Is it RLS ?

[JanIrv]

I’ve been getting leg twitches and foot tingling for the past 3 months, my GP originally diagnosed RLS and prescribed Pramipexole 0.088 mg and iron tablets as my iron count was 25, apparently 50 is the optimum count. The Pramipexole didn’t stop my twitches and the next GP I saw thought that RLS was the wrong diagnosis as I don’t get leg jerks during the night. My legs twitch when I’m resting, I don’t notice it when I’m standing and seems confined to my legs. My anxiety is now off the scale thinking the worse, any thoughts ?

[ChrisColumbus]

As you'll have gathered, RLS is generally characterised as an overwhelming need to move ones legs, rather than by involuntary twitching, and "Common accompanying characteristics of RLS include:

Sensations that begin while resting. The sensation typically begins after you've been lying down or sitting for an extended time, such as in a car, airplane or movie theater.

Relief with movement. The sensation of RLS lessens with movement, such as stretching, jiggling the legs, pacing or walking.

Worsening of symptoms in the evening. Symptoms occur mainly at night.

Nighttime leg twitching. RLS may be associated with another, more common condition called periodic limb movement of sleep, which causes the legs to twitch and kick, possibly throughout the night, while you sleep"

Leg twitches *can* indicate various conditions: my feeling is that particularly if your GP doesn't think that it's RLS they should have referred you for some diagnostic tests:

Blood tests: Certain blood tests could help identify underlying medical conditions that may be responsible for the symptoms. Beyond that an MRI, an ECG and/or an EMG may be necessary.

While any unexplained symptoms can of course be worrying, diagnostic testing should provide answers.

[JanIrv in reply to ChrisColumbus]

Thanks Chris, I’m wondering if stress is making it worse !!!. My GP has written to a neurologist with my symptoms but obviously this all takes time, she can’t refer me as, at the moment, I have no other symptoms

[ChrisColumbus in reply to JanIrv]

'Anxiety twitching' is a thing and can affect legs as well as eyes etc. But has your GP at least arranged blood tests to look for electrolyte problems or thyroid issues?

[JanIrv in reply to ChrisColumbus]

Yes I’ve had various blood tests, the only deficiency found was for my iron count which was 25, nothing was mentioned about thyroid at all

[SueJohnson]

Stress makes everything worse. Ask your doctor for buspar or some OTC supplements that help anxiety are Ashwagandha, L-theanine and Honokiol. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

[JanIrv in reply to SueJohnson]

Thanks Sue. All the above are true for me but don’t think I ‘kick out’ during sleep (periodic limb movements). I’ve been taking iron supplements for 6 weeks and magnesium for a couple of weeks, I have evenings when hardly any twitches or buzzing but other evenings my legs are twitching like mad making me even more anxious

[TeddiJ in reply to JanIrv]

Try not to worry so much, as if you do have RLS, it sounds like what most of us have or have had. A high percentage of RLS sufferers also have PLMD or some form of twitching and jerking at times. You may need to examine your diet and lifestyle to check for the myriad of RLS triggers, which would explain why some days are worse than others.

For now, try upping your magnesium and try both citrate and glycinate. You haven't been on it very long and perhaps you aren't taking enough. You may simply have a huge magnesium deficiency that is causing all the twitching. I once had a deficiency and I seriously thought I had MS. My legs were tingling and I couldn't even turn the pages of a book.

Ideally, you would not continue the PRAM, as more than likely it is just going to lead to more suffering down the road.

[JanIrv in reply to TeddiJ]

Thanks Teddij, the blood tests showed no magnesium deficiency, the only deficiency I have is iron !!! I am taking magnesium at the moment, not sure if it’s helping or not. I would ideally like to see a neurologist so I can get some answers but at the moment my GP said that I don’t have the criteria for a referral (no weakness or atrophy !!! No PLMD is present but I do keep moving my legs and putting them on the floor to get rid of the horrid crawling feelings in them

[TeddiJ in reply to JanIrv]

An iron deficiency can definitely cause your symptoms, as can augmenting from a DA like PRAM. Can you see another doctor, of any kind? Your GP sounds awful.

[JanIrv in reply to TeddiJ]

I’m seeing another GP on Monday so I’ll see what she says

[TeddiJ in reply to JanIrv]

That's great! Arm yourself with info, too, as it is normal for both GP's and neurologists to know very little about RLS or the latest research on it. For starters, it is important to know your ferritin number and to avoid going on any DA drug. Best of luck and I hope she is informed or at least open...

[JanIrv in reply to TeddiJ]

I’ll ask what my ferritin level is when I see the doctor, thank you

[SueJohnson in reply to JanIrv]

On the iron you may know this: take your iron tables with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. When your ferritin becomes between 75 and 100 or if your transferrin saturation was below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after after 3 months since you are taking iron tablets.

[JanIrv in reply to SueJohnson]

Thanjs Suejohnson. I take my iron before lunch along with a vitamin c supplement, I take magnesium 3 times a day at different times but I’ll adjust it as you recommend. My iron level was 25 when it was checked about 1 month ago, the GP said anything under 50 was low hence the iron tablets.

[SueJohnson in reply to JanIrv]

iron is absorbed better at night.

[SueJohnson in reply to JanIrv]

Also since your ferritin is so low, I would take 3 tablets or 75 mg and I would take it every 24 hours but no sooner than 24 hours apart.

[JanIrv in reply to SueJohnson]

Thank you. My prescription was for 1 tablet per day so I’ll increase it and take 1 at night, hopefully it’ll help. Thanks for your advice

[Hidden in reply to JanIrv]

Yes, night time!!! And NOT with the magnesium.

[JanIrv in reply to Hidden]

I’ll make sure I don’t do that, thanks

[Moonwalker1967]

I have the same issue. Feet twitch when lying down to rest. Unable to syop. I have an appointment with neurologist in Sheffield on 01. November. It is very scary as I think my rls and plmd may have turned to Parkinson's. I am only on vitamins and iron. No medication after decades of Pramipexole. Will keep you updated after the appointment. You need to get an urgent appointment with the neurologist, too!

[JanIrv in reply to Moonwalker1967]

Thanks Moonwalker1967. Hopefully your neurologist appointment will put your mind at rest as to what you’re dealing with, just wish I could see a neurologist, fingers crossed for both of us

[Hidden in reply to Moonwalker1967]

Hi Moonwalker, I’m going to venture a guess with you as well and other post DA spasmers. The DAs not only down-regulate our calming D3 receptors but also UP-REGULATE the somewhat excitatory D1 receptors. It’s postulated that the D1 up-regulation is more the culprit with augmentation. Anyways, it’s the Yin/Yang of our dopamine transport system. We need both and we need them in harmony. I think these post DA spasms are due to the grossly up-regulated excitatory D1 receptors even sometimes in the absence of RLS symptoms. The iron doesn’t seem to touch these bad boys, not sure though.

Teddi, my love and my Guinea pig, has been taking berberine in the morning because according to some articles I read it is a D2/D3 antagonist and a D1 agonist. I know that sounds like pure torture and it certainly would be if taken at night. But this is exactly what post DA (and even current) users need. They need to ANTAGONIZE the calming D3 receptors so that they grow big and strong (just the opposite of what the dopamine agonists do) and they need to AGONIZE the D1s so they shrink back to baseline. And as I stated, berberine allegedly does both, plus it has a short half life.

I think time alone will allow your receptors to return to baseline but who doesn’t want to speed the process up. And as the D1s creep back to baseline I believe there will be sporadic or even nightly involuntary contractions like a smoldering fire that will crackle and give off embers without any rhyme or reason as to timing

This is just a guess on my part

[TeddiJ in reply to Hidden]

Thank you, SanAndreas! Yes, I am happy to play guinea pig by taking berberine. If it works, boy will it be a huge victory for me and hopefully for the rest of the (DA-damaged) forum!

Thanks for explaining it all again here, too. I definitely have the nightly contractions-one common contraction (where my hips contract and both knees raise up toward my stomach when in bed) has replaced the regular rls type restless feelings in the legs on most nights. They are intense contractions to the point where I assumed I must now have PLMD, too, as my legs were no longer restless. But then some evenings I do have the old rls back in my legs as I try to relax.

The other weird abdominal sit-up contraction has popped up when I've taken (too much?!) suboxone and those (even more intense contractions) have lasted all day.

[Moonwalker1967]

Thanks for your message. I had to wait a year to get the referral. Only managed to get it by telling my GP that I am not coping and symptoms are super bad. Quality of life is down 👎 and it helps to get on the GPS back. Phone in as often as you can, so they will get fed up and refer you. Cry with desperation and make out symptoms are a little worse than they really are. Sorry for that advice as you should not really be lying, but it's the only way.

[JanIrv in reply to Moonwalker1967]

Wow 1 year is a long time especially when you’re anxious about the diagnosis and such a shame that we have to lie to get to see a consultant, it shouldn’t be so difficult, at least you’ve got your appointment now so fingers crossed you get some answers

[Hidden in reply to JanIrv]

Hi Jan, I’m gonna venture a guess here and offer this up as a possible diagnosis: medicalnewstoday.com/articl...

Please check to see if you’re taking any of the medications listed in the article.

Please take the iron an hour before bed on an empty stomach. Iron taken this way relieves my RLS in one hour….for one night. So I must repeat every night. Sadly, only ferrous bisglycinate works for me and not the cheaper forms of iron such as ferrous sulfate. The relief it brings is worth the extra money to me. However, some people find that ferrous fumarate brings them immediate relief as well

[JanIrv in reply to Hidden]

Thanks SanAndreas. My GP prescribed Ferrous Fumerate taken with a vitamin c supplement plus I’m taking magnesium. Really think my fascination’s feel worse when I’m anxious, which is generally if/when I Google my symptoms, which is definitely the wrong thing to do, I’m just looking for something to say it’s probably not ALS. BFS seems to affect multiple locations whereas mine is just both legs and feet

[Moonwalker1967 in reply to JanIrv]

Haha, wasn't lying just making it a little bit worse. I was on just about 4 hours sleep only every night and somehow need to try to get enough sleep, so I am managing my job. I need to be up early in the morning and want to keep my job. Very tricky, when not on medication. That's the main reason for the little exaggeration. Will let you know, how I get on. Not long to go, unless they cancel.