WED Medical Bulletin: Causes, Diagnosis, and Treatment
First, review the WED Medical Bulletin, published by the RLS Foundation. While intended for doctors to read, it's great to read yourself. Then, highlight things you think apply and give it to your doctor and ask him or her to review it and tell you what he/she thinks. It also includes primary features - use this to help with diagnosis.
New to the Site
Information for new visitors to the RLS Foundation's website (and changing all the time, so good to review if you've been there before, too). From documents for those just diagnosed to ones about current treatment options, there are many options on this page. Some things are for members only. If you are not a member, it is worth joining. Financial assistance is available.
Start with lifestyle, diet, and the like:
- -IMPORTANT: Have doctor check your serum ferritin iron levels and also check to see if you are anemic. If you are going to take or are taking dopaminergic drugs (Sinemet, Requip/ropinerol, Mirapex/pramipexol, Neurpro/rotigitine, and so on), your ferritin level should be at least 100, according to the current research. Serum ferritin levels should be at least 50 for someone not taking dopaminergic drugs.
-Try vitamins (different people get different results; vitamins and minerals people have mentioned that have helped include D, E, C, iron, magnesium, calcium, folic acid, B complex). Recently, vitamin D has surfaced as very important. Also, as of summer 2013, there is information that we have too much glutamate in our brains. This may be what makes us wide awake at night. There is no evidence, yet, that supplements help reduce this, but some people have good luck taking amino acids. See posts in the Non-prescription Medicines, Supplements, and Vitamins section.
-Review your diet - many people find some food and beverages can make it worse. rlshelp.org has a list of possibilities. Several of our members have difficulty with artificial sweeteners, for example. There are many current and older discussions on our board about diet, including the Wahl's diet, gluten free diets, low tyramine diets, and more. For secondary RLS/WED, inflammation may play a role, too, and diet may help with that.
-Stop alcohol and caffeine, especially before bedtime. Since a caffeine-like substance is in chocolate, you may need to avoid that, too.
-Assess sleep hygiene and be consistent EVERY night; see the post below for more info.
-Determine what kind of RLS/WED you have: primary, secondary, or idiopathic; this may change how you manage it. See the remaining posts in this topic for more info.
-Get "right" amount of exercise for you (too little or too much may both make RLS/WED worse) and stick to it consistently (time of day, amount, type).
-Stop other medication that may worsen it (see the list below).
-Consider alternative ways to deal with symptoms. Jill Gunzel, the RLS Rebel wrote a book, The RLS Rebel, that may still be available at Amazon.com.
-Check out the Physical Treatments section here: compression stockings, specific exercises/yoga/stretches, massage or massaging devices, warm or cold baths, heating pads or cold wraps, ace bandages, etc.
More Help Needed?
After lifestyle, you can assess if you need more help or if that is enough. If you need more help, please get it. Your quality of life is important and shouldn't be wasted:
- -Find a good doctor who will listen to you and be a partner in your treatment (there is a short list here of doctors that our members have liked. The Foundation also has a list on the main website; we'd suggest you call and ask questions before you choose one of the doctors; just because they are on this list doesn't mean they are a good RLS doctor, just that they want to treat RLS).
-Have a sleep study to see if PLMS (periodic limb movement in sleep) is also a problem and if you need medication for that; PLMS do not always interrupt sleep and only a sleep study can determine if they do. A sleep study will diagnose PLMS and may show the doctor how much difficulty you have sleeping, but it won't diagnose RLS. It also may find that you have apnea. It's very important to treat apnea if you have it.
-Consider medication if your quality of life is compromised by the lack of sleep and you can't improve it enough with lifestyle and other changes.
That's when you look at the Medical Bulletin and research as much as you can about medications, what they do, how they work, how long they work, etc. Ask the doctor what he/she thinks you should do. That's a good time to read about people's experiences with drugs and ask if what the doctor is recommending is commonly used or something we're familiar with. You may also want to review some non-prescription drugs and see if that is an appropriate choice for you.
Also review the Mayo Clinic Proceedings, created in conjunction with the RLS Foundation. This supplants the older Mayo Clinic Algorithm.
Trouble with Treatment?
Some people who take pramipexole (Mirapex), ropinerole (Requip), or cabidopa/levadop (Sinemet) have problems with augmentation. While less common, people using the patch (Neupro) have also experienced this.
Does the following sound like you?
You started taking one of these and it was great. Sometime later, a few weeks to a several years, you needed more of the drug - the drug seemed to stop working or the symptoms became a bit or a lot worse. Your doctor likely increased the dose. Over time, it's been increased at least once and possibly several times. You now take more than you started taking it seems it's just getting worse. The maximum per dose amount of pramipexole is recommended to be .25 mg and 1 mg of ropinerole. If you take more than this per dose, you are probably taking too much.
If this, or something similar to this, describes your circumstances, please learn more about augmentation. There is more about it in the next post in this thread.
Intolerable side effects, excessive fatigue, heart issues and so on can all make taking medications seem worse than the RLS itself. Read as much as you can. Post in other threads.
Edited April 2015