Is this RLS? So confused and need help

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Is this RLS? So confused and need help

Post by JazzyJoan »


New here. So would like to tell my story to see if anyone has had something similar?? I'm 43 year old female, decent diet, NO medications except advil.

Throughout my 30's I would experience (about 1 or 2 times a month) a jerking in my legs (Involuntary jerking) right as I would fall asleep. Causing me to wake up. Never thought much of it as I would always be able to sleep. Husband claims there were nights my legs were "twitching" he would get mad and put one of his legs on top of mine to hold it down. I never woke up or realized he was doing this...

Fast forward to last February 2018 at age 42. I went to bed and had one of my "twitching episodes", usually I would toss and turn until about 1 or so fall asleep and wake up tired but totally fine. Meaning legs felt fine ect. Only THIS Sunday I was awake almost all night with very little sleep and on Monday morning top of thighs felt weird. I had this feeling in my legs all day and Monday, Tuesday, Wed, and Thursday night. With hardly any sleep these days....By Friday morning I lost it and got in with a doctor. He prescribed me Mirpex .0125mg 2 hours before bed and told me I needed to take for 4 days and break the cycle. This drug did take the weird feeling away from my leg, but I was still jerking right as I was falling asleep causing me to wake up. I finally took Ambien 5mg and was able to sleep. I took Ambien for a few days, ONLY took the Mirpex for 4 nights and stopped. and after a week or so was fine. (I had other issues going on with an inner ear infection that took an additional 4 weeks to clear up) BUT by mid-april of last year I was back to sleeping my normal way, NO DRUGS, with about 2 nights a week (if that) of the "twitching" right as I fall asleep.

Fast forward to April 2nd 2019....I am back to same thing as last year and I'm in full panick mode. I do not want to be on medication but the only way I sleep is if I take Ambien to stop me from twitching. I have lower back soreness (not sharp pain just sore) that when sitting certain ways causes my legs to get that weird feeling. I know when they feel like this the involuntary jerking/twitching right when I fall asleep will be horrible.

My questions: Has anyone ever had a whole year "remission?"
Does your RLS act up every night?
Do you have involuntary twitching? It is not always just in my legs but also in arms and feels like all over. It is horrible.
I think my lower sore back pain might have something to do with this??? I wouldn't think that soreness in lower back would be a symptom of RLS?

THanks for any advise and I do have an appointment with my GP in two weeks.

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Re: Is this RLS? So confused and need help

Post by stjohnh »

Hi JazzyJoan, Welcome to the RLS community, lots of kind, helpful folks here and you will likely gets lots of support, good info, and suggestions.

One crucial point about RLS: when you have the leg sensations in the evening, while awake, do they get better immediately by getting up and walking around, only to return quickly when you lie down? If so, then you likely have RLS, if not, then you probably don't.

You probably do have Periodic Limb Movements of Sleep (PLMS). This is characterized by periodic leg jerking WHILE ASLEEP, generally not noticed by the patient, but causing problems for your bed partner. It is related to RLS but is not the same.

Be sure and ask your GP for a ferritin test, and be sure to get the numerical result (not just "normal"). RLS and PLMS are related to low iron levels, especially brain iron. The ferritin test gives some indication of blood iron levels, and if low, almost certainly means the brain iron is low as well.

Yes, remissions for long spells do occur, especially in the earlier phases of RLS.

Leg twitching just as one is falling asleep (usually lasting only a couple of seconds) is a normal occurrence and happens to most people occasionally, myoclonic jerks.

People with early RLS usually have intermittent symptoms, not nightly.

Low back pain is not a symptom of RLS, but anything that causes stress, including chronic pain, can make RLS temporarily worse.

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Re: Is this RLS? So confused and need help

Post by JazzyJoan »

stjohnh - The sensation in my legs isn't too horrible, it does get slightly better by walking. I've noticed on the last 3 overseas flights I've been on during the last 2 hours my legs are jumpy and bother me, however once we land and I get up and walk it is gone and never returns...

I guess I'm more concerned about the twitching cause that is what is really keeping me awake. and how it can be gone for basically a year and now back with a vengeance...I read about how things get worse and I'm soooooo parinod that this is the time it is here forever. every night.

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Re: Is this RLS? So confused and need help

Post by sleepdancer2 »

Your mention of your hubby holding your legs down at night certainly sounds like periodic limb movements. Don't know if the jerks when falling asleep are myoclinc jerks or if as you doze off periodic limb movements kick in. I agree with the previous poster who suggests you have your ferritin level checked. I think these days it's recommended those with limb movement issues keep their ferritin up near 100. We need to maintain higher levels than what is normal for the general population. Probably would be a good time to check some other things like your Vitamin D and Magnesium levels. Anything important to nerve and muscle function. Hopefully these efforts will be enough to help you get some better sleep. I find it helpful to use a TENS Unit on my lower back before bedtime. Seems to interrupt the signals between my brain and my legs and calm the jerking enough to sleep. Good luck with things.
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Re: Is this RLS? So confused and need help

Post by JazzyJoan »

Thanks. Jerks are definitely when awake. Broke down and took .025 mirpex last night and symptoms were gone in 10 minutes. Now I know for sure it’s RLS and I dread it getting worse. I went the past 13 months without any major episodes. :( hoping it calms down soon and let’s me have another 13 months!

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Re: Is this RLS? So confused and need help

Post by Polar Bear »

I find it interesting that your symptoms were gone 10 minutes after taking .025 mirapex. I would not expect mirapex to have worked anywhere near as quickly as this.
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Re: Is this RLS? So confused and need help

Post by badnights »

Hi Jazzy!
I'm glad you're here and getting some knowledge before plunging into the medication route.

Re the lower back pain: for years there have been anecdotes of people whose WED/RLS seemed to start with back pain or be related to back issues. There is nothing beyond anecdotes on this potential relationship. See Debbluebird's posts on this board for an example of someone who had back surgery for something else after years of RLS/WED, and is now perhaps free of RLS/WED or at least it is much improved.

Your involuntary twitching is, as Holland mentioned, probably Periodic Limb Movements (PLMs). If you have them bad without another sleep disorder, they can be called a disorder in themselves; the name used for that is Periodic Limb Movements in Sleep (PLMS). There is also PLMW (periodic limb movements that occur during wakefulness, commonly preceding sleep onset). You seem to have both, but don't worry about the names, the separate designations are largely irrelevant.

A common factor between WED/RLS and PLMS is that they get worse with low brain iron. The concentration of iron in the brain is hard to measure but you can use blood levels of ferritin as a proxy. Ferritin is an iron storage protein. Low levels of ferritin in the blood show that iron stores somewhere in the body are low. You can have lots of iron in your blood or other tissues but low iron in your brain. So get your blood checked for all the iron parameters, making sure they include ferritin because they don't always, and if your ferritin is lower than 100, try supplementing with oral iron (as long as your doctor says you're not in danger of iron overload).

You might also have WED/RLS, but instead of worrying about that, be reassured that dealing with low iron will probably help both the RLS/WED and the PLMS. Not everyone's RLS/WED gets worse. Don't go by what you read on this board - the people who don't get worse don't bother to post here. You are not doomed.

Be ultra cautious of the dopamine-type medications like Mirapex/pramipexole and Requip/ropinirole, and especially Sinemet/levo-carbidopa. Don't take them until your ferritin levels are over 75 or better still, 100. Don't ever (ever) take Sinemet daily. Avoid taking the DAs (Mirapex and Requip) daily if you can. The dopamine meds will typically eventually make WED/RLS worse, in an utterly nightmarish way, worse than anything you have experienced so far, and may permanently alter the function of the dopaminergic systems in your body.

Since you're still a newbie as far as the dopamine-type meds go, I would think you might be effectively treated by an anti-convulsant instead, thereby removing the danger of augmentation. You could ask your doctor to switch you over to Horizant/gabapentin encarbil (very expensive but effective), Lyrica/pregabalin (kind of expensive, effective), or Neurontin/gabapentin (cheap but erratic). These anti-convulsants (more specifically, alpha-2-delta ligands) can be effective against WED/RLS, as well as in promoting sleep. (They can cause a depressed mood, so be on the lookout for that and change meds if it happens.)

In summary: don't despair! Get your ferritin levels checked and supplement with oral iron if ferritin is lower than 100. Ask to switch from dopamine-type meds to one of the anti-convulsants. If you have to go back to the dopamine meds, try not to take daily and keep the dose as low as possible.
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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