Please help!! All my life as far back as i can remember i have always had these uncomfortable sometimes overwhelmingly horrible sensations in my legs that either make it so i cant function or sleep, i have talked to my doctor and he said i just needed more sleep and over the years he has just repeated this advice and ignored my obvious concerns, Then about a year ago my daughter who was three at the time started crying everynight in the early evening and just rock back and forth reapeating "my legs mama, my legs, please rub them" and sometime i have had to rub them for hours at a time just for her to get an hours worth of sleep. she hasnt faltered from this and continues to do it and average of four to five times a week, i brung it up to her pediatrician repeatedly and she just dimisses it as "growing pains" well i got to talking to some of my family members and surprisingly a couple have had the same symptoms. I kinda feel left in the dark, this is a huge thing in our lives and i dont know what to do i honestly dont even think the doctors know about RLS but I am afraid they wont take it seriously even if i do ask them to look into it. has anyone else been through this and finally got a diagnosis? what did you have to do?, should i go to as many dr.s as it takes, i need some help and direction please. at this point anything would be helpful. thank you so much.Please help
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chasinsmok
- Posts: 1
- Joined: Fri Aug 13, 2004 2:36 am
- Location: michigan
- Contact:
Please help
Please help!! All my life as far back as i can remember i have always had these uncomfortable sometimes overwhelmingly horrible sensations in my legs that either make it so i cant function or sleep, i have talked to my doctor and he said i just needed more sleep and over the years he has just repeated this advice and ignored my obvious concerns, Then about a year ago my daughter who was three at the time started crying everynight in the early evening and just rock back and forth reapeating "my legs mama, my legs, please rub them" and sometime i have had to rub them for hours at a time just for her to get an hours worth of sleep. she hasnt faltered from this and continues to do it and average of four to five times a week, i brung it up to her pediatrician repeatedly and she just dimisses it as "growing pains" well i got to talking to some of my family members and surprisingly a couple have had the same symptoms. I kinda feel left in the dark, this is a huge thing in our lives and i dont know what to do i honestly dont even think the doctors know about RLS but I am afraid they wont take it seriously even if i do ask them to look into it. has anyone else been through this and finally got a diagnosis? what did you have to do?, should i go to as many dr.s as it takes, i need some help and direction please. at this point anything would be helpful. thank you so much.Help
Hi Chainsmok, I'm Jan
Welcome! First of all, I suggest you check several threads. The first one I would suggest is one under General called ORP (Our Researcl Project). It has lots of questions several of us have comprised which might help you in deciding if you might have RLS. The second thread is New to RLS/New Members and Current Members Please Help which contains biographies of people who have RLS. My bio is on page 1/New to RLS/New Members and Current Members Please Help. Please fill out one yourself if you wish to. Some of these bios explain the symptoms people have. Then, just read as much as you can on the entire site. Many of us are self-diagnosed. A lot of doctors really do not know much about RLS, so you have to be your own advocate and learn as much as you can about the syndrome. Remember, you HIRE physicians, a fact that many of them forget!! They are working for YOU and should be willing to listen!! If you are not satisfied, continue to look for a doctor until you find one who WILL listen to you!! What you are experiencing is not normal!! You need sleep, and if you can't sleep, something is not right. In the meantime, we're all here for you. Ask anything, and someone will be here to answer you ASAP. In the meantime, read, read, read. Don't give up, there's help for you, believe me!!! We have so many wonderful people on this site who are ready, willing, and able to help you--all with different talents. Some with great research skills, some with wonderful medical and pharmaceutical knowledge, and some (like me) who are willing to lend an ear or a shoulder when you need one or who will just share their own experiences with you. Take care!
Jan
Welcome! First of all, I suggest you check several threads. The first one I would suggest is one under General called ORP (Our Researcl Project). It has lots of questions several of us have comprised which might help you in deciding if you might have RLS. The second thread is New to RLS/New Members and Current Members Please Help which contains biographies of people who have RLS. My bio is on page 1/New to RLS/New Members and Current Members Please Help. Please fill out one yourself if you wish to. Some of these bios explain the symptoms people have. Then, just read as much as you can on the entire site. Many of us are self-diagnosed. A lot of doctors really do not know much about RLS, so you have to be your own advocate and learn as much as you can about the syndrome. Remember, you HIRE physicians, a fact that many of them forget!! They are working for YOU and should be willing to listen!! If you are not satisfied, continue to look for a doctor until you find one who WILL listen to you!! What you are experiencing is not normal!! You need sleep, and if you can't sleep, something is not right. In the meantime, we're all here for you. Ask anything, and someone will be here to answer you ASAP. In the meantime, read, read, read. Don't give up, there's help for you, believe me!!! We have so many wonderful people on this site who are ready, willing, and able to help you--all with different talents. Some with great research skills, some with wonderful medical and pharmaceutical knowledge, and some (like me) who are willing to lend an ear or a shoulder when you need one or who will just share their own experiences with you. Take care!
Jan
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becattx
I'll let to add
Hi Chainsmok,
As Jan said Welcome. I'm Becat A lifer with RLS, my bio is on page 1 new/current member.
I can tell you that I was able to fill a hot water bottle by myself by the time I was four years old. Growing pains are my first real memory, awful pain.
Print out the 18 page document on this website that spells it out for Doctors. Make another appt. for both you and your daughter. Take this print out with you. More times than not we educate our own doctors. You and you daughter sound like classic, genetic RLS to me.
You have the right to request your doctor to read the RLS printout. You should demand that something be done for your daughter.
I would ask that you take some time and really read the different post, and educate yourself on this site and many others as well.
You will be your best defense, the more you know the less the doc.s can ignore.
Keep us in touch. and please fill out a bio for yourself.
thanks.
As Jan said Welcome. I'm Becat A lifer with RLS, my bio is on page 1 new/current member.
I can tell you that I was able to fill a hot water bottle by myself by the time I was four years old. Growing pains are my first real memory, awful pain.
Print out the 18 page document on this website that spells it out for Doctors. Make another appt. for both you and your daughter. Take this print out with you. More times than not we educate our own doctors. You and you daughter sound like classic, genetic RLS to me.
You have the right to request your doctor to read the RLS printout. You should demand that something be done for your daughter.
I would ask that you take some time and really read the different post, and educate yourself on this site and many others as well.
You will be your best defense, the more you know the less the doc.s can ignore.
Keep us in touch. and please fill out a bio for yourself.
thanks.
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claradragon
- Posts: 93
- Joined: Wed Jul 21, 2004 5:15 am
- Location: kent,england UK
- Contact:
hi
Welcome chasinmok.
Here are some links that you may find useful
Algorithim for treatment managment
http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf
Medical bulletin
http://www.rls.org/pdf/2004_medical_bulletin.pdf
RLS/PLMD Treatment page-comprehensive review of medications used in treating RLS/PLMD
http://www.rlshelp.org/rlsrx.htm
Rebellious attitudes and approaches to surviving with RLS
http://www.rlsrebel.com/
I hope this information is useful to you and your daughter.My bio is on pg1/new to rls/new comers and existing members please help, I too had those growing pains and can empathise with you.Read as much as you can there is so much good advice here as well as good people willing to help in which ever way they can.
Here are some links that you may find useful
Algorithim for treatment managment
http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf
Medical bulletin
http://www.rls.org/pdf/2004_medical_bulletin.pdf
RLS/PLMD Treatment page-comprehensive review of medications used in treating RLS/PLMD
http://www.rlshelp.org/rlsrx.htm
Rebellious attitudes and approaches to surviving with RLS
http://www.rlsrebel.com/
I hope this information is useful to you and your daughter.My bio is on pg1/new to rls/new comers and existing members please help, I too had those growing pains and can empathise with you.Read as much as you can there is so much good advice here as well as good people willing to help in which ever way they can.
Chasinsmok, (Love the nickname.)
Welcome! I encourage you to do a web search on children with RLS. A couple of search ideas. Search for "RLS Child" and "RLS ADD". What you'll find it that it's very common for Dr's to dismiss RLS in children as merely "growing pains." However, the awareness is growing. Even infants can have RLS. It's just more difficult to diagnose RLS in children because of their limited ability to describe their symptoms. But that does not mean they don't need to be taken seriously, diagnosed and treated.
My son was exactly like your daughter. I rubbed his legs for many a hour, from the time he was about your daughter's age. He has terrible growing pains until he was about 14. He is almost 17 now and suffers from RLS....still undiagnosed because I have only recently started educating myself about RLS.
The other componant is ADD. Many children who are diagnosed with ADD or show signs of ADD may also suffer from RLS. Again, this was true with my son. He has ADD and RLS. Some children are completely misdiagnosed with ADD, when it's actually RLS.
You're not crazy! Keep looking for a doctor who will listen to you AND YOUR DAUGHTER. When looking around, ask if that Dr. is educated about RLS in children. Keep us updated and feel free to vent here anytime.
No you're not crazy. Yes, keep looking for a Dr. who will
Welcome! I encourage you to do a web search on children with RLS. A couple of search ideas. Search for "RLS Child" and "RLS ADD". What you'll find it that it's very common for Dr's to dismiss RLS in children as merely "growing pains." However, the awareness is growing. Even infants can have RLS. It's just more difficult to diagnose RLS in children because of their limited ability to describe their symptoms. But that does not mean they don't need to be taken seriously, diagnosed and treated.
My son was exactly like your daughter. I rubbed his legs for many a hour, from the time he was about your daughter's age. He has terrible growing pains until he was about 14. He is almost 17 now and suffers from RLS....still undiagnosed because I have only recently started educating myself about RLS.
The other componant is ADD. Many children who are diagnosed with ADD or show signs of ADD may also suffer from RLS. Again, this was true with my son. He has ADD and RLS. Some children are completely misdiagnosed with ADD, when it's actually RLS.
You're not crazy! Keep looking for a doctor who will listen to you AND YOUR DAUGHTER. When looking around, ask if that Dr. is educated about RLS in children. Keep us updated and feel free to vent here anytime.
No you're not crazy. Yes, keep looking for a Dr. who will
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
Dear chasinsmok
It is not that bad but you have to do some homework. Your child's well being is at stake!
This is a natural fear! The only antidote I know of is knowledge. It really has the power. Yes, we all went through this, I am, for example, just visited my fourth doctor to get the medication I thought I needed.
First of all you have to find a doctor who admits that he is knowledgeable about RLS. You can find one on this site or I can find one for you if you tell me the city and state where you live.
You have been given excellent references. They may seem to be overwhelming at first. Let me quote here some facts I summarized form one of the first references you were given by this excellent team of ladies. It may not make too much sense to you but it should give you an outline, a tree of knowledge so to speak on which to hang on pieces of information you colleAn Algorithm for the Management of RLS
I kinda feel left in the dark, this is a huge thing in our lives and i dont know what to do i honestly dont even think the doctors know about RLS but I am afraid they wont take it seriously even if i do ask them to look into it. has anyone else been through this and finally got a diagnosis? what did you have to do?, should i go to as many dr.s as it takes
This is a natural fear! The only antidote I know of is knowledge. It really has the power. Yes, we all went through this, I am, for example, just visited my fourth doctor to get the medication I thought I needed.
First of all you have to find a doctor who admits that he is knowledgeable about RLS. You can find one on this site or I can find one for you if you tell me the city and state where you live.
You have been given excellent references. They may seem to be overwhelming at first. Let me quote here some facts I summarized form one of the first references you were given by this excellent team of ladies. It may not make too much sense to you but it should give you an outline, a tree of knowledge so to speak on which to hang on pieces of information you colleAn Algorithm for the Management of RLS
An Algorithm for the Management of RLS
By M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004
(summarized by JumpyOwl)
INTRODUCTION:
Characteristic symptoms: Limb discomfort and urge to move legs which occurs at rest. Symptoms are relieved by movement and are worst in the evening and night.
Associated afflictions: RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). (BTW the reverse is not true).
Severity: ranges from annoying and infrequent to distressing and daily.
Secondary adverse events: Often RLS is a cause of onset or maintenance insomnia.
Prevalence: 5-15% of population.
Pathophysiology: RLS is familial (50%), or idiopathic or related to acquired conditions (iron deficiency/renal failure).
Regulatory status: FDA has not yet approved any medication for the treatment of RLS, so all the drugs discussed here are off label.
Classification of RLS based on severity: The article distinguishes between three types of RLS:
Intermittent RLS
RLS that is troublesome enough to require treatment but does not necessitate require daily therapy
Daily RLS
RLS that is frequent and troublesome to necessitate daily therapy
Refractory RLS
Daily RLS that is treated with a dopamine agonist with one or more of the following outcomes:
o Inadequate initial response despite adequate doses
o Response that has become inadequate with time despite increasing doses
o Intolerable adverse effect
o Augmentation that is not controllable with additional earlier doses of the drug
TREATMENTS:
INTERMITTENT RLS
Nonpharmacological therapy
• Determine ferritin level and administer iron replacement
• Mental alerting acitivties to reduce boredom
• Abstinence from caffeine, nicotine, and alcohol
• Consider if the use of antidepressants, neuroleptic agents, dopamine-blocking emetics or sedating antihistamines may be contributing and if they can be discontinued.
DAILY RLS
Nonpharmacological therapy
It is the same as for intermittent RLS
Medications
• Dopamine agonists (pramipexole/Mirapex or ropinorole/Requip)
• Gabapentin/Neurontin (anticonvulsive)
• Low potency opioids (propoxyphene/codein, or opioid agonists,
such as tramadol/Ultram
REFRACTORY RLS
Medications
• Change to gabapentin/Neurontine from dopamine agonist
• Change to a different agonist
• Add a second agent such as gabapentin, benzodiazepine, or an opioid
• Change to high potency opioid or tramadol
ALTERNATIVE, INVESTIGATIVE, OR POTENTIAL FUTURE THERAPIES
The management of RLS continues to evolve as new drugs become available and older ones are prescribed less frequently.
Carbamazepine/Tegretol (an anticonvulsive) and clonidine/Catapres (antihypertensive medications) have been successful in clinical trials but are not commonly used in clinical practice..
Among potential new dopamine antagonists Cabergoline/Dostinex (it is also a amtihyperproclactinemic) is of interest because of its long half life of 65 hours, which may result in less augmentation.
Magnesium (ions) has been reported to be effective. In addition to oral iron supplements, treatment of RLS by intravenous iron infusion is presently being investigated in patients with both low and normal ferritin concentration. Such use dates back over 50 years.
Jumpy Owl