newbie!

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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Guest

newbie!

Post by Guest »

wow,
i'm 38 and have had rls since i was young (the earliest memory was when i was 7).
i never knew it was rls untill NOW!! (like most people it seems) after chancing to see an advert about restless legs that caught my eye. so a quick search on the net and here i am feking relieved that it is not just me crazy mind!!!

i thought it was just psychological "itchy achy pains" (as i called it) in my left leg, causing me to have to shake my lower leg furiously, in the car, sitting still or in bed, untill the pain from leg fatigue took over the feeling. its crazy that this leg-fatigue pain hurts... but it felt a whole lot better than the itchy achy pain i had!!!! the rls seems to come and go, sometimes i get it most of the day and night other times i dont get it at all for a month or so!! wierd!!

so because i thought it was just me i never told anyone, (not even my parents, although i know they got annoyed at my shuffling foot alot!!!) i used to try to ignore the feeling, but it never worked as the feeling just got worse untill i couldnt handle it and offi went with the shaking!!

nice to be able to share with others about this annoying symptom!! i guess i will now go to see the dr and see if he can offer anything... im not sure though if i should take meds or not. its hard to know when you should. i mean ive coped with it all my life, so far?! i think i have more minor symptoms from browsing some of the other threads!! any input or suggestions about this would be useful?
trev

Guest

Re: newbie!

Post by Guest »

Anonymous wrote:wow,
quick search on the net and here i am feking relieved that it is not just me crazy mind!!!

trev


feking is a spelling error, supposed to say 'feeling' NOT the swear word it sounds like, just incase anyone is offended!! :D
trev

ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

Hi Trev,

If you become a member, you can edit your replies :mrgreen: . Then when you accidentally swear at us it using an accent, you can change it!

That is an incredibly long time to go without knowing what it was. Glad the advert caught your eye; most of use are so relieved when we can name our hell. In response to you question, you might want to try this thread

http://www.restlesslegs.org/phpBB2/viewtopic.php?t=1068

It lists many other places to look on this board for great info, and includes a list of what to do before you decide to start meds.

Hope it helps.

Ann
Last edited by ViewsAskew on Tue Aug 02, 2005 3:03 pm, edited 1 time in total.

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

ok thanks have now registered.

thanx for the info i will look at it and see if its a good idea going on meds or not.

i guess it is good to see the dr anyway as there are levels that need checking anyway (?ferritin etc) is that correct?

the site is a bit scary, people saying things are getting worse with age and stuff...not sure i want to read around the subject too much, the less its in my mind the better i feel i can cope? my heart goes out to the more severe cases i have read.

QUESTION-have people found that since they have become more aware of it and its more in the front of their mind that it seems to get worse or is it that the pain is there more at times and therefore your thinking about it more because of this... a little bit like the chicken and the egg question i guess.

i ask this question because when i used to think it was just me (psychological) i now have it in my head from all those years that it goes away for a month or so because i dont think about it and thinking about it is the thing that brings it on.... so it used to make me feel very annoyed at myself for bringing it on myself.. does that make sense.

what are peoples experiences ?

ViewsAskew
Moderator
Posts: 16175
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Trev, I can only speak from my experience and mine is a little different. My grandmother and mother have it, so I've always known about it. Even before we knew what it was, we knew WE weren't crazy even if the doctors thought we were! :mrgreen:. Since my grandmother's was so severe, she had a diagnosis at least 20 years ago and we knew the right name for it. My mom's and my sister's is quite intermittant and mild. They can always go to sleep with it, and neither have PLMD.

So even though RLS is progressive disorder, is doesn't always get worse for everyone and people often have periods of remission. I've watched this with my family. It tempers my fears in terms of my future. I know that what happens to other people isn't necessarily what will happen to me.

In terms of learning more, for me it's had the opposite effect. It has made me more comfortable and given me strength because I feel more in control. I am much less concerned and afraid with each new article I read. Without this knowledge, I'd be at the mercy of doctors, and experience shows that many are still not up to speed on this disorder. Learnign all that I have and reading these posts has allowed me to switch doctors multiple times until finding one that listens to me, doesn't make me take things I don't want to take, and is on my side.

My personal opinion is that drugs are not appropriate for eveyone. My mom and sister have never taken them and probably never will need to. It's the quality of life issue. When, and only when, your quality of life is affected and you start losing things important to you--intimacy, time spent with friends and family, getting to work on time, the ability to function well at work, etc.--that you need to decide to do more than you are. And, for some, it may be that lifestyle management is all that you have to do for a long period of time.

Ann

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

Thanks Anne,
its soooo nice to be able to finally chat to people with the same syndrome. It feels like an incredible release!! so sorry if i ask stuff thats been asked thousands of times before.

your advice was helpful thankyou....i think i'll keep going coping in my own ways as i am without seeing a dr and see how it goes.


is there any evidence that the illness only passes on from/to females... (maybe some kind of gene thing) it just seems that in the forum its only females so far that i have read have received this from their parent. im saying this as a male with a 5yr old daughter (who shows no signs thank god)and baby on the way!

Ksxroads

info power

Post by Ksxroads »

My husband came home the last week and said I KNOW what is wrong, I heard you described on NPR's all things considered program...

Yesterday I looked for info and sat here and cried with emotional relief! Have just gone through another seven night period. The mind slept last night only due to exhaustion.

My daughter has the same problem.

For YEARS I have tried to explain to doctors, the same routine others have gone through so no need to explain. Fibromyalgia... even though symptoms may be similar I did not have problems with touch... massage, etc seemed to help relieve the spasms and feelings temporarily.

Most medications I received anti depressants, sleeping pills etc did not work, made it worse so I would discontinue them.

Have printed out some info, and my husband said he is going with me to the doctor... Hope Hope Hope!

The only time I have felt RESTED in years was last year when they did the upper and lower scopes and had me under general anesthesia...

Sometimes it helps to finally belong... Hazel

Heronak
Posts: 113
Joined: Mon Apr 26, 2004 3:45 pm
Location: Juneau, Alaska
Contact:

Welcome

Post by Heronak »

Hazel,

It's such a huge relief to know we're not alone and that we're not crazy. I'm glad you found the forum and so pleased your husband is involved - it's a family thing, for sure, affecting all our loved ones.

Read all you can here, you'll find a wealth of info and experience. No two people seem to find relief in the same way, so trial and error takes awhile. Make sure your doctor knows about and has experience with RLS, or is at least open to learning. Many of us have found that WE are the experts more so than our doctors, and we can work together with our medical practitioners to find solutions.

I wish you & your family the best,

Heron

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

WOw Heron's Here

Post by becat »

Hello to all and welocme to the newbies.
Heron How are you? :D
I hope your not working too hard, you still in school?
Your missed and thought of so often. Just wanted you to know.
Trev, nice to see your name around the board. Ton's of reading and seems like your doing it. Helpful information for sure.

Hazel I love your line......."Sometimes it helps to finally belong"
That's as close to wonderful as I've seen.

Hugs and Love to all.

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

thanx becat,

I'm a nurse so i guess that explains my urge to find out as much as i can about this (even though i dont like what i read at times-progressive symptoms and people REALLY suffering!).

i think its because i ve been "on my own in the world" of this illness for so long untill 1 week ago and so its amazing to suddenly have hundreds of people who really understand and who i can gain insight into this syndrome and helpful hints etc.

Am i just new to this or does there seem to be NOT very many males with this (or do they just not go on forums like this???)
trev
portsmouth
england!!

Ksxroads

thanx

Post by Ksxroads »

:wink: At 52, for many years I sometimes questioned my sanity... maybe the drs were right it was all in my head. Yet I kept telling myself it was real, something IS wrong! Then I'd think well only crazy people think they are sane!

Then there was the medicine wheel... love the medicine wheel!

Then my hormones decided to pack up and leave and I researched menopause hoping to be more informed when it came to managing my health. Learned that I can!

This *problem* continued to plague me. It was discerning as my 25 year old daughter seemed to have the same problems. It seems that the worst night sessions are precipatated by severe muscle weakness and tension during the few days prior.

It is such a revealation to realize others have developed the same coping strategies, using rice bags, music, massage, etc Then to realize things I was not consciously aware, like I have never been able to sit through an entire movie, home or otherwise! VCRs were the only time I actually would be able to watch a movie in its entirety as I could come back and rewind!

Was it related to some kind of cycle as it was worse at times. It was more prevelant during allergy season and living in a rural area it seemed related to chemical applications to fields. Duh Huh allergy meds?

You know there is something wrong when you take 3 Atavan, 3 ambien and still can't sleep! All my doctor would say is "if that was me I'd be out like a light!" How comforting!

I have just recently changed doctors. Hopefully they will be of some help. If not fortunately I don't need a referral with my current insurance.

My comment will be it took my dad 10 years of complaining to the doctor about his symptoms before they referred him to a neurologist who diagnosed Masteavis Gravis. (sp)

Thanks for letting me vent. My ramblings are probably not all that coherent... yet I think you will understand!

Hazey some daze Hazel on others...

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

Post by ViewsAskew »

Trev, seems women like this chit-chat stuff better than men, at least that's my guess :D . Actually, I was reading about chronic illness the other day and the book said that "Typically, men stay in the 'alone' stage longer." Maybe this is true here. Not wanting to be too stereotypical, but our hormones and chemicals do work differently. Women tend to like to be part of groups and get lots of feedback from others, so maybe it's why there are more here.

I do participate on other boards (RLS and other), though, and there are more men on those groups. It could be that this group is a particularly feminine group and some men aren't as comfortable here. Both Yahoo groups are definitely much less personal and more direct.

In my family, we have an equal number of men and women with RLS, but the men don't talk about it much, and the women all do. Nor do any of the men in my family go for help, while the women are 50/50.

Interesting question!

Ann

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

Anne,
thanks for that, your probably right. im a nurse and in touch with my feminine side i guess :lol:
wow! this thing really is genetic big time
just talked to my mum. she has rls and her sister too!!!

she used to take me to the dr but they diagnosed growing pains and because i described it as "itchy achy" pains she didnt link it to her problem cos it sounded different. obvious now in hind sight that everyone describes the symptoms differently.

hope my daughter and baby to be (due dec 2005)will be ok!!!
warm regards
trev

also to say i have seen youve done some great stuff in this forum...much respect to you
trev

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