RLS before teenage :(

For everything and anything else not covered in the other RLS sections.
becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Ok Lets Do It

Post by becat »

RLS 89............
Yes, you can post it for all to see. Please post it on the thread I listed below. It's for Quality of life statements. Nadia and I will print it off and use it with your permission.

http://www.restlesslegs.org/phpBB2/viewtopic.php?t=536

About you and RLS.........Ok your 15. It feels like a long time when your in pain and lonely. Heck 15 can be lonely with tons a friends all around you.
Lets pick this apart a bit.
1. Yeah we think your brave cause you took the first step, you found us and you posted your story. Right? You did that. So this tells me your wanting change. This has always been the best way to find it. Taking action. Ok so you need a little physical activity, when you feel better it will happen. Cause you've been in your room by yourself and you'll wnat to get out. At 40 I've lost friends because I couldn't do what they could. But you know the friends I have love me anyway. If your not leaving the house much, you probably aren't active in school things....the flip side of that is no one gets to know you. All in good time. It will change I swear it.
So the biggest hug to you and lets learn to love you. The new you your going to create.
2. Your may have let your RLS define you, but so have many of us. Some of us had to learn that, understand that there are plenty of us that didn't come up with the whole bravery thing alone. We have given to each other, taken from wach other the strength needed to find our own wings. Honey, No one could have been more defeated by RLS than me. But Here I AM. I forcce the real possiblity of a good treatment. You may need MOm or Dads help. Find someone that will listen to this, KEEP TALKING. But the kicker here......you have to have the facts. EDUCATE yourself about RLS. Then you can say it before they do and it will hit them that you know too. It's the BEST thing. EDUCATE YOURSELF........read everything you can read. Talk to us.
When your sleep deprived and in pain, or your body constantly fights you, it's a wonder some people get out of bed. But we do and have, AND WILL. We are here to help each other get though this, good and bad. We'll be here for you too. BUT your going to have to do some things for yourself as well. The first is a good treatment. With that you'll find some peace in your body, your mind can start to process thing in the right way. By the way RLS is real and it can be difficult. Lets find a treatment needs to be your mantra. You have a voice and your will can carry this idea into a real thing that happens. Remember your education in this can make all the difference in the world in your treatment. DON"T LET RLS DEFINE YOU, YOU DEFINE IT. It happens.
3. Being caring is a great thing. Don't lose that. You'll be a wonderful man for having it. Friends may not understand what this is about. Family may not understand what this is about. Although, it sounds like someone in your family may have passed it on to you. Find out. That gives you someone to talk to in person about living with this. Maybe other medications you might take makes your RLS worse. Even thing you can buy over the counter can be bad for RLS. Check every angle here. Have blood work done. Serium Ferritin levels should be at 50 mcg/L for RLSers.
WE all talk about the fact that no one truely understands. Don't bombard people with facts, add things slowly when they ask questions. Try talking to your old friends. Apologize for being out of sorts and tell them "I just got caught up in this medical condition and lost my energy. If you wanna hang out sometime call me." Or make new friends. Help someone else. Volunteer for kids that are worse off than you. If your able to help just a little bit, you'll feel better.

YOU CAN AND WILL MAKE IT THROUGH THIS PART. No don't give up school, you may be the next doctor that comes out and cures us all.
RLS 89 it's a really long way to Finland from Texas, don't make me fly there to get you going on this. :D Your not lost, you've found us. We'll walk you throught. We can all do this together.
Good Treatment and EDucation :!:
((((((((((((((((RLS89)))))))))))))))))))

ViewsAskew
Moderator
Posts: 16584
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

RLS-89, if I am hearing you right, it sounds like you are not getting any effeective solutions that help you sleep and become rested. We are not doctors here, nor could we advocate any particular medicines, but I would be interested in knowing what your doctor is doing, in what medicines you are taking or have taken.

I've only gone a few months with almost no sleep. I have gone years with little restorative sleep because of the PLMD, though. After a few years, I was not able to work full-time, nor do anything meaningful. Besides being fatigued, I was clinically depressed. I would sit at my desk in front of my computer and think that the bathroom was too far away. If you are in this situation, it's essential that you find someone, other than us, that thinks this is inappropriate and that is willing to do what is needed to help you.

The www.rlshelp.org site had a doctor, Dr Mark, that will answer emailed questions. If you email him and describe your situation, maybe he would be willing to say what he would do.

Ann

sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Big (((((HUGS))))) for you

Post by sardsy75 »

Hi "89"

My dear friend, you have my sympathies and am sending you special (((((HUGS))))) to hopefully bring you some cheer.

I'm Nadia ... I'm 29 and i've had RLS since I was born. So I've literally been where you are. I too have the most severe form of RLS and try not to think about it getting any worse.

To this day I sometimes wish I had a chainsaw to chop off my legs just to be rid of the feelings.

I could go on and on but everyone else has done a great job of giving you moral support already ... all I really want to say is:

1. YOU ARE NOT ALONE
2. YOU ARE AMONGST FRIENDS HERE (age is no barrier when it comes to illness)
3. I COMPLETELY UNDERSTAND WHAT YOU ARE SAYING AND GOING THROUGH (and if I could wrap you up in a great big bear hug right now I would).
4. TAKE IT ONE STEP AT A TIME, ONE DAY AT A TIME, AND MOST IMPORTANTLY ... STAY POSITIVE!!!

PLEASE take note of Number 4. I cannot stress it enough and everyone who knows me on these boards will back me up when I say that it is extremely important for you to try and stay positive, no matter how down in the dumps you get. I have been to rock bottom and back numerous times, and for the past few times, the wonderful people on these boards have helped me come back out of the dark, step by step, day by day. RLS is definitely not an easy thing to live with, but with the friends you have found here, you have found a family of loving support.

Now, could you pretty please answer a few questions for me? It will assist both myself and the rest of the group in guiding you in the right direction for both treatment and support:

1. Who diagnosed your RLS? Family doctor or specialist?
2. Have you been prescribed any medication specifically for your RLS?
3. If yes, which ones, and what are your dosages?
4. If not, are you taking any OTC (over the counter) pain medications to try and help with the pain?
5. If you are taking OTC meds, which ones and how many each day?
6. Are you taking any dietary supplements at all? e.g. iron tablets or valerian to help with your sleep

Hmmmm ... on a hunch I just had a quick look at the latest RLS Foundation "Nightwalkers" Book to see if there was a RLS Group in your country ... and there is!

The contact details are:

Helsinki - Levottomat jalat-RLSry
Markku Partinen, MD, PhD
Email: markku.partinen@rinnekoti.fi OR markku.partinen@neuro.org OR markku.partinen@helsinki.fi
Web: www.uniliitto.fi
Personal Web: http://personal.eunet.fi/pp/make/

I suggest you check out Dr Partinen's personal site first. I did a search on him on Google (just typed in his name + MD) and he has been involved in a LOT of RLS Research, so he will understand and know what you are living with.

OK ... a few suggestions for you:

First off ... check out Jill Gunzel's RLS Rebel site. She has some wonderful ways of dealing with RLS when you aren't able to rely on drugs:

http://www.rlsrebel.com

The links below are to two very informative RLS documents:

1. RLS Foundation Inc. 2004 Medical Bulletin

http://beta.restlesslegs.org/pdf/2004_m ... lletin.pdf

2. An Algorithm for the Management of RLS (MAYO Clinic)

http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf

The next two links are to other part of this discussion board. Both have a whole host of links to other RLS sites and information about RLS:

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=94

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=549

With your schooling ... I know and hear what you want to do, but you are going to need at least your family doctor on your side to help you here. I would take a copy of both the Medical Bulletin and the Algorithm to him/her ... explain the difficulties you are having at school and really stress that you need their help. You also might have to bite the bullet and get your school principal on side as well. As much as they are usually the "big bad wolf" of the school, they are still human! See if you can get an appointment with him/her and explain what is going on. If you are able to get a medical certificate/letter from your family doctor/specialist it might help your school principal get the help you need from you teachers. You may be able to organise some alternative tutoring.

In the meantime ... see if you can get some Valerian. It's a herb which helps with muscle relaxing and insomnia. I use it, and have found that it does help. It comes in many strengths, so I suggest you talk to a pharmacist about which strength to start on. Hopefully this will help you relax and get you the much needed sleep you need to keep going at school.

I'm just throwing around ideas here which I hope might give you and idea of where to seek help.

As for those who taunt you and refuse to be your friends ... forget them!! It is THEIR LOSS NOT YOURS that they choose not to understand your condition and see past it and get to know the real you. Being so sick so young is tough ... I know ... i've been down that path and I can honestly say (sadly) that I have less than a dozen true friends who have chosen to see past my illness and get to know me for who I am. Don't let them rule who you are. You make your own life, and you need to make it a positive one so you can make a big effort at beating RLS. Be your own person, true to yourself. You are who you are, and if people choose not to get to know the real you, then remember it is their loss, not yours. Your true friends will show themselves in due course.

Oh dear, so much for not rattling on and on!!

I'll sign off for now and take me and my own wriggles for a couple of laps around the house.

Take care of you my young friend!

Lots of (((((HUGS)))))
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

RLS-89
Posts: 6
Joined: Sat Jan 22, 2005 9:03 pm
Location: Finland

Post by RLS-89 »

Well it seems that I should explain somethings here.

1. I have "educated" myself about RLS for about a year. Before I came here.
2. The only reason I found out that I have RLS was because I searched about it myself. Since I also have some back pain most likely it is congenital disorder. My mom always insisted that my leg pains were connected to that and because of this I didn't get any medical help until a year ago.
3. My diagnosis was made by a specialist in sleep disorders, but she only gave me prescription of Sifrol 0.18 mg which is a Pramipexlo product. It's funny that sardsy75 mentioned Markku Partinen. Because he is the best neurology of Nordic countrys and lucky for me I have I appointment with him 3.3.2005
4. I really don't have anyone to talk to. Sure I can talk to my mother, but since she was in a major car accident when she was 19 she now has four fragments in her back and horrible pain in her back and I feel bad about complaining to her about this since compared to her pain even my pain is quite weak.

And to answer to sardsy75 question about the medication I sometimes take. I some times take Panacod which is a prescription medication to my mothers back pain, but sometimes it's either that or to stay up all night. I rather take the meds.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Hi RLS-89

Post by jan3213 »

It's Jan

Wow! What a story for a young man 15 years old! But, as you can see, RL, you are not alone! I'm not saying that to make you feel like you should not complain--NO! I'm saying that in hopes that you will realize what a great group of people have already answered you and want to help you--THEY UNDERSTAND! And, so do I.

RL, I'm 57--old enough to be your grandmother. I have to say that I am very proud and impressed by the way in which you express yourself. And, I am so sorry that you have RLS and have already suffered so much. I, unlike Becat, Ann, and Sara, did not have RLS badly as a child. However, I do remember my mother constantly telling me to sit still and that I had ants in my pants. I'm sure I had RLS, but not to the degree you and others had it. My RLS reared its ugly head in my mid-30s.

I am a wife and a mother (not a grandmother YET). One of my twin daughters had growing pains and exhibits symptoms of RLS periodically, as does my son. As a parent, it makes me sad that I have passed this horrible thing onto those I love!

You have received excellent advice! I don't know what I can add, but ENCOURAGEMENT!

I'm going to address your latest post, okay?

1. First, it's great that you have and continue to educate yourself. We have all learned the hard way that you can't depend on doctors to know everything about RLS. We have decided (and I think I can speak for most of the group) that it is our RIGHT to a good quality of life and to get that quality in our lives, we have to KNOW MORE about what we are fighting. KNOW YOUR EMENY!! Doctors are human. Some are good, some not so good. In either event, I think to be forearmed is forewarned. You are fighting a war--not with your doctor, but with RLS. But, your doctor is a soldier in your army, and, since you know your body better and know how you feel, YOU should learn as much as you can so that you can be as sure as possible that your doctor is giving you the best possible care.

2. Most of us are self-diagnosed. That is not unusual. It takes courage to go into a doctor's office and tell him what is wrong with you. Let's face it. A lot of doctors have big egos--after all they have years of education in the field of medicine. But, you know your body and how it feels and you have the right to be assertive. After all, you HIRE your doctor.

3. It sounds like you're on the right track with your doctor! If you don't like him and you and he don't seem to hit it off, find another one!! Ask questions, come in here and ask us! I know from personal experience that you HAVE TO HAVE a good doctor--one who will listen and who will CARE.

4. Sometimes family members are the worst people to talk to about your condition. I don't think it's because they do not care! Quite the contrary. I think it is because they CARE SO MUCH and want to help you, but feel totally helpless. But, you have found us! Even though we are not face to face and cannot speak to each other, we all understand and many of us have become great friends. You have come to the right place, RL. There are many, many people here who are ready, WILLING AND ABLE to help you in any way they can. We have members who are great at researching a question or trying to help solve a problem for you; we have members who have a lot of knowledge regarding medicines and other kinds of medical help; we have people who have tried non-pharmaceutical methods that have helped them, who will share those ideas with you, and perhaps you will find that something like that will help; and, FINALLY, we will LISTEN, CARE ABOUT YOU, AND you can be ASSURED that everyone here understand completely what you are going through. This is a safe place to complain when you feel badly or the world is treating you rough. We WILL LISTEN!! It helps to "get it out" and not keep things pent up inside of you. Stress can be your worst enemy!! As far as friends are concerned, what is a friend anyway? Most of us have tons of acquaintenances--but most of us only have a handful of true friends. That's a hard lesson to learn, but you know what? When you find a friend here, and you already have you know, you have found a true friend. A friend is someone who is there for you through thick and think. Someone who likes you for YOU and doesn't base your friendship on what you can do for them! RL, we are a family here--YOUR FAMILY! Welcome!!! You've found a home!

Sincerely,

Jan
No one is alone who had friends.

sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

There is always someone here willing to listen!

Post by sardsy75 »

Hi 89

Well its 1.50am and my legs are driving me beyond crazy ... gotta luv this stuff!! For only the second time in my RLS life all I want to do is walk, but it's pouring rain outside, so I guess I'll be doing laps of the hallway, dining room and lounge shortly! Usually all I want to do is stretch the living crap out of my poor leg muscles (there's an art to stretching the nerve itself!) or "waggle" my legs back and forth back and forth at a great rate of knots until my poor hips yell "no more!".

I'm so glad to hear that you have been doing research ... learning about this disorder is what makes you stronger. Although there seems to be no hope, THERE IS HOPE. The more you learn, the more you can help not only yourself, but your doctors.

I'm also glad to see that you have an appointment with Dr Partinen! Make the most of it! If you think it would help, start a list of questions or a list of your main concerns that you'd like to discuss with him when you see him. The more you are prepared for a visit with a specialist like that, the better the session goes. If you can, take your mum with you to the appointment. Taking someone who lives with you to these appointments is often very useful as they are able to fill in some of the "blanks" or offer pieces of information about your RLS behaviour that you yourself don't notice.

Now for the Pramipexole - are you actually still taking it? If not, was it side effects that stopped you? or did you feel that the initial dosage was not strong enough? Pramipexole (or mirapex as it's known in the US) is one of the more successful drugs for treating RLS; however, it sometimes takes time to reach the right dosage through trial and error, and you may have to supplement it with another drug like a sedative or a narcotic/pain killer (like your mum's drug).

Since your appointment with Dr Partinen is still over a month awya, if I were you I would recontact your initial specialist and tell her what you are going through and ask if you can increase the dosage; and if not, if you are able to add something to it. As you have more than likely read, RLS is very much an individual syndrome and no two people are alike. But it is up to you. Make sure you tell Dr Partinen exactly what meds you have used, how long for, what strengths and what side effects you had. The more info you give him, the better he can help you. Definitely mention to him that you have found the meds that your mum has been prescribed help you sleep at night. Anything that helps you with your sleep gets a BIG "tick". I don't blame you at all for prefering to take the meds!

And BTW, you DO have someone to talk to! There is always someone in this group with an ear available to chew on at any hour of the day or night. Do not be afraid to get in here and let it all out. It is the best way to get rid of the stress that you are building up ... and stress is not good for you or your RLS.

I know you mentioned that you don't have any energy or strength in your leg and back muscles. I hijacked my dad's home gym set just over a year ago. I find that if I set it on the lowest setting, then doing gentle leg curls and leg stretches have helped keep the strength up in my legs. I've also found that it's helped strengthen the muscles in my back. Check out with you physio what your options are. You might be able to hire a small home gym set. Trust me, the more strength you have in your legs and back, the better you will be able to cope with some of the more severe attacks. One of the last things my new (and third) neuro mentioned to me at my appointment back in November was to keep the strength up in my legs. You are young and strong ... but you need to make yourself stronger.

Take care of you!!

(((((HUGS)))))
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

RLS-89
Posts: 6
Joined: Sat Jan 22, 2005 9:03 pm
Location: Finland

NO SPORTS

Post by RLS-89 »

Well it's now 1am and I'm still wide awake, but now I have few questions for you. First does anyone else have this kinda problem that when for example 16:00 you can fall asleep quite easy and your extremely tired, but when it's 22:00 and it's time to go to bed your "mind" is wide awake. You see usually when I go to sleep I'm very tired, but my "mind" or "head" is wide awake. It happens to me sometimes. I think it might be that because of the pain in my legs the sleep "leaves me" or "escapes" or "disapears" or whatever saying you got in your country and well it's even more difficult to get to sleep. Second one is not a question, but more like a statement. Concerning my previous reply where I told you about my fysical condition. I want to verify something. As I said I have BY BIRTH very weak back. It's some kinda disorder. I also have most likely BY BIRTH weak leg muscles. Ofcoarse RLS makes these problems even worse and since I'm ALWAYS tired I mean very tired somedays I'm so tired that I can't even play with my computer. So I can't do much physical exercises. And now comes the important part. DO NOT I REPEATE DO NOT GIVE ME ANY IDEAS ABOUT HOW SPORTS COULD HELP ME. DO NOT. Now I'm sorry my intensions are not to insult anyone or to be rude. Ofcoarse I appreciate any advice you can give me to help me, but not one word about sports or exercises. It really insults me. You see my dad is one of those who thinks that sports is solution for every thing and so is my school "physical training master" or sports teacher or what ever is the right word. And I dislike those kinda people. Sports is not a solution. I think thats everything now.

cornelia

no sports

Post by cornelia »

No, no, no, RLS-89, no sports-talk, though for RLS exercising for some people works fine and for other people, like me, not at all.
When I read your story about being tired all the time I was just thinking that you might suffer from Chronic Fatigue Syndrom. Have you ever been tested for it?
I myself was also tired all the time, but the CFS-test was negative. Now I know it was because of RLS. Now that I'm on meds the fatigue has gone.
Just wanted to let you know.
Corrie (also from Europe, The Netherlands).

GaAudrey
Posts: 31
Joined: Tue Jan 25, 2005 2:26 pm
Location: Dallas, Georgia

Post by GaAudrey »

Hi 89 :D
Hope you're feeling a little better today. And sorry you were offended at the talk of exercise or sports. I'm not sure, but I think from what I've been through, it isn't necessarily sports or exercise that's important, but movement of some kind that is. :? You see, muscles that aren't used, will break down and become even less usable. I only say this from experience. About two years ago I was so depressed and so tired I had given up. I wanted to die. I pretty much went to work and came home and got back in the bed. Except for walking to my car from my house and from my car to my desk, I didn't move except to go to the bathroon. The more I stayed in my bed, the weaker I got. I was like this for a year. I finally got some help with my depression and was sure I still needed help with my fatigue and RLS. They changed my RLS meds to requip and before I knew it with the depression better and the RLS lessened, I found myself up and around more. The more I was up - just things like walking to the mail box occasionally, the better I felt. When I would let myself fall back into the inactive mode, I would feel myself getting weaker. So please don't think anyone is trying to say you should join any sports teams or do any major exercise routine. But simply moving as much as you can will help strengthen your muscles and keep them from deteriorating. I'm new to this board too and I've found some great support. I think if you hang in here you'll find so much help and compassion you'll be overjoyed. I've enjoyed reading your post as much as anyone elses and hope you continue to stay active here. I was up all night last night with leg kicks and nightmares. I had one of those nights you talked about where I was tired but my mind wouldn't stop long enough to go to sleep. When I finally got so tired I passed out, my thoughts went to nightmares, then I woke up. I looked at the clock a dozen times last night! :cry: Hopefully tonight will be better for both of us! :D You hang in there 89! We're all here for you! Any time day or night! :lol: Audrey

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