New to RLS

[Peg]

Hello, I was recently diagnosed with RLS and given 10 mg of a anti-depressant to help me sleep. The creepy crawly feelings have definately turned to pain and when I am more active, at night its worse. Do other people experience this? I cannot seem to get away from the pain and "soreness" at night. Its just in one leg. How do other people cope with this?

Peg

[dwnstat]

Hello, I was recently diagnosed with RLS and given 10 mg of a anti-depressant to help me sleep. The creepy crawly feelings have definately turned to pain and when I am more active, at night its worse. Do other people experience this? I cannot seem to get away from the pain and "soreness" at night. Its just in one leg. How do other people cope with this?

Peg

Hi Peg: My name is stefani. I have also been diagnosed recently (last week) but have living with pain and creepy crawlies for about 3 years. I have been told in the past it was all in my head. My rls affects my whole left side. I cope by going day by day. I have been trying to get involved into a support group but the one in my area is temp. not meeting. All I can really say is read, read, and read some more. That is what i have been doing. You may e-mail me anytime @ dwnstat1994@yahoo.com
Keep Stefani

[Lana]

I have had RLS since 1990. I remember having trouble getting to sleep ,on occasion, so I got into the habit of taking aspirin. Aspirin seemed to help. Today my RLS is an everyday occurrence and at times, if I am sitting too long in one position, it can drive me crazy. I am taking a drug called Sinamet and it is a dopamine drug, cardodopa and levidopa. I cannot go to sleep without taking Sinemet though I am experiencing a reaction where it takes a higher dose of Sinemet to calm down the RLS than when I first started to take the drug a year ago. I also benefit from Vicodin. I have back pain due to arthritis and scoliosis so I take 1 dose of Vicodin every night. I had also read that vicodin also helps.

[Peg]

Lana, I have started walking at night and I remember my doctor telling me that the more active I am, the more RLS will aggrevate me. Is this true for you? My son was married in August and I was so busy and the ache in my leggs at night were awful. I would sit and rub them then take aspirin or Advil which would help. It seemed the only way I could sleep was to take 3 advil, every night. I think it relaxed me. It does not bother me every day but I have read that it gets worse. Mine bothers me alot when the weather changes. I asked my dr if I had arthritis but she said no, it was RLS. She said if it got worse I would have to take a anticonvulsant drug? I am uneasy about that.

[sardsy75]

Peg & Stefani

Welcome to the mad, mad world of RLS

I'm Nadia. I'm 28 and I lurk about in Central Queensland, Australia. I had undiagnosed RLS as a child, which eventually "went away"; only to reappear with a vengance in June last year. I'm the most chronic case my neuro & GP have ever seen (yay!) and was recently forced to quit my job in an attempt to get my legs (and brain) back under control.

Stefani's advice is right: read, read and read all you can about RLS. Below are some links to some excellent RLS sites, including medications & treatments:

http://www.wemove.org/rls.html
http://www.jmjudson.com/rls.html
http://www.jmjudson.com/medications.html
http://www.rlshelp.org
http://www.rlshelp.org/rlsrx.htm
http://www.rlsrebel.com
http://www.sleepnet.com/disorder.htm
http://www.rls.org

You might find it helpful to print out any information you think is important and put it together in a folder. If you're GP/Neurologist doesn't know much about RLS, they should be open to learning about it and helping you out. I took my "bible" with me to my GP last week and he was more than happy to read up on some of the different drugs we can try out.

Treatment-wise, you will find that you are your own "guinea pig" as no two people with RLS are the same and everyone is taking a different "cocktail". Patience is the key to finding the right combination.

Peg, there are a myriad of painkillers on the market which may help with the pain you are experiencing. Codeine based painkillers are often the most effective, but they can be addictive. You should be under the guidance of your GP/Neuro for any long-term treatments.

At the moment, I'm on 4mg Cabaser (cabergoline) per day plus 3 x 25mg Sinequan (tricyclic antidepressant) to help me sleep. Up until last week I was also taking 3 x 100mg Madopar (levodopa and benserazide) until I realised that it was the cause of all my problems and I was going through major augmentation.

Non-drug wise I have found the herb Valerian to be useful at night for helping me to relax. I've also found that massage and CranioSacral therapy (working with the central nervous system) have helped a lot, particularly with improving my sleep. Stretching is also good and I have a small home gym set which gets a major workout on the bad days.

Things to avoid are "bad" stress, all types of caffeine (although some RLSers can tolerate it) and alcohol (which can react with drugs).

There are a couple of excellent support groups on the web at yahoo groups: rlssupport and earthgirlsrlsclub where you will find many other RLSers who can give you advice or lend an ear when you're having a rough time.

Hope this info is of some help to you.

Nadia

[sardsy75]

I have had RLS since 1990. I remember having trouble getting to sleep ,on occasion, so I got into the habit of taking aspirin. Aspirin seemed to help. Today my RLS is an everyday occurrence and at times, if I am sitting too long in one position, it can drive me crazy. I am taking a drug called Sinamet and it is a dopamine drug, cardodopa and levidopa. I cannot go to sleep without taking Sinemet though I am experiencing a reaction where it takes a higher dose of Sinemet to calm down the RLS than when I first started to take the drug a year ago. I also benefit from Vicodin. I have back pain due to arthritis and scoliosis so I take 1 dose of Vicodin every night. I had also read that vicodin also helps.

Hi Lana

From your post, I have a distinct feeling that you are experiencing augmentation with the Sinemet.

With augmentation, the intensity of the RLS symptoms can increase, can onset earlier and even spread to the upper limbs. Raising the dose of Sinemet may temporarily help the augmentation symptoms, but in a short while the increased dose just leads to further augmentation.

The following link will provide you with more detailed information and possible alternatives:

http://www.rlshelp.org/rlsrx.htm

It is often helpful to have a drug "holiday" on a different drug. It may only be for a few weeks, but you are then able to go back to the same drug. You really need to talk to your GP/Neuro about what you are going through. With 24/7 symptoms (you have my sympathy there!) you really need to be trying to find something else that works.

Tomorrow will mark the first week since October last year that I have not had ANY symptoms of RLS. It's taken a looooong time and lots of trial and error and patience to get this far; but it is achievable!

Take care
Nadia

[cj]

Greetings! I have been dealing with this since I was 9 (I knew it was time for bed because my legs would jump). So for 30yrs I have been asking "what is this?" and "how do you make it stop?" No one took this problem seriously. Its usually my right leg but the left leg will sometimes join in. And my legs seem to be hot when this happens. My rls is involuntary and extremely annoying! I have associated cola and coffee with nights of intense rls. On those nights I'll get up and walk it off (what a pain). When I feel my mind getting tired or sleepy, thats when my legs start to "act up". This happens sitting and even (though rarely) standing. Calcium (drinking warm milk) seems to help. Has anyone asked their parents or grandparents if rls affects them? Is this just the brain over acting? sending bad signals? You know, I never thought I would ever get any real answers or help!

[Guest]

Greetings! I have been dealing with this since I was 9 (I knew it was time for bed because my legs would jump). So for 30yrs I have been asking "what is this?" and "how do you make it stop?" No one took this problem seriously. Its usually my right leg but the left leg will sometimes join in. And my legs seem to be hot when this happens. My rls is involuntary and extremely annoying! I have associated cola and coffee with nights of intense rls. On those nights I'll get up and walk it off (what a pain). When I feel my mind getting tired or sleepy, thats when my legs start to "act up". This happens sitting and even (though rarely) standing. Calcium (drinking warm milk) seems to help. Has anyone asked their parents or grandparents if rls affects them? Is this just the brain over acting? sending bad signals? You know, I never thought I would ever get any real answers or help!

Hi CJ

I realise that you are probably madly in love with your caffeine, but, if you want some peace at night.....give it up! I haven't had a can of Coca Cola since July last year (let alone a beer!), because if I did, I'd pay for it for about three days.

My RLS is familial. It seems to go in threes in our family. My maternal Grandfather, his brother and one sister all had it; my mother, one brother and one sister all have it; and i'm the lucky first one out of my sister and cousins to get it.

Yes, it's "all in your head" We have a problem in that the specific receptor for iron transport is rather lacking. When that mechanism malfunctions, only enough iron is "delivered" to the area of the brain that sends the messages to our legs to keep the cells alive, but NOT enough to send the right messages "down south" to our toes! That short-delivery is what causes us to wish we could chop the dang things off!

The links that I put in my previous post are your best place to go to learn more. I've started my own RLS "Bible" which I have highlighted and underlined all over the place.

Take care
Nadia

[Anonymous]

Hi. My name is Amanda and I'm a 30 year old female. I never knew that RLS existed until yesterday when someone called me to ask about it (I work in the health insurance business).
I don't have a bad case of it (if this is what I have) but it is bothersome. Last time I was at the movies and I could barely watch the movie because my legs were bothering me so bad. I didn't want to get up so I just sat there moving my legs around the whole time trying to make it go away.
I've had it since I was little, and my grandmother had it also but I don't think she was ever diagnosed with it or got any treatment for it. Does anyone know if it gets worse as you get older? I've probably had 5 episodes in the past 2 years.

[kanne]

I have been suffering from RLS for the last 5 years and have had a terrible time with my different doctors. I have tried every medication (except valium) and found that esvicodin is my only consistent relief. I would like to know if others have had the same problem getting an MD to take them seriously. My RLS is progressively getting worse and I am tired of having to explain myself every time I see a doctor. Thank You for any suggestions.

[Rubyslipper]

Finally got here and started to read all your messages. I, too, have had RLS for quite awhile. It seems to run in my family, with my Mom suffering from it and now maybe my oldest daughter I don't have problems like some I know who are unable to work because of this misery. But I do know what it is like to be miserable at the movies or on car trips and there have been many sleepless nights. I have discovered the power of support groups such as this and hope others want to share with me. I am going through a small depression right now. The medicine seems to be working but I am so TIRED all the time! I work 10 hour days (four a week) and all I want to do when I am off is sleep. I am 48 years old and always have been active, but right now I feel old and fat I even seem to be getting liver spots on my hands Anyway for the newbies here, don't let anyone dismiss your problems. If one doc doesn't take you seriously, try another. If one medicine doesn't work, keep trying. I am on Nuerontin, Mirapex and Wellbutrin. Caffeine kills me and I really need to watch the alcohol. (Love my beer!) My doctor also seems to think maybe I have PN and I go to another doc next week for a possible torn rotator cuff. So hang in there everybody, sleep well tonight and let me know how you are.

[Calgary Cowgirl]

Hullo all -
This is the first time I have been in the chat group and throughly enjoyed reading all your notes - it makes me feel I'm not alone. I have had RLS for a minimum of 20 years - my mother has it as well but not as severe as me. I am 46 years old and am only now learning how to deal with it. I believe I have discovered one area that maybe of some help. I found that whenever I became over tired my legs, more my right and more in the knee area, would become worse. As it became worse I got less sleep and a vicous circle would ensue. Lack of sleep brot on the lack of energy which brot on the depression. My doctor prescribed Effexor - 75 mg to start. As my depresssion worsened the dosage of my Effexor increased - to 150mg to 300mg. I was still depressed and my legs seemed to be getting worse. Not sleeping at all - my job suffered. Adding to the fun of all this I found it hard to relax and consequenlty never felt at peace. Watching movies, reading in a chair, playing piano - notta chance.
Then I started to educate myself because my doctor wasn't any help. Since there was no clinical proof and therefore no known medication - I was just a drift. I started to read about the receptors contained in depression medication, and that if they are too high you can increase or negatively effect your RLS - sorry I'm not explaining this very well. Any medication over 125 mg can have a negative impact. Well, today my dosage of Effoxor has gone from 300mg down to 75 mg and I truly am feeling some relief at night. I do have to be in bed before 10 pm becus if I get too tired my legs really act up. Now the other positive thing is a heavy sleeping medication that really zonks me out, which has brought the energy back to my life and my depression feels almost non-exisant. Life is almost really good again. If someone wants the name of the sleeping medication feel free to email me at edergm@shaw.ca - love to help.
Couple other things that work for me - educating myself big time - as I have gone into my doctor with possible answers sometimes he didn't have. The anti convulsant med is not that scary but it didn't do a whole lot for me. I took Mirapex, I'm no longer taking it. Leg lifts at bedtime. Try 30 each leg with good relaxing and breathing in between. Raise your legs on a pillow in bed - elevated at least 24 inches. A warm bath not a hot bath - extreme heat can aggravate my legs . Set up a nightly routine and be selfish and stick to it. Alcohol does affect my legs negatively, even only 1 cider, darn. Do everything you can to assist yourself in getting to sleep - nothing to eat after 8 pm - restrict fluid intake, no scary movies or computer work - it can stimulate us. If tension or anxiety is bad go for a walk, slow gentle walk. Get out of the house and change your pace and scenery.
I am also in the process of having my rather wicked varicose veins dealt with. I haven't heard anyone speak of this being related - my surgeon felt there was a big relationshiop between varicose veins and RLS - she also recommended wearing support hose 24/7 with a minimum compression of 15-20 somethings. Your pharmacist can assist there.
As far as pain medication - I have never found one to help - I have a freind whose is a doctor and he takes Tylenol 3's and it gives him some relief - so we are all different.

Hope this helps - sorry it's so long...

[Calgary Cowgirl]

Forgot to mention this.
If your doctor has not been able to provide any significant help - you should be referred to either a neurologist to eliminate any nerve disorders, nueropothy and such or head off to an internist. They will ensure that everything else is ticking and tocking in your body. RLS folks need to have certain blood tests done - your ferritin levels (iron levels) need to be checked to rule out any anemia. Also your magnesium levels should be checked and your thyroid as well. Have X-rays done of your legs to rule out any other conditions as well. You have to rule out before you can begin treating. The info that is available on the net is incredible.

My pharmacist explained that an iron supplement should come from an animal source not a plant source. A plant source of iron has only a 17% absorption rate of the necessary elements while an animal source of iron can be as high as 60% - those numbers may be shaky but the point is made. Keep taking a liquid liver animal extract - ask your pharmacist. Magnesium supplements before bed have helped others I know with RLS. But do not see a GP over RLS - you need to go a specialist. Go now! we're talking quality of life here!

[sardsy75]

I have been suffering from RLS for the last 5 years and have had a terrible time with my different doctors. I have tried every medication (except valium) and found that esvicodin is my only consistent relief. I would like to know if others have had the same problem getting an MD to take them seriously. My RLS is progressively getting worse and I am tired of having to explain myself every time I see a doctor. Thank You for any suggestions.

Hi Kanne

If you've tried all the local doctors, is there a local sleep clinic at one of the local hospitals you could try? Have any of the doctors referred you to a neurologist? If not, there's no harm in asking for a referral.

Otherwise, when you see the next doctor, go armed to the teeth with information. They might not be taking you seriously because they don't know much about RLS. Keeping a diary of your RLS symptoms, sleep patterns and what drugs you take each day can be a mine of information after only a few weeks. If you go to each of the links in my post dated 18 March 04 and print off the information you find helpful, take it as well.

Stay positive & take care

Nadia

[sardsy75]

Finally got here and started to read all your messages. I, too, have had RLS for quite awhile. It seems to run in my family, with my Mom suffering from it and now maybe my oldest daughter I don't have problems like some I know who are unable to work because of this misery. But I do know what it is like to be miserable at the movies or on car trips and there have been many sleepless nights. I have discovered the power of support groups such as this and hope others want to share with me. I am going through a small depression right now. The medicine seems to be working but I am so TIRED all the time! I work 10 hour days (four a week) and all I want to do when I am off is sleep. I am 48 years old and always have been active, but right now I feel old and fat I even seem to be getting liver spots on my hands Anyway for the newbies here, don't let anyone dismiss your problems. If one doc doesn't take you seriously, try another. If one medicine doesn't work, keep trying. I am on Nuerontin, Mirapex and Wellbutrin. Caffeine kills me and I really need to watch the alcohol. (Love my beer!) My doctor also seems to think maybe I have PN and I go to another doc next week for a possible torn rotator cuff. So hang in there everybody, sleep well tonight and let me know how you are.

Hi "ruby"

Stay positive!! I do know how you feel....literally....and at 28 have had to give up full time work because of my dang legs. When I WAS working, I was somehow doing 10-12hr days at work 5 days a week, plus work at home at night, plus weekend work, and averaging 1-3hrs sleep a night. (No wonder I ended up in hospital, huh?!) For months, I was so exhausted I didn't even have the energy to wash my own hair, which is a pretty sad situation

Caffeine and alcohol have been off the menu for me since July last year (and i'm sooooo hangin out for a Coke!) otherwise i'd be goin crazy for days.

I am concerned that you are trying to push yourself with your work situation. You must keep your health the number one priority (I learnt that the hard way). Your boss and co-workers should be giving you support, and if not, why not?

I eventually solved my sleep problem when I asked my GP for help after getting nowhere with my neuro. After getting the third degree about my sleep hygiene, we discussed all the options and eventually settled on a tricyclic anti-depressant (sinequan). NOTE: tricyclics can trigger RLS symptoms in some patients - luck of the draw. We went with this because I didn't just need something to help me sleep, I needed something to "switch my brain off" first, otherwise I was caught in the nightly cycle of concentrating on settling my legs, then concentrating on relaxing, then the legs would go again, and so on. I'm now averaging 7hrs deep sleep a night and feeling much much more energetic. I have a small "hangover" effect in the mornings, but otherwise I'm wide awake and alert for the day.

I've been my own guinea pig since day dot, and am hoping to pin my neuro down for a mirapex script when I have my next appointment in April (mirapex is not yet available commercially in Australia).

Take it day by day, enjoy the good days, learn from the bad ones. Keep your health as priority number one and don't over-do-it! I hope all your doctor's visits go well.

Take care

Nadia