Facing the Initial Impact of Restless Legs Syndrome
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Every person is unique, but when you face a challenge like restless legs syndrome (RLS), you are never alone. Countless men, women, and children have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.
TSC has scoured the Web to assemble links to the very best restless legs syndrome resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional and other challenges you're facing now.
As you’ll see, we always welcome your ideas and suggestions to make this Restless Legs Syndrome (RLS) Guide even more helpful to survivors like you.
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Survivors Say: Best Resources for Restless Legs Syndrome (RLS)
The Big Picture
Restless legs syndrome (RLS) is a neurological problem characterized by unpleasant sensation in the legs and an uncontrollable urge to move when you're at rest, to try to stop this feeling. The sensation may feel like burning, creeping, tugging, or like bugs crawling on your legs. Because the sensations occur when you're trying to rest or sleep, many people with RLS have sleep problems and are often exhausted.
Your Restless Legs Syndrome
At this point in your journey, it's good to learn as much as you can about RLS as you begin to work with your doctor to find a treatment plan that's the best fit for you:
Many people have never heard of restless legs syndrome, so if you're trying to explain your diagnsos to family and friends you may want to point them to resources that cover the basics of this condition:
National Institutes of Health: What is Restless Legs?
Myths About Restless Legs Syndrome
One of the biggest myths about RLS is that it doesn’t exist! This is absolutely not true: RLS is real and it’s important for those around you to understand what you’re experiencing and to dispel common myths about this condition:
PubMedCentral: Restless leg syndrome - is it a real problem? (2006 journal article)
Dealing With Restless Legs Syndrome
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Information and Recommended Links for Survivors
Types of Treatment
Sometimes RLS is treated by treating another condition - such as diabetes - that's causing the sensations in the legs. But if another disease isn't to blame, you will most likely be prescribed a regimen that combines lifestyle changes with medication to relieve your symptoms.
Medications
Requip (ropinirole) and Mirapex (pramipexole) are among the drugs you're likely to be given to ease your RLS symptoms, but other types of drugs can be useful too:
Lifestyle Changes
New Therapies
An excellent summary on new treatments being developed for RLS:
RLS Foundation: In the News
Possible Treatment Side Effects
All medications come with the risk of side effects and those used to treat RLS are no exception. Other drugs you're taking could also be making your RLS worse:
RLS Foundation: Are there any medications that can make RLS worse?
Alternative Treatments
RevolutionHealth.com: Alternative Treatments for Restless Legs Syndrome
Creating a Support Circle
- Set up your TSC survivor profile.
- Join support groups of other survivors or start your own.
- Interact and provide updates on how you're doing.
Insurance & Work Matters
The sleep you lose because of RLS can have a big impact on all aspects of your life - including your job. If you find sleep deprivation is impairing your work, especially as you're trying to get your symptoms under control so you can sleep better, you may want to consider talking to your employer to let them know of your condition. When it comes to your health insurance coverage, these resources can offer guidance:
Resources to Find Doctors
The Emotional Rollercoaster
People who don’t sleep properly are prone to poorer health, accidents, and depression. So RLS can have a devastating impact on you and those around you in physical, emotional, and mental ways. To cope with the feelings that may arise in dealing with a chronic and sometimes hard-to-manage condition, seek out the support of those you love, as well as an in-person or online RLS support group or one-on-one counseling.
RLS Foundation: Communicate with Others
Books Survivors Recommend
What Survivors Wish They’d Known
Communicating with Your Healthcare Providers
Start by choosing doctors and other health specialists who are experienced in working with RLS patients:
- Find out all you can about RLS. Make a list of the questions and take a notebook with you to your doctor's appointments and jot down your doctor’s answers.
- Ask your doctor about all treatment possibilities; health professionals have access to current research and new therapies and medications -- let your physician know if you're open to trying something new or even experimental.
- Don’t be shy about sharing everything with your doctor; the more they know, the better able they are to help you.
- Thoroughly discuss any medications your doctors suggest; all drugs can have side effects and you want to be fully informed before you take anything.
Dealing with Restless Leg Syndrome: Information for Co-Survivors
How You Can Help
- Ask your friend or family member how they’re doing – even though RLS is not a life-threatening condition, it is chronic and can be hard to manage, and the effects of chronic sleep deprivation can be great.
- Talk to your survivor about anything you may have heard that could be helpful, like a support group or someone you know who also has RLS and who may be willing to share his/her experience and give support.
- Don’t pretend that nothing is wrong.
What to Say
- "Although I don’t know much about RLS, I want to learn more so I can help you."
- "What do you need?"
- "I’m here to listen."
What Not to Say
- "Just relax and it'll stop."
- "Is that a joke?"
- "You should just try not to think about it."
Things You Can Do for a Survivor Every Day
- Let them know you’re there for support.
- Make them laugh and let them know that life goes on.
- Empower them to develop a positive outlook.
There may not be a cure for RLS (yet), but you have reached the point in your journey where you've found a way to live with restless legs syndrome. Continue to empower yourself to learn as much as you can about your condition by finding the right health-care providers and treatments for you.
Remission / Recovery / Recurrence
Dealing with a chronic condition can be tough, but you've learned by now that a positive attitude is an absolute must. These sources can help you continue to cope and find support:
Keep up the good work you're doing with lifestyle changes - they're the best bet for reducing the severity of RLS symptoms:
It can help to hear positive, and even inspiring, stories from others who are living their lives with RLS:
RLS Foundation: Faces of RLS
Give Back
The RLS Foundation makes it easy for you to help in many ways:
RLS Foundation: How can I help?
Sometimes RLS symptoms stay the same over time, and sometimes they will get worse with age. RLS, though, is not a life-threatening condition. In a worst-case scenario you'd experience symptoms that got worse, you wouldn't be able to control them, and you would lose even more sleep. Restless legs syndrome can also be linked to other disorders, such as kidney failure, Parkinson disease, diabetes, rheumatoid arthritis, pregnancy, and iron deficiency.
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