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Is this RLS (restless leg syndrome)?

Autoimmune Diseases | Last Active: Nov 17 8:56pm | Replies (107)
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@lopus

I have been diagnosed with Willis Ekbom Syndrome (RLS) by my rheumatologist but ...I don't have restless legs. I told him this but he ignored it in his printed diagnosis.
I'm wondering, Does anyone know if it's possible to have RLS without the RLS part? Seems ridiculous, right?
I do have neuropathy and chronic pain in joints, muscles and skin, also extreme fatigue and very painful hands. This has been going on for several years. I can't take NSAIDS so take prescribed hydrocodone three times a day for the pain plus Ambien to sleep. Feeling quite desperate.

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Replies to "I have been diagnosed with Willis Ekbom Syndrome (RLS) by my rheumatologist but ...I don't have..."
Becky, Volunteer Mentor | @becsbuddy | Sep 24 9:59pm

@lopus. Your doctor was right. For those of us with RLS, those initials represent the best description of the disease. Only those who know, and understand, the correct name will ever use it. You just need to be aware of both!
https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/symptoms-causes/syc-20377168
I, too, was quite desperate to get some control over my RLS. Then my PCP referred me to a neurologist who specialized in movement disorder. And now, i can get some sleep!
What is your doctor trying you on at the moment?

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tim1028 | @tim1028 | Sep 25 12:17am

This sounds like the rheumatologist is off base here. Restless Leg Syndrome is diagnosed by taking a history. For purposes of full disclosure, I have RLS. The first line of treatment is to get the ferritin level up to 100 if possible. Dopamine agonists can lead to augmentation. If you are concerned whether you may have RLS, Mayo Clinic is considered a Center of Excellence by the RLS Foundation. For more information check go to rls.org

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