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

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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.

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@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

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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
3dogs | @3dogs | Nov 17 5:23pm
In reply to @degarden_girl "Wow, you have had an awful time with RLS. I started off taking 4000 IUs of..." + (show)
@degarden_girl

Wow, you have had an awful time with RLS. I started off taking 4000 IUs of Vit D3 and then reduced to 3000 and now am at 2000. My doc didn't see any problem with me taking 4000 so maybe your doc would find that is OK for you to try. And then maybe try taking it around 5 PM to see if it calms the RLS. I do wonder if your sleep medication might be triggering the RLS. I too have found the whole issue is exacerbated by aging (I'm 78). My mom had it and had to stand up to watch TV. We didn't know about Vit D3 then.

I wish you good luck. RLS is an awful disease with such a silly name.

Donna

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LOL I've stood to watch TV and even read the paper over the years...I've tried different timing of the supplements, and it didn't seem to help. Sometimes heat helps, support stockings, Tramadol, but nothing so far works every day, until the last month when I tried CBD. I have read the Trazadone could be a trigger but have tried to stop 2 different times, once 4 weeks and then 6 weeks recently. Both times I didn't notice any difference in the RLS, but I was not sleeping. Even after 6 weeks I was only sleeping a few hours a night so was always tired, which just makes my RLS start earlier in the day. If I can sleep 6 or 7 hours, I'm great, but without the trazadone I only sleep about 4 hours. I was given Trazadone in 1998 when after surgery when my doctor discovered I only slept a few hours a night. Taking 150mg I can sleep 6 maybe 7 hours, but not soundly...it must be hereditary as my older brother only sleeps about 4 hours a night, but unfortunately nothing has helped him sleep better.

REPLY
1 reply
degarden_girl | @degarden_girl | Nov 17 8:56pm
In reply to @3dogs "LOL I've stood to watch TV and even read the paper over the years...I've tried different..." + (show)
@3dogs

LOL I've stood to watch TV and even read the paper over the years...I've tried different timing of the supplements, and it didn't seem to help. Sometimes heat helps, support stockings, Tramadol, but nothing so far works every day, until the last month when I tried CBD. I have read the Trazadone could be a trigger but have tried to stop 2 different times, once 4 weeks and then 6 weeks recently. Both times I didn't notice any difference in the RLS, but I was not sleeping. Even after 6 weeks I was only sleeping a few hours a night so was always tired, which just makes my RLS start earlier in the day. If I can sleep 6 or 7 hours, I'm great, but without the trazadone I only sleep about 4 hours. I was given Trazadone in 1998 when after surgery when my doctor discovered I only slept a few hours a night. Taking 150mg I can sleep 6 maybe 7 hours, but not soundly...it must be hereditary as my older brother only sleeps about 4 hours a night, but unfortunately nothing has helped him sleep better.

Jump to this post

I have 10 mg tablets of generic Ambien but take just a quarter of a tablet as any more than that and I will need to take more gabapentin. I have 100 mg capsules of gabapentin but I cut open the capsule and discard about half of the powder. I definitely need the ambien to sleep and I definitely need some of the gabapentin to offset the side effects of the ambien. I have tried and continue to try to sleep without the ambien but all I can get is about 1 or 2 hours and then I am wide awake so that is when I take the 1/4 tablet of the ambien. That seems to get me through the rest of the night. Not being able to sleep and/or having RLS and PILM are so difficult when trying to carry on a normal daytime life.

I wish you good luck 3dogs. I guess the solution is different for each of us.

Donna

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