RLS but no problems sleeping.

[kel12345]

Has anyone with RLS, while sitting and laying down, BUT HAD NO PROBLEMS GOING TO SLEEP, OR STAYING ASLEEP?

It seems all the posts are from people saying the RLS prevents them from going to sleep, or staying asleep. NOT ME, AM I WEIRD??

[Madlegs1]

Just a little unusual.

What are your exact symptoms of rls?

[kel12345 in reply to Madlegs1]

Symptoms are my legs continously shake, when I sit and laydown. Day and night. I can sleep at night no problem. Thanks for replying.

[Pippins2 in reply to kel12345]

Do you have to keep moving them? Do you have a very strong urge to move feeling /sensation that you can't ignore? Do you have to kick your legs about? Do you voluntarily move your legs or do they shake by themselves? Do you have to get out of bed and walk about? C

[kel12345 in reply to Pippins2]

Hi,

Yes to all your questions, but I don't have to walk around. I'm so confused,

[nightdancer in reply to kel12345]

I am glad you are going to see your doctor. We are called Nightwalkers for a that reason. When the dopamine drops at night time, the RLS ramps up. So, if you are never getting that at night time ever, it may not be RLS that you have. But, we do not know you well enough yet to make a guess. Anyone with RLS would kill for the sleep you are getting. The diagnostic criteria, all 5 listed, states "you MUST have the urge to move that you cannot ignore" . irlssg.org These are the people who set the diagnostic criteria and I am very familiar with them and their work.

[Madlegs1 in reply to kel12345]

As Pippin's above.

I'm thinking this is more likely some neuropathic issue. Has anyone diagnosed you with rls?

Most people with rls would be utterly delighted to get the sleep you describe.

I'm sure the shaking all day is very distressing, I know friends who have severe Parkinson's and it is truly awful.

I hope you get relief.

[kel12345 in reply to Madlegs1]

Hi,

Isn't RLS a neuropathic issue?? I have not been diagnosed yet. I have an appt. with the neurologist in a couple weeks.

[nightdancer in reply to kel12345]

neurological, not neuropathic.

[Unhappygirl in reply to kel12345]

No way is that RLS, sorry

[kel12345 in reply to Unhappygirl]

Why do you say that? My legs shake when I sit down and alot more at night when I lay down. Besides Parkinsons, what do you think it may be?

[nightdancer in reply to kel12345]

What does it FEEL like? You keep saying "shaking legs". There are many ways to look at that, with different meanings.

[SLMCP]

Long may it continue 😊

[kel12345 in reply to SLMCP]

What, my legs shaking continously?

[SLMCP in reply to kel12345]

Yes !!!!!😀😂😂

[nightdancer in reply to SLMCP]

I think you mean may the sleep continue, not the shaking of her legs.

[Kaarina Administrator]

Hi Kel

You mention in another posting that your RLS symptoms only started a few months ago. What happened/changed in your life around that time?

[kel12345 in reply to Kaarina]

The only change I can think of is the addition of hydrOXYzine for anxiety. I only take maybe once a week.

[Kaarina Administrator in reply to kel12345]

Just a thought. See Medications to Avoid in this link. rls-uk.org/treatment/

Antihistamines are listed in this link, to avoid if possible, but not specifically Hydroxysine but it is an antihistamine as well as used in the short-term to treat anxiety.

[nightdancer in reply to kel12345]

Anything that ends in "zine" can be a trigger for RLS, most antidepressants are triggers for RLS. That may be your answer there. Kaarina is right. Look at the list of Drugs to avoid. Antihistamines can be evil for us, and also stay away from any over the counter med with Diphenhydramine in it. 99.9% of us cannot take most antihistamines at all.

[kel12345 in reply to nightdancer]

Thank you. Where can I find "the list of drugs to avoid"?

[kel12345 in reply to kel12345]

I found the list and am taking it to my neurologist appt. Thank you.

[Kaarina Administrator in reply to kel12345]

You're welcome. Pleased that you found the list of Medications to Avoid in the link I posted for you. An excellent idea to take this list with you to your neuro appointment. The RLS-UK website provides some very helpful information. rls-uk.org

[kel12345]

Thank you. I have an appt. with the neurologist in a couple weeks. My nighttime shaking is worse than the daytime shaking. Do not have a strange pulsating feeling. Just urge to shake my leg.

[nightdancer in reply to kel12345]

and there it is, the "Urge to shake your leg". That is what I was looking for. The URGE to move. Look it up on here for the RLS criteria. irlssg.org They set the criteria for diagnosis. And the URGE has to be there. You may have a milder case that lets you get more sleep. Can I ask you approximate age? RLS is progressive as get older.

[kel12345 in reply to nightdancer]

I am just turned 61 years old.

[Unhappygirl]

The only reason l didnt think it was RLS is because your symtomes didnt sound like RLS but everyone is different. Only a medical person can advise you properly

[kel12345 in reply to Unhappygirl]

Symptoms dont sound like RLS? The non stop shaking legs?

[Madlegs1]

The fact they don't keep you awake certainly doesn't sound like rls. Shaking or not.

Does moving the legs give respite? That is the crucial point.

[kel12345 in reply to Madlegs1]

I dont understand, "Does moving the legs give respite?". I have to constantly shake my legs. It's involuntary.

[Madlegs1 in reply to kel12345]

Then , I would say it's definitely not rls.

But really, this is all quite pointless- trying to define whether, what you are experiencing, is rls or not.

You have what you have.

The real question is, what can help you?

It's quite likely that most rls medications, such as Pramipexol or opiates, will quieten your movements, but only a neurologist can really decide. You are not in pain, as such,- just need to stop the involuntary shaking.

Hopefully, your visit to that eminence, will help you get some peace.

All the best.

[Madlegs1 in reply to Madlegs1]

I'm adding a link that may help you , before you go to the specialist.

mayoclinic.org/diseases-con...

I hope this will give you some ideas.

Cheers.

[kel12345 in reply to Madlegs1]

Thank you.

[Hidden in reply to kel12345]

Kel, the urge to move is voluntary, we HAVE to move our legs its a urge we cant resist, its not involuntary. By moving our legs it gives some relief, thats why we pace. But as Madlegs said we can discuss it til the cows come home. Just make sure the neuro knows what the RLS criteria is for you to be diagnosed. Good luck.

[Daewood1949]

So glad it's not Parkinsons'-how are you now?

[kel12345 in reply to Daewood1949]

Legs still shaking constantly.

[Hidden]

irlssg.org/diagnostic-crite... This is the criteria for RLS, all must be met,

[kel12345]

Did the muscle relaxers stop the shaking????

[Kyelouie1987]

Hi kel

I’m new to this forum and reading you msg sounds a lot like what I’ve been going through since I was 15. I’m now 34 and still nowhere with the doctors, I’m now being referred to guys hospital to discuss about rls as I’ve been told it’s not arthritis and I’ve had key hole surgery. Could you tell me if you’re knees are painful especially after walking or standing/ sitting for a period of 5 maybe 10 mins at a time. Also when I sit down driving or just at my work bench during the day I get the urge to moving my legs and when I walk the knee slips forward. Are you getting any of these symptoms.

Thanks Tony

[kel12345 in reply to Kyelouie1987]

Tony,

I am not getting any of the symptoms you describe with your knees. I do have the urge to move my legs when sitting and lying down.

[Kyelouie1987]

Ok thanks for the reply

[Hidden]

Hello.

Glad to know someone else is like me. I have RLS I am told in my foot and in pain all day every day but - as soon as I am settled and comfortable at night - it does not bother me. Very experienced people on this forum say that if that's the case then it is not RLS but possibly some form of peripheral neuropathy. Seeing consultant at end of August to get results of MRI scan so will see what happens after that. All very interesting though.