Restless legs or Periodic limb movement

[Catslover-1]

Hi everyone , I think I have restless legs but not been diagnosed, doctor has treated it as restless legs , my legs don’t just move around they intensely kick or jerk out at force in the air , but I do have the sensation before that happens , like my leg is getting ready to fire! Which it does then builds up again , does anyone have this fear intense movement or could it be the periodic limb movement, this happens when I am awake , sitting on a plane , but not straight away , maybe ok for three hours of a flight then it would start and then I have to stand up , any info would help , many thanks!

[Madlegs1]

What medications is the doctor giving you?

Also, please read up on any of Sue Johnson's replies to many similar posts on this site.

Good luck.

[Catslover-1 in reply to Madlegs1]

Hi there and thanks for your message , I have tried Pramiprexole and Ropinirole but terrible side effects but I was unable to properly function at work , thank you , I will have a good read ,

Pam.

[SueJohnson]

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. Since you describe your legs moving and jerking on their own, it is probably PLMD, However they are both treated the same. I am glad that you had problems with both pramipexole and ropinirole because they are no longer the first line treatment for RLS since up to 70% of people will eventually suffer from augmentation which believe me you don't want. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Ask your doctor to prescribe gabapentin.or pregabalin which are now the first line treatment for RLS. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors are not uptodate on it as yours isn't or s/he would never have prescribed those medicines at Https://mayoclinicproceedings.org/a...

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga. Many medicines and OTC supplements can make RLS worse. If you list any you are taking I can tell you if that is the case and perhaps can give you a safe substitute.

[Catslover-1]

Hi Sue , thank you so much for your very detailed reply , I am having bloods done Monday and GP will ring me Wednesday , I will ask for the Gabapentin to try , he did say if the ropinirole wasn’t suitable then we could try that , I’m a Pharmacy Tech and check prescriptions all day so need to be alert , this is the problem with many drugs unfortunately, but there has to be something that works! Where I work there are so many people who take Gabapentin so it can’t be that bad! Let’s hope!

I will also mention all the iron levels you have explained and work towards that if need be ,

I did go and see a chiropractor at one point but she said it wasn’t coming from my back , and I also had two MRIs that came back clear , also have had breast cancer so some herbal supplements I have to avoid ;(

Hope you continue to feel well and lovely to hear from you.

Thanks

Pam

[Amrob]

Yes, your description sounds familiar to me. I have been diagnosed with periodic limb movement disorder. I may or may not also have RLS.

If you have it while awake (as i do), you almost undoubtedly will have it while asleep. Do you feel tired on wakening?

Was that the prompt for you to see your doctor, or is the movement itself particularly bothersome?

[Catslover-1 in reply to Amrob]

Hi there and thanks for your message , I haven’t been diagnosed with either, it’s just guess work and research ;(

I’m having more bloods done on Monday,

I get the leg jerks when I sit in the evening , sit on a plane after a couple of hours and have to stand as horrible sitting squashed on a plane and feeling like this ;(

I feel tired everyday ;(

I went to the Doc years ago as it all started when I was on a plane , on and off for years , pramiprexole didn’t agree and didn’t bother taking anything for years as it wasn’t too bad , but now it’s terrible so he gave me ropinirole but I had hallucinations and sickness so I didn’t bother , need something that works without these terrible side effects as a have a job I need to be very alert , how are you coping?

Pam

[Amrob in reply to Catslover-1]

I take pregabalin 300mg and have done for several years. The side effects are considerable but they are preferable to being constantly sleep deprived in the extreme.

For anyone, it's really a matter of weighing up how much the condition is affecting their life vs the side effects of the medication. Many people get to the point where they need medication just to function.

[Catslover-1 in reply to Amrob]

Can I ask what side effects you get?

I had terrible side effects from the dopamine agonists , only tried for a few days and stopped them, sleep is so important

Hopefully I will have some Gabapentin this week to try and all goes well , thank you for all your help .

Pam

[Joolsg]

Yes. I used to get this regularly when on Ropinirole. The intense RLS would make my legs jerk violently.

It's actually a good thing that Ropinirole and Pramipexole didn't agree with you as they are no longer first line treatment among experts. UK is around 10 years behind best practice. NHS and NICE guidelines are out of date.

Read the Mayo algorithm- it's the new RLS bible.

Sadly RLS is not taught at medical school or at any stage during training and so even neurologists do not know more than absolute basics.

Dopamine agonists inevitably cause severe worsening of symptoms for nearly everyone taking them and that's why they're no longer first line treatment. Mayo guidelines advise checking iron levels first and eliminating trigger meds like anti depressants, anti histamines, statins, beta blockers & PPI meds.

Raise your serum ferritin levels first, eliminate trigger meds and then if needed, start pregabalin or gabapentin

If they fail, low dose opioids are then used.

[Catslover-1 in reply to Joolsg]

Hi there and thanks for your message , mine are really violent , people are a bit shocked when they see it ;(

That’s ridiculous, as it seems so many people have this ;(

I will have a read thank you so much , I was taking sertraline but have stopped this and also amitripyline for TMJ stopped this also , taking nothing now , nothing seems to have changes though ;(

I will suggest to my Doctor about the Gabapentin and Pregabalin , do you take any of these if it’s ok to ask?

I am having bloods done Monday so see what the iron is , thank for all the info

Pam

[Joolsg in reply to Catslover-1]

Sertraline and Amitriptyline are RLS triggers. Hopefully, now you're off them, your dopamine receptors will settle.

Your GP will say bloods are fine but ask for print out as normal for others is not normal for RLS.

I tried both gabapentin and pregabalin after years on Ropinirole but they didn't help at all. US experts think that's because Ropinirole and Pramipexole casuse permanent damage to the dopamine receptors and stop gabapentin/pregabalin working.

I'm on 0.4mg Buprenorphine, an opioid used to get people off heroin. It works on different opioid receptors to other opioids and is the only one that works for me.



[Catslover-1]

Hi , yes I’m off these tablets now and yea hopefully it will settle down .

I will thanks , I believe I’m looking for iron levels to be greater than 50 ug/ml , I will explain this to my GP.

I’m glad you have something that helps now , so many people are suffering with this , I have bought a therapulse device which is made by doctors , it’s early days but I’ve used it twice and seems to do something so I will see how that goes also , thanks for all your help .

Pam

[SueJohnson in reply to Catslover-1]

You want your ferritin to be over 100.

[Catslover-1 in reply to SueJohnson]

Hi Sue, spoke to GP today and he said my bloods were all fine , then I asked the ferritin level and he said 56! So I explained it should be 100 or more so I have bought Ferrous sulphate 200mg and will take one three times daily and see how I do , he has also prescribed some Gabapentin and Diazepam for if I require them, hopefully the iron will fix me out , thank you for all your help.

Pam.

[SueJohnson in reply to Catslover-1]

Don't take it 3 times a day since that does not result in an increase of absorbable iron. If you want you could take 2 tablets once a day. Taking 3 won't result in more absorbable iron. Be sure you take it at the same time each night since you want it to be at least 24 hors apart. Take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it preferably at night since it is absorbed better then, 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. Don't take tumeric as it can interfere with the absorption of iron. If you take magnesium or calcium supplements don't take them at the same time as iron tablets as they interfere with iron's absorption. Take them at least 2 hours apart. Also antacids interfere with its absorption. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets.

[Catslover-1 in reply to SueJohnson]

Thanks Sue , have taken two tonight with some orange juice , will just stick to that every night , thanks for all the information , my doctor just went through drugs that could be given , Levo-dopa! Tegretol!eh no thanks! They just don’t know much here at all , I had to tell him!

I really hope the iron is the answer , if I get my iron up to 100 , should I continue with one tablet daily or stop for a while?

Thanks

Pam

[SueJohnson in reply to Catslover-1]

You could then go to 1 every other day which is the usual recommendation for iron.

[pianoplayerPLMD]

hello, Pam, I've just seen your post, and it rang gong-like bells with me, as I have what I think is PLMD, and, though I experience exactly the same phenomena as you, legs lashing out whilst sitting, and the kind of "building up", (for me it's like a powerful thigh-tensing up feeling), and then the huge leg-kick, and then, the tension goes, for 15-20 seconds or so, till the next one builds up. It means - because it happens mainly in the evening - concerts/ films/ restaurant visits are problematic, unless I can walk around.

But unlike you, I'm on Pramipexole, so all the things I experience are the presentation of augmentation I think, though for some reason, the Sleep Clinic Consultant I've been seeing over 2 years insists it is NOT augmentation, (he says I haven't been taking the medicaation for long enough - isn't 2 years long enough, I'm wondering), though cannot say what it IS.

I am wondering what your sleep is like: do you get this horrid kicking while trying to sleep? what do you do about that? That's what I experienced, to start with a few years ago; (luckily my sleep is not too bad, no kicking that I'm aware of, but patchy sleep).

I have paid much attention to the advice given on this website, especially to that of Sue Johnson, who suggests I change my medication, and this is something I will definitely not rule out if my nights deteriorate.

Thanks for sharing your experience.

[Catslover-1]

Hello and thanks for your message , it sounds like you do have the same as me , I wondered as mine sounded different to others who have restless legs, the jerking and intense feeling is quite scary to watch , I find it’s when I sit down in the evening and at night , or in the car and on a plane , it’s such a horrible feeling ;(

I didn’t take these drugs for long and people have pointed out to me they aren’t the best and can cause problems later , I hope you can sort your meds out , 2 years is a long time , I believe the uk are at least ten years behind the US for treating this and knowing the best meds and information, I think we find to educate the doctors here!

I have had the horrid kicking at night time and all night and can’t function the next day which isn’t good as I am a pharmacy tech and need to be alert

My daughter bought me a weighted blanket which is really good and calms my legs , I also bought a therapulse device which sends impulses into your leg and confuses your brain which is meant to break the cycle , only just started using this so I will let you know how it goes ,

Nine times of of ten once asleep I’m not to bad but do have bad nights also ;(

I have also stopped going to the gym as this seems to make it worse ;(

Sue is very good and has given me lots of info too! It all helps , hope you continue to be well 😊

Pam

[Edward567]

Hello Catlover-1, Yes you do have restless legs syndrome but don’t worry. Generally over years the urge to move the legs get worse and now I take Pramipexole. My symptoms are the same as yours. Standing up and they stop! If my leg starts up before my tablets are due I go for a short walk. This website has helped me as it seems members are trying to wean off their medication so I am not going to take more than four Pramipexole per day if it does get worse. I hope my message helps.

[Catslover-1]

Hi and thanks for your message , yes I find moving around helps , not so good when I’m flying!

The members on here are so friendly and helpful , I have learned so much in a matter of a few days , good luck and you continue to stay well ,

Pam