1. < Autoimmune Diseases

Is this RLS (restless leg syndrome)?

Posted by Darlia @darlia, Oct 14, 2017

I have been a member of Mayo Connect in other groups too. I am trying to find out if the symptoms I have in my muscles is connected to anything I already have been diagnosed with.
Also, would it be a Rheumatologist or Orthopedic Dr. That I need for this? I asked the Rheumo and they said it's nothing that they handle. But I would think they would because it feels like muscles.
At night while relaxing, my legs get restless, want to tense up, like on rubber bands. Then my right arm, just my forearm starts to feel the same. Then it makes me put my hand into a "claw" as it intensifies.
Any clues anyone?
@darlia

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

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

Jump to this post

@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?

REPLY
1 reply
tim1028 | @tim1028 | Sep 25 12:17am
In reply to @lopus "I have been diagnosed with Willis Ekbom Syndrome (RLS) by my rheumatologist but ...I don't have..." + (show)
@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.

Jump to this post

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

REPLY
1 reply
lopus | @lopus | Sep 25 12:51pm
In reply to @tim1028 "This sounds like the rheumatologist is off base here. Restless Leg Syndrome is diagnosed by taking..." + (show)
@tim1028

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

Jump to this post

Thanks for your advice, will get my ferritin level checked. Would love to go to Mayo but none close to me. Will also check rls.org.

REPLY
lopus | @lopus | Sep 25 12:55pm
In reply to @becsbuddy "@lopus. Your doctor was right. For those of us with RLS, those initials represent the best..." + (show)
@becsbuddy

@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?

Jump to this post

I checked the link you sent, thank you, but nowhere see a description of RLS where the legs are not involved.
I have no leg movement or sleep disturbance at all, just full body pain, especially in my hands, which can be quite bad.

REPLY
slkanowitz | @slkanowitz | Sep 25 3:30pm

I’m not sure why a dr. would diagnose you with RLS if you have no RLS symptoms. I would ask him that question. RLS involves a compulsion to move your legs, but it can also affect your arms and torso as well. It can also cause deep aching pain and the symptoms are usually worse in the evening and at night when you’re trying to go to sleep. if you have none of those symptoms, I would doubt you have RLS and most of us don’t need any additional diagnoses on the list of things wrong with us. I hope you get an answer to this dilemma.

REPLY
View MoreView Less
Please sign in or register to post a reply.