New to RLS..... Alot of Questions

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anna_michele
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New to RLS..... Alot of Questions

Post by anna_michele »

HI. I am 28 and was recently diag. with RlS after going aprox a month with the charlie horses and cramps through out my legs, bruising, veins are starting to show more, and not being able to sit, walk, or do anything for a long period of time, and having trouble sleeping at night due to numbness and charlie horses at night.. I would toss and turn for hrs til i finally got up.... During the day i could barely get around or was to tired to do anything. making it difficult to take care of my two very young children. Dr. put me on requip for approx 2weeks. saying that i would know in that amount of time if it was rls. and ordered a nerve study.. which she left me in the dark about.. i have no clue whats going to be happening the 16. Meds are not helping all that much.. yes i do sleep some but the next day i am either sick at stomach, severe headache, worse cramps in legs then before meds, or sleep for hours with out being able to stay up, or feeling of passing out.... i cant go out side for long periods of time in this heat or i get light headed.... and worse of all its cause me to feel as though i am going blind.. like disco balls going off in my head..... all i keep hearing is give meds a few days.... please let me know if this is normal symptoms and reactions to rls and the meds... any help is appreciated.....

becat
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Post by becat »

HI Ann and welcome to the board.
Well, I can tell you about some of the stuff you've asked about, I'm no doc, so hang with me on this one ok? :D
The nerve test is where the attach these little sticky pads to differnt points on your legs and feet. Ok, this is the hard part, it's not painless, but it is to rule out nerve damage, and to see how fast your nerves are reacting to the timy shocks. Listen to me now.......you have something beautiful in your head to go to at that time. Because after the first one you'll think, "I'm paying for this?"
It sounds like you've got a bit going on, maybe not all just the medication. Numbness is not normally a RLS problem. that is ok though, sounds like they are really going to test you out to find the right answer.
Yes, you can have RLS and something else or RLS by itself, but it sounds to me like more.
Next appt. if you have a question or you feel like your in the dark about what is going on, stop that doc right there and say, wait, explain this better to me. You hire that doctor, not the other way around. Yes, they are busy, often overbooked, but get what you pay for. Make them answer your questions.
Tomorrow morning you call the office and explain to the doc's nurse, head nurse, PA what ever, what is going on with the meds. And how they are making you feel. Tell them you expect to hear back from one of them the doc or the nurse about what to do...AND waiting to see if it changes is not an option. i know it sounds tough, but no one is going to fight for you like yourself.
Please let us know how it goes tomorrow.
Wish I had more to offer.
I can send you a hug and tell you that we all look up at the moon at might knowing were never alone in this. Your not alone anymore, you've got us.
Hugs
Lynne

ViewsAskew
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Post by ViewsAskew »

Hi Anna,

Lynne has given some very good advice.

Do you think you have RLS? I think many of use figure we can't diagnose ourselves. But, that's not true with RLS. In fact, only we can diagnose ourselves, really.

There are four criteria which I copied from here: http://www.neuro.jhmi.edu/rls/edu.htm

Uncomfortable sensation in the legs with a clear need or urge to move the legs. The sensation may be described in many different ways from aching and pulling to creepy crawling feelings. The sensations can also be painful, not just uncomfortable. But in the end, all sufferers can clearly identify a need or urge to move the legs as a driving force behind their complaint. Some individuals may have symptoms not only in the legs but also in the arms or body.

The symptoms are worse at night. This may be only at bedtime or it may start in the evening when trying to sit for any period of time. Some individuals may have symptoms throughout the day but these symptoms will always be worse at night and be at their best sometime in the morning.

The symptoms come on with rest. Whether trying to lie quiet at bedtime or sitting through a long plane flight during the day, the sensations are likely to strike. Whether trying to sit through a movie or quietly reading a book, the symptoms will make what used to be an enjoyable event, a most unbearable one. You cannot rest; you cannot relax; you cannot slep another night.

The symptoms are relieved with movement. All sufferers learn quickly that getting up and walking will immediately relieve the symptoms. However, as soon as the individual settles back into a restful state the symptoms will usually return. Any movement of the legs will usually bring about some immediate, although temporary relief. If the legs are not moved, they may jump on their own. In some individuals, there may be semi-involuntary movements of the legs preceded by only a very brief sensation. Most individuals with Restless Legs Syndrome will have rhythmic or semi-rhythmic movements of their legs while they are asleep. Although they may not be aware of their movement, usually their bed partner is. It is this movement of the legs, this constant walking to ward off the sensation, that gives the viewer the perception of the sufferer being restless, thus the term Restless Legs Syndrome.


Do these all apply to you? If so, then you have RLS. The only criteria that is somewhat flexible is the one about the sensations. Some people do not have much of a sensation, just a feeling that they MUST move. And when they move, the feeling goes away.

Yo do not need to take medicine to find out if it's RLS. In fact, though the medicine he gave you does work for at least 70% of all people with RLS, it doesn't work for everyone. So, even it it didn't work, you could still have RLS.

I hope this helped, rather than being confusing and adding more difficulty to your already difficult situation.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

tazzer
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Post by tazzer »

when you say numb, are your feet getting numb? My moms feet are numb all the time due to neuropothy. Did you ever injure your back? My mom had a car wreck and has several bulging discs in her back. I would definitely get some mri's done and the shock test to check for nerve damage. the shock thing feels like ants stinging, it's not too bad. but def get an mri to check your back if your feet are going numb.

not a doc either, but i have lots of relatives with ailments lol
including me!!!!!

dee
I feel like a science project!!!

“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945

anna_michele
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Thanks everyone

Post by anna_michele »

I would like to say thanks to all that replied....

Alot of questions were asked so i hope i get all of them answered...
Numbness... Its hard for me to really explain and i think thats alot of the problem. here how it starts.. first i get the worst charlie horses, then a numbness comes over them for a short time, like when you sit to long and your leg goes to sleep, then it will tingle as if it was waking up then it gets really heavy, some times cold. This goes on at different times during the day and almost constantly during the night. After a few days of this i will start having muscle twitches, i assume thats from being stressed (muscles) just about every time i sit down and rest. Then my viens in back of leg just below bending of knee will show through where you can trace them. approx a 2in box. No i never had a back injury.

My dr.. told me that she wanted to give me a good check since i have not been worrying about myself the last 7yrs.... So i know that i will be going through some more test and stuff at a later date, right now she is focused on legs since they are giving me so much trouble.... I asked if it could be stressed related, due to the fact that a million things have went on the last few months from trying to buy a place and move, to son breaking leg, and husband was rushed to er from work when he sliced his chin open at work with a grinder.. (thankfully it was 2inches higher then throat.. or dr said he would of bleed to death...) thats to name a few. I also asked if my weight could be a factor cause it seems like the last month my body has decided to add what seems like a miilion pounds... But i was told that she thought the weight gain did not affect it and but would get to that the next few visits cause she was concerned about how fast i was gaining and the fact that i shouldnt be with the small amounts of food i was eating and other problems i was experiencing with bowel movements.. etc.....

as the question if i have rls.... no i really dont. and why i feel that way is mainly i dont want to have it and i dont seem to have the same symptoms. like crawling and creepy sensations.. i have never had those, just the heaviness and tingling. mine are worse at night but carry on through out the day, which she said could because of how severe i described them at night, that the muscle could be just wore out and there for sore. moving does help but also can make it worse depending on how long and what i am doing.... on days alll i do is lay due to the spasms and pain i get when i try to stand or walk.....which i think is also contributing to the weight gain...

as for calling nurse/dr.... i stop doing that and just end up going there. i asked if i should continue to take meds.. and was told yes. i did a few days but when i couldnt stand side effects anymore i stopped.. well verdict is still out.. . i did find out that it helped more then i thought... but i am not sure if the side effects are worth going through to get some relief... I still have the pain and spasms on meds..

so i am so sorry for blabbing on and on... and i appreciate your advice... i am just so aggravated that i cant seem to find any relief no matter what i do...... and when i do it seems like what ever that solution is causes more problems....

ksxroads
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Post by ksxroads »

Dear Ann,

So sorry that you are going through all of this. It does sound as if your doctor is making every attempt to find out what is wrong. Wish it would happen sooner than later, yet I hope it helps to know that we are here for you should you need us.

So glad you posted, if you hadn't, I wouldn't have been reminded of so many things the others have said that I needed to hear today!

**********Positive Thoughts and Energy************

Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

coaster
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Post by coaster »

I didn't care much for Requip. It made me slightly nauseous and also I had rebound. Mirapex works much better for me.

brandy
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Post by brandy »

Anna, how are things going? Can you give us an update? When are your tests to be run? I'm so sorry that you are going through this. I agree with the others that this sounds like something in addition to, or instead of, RLS. Is this a doctor you have had for a while? Do you feel that you are valued, listened to, respected when you are in for a visit? If not, find another doc. Since RLS diagnosis depends on the description of the patient, if your doctor is not listening carefully, she may get it wrong. You're not a number, honey. You are a person of immense worth and value. I know as a young wife and mother you can get completely caught up in caring for others. There is nothing wrong with caring for yourself or even asking others to help carry you for a little while. Give yourself permission to be and not focus so much on the doing until this awful mess gets straightened out. Remember that by caring for yourself you are teaching your children that it is acceptable to care for themselves. What a valuable lesson! Please keep us in the loop and let us know how we can help.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

tazzer
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Post by tazzer »

requip worked for me the first night i took it, problem was it made me queasy. took the mirapex it didn't work much for me so now i am on sinemet and pain meds and a sleeping pill. tell doc the requip makes you sick and there are other rls meds other than requip like the mirapex and sinemet.

good luck

dee
I feel like a science project!!!

“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945

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