My Illnesses is the RESTLESS LEGS SYNDROME. PLEASE, HELP ME!
Hello! I am 35 years old, and I have the Restless Legs Syndrome (the intense and hard one).
I haven't been sleeping well and properly for the past 6 years. However, in the last 8 days, I didn't sleep at all.
I have alredy lost my job because of it (RLS). Plus, I'm stressed, tired, fatigued, disoriented and depressed. I can't take it anymore. I am getting/going crazy.
Medications & Dosages:
None. I do not have (any - none) medical treatment or remedy in Brazil. I wish (God) I had.
I went to a Public Hospital and saw a neurologist (doctor) and he said he could not do anything (for helping me)... because he did not know the disease (well) and because the hospital had no medicine or treatment to offer me. Then, he ordered me to go home and pray to God... Which I did and always do.
*PLEASE, FOR GOD'S SAKE, HELP ME! I'M BEGGING YOU! PLEASE MERCY!!!
Last edited by Administrator; 09-05-2011 at 06:54 PM.
Dear Lennard. Rls is therrible, very terrible. But please dont give up! I has RLS for 16 yrs. I take a med called requip with a sleep aid. Another lady swore by neurotin. See if those are available where you are at. My requip doesn't always work but it does get the job done most time. Keep looking, something must be out there to help you. Stay strong, I know you have it tough.
Leonard, don't give up. There is help out there. I got enourmous relief after having an iron transfusion. I had been taking iron 2x a day for over a year. I started on the iron because my ferritin was only 32.One year later it was 8 and my RLS was driving me insane! It had gotten so much worse. With the iron transfusion it went up to 117 in a few months time. I still have the RLS and take medication but at least it is tolerable now and I can finaly sleep at night!!. There is bound to be something out there for you. Check with different doctors. Good luck
Jean
Last edited by Administrator; 09-05-2011 at 06:45 PM.
Thank you [Dee088 and Swanick2 (Jean)] very much for the words! You have no idea how much it was important to me.
I don't feel alone anymore... Thanks!
What is iron transfusion?
As remember (the doctor telling me), my ferritin (what is it - ferritin?) is okay, but my iron is (or was a month ago) too low: 28.
What does it mean (28 of iron)? Is it really too low for me (6'0'' and 188 pounds)?
After 11 or 12 days of sleep deprivation (not sleeping at all), I finally slept yesterday - I took two pills of Rivotril/Navotrax (Clonazepam). But, on the other hand, now I am feeling dizzy and weak.
Thanks again,
You finally get somthing to help you sleep and Wham. side effects! Can they atleast give you something else for sleep? There has to be something else out there.
I'm so sorry that you are going through such suffering. There are several medications for RLS. Mirapex, for example. But even low dose opiates are used in some cases. The point is that you do not have to suffer with this because there are many many treatments today.
I have suffered from RLS on and off for most of my adult life, and it is in my family as well. At times it has been the result of side effects of medications I was on. It is a very common side effect with antihistamines (antihistamines are found in many over-the-counter products, including allergy and many sleep aids). So if you are taking any of these, check the ingredients. There are many kinds of antihistamines and they have many different names. They can trigger a particularly severe RLS.
For some people, certain things in foods can cause it. I have identified several of these for myself (it is different for different people). If I stay away from these ingrenients in foods, my RLS is very minor:
Ginger spice
Monosodium glutamate and other glutamates (found in boullion cubes for example)
Hydrolysed protein (in many processed foods)
Caffeine (coffee in the morning will effect my RLS at night)
Red food coloring
But even if you can't find the cause of your RLS, please remember that there are many medications now that treat it. If you read posts here, many people have written of them. There is no reason you have to suffer that way. Perhaps you can educate yourself and then you can educate the doctor. Many doctors are still in the dark about this condition.
I am very sorry that you are suffering so much. How horrible it is that the doctors will not help you.
Try this please! Take/eat one tablespoon of yellow mustard.. the kind that you would put on a hot dog or sandwich. I know it sounds crazy, but it has helped me many times. It certainly will not hurt to try it.
You can also try heat. Either a long hot bath, or put an electric heating pad under your knees. This also helps sometimes.
I know that some countries sell acetaminophen with codeine over the counter, without a prescription. You can try that, because many studies show that narcotic pain medicine is the best thing for severe Restless Leg Syndrome.
Thank you...thank, thank, thank, thank you very very much (Jean, Dee088, Cerajoan and Sobs). From my heart, I need you all...otherwise, I won't survive!
I'll buy the mustard!
I'll buy the soap (by the way, which kind - lavander? Any lavander soap?)!
I'll buy the paracet acetaminophen with codeine
Is there anything else I could do or try?
Does Yoga helps? Does Meditation helps?
I have been going to the gym (non-stop) since I was 16 (now I am 35). So, I'm not sure if it helps (or not) my RLS...because I'm so used to it (going to the gym)! You know... However, when I go skating (rollerblade) in the parks... Oh my God, my legs (sometimes boths, most of time only one - wierd, isn't it?) get terrible... So I don't sleep (like yerterday - Sunday).
My new Doctor has precribed me Syfrol (dicloridrato de pramipexol) 0,125... but it just help me a litle bit... I have to take 0,250 to help me better. However, this remedy is very expensive and also I'm afraid of the sides effects...especially in the future (so I have just 35 years)... Imagine when I get to 50 or 60...if I get it! I will propably be taking 1g or 2g of this drug...and no maney to eat (or surport my family)...because the remedy will have taken all my budget...
Is there any hope for us...or for me...out there?
Plus, I have been praying days and nights but still... =(
By the way, is Syfrol a good (the best out there) remedy? Is there anyone better?
Is taking (this medication) or so many medication (especialy sleep aids) safe?
What kind of food should I totally avoid - avoid at all?
Sorry for my questions...but I am so desesperate!
Please help me! Thank you!
Leo.
*Do you mind if we pray together - at might (everyone at your on time or bedtime) - for this reason (our RLS)...and for three consecutive days as a chain of faith and strength to the healing of our syndrome?
If yes...it starts (next) wednesday night. Thanks!
Last edited by Administrator; 09-05-2011 at 06:49 PM.
I never heard of syfrol but I am not really familar with rls. I have it of course and was told it does not go away. I take requip. Others take lyrica. Sleeping pills or OK and not OK. You can abuse them or not. You can be dependant on them. I dont know what soap to use but lavender sounds good! I dont think food has any bearing on rls but could be wrong. There are other meds for rls and you should ask the dr for a different med that is less expensive. I thought in Canada, all medical is free. Why do you have to pay for your meds? Keeep trying things like yoga, still go to the gym. Maybe do streches before bed. Yes, I will be praying fir 3 nights! With my rls, I know its coming by a feeling in my feet. I average 4 nights a week. I hate it. You take care.
There are stockings or sock looking things. They apply pressure to your legs assisting with circulation. Those you should be able to purchase over the net if your unable to get them from a local pharmacy.
In the mean time even pantyhose, a sheer type, that are very snug will help. You also can find foods and vitamins that will help with blood flow. Hope I was able to help.
Dee088, I'm almost sure that Sifrol (in Brazil) is the same that Miraplex (in USA).
By the way, I'm taking 0.125g 2 to 3 hours before going to bed/sleep (as the Instructions say) but it's not working properly any longer (as before). I'm going to have to take (double) 0.250g. The problem is...I am just 35. Where is it going to stop? Could you imagine when I reach 50 or 60 (if I do)?
The other option is (for now) to keep taking 0.125g (of Miraplex/Sifrol) + one pill of Rivotril.
However, I don't know what to do... What should it be worse for me/for my life and health...in the future (side effects)?
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Iluvasphaltobam, for sure I will buy the socks that applies pressures to the legs and assists them with circulation.
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Does the soap trick really work? Or is it just a blablabla...? How could it work?
There are stockings or sock looking things. They apply pressure to your legs assisting with circulation. Those you should be able to purchase over the net if your unable to get them from a local pharmacy.
In the mean time even pantyhose, a sheer type, that are very snug will help. You also can find foods and vitamins that will help with blood flow. Hope I was able to help.
There are stockings or sock looking things. They apply pressure to your legs assisting with circulation. Those you should be able to purchase over the net if your unable to get them from a local pharmacy.
In the mean time even pantyhose, a sheer type, that are very snug will help. You also can find foods and vitamins that will help with blood flow. Hope I was able to help.
HI, i AM ALSO FROM A "3RD WORLD COUNTRY" AND HAVE PROBLEMS WITH MEDICATION, BUT DID NOTICE WITH CONTINUED MEDICATION (IN MY CASE - PEXOLA) THE "ATTACKS" OF RLS WERE INCREASING SO THAT I WAS BECOMING UNCOMFORTABLE DURING THE DAY AS WELL AS EVENINGS, AND ALTHOUGH I COULD SLEEP AT NIGHT WITH MEDICATION, COULD NOT EVEN SIT DURING THE DAY, SO WHEN UNABLE TO GET MEDICATION OUR LOCAL PHARMICIST PUT ME ONTO A GENERAL VITAMIN/NATURAL TYPE TABLET, TOGETHER WITH IRON DEFICIENCY TABLETS AND A NATURAL SLEEP REMEDY, IT HELPED FOR AT LEAST 5 MONTHS, BUT NOW SYMPTOMS ARE GETTING BAD AGAIN, SO WILL GO BACK ON MEDICATION, BUT IF IT HELPS AT ALL, I KNOW WHAT YOU ARE GOING THROUGH AND CAN ONLY PRAY YOU FIND SOME RELIEF, I WISH PEOPLE WHO DO NOT SUFFER COULD UNDERSTAND THE AGONY AND ANNOYANCE AND EVERTHING ELSE THAT GOES WITH THIS PROBLEM
Vjzam, I am sorry that you are suffering. I feel fortunate I average 4 nights a week with rls. You too take pexola(mirapex). I am thinking of swiching to it because others take it. It is a terrible condition. I'll pray for you and the others for their pain to leave them. Good luck on your med increase.
I take Ropinerole (generic for Requip) for my rls. It works, except I still have itchy twitchy feet at night at times. I have a balance disorder as well and was taking a med for that but it made the rls WORSE! So I quit and just have more balance issues...much less stressful than rls and not sleeping. I know that some people eat more iron-rich foods such as spinach and dried fruits and that supposedly helps. Also some people find relief by exercising more often. Good luck!!!!!!!!
I am new to the site (RLS) and when walking the house at night am finding it a comfort to sit (stand...) at the computer and log in ' I am not alone", thanks to fellow sufferers who share their stories and ideas for help, perhaps one day RLS will be taken seriously by the Medical Profession - it may not be life threatening, but it is certainly soul destroying, I have suffered for about 50 years (giving away my age....) and was only properely diagnosed about 5 years ago, not that there was any medication available - Africa....but now I can get some help and thnaks to all for sharing their stories
I take requip 2mg and it does not work well for me. The only thing that work for me is to walk and try to sleep later. Keep coming up with the info. Looking forward to them.
Since you are getting so little help from your doctor, I have a suggestion. Go to www.rls.org and look at all the information there. Educate yourself on what you have, what medications are available and what treatment options there are. There is a brochure you can copy that gives all the current meds used to treat RLS. There is also one that can be taken to your doctor. Then insist your doctor get with it and help you or find another doctor. You deserve better than this, no matter where you live. I have lived with this most of my life and understand how horrible it can be. If you need help with the website, let me know.
The following user gives a hug of support to Rubyslipper1955: vjzam (09-17-2011)
The Following User Says Thank You to Rubyslipper1955 For This Useful Post: vjzam (09-17-2011)
After years of trying everything, I find I can take the smallest dose of Mirapex along with an extremely high dose of Magnesium....I actually take five magnesium pills (400 mg's each) with my Mirapex at least two hours before bedtime. Works better than anything else I've tried so far. It at least is under control. Hope this helps. Good Luck!
Sally
Quote:
Originally Posted by Leonnard
Thank you [Dee088 and Swanick2 (Jean)] very much for the words! You have no idea how much it was important to me.
I don't feel alone anymore... Thanks!
What is iron transfusion?
As remember (the doctor telling me), my ferritin (what is it - ferritin?) is okay, but my iron is (or was a month ago) too low: 28.
What does it mean (28 of iron)? Is it really too low for me (6'0'' and 188 pounds)?
After 11 or 12 days of sleep deprivation (not sleeping at all), I finally slept yesterday - I took two pills of Rivotril/Navotrax (Clonazepam). But, on the other hand, now I am feeling dizzy and weak.
Thanks again,
