Hiya - I wanted to let everyone know that my physio gave me some exercises to do for RLS (well Restless everything Syndrome...). I've been doing these - plus some of my own - for a couple of months now, and the difference they make is this: I can delay taking medication for at least a couple of hours and am taking less Rhopinirol. Still take Gabapentin. But as soon as I feel that damn fizzing, I do some of these and they do delay the RLS a little.
I think they work (temporarily of course) because they're stretching exercises and the relief I feel stretching those annoying areas that RLS affects is exquisite! Shoulder bridges/spine curls really get the glutes tightened and, I don't know about you, but I get appalling RLS in my bum cheeks! The 'hip abductions' (lol) stretch inner thighs and again, feel wonderful. The weights stretch my sides.
I also 1. stretch tall, lace my fingers together and stretch back as far as I can, arching my back, and then forward (this feels great for sides, back of legs and arms) 2. swing my arms round to back (twisting my body), one way then the other (keeping arms high), which is great for arm RLS and sides.
These may not work for everyone but PLEASE PLEASE give them a try - stretching exercises do seem to help a little.
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Yes, I have found stretching very effective. I have gotten by with this plus a very small toke of cannabis (legal in Canada) for a couple of years. But my sleeping challenge has been renewed by Erythomelalgia, in brief, hot red feet. Intermittent, but chiefly at night, Not yet a confirmed diagnoses (next week to see the results of blood test) but I am pretty sure after extensive research with Dr Google. Only 1 or 2 people per 100,000! Lucky or what!
I did have some foot issues with RLS , more likely neurological, so the Erythro kind of snuck up on me. it effects peripheral areas, hand and feet mostly, and Involves something to do with blood and and vascular elements. Exacerbated by lower body exercise
You know I’ve had hot red feet for as long as I can remember - 62 now and I remember being embarrassed by how red my feet were at school! My RLS started in my feet long time ago and gradually crept up the rest of my body, so maybe there's a connection?
Hi and I'm very pleased to hear that you're finding the exercise so helpful in relieving your symptoms. I admire your discipline and suggest you persist with this.
However, as you're aware of yourself this is only going to provide temporary "relief" of symptoms. It is not going them happening in the first place.
It's good of you to take the time to suggest to others than they can benefit from what you're trying.
RLS is a central neurological condition, hence physiotherapy, at best, will be of little help in the long term.
In turn, I suggest you carry out a review of your whole RLS management plan. It doesn't sound as if it's working that well and you appear to be dissatisfied with it as it is. I would be.
Perhaps we could help you with this.
You could start this by telling us what dose of ropinirole you're currently taking, when (time) you take it and how long you've been taking it.
The same is for the gabapentin.
From what you do say, I highly suspect that it's the ropinirole that is actully causing you more harm than good and I'd like to see if that can be confirmed. In which case there may be some solutions for you.
Briefly - for now - oh yes ropinirol is a nightmare which is why I’m sooo glad I can take less now, so there isn’t so much augmentation. (I’ll post how much I’m taking of each when I’m home.) Sure I’m well aware this isn’t a cure but it’s so good to have temporary relief and that awesome feeling when streeeeetching. Get back to you with doses, thanks so much for feedback.
I'm lucky enough to only take 0.5mg ropinirol now - used to be 1.0mg. I take 400mg gabapentine. I still think stretches may help those who have to take more - to at least alleviate for awhile. (Other meds incidentally: citalopram 40mg, omeprazole 20mg, Colosevelam 625mg, thiamin 200mg, vit B strong compound, plus multivits, and now - thanks to your advice - will take my iron tabs in the eve.)
Hi, going through your post again, I see I've not responded to this.
Sorry for the delay.
0.5mg ropinirole may not seem a lot, but it's not an insignificant amount. I think if you missed out a couple of doses, or even one, you'd notice that.
I still suggest you quit ropinirole entirely. NOT suddenly though.
In my case, I was taking a dopamine agonist (DA) which is what ropinirole is and what a difference it made!
I can't emphasise that enough. I really hadn't appreciated how bad a DA can be until I stopped it.
In addition, hopefully, as I may have written earlier, this may enable the gabapentin to be more effective.
As regards that, 400mg gabapentin on its own is probably not enough.
A typical minimum effective dose is at least 900mg. Often more is needed.
In my case again, I was at one point taking both a DA and 900mg gabapentin. The gabapentin was actually for nerve pain. I was suffering severe augmentation at the time. Gabapentin had no effect whatsoever on augmentation.
After withdrawing from the DA, unbelievably, at one point I reduced to 600mg gabapentin and rarely had RLS symptoms at all!
I have had to increase to 900mg recently, but not just for RLS. I can't remember when I last had a RLS symptom!
This doesn't work for everyone, I consider myself very lucky. But it's worth a try. It's only a suggestion but increasing the gabapentin a little may bring you more henefit than further harm.
Citalopram is a major aggravating factor for RLS. The adverse effects of Antidepressants on RLS are mentioned in most of the literature about RLS. Again referring to my own case, with hindsight, I now believe that if I'd known that 11 years ago, I may never have started on RLS medication at all.
I have taken citalopram a a couple of times since. This was really out of necessity. Both times I took it for 6 months only and also took a psychological therapy during treatment and withdrawal.
This is a difficult one!
I can't apply my experience to anybody, but I am aware through literature that long term antidepressant therapy is not appropriate for most people. If any. People have been told they have a biochemical imbalance! This is a myth.
In the UK national guidelines for the management of mild to moderate depression are being reviewed.
I believe that antidepressants will no longer be recommended as a first treatment.
The transition to this could be a nightmare. Adequate alternative therapies will need funding and setting up.
Your best option longer term, as regards RLS is to get off the citalopram.
Some people may suggest RLS safe alternative antidepressants.
It's only my personal opinion, but the one's suggested aren't really worth considering. This is because some, classed as antidepressants, are better used for sedation. If that's what you're using citalopram for then trazadone or nefazadone are RLS safe alternatives to citalopram.
Other suggestions are actually classed as "mood stabilisers". This is great if you suffer mood swings/bipolar disorder. They do not "lift" depression.
A popular RLS safe alternative antidepressant is buproprion. Unfortunately, known as wellbutrin, this is not available in the UK.
If you take citalopram for anxiety. Then again, longer term, psychological therapy may be better. There are alternative meds for anxiety with no need for you to add more. Gabapentin can treat anxiety!
Overall, if you currently really, really need an antidepressant citalopram in terms of effectiveness versus its effect on RLS is possibly the best option available.
Sorry, if this getting tedious.
Omeprazole - a proton pump inhibitor (PPI) antacid. Brilliant perhaps at what it does do. It reduces the secretion of stomach acid thus great for conditions where stomach acid burning is an issue. I believe it is long acting, i.e. does this all day.
Long term use of a PPI can make RLS worse. It possibly does this by interferring with iron metabolism. Low iron makes RLS worse.
I suggest discussing aternatives with a pharmacist. Note that H2 inhibitor antacids have the same issue. Perhaps "old fashioned" short action antacids, taken after a meal might work. You don't take iron with a meal.
If you have IBS any sub-clinical inflammation you have from this will be contributing to your RLS. Have you considered probiotics?
Vitamins! Jar loads. My opinion, These may all help if you have any deficiency. If no deficiency then you're probaby already getting all you need in your diet anyway. There's no apparent evidence that taking extra, more than you need, is of any benefit. An excess of water soluble vitamins usually ends up in the toilet.
There is good evidence that vitamin B12 DEFICIENCY can make RLS worse. If no deficiency, no benefit.
It's the same for vitamin D, although less significant. Vitamin D deficiency however is quite common.
If you have your blood iron tests, get vits B12 and D done too!
The aim of all this is NOT to stop you exercising!
The aim is to prevent RLS symptoms.
You will find your own balance I hope.
Put all your exercises, meds, supplements etc in a (metaphorical) box.
Pick them out one by one and ask yourself for each, how much is this a benefit (B) and how much a cost/disadvantage (C).
If C is greater than B, then consider throwing it out.
Thanks Elffindoe - very detailed but appreciated. As I have a hiatus hernia I really can't drop Omeprazole; if I stop taking for even a day, terrible acid problems and pain in diaphragm, which is why I need long acting. Citalopram - I did try reducing bit by bit, but even reducing from 40 to 30mg caused panic attacks. I'll talk to my doctor about that anyway. (Chemists in UK can't prescribe without reference to a doctor.) Vitamin B12 is for previous alcohol overuse. I will talk to my doctor about ropinirole and gabapentin. As it happens, I now need less ropinirole prescribed as I'm taking less - and I'll ask for more gabapentin and see how I get on. Thanks again.
Please don't take anything I write as some kind of rule.
All I hope to do is to provide you with some information to enable you to make some decisions which you might find beneficial. I promise not to write again. Honest!
This doesn't oblige you to to do anything at all, if you so wish.
It's your box (as in my analogy) and it's your choice to pull out whatever you like, look at keep or discard it as you choose.
I don't know enough about you to make your decisions for you, they're your decisions. E.g. I didn't know you were taking citalopram for diaphragm pain.
I did suggest that you might talk to a pharmacist about alternatives to these. You could still do that.
I do appreciate that pharmacist can't issue prescribable meds without a doctors prescription. Again, this is just information, but be aware that
a) a qualified pharmacist may know more about medicine options than a doctor does
b) a pharmacist may be able to advise about alternative medicines that don't need a prescription
c) a pharmacist can advise a doctor what to prescibe.
I fairly regularly consult a pharmacist. I recently did a med review with one and he then advised my GP who issued prescriptions as advised by the pharmacist.
NOTE he was a qualified pharmacist, not a dispenser and not just a pharmacy sales assistant..
Presumably the Dr prescribing you omeprazole and citalopram has no idea that these make RLS worse.
Hiatus hernia is a "mechanical" not a chemical problem. I really don't know what advice people are given now, e.g. from a dietician or a physiotherapist. There's possibly an overdependence on drugs. Oher measures require lifestyle changes.
My suggestion is for the omeprazole and citalopram if you decide that the benefits are greater than their costs to your RLS, then don't discard them. If you decide to keep them then at least you're reassured you're doing the right thing.
Vitamin B12. I don't recall you previously mentioned this. If you are taking this and have a reason for it and have a detected deficiency especially then by all means carry on.
I do apologies for offering some further information about this. I am a pest, a dog that won't let go.
If you had a vit B12 deficiency because of alcohol overuse.
If that was the case, then usually what's happened is that at some point your stomach has been damaged and that has led to poor vitamin B absorption.
VItamin B12 is a special case because its absorption depends on the stomach producing a chemical known as "intrinsic factor". Basically without this factor, vitamin B12 is not absorbed.
Some people are born with a congenital lack of intrinsic factor and this causes "pernicious anaemia" - lifelong. I'm not saying you have this!
The question is - was the damage casued to your stomach temporary or irreversible?
If it's irreversible, permanent damage, then that would suggest that to maintain vit B and vit B12 you need to continue vit B/B12 replacement.
However, please note this, if you have a permanent issue with absorbing vitB/B12 due to stomach damage, then taking oral vits is of little or no value. You can't absorb it!
Sorry again. In this case perhaps you can pull, the multi vits out of your box and ask, benefit or cost. The cost here may be literally money cost. A vit B12 blood test would be simple enough to help you make a more informed decision.
A litte more about iron.
Blood tests for serum iron, transferrin saturation (TSAT), ferritin and haemogoblin.
If serum iron and/or TSAT are low, you probably have serum iron deficiency. If haemoglobin is also low then you have iron deficiency anaemia (IDA).
These need treating with iron.
If TSAT is less than 45% (normal or "OK") this is considered safe for you to receive iron therapy.
In that case if ferritin is less than 75 ng/mL then it's a good idea to start taking an oral iron supplement. The aim of this is to increase ferritin to at least 100ng/mL. Doing this will benefit up to50% of RLS suffereres.
The ideal ferritin level for with RLS is 200 at least.
RLS sufferers who receive IV iron infusions show a 60% success rate = no medications needed.
Ferrous bisglycinate (gentle iron) is popular. This is an over the counter food supplement and requires no prescription. Prescibed iron is NOT recommended.
It is widely accepted that the best way to take oral iron is-
Take at least two hours after eating or at least one hour before, later in the evening.
Do not take any antacid at the same time including magnesium.
Take vitamin C or folic acid at the same time
Research suggest that taking iron only once every OTHER day, not daily is more effective.
That's what my mum gave me when I was a kid, teaspoon of sodium bicarbonate in warm water.
Yuck!
It worked. However that was indigestion, not gastric reflux or hiatus hernia.
It worked because soda bic is alkaline which neutralises acid
There are also antacid products that work similarly.
These antacids are short acting, once they leave your stomach, they will stop neutralsing any acid which is secreted into your stomach.
PPI/H2 inhibitor antacids however prevent the acid being secreted in the first place and they are also long acting. To put this another way, they continue to work even after your stomach has emptied. Hence, they would overall, appear to be more effective.
One way of dealing this and dealing with reflux is to contain the neutraliser in a gel which adheres to the walls of the esophagus/stomach. The antacid literally sticks around longer.
One such product in the UK is "Gaviscon". You may have heard of it.
Poeple with reflux used to be given lifestyle advice which was basically to avoid gravity! (This was before spaceX).
i.e. SMALL frequent meals.
High fibre meals
Avoid hot/cold/spicy food.
No alcohol
Sleep semi-prone
Stoop don't bend
Not very popular
At one point people with serious reflux due to hiatus hernia could have surgery. This I imagine is now totally impossible. It involved a considerable life risk as it was thoracic surgery!
A one time experimental procedure was the implant of basically a rubber band around the esophagus just below the dipahragm. This was abdominal surgery, which could be done laposcopically. I don't know how successful this was or if it's still done.
It's probabaly now considerd much safer and possibly less costly to just prescribe a PPI/H2 inhibitor and no tedious lifestyle changes.
I hope you got my previous reply which originally stated how you can edit your post to add the photos you mentioned. I'd like to see them. I'm sure others would too.
I'm told this comment has been removed.
In case you missed it, I wrote this.
"Click on "More" below your first comment, then click on "Edit".
If you do that, then scroll down you'll see you can "Add photo".
I also made another comment about a word you used, which suggested to mebyou may be suffering augmentation. This I'd call ominous then, i.e. an omen you have augmentation.
I intended to explain this to you and will.
I had no intention that you should amend anything you'd written. I only mentioned adding photos to your FIRST comment, which in any event did not contain the word which has been deleted.
I hope this clarifies things.
Since you were, and still are are taking ropinirole. It's possible that part of your current problem is "augmentation" which I suspect you already know about.
If we could confirm that, then I can offer you further information about how to deal with that, if you wish.
If you do exercises to DELAY the onset of symptoms, then this suggests that the symptoms start earlier than you're happy with.
This is a sign of augmentation.
If augmentation is treated then they shouldn't happen as early. If this were so, then the need to do exercises may be reduced.
Also, you do seem to be saying exercises DELAY symptom onset, NOT prevent them. You still get them, just later. In which case neither the R nor the gabapentin is being fully effective.
Gabapentin isn't fully effective when augmentation is present.
Conclusion, treat augmentation!
This may increase the effectiveness of the gabapentin and maybe prevent symptoms altogether.
To treat the augmentation - stop the R completely.
This would be my main suggestion.
Obviously, what works depends on anybody's individual circumstances and preferences.
I don't know sufficient about you to be able to predict 100% what might happen with you.
However, if your principal aim is to reduce drug use, you MIGHT achieve this by stopping the R.
This is irrespective of any exercises, but as you're in the habit, it would be good to carry on.
Another aim, could become to prevent symptoms altogether.
Why try to put out a fire that's already started, remove the heat that starts it!
This doesn't necessarily mean taking more of a drug, or more drugs. I do know of an RLS expert who claims to be able to effectively treat over 90% of his patients. ( it may be more).
I don't doubt it!
There are a lot of well accepted non-drug remedies for RLS that are overlooked.
I'll only mention these as you may already know, I wouldn't want to insult you by going on and on.
IRON therapy is a proven treatment
Eliminating AGGRAVATING FACTORS can have a major impact.
Iron therapy is identified in more or less all evidence based recommendations for the management of RLS.
The drugs which can aggravate it are also commonly identified.
There are other sources with information about non-drug aggravating factors that are worth exploring.
You’re absolutely right!Stretching is very helpful. It will not cure the RLS, but it will modestly help you relax. I stretch and roll myself on a foam roller nightly because it definitely helps me !
Thanks Dizzy.I also find these stretching exercises help relieve the RLS so thanks for sharing.
I'm lucky now that my RLS is under control and I'm sleeping but I do occasionally get evening RLS as the meds wear off and stretching exercises and squats definitely help.
I see you take anti depressants and Omeprazole, both of which worsen RLS. Is there anything you can take instead? There are safe alternatives.
Yes Ellfindoe was saying that about citalopram and Omeprazole. Sadly I have a hiatus hernia and if I miss even one dose, I get terrible acid and diaphragm pain. I'll talk to my doctor about citalopram. Thanks.
I do a crazy thing that helps in bed when RLS kicks in. I get in a knee/chest position with my toes planted (not resting on the top of the feet.) I give a little push with my toes and arch my lower back. I concentrate on keeping tension in my quads while arching and “opening up” my lumbar and sacral area. I hold the position as long as possible, relax and repeat. Several reps of this often helps. I usually do this after taking 300mg of gabapentin to give me something to while I wait to go to sleep. 🤣
Someone else recently posted about a certain type of stretching or yoga…maybe it was called yin yoga, though I no longer remember for sure. I googled it at the time and realized the premise was basically a lot of leg, hip, and back stretches held for about 2 min each. The process takes a while but is very relaxing and can be done in the evening while watching television or listening to music. I began to incorporate my own version (which are just shorter stretches, held for 30 to 60 seconds) and it has been a game changer for my RLS and PLMS. But it must be done nightly for relief. By adding evening stretches I have been able to avoid increasing my gabapentin dosage, which I was about to do, until I decided to try stretching first. I’m so glad I did!
Thank you for posting this. Anytime we can avoid taking higher doses of our meds or avoid adding new medications, it’s a good thing! In any case, maintaining (or improving) our flexibility with stretching is a very healthy thing to do and as long as we are careful not to injure ourselves, we have nothing to lose by trying! It worked from the first night I tried it (a month or so ago) and has never failed me since.
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