The amitriptyline made my RLS so bad, that was the one time I was literally going to off myself, but I had no idea what RLS was at the time until I got my first computer. So, I do not remember my FIRST feeling of RLS, but I know when it got bad enough to desperately look for help.

  • I first got it when I was about 10........I wonder about the measles virus when I was younger or a GA for a tonsillectomy??????/

  • Retren I remember very clearly my first attack.My mother was running short of francs ,it was when one was allowed to only take out of the country I think 35punds each,so she decided we would spend the night in the car.The combination of lack of space and the French bread which probably had bleached flour must have triggered it off.I was 9or 10 but prior to that had what was called growing pains

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