I’m new to having RLS, and have recently found that the sensation in my legs feels different.
I’ve had a few blood tests and my Ferritin level is above Normal. My GP initially put me on anti depressants (and antihistamines) which I’ve come off due to the adverse effects ( and the kind advice from this forum) I’m currently trying CBD oil, and had a few blissful nights sleep, however it doesn’t seem to work now. I’ve been through stages of banana eating to increase my magnesium levels and continue to do mild exercise.
At the start of having this syndrome, my lower legs had the weird sensation of thick fluid moving around inside, but more recently, and in addition to the lower legs, it’s the tops of my thighs which are tight and aching.
I’m not currently on any medication, as I’m using this period to try lifestyle changes, but the Ropinirol that my GP has prescribed me, is sat on the kitchen top unopened, and seemingly has the tempting ‘drink me’ on it just like in Alice in wonderland! I’m so reluctant to start on this drug due to the pain I hear others have experienced with augmentation.
I stretch my legs each day, but the mussel tension and aching in the tops of my thighs remains, and now I seem to get more violent twitches throughout the night.
Initially I was able to drift in and out of sleep as the fluid sensation disturbed me, but with this new sensation I’ve become nocturnal having only two or three hours of sleep each night.
I’ve only had RLS for 6 months, and wonder if this is sensation is just the norm for most sufferers.
Apologies for the long post, but in writing it, I find some mental relief by sharing my woes on the fantastic site.
Rob.
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what you write sounds a little unusual, so I don't think I can give any definite answers only some ideas and possibilities.
As regards the ferritin. When it comes to RLS there isn't really a "normal" or "above normal" level of ferritin. However it does seem unusual for somebody with RLS to have a level above what would be normal for somebody who doesn't have RLS,
Presuming that you haven't been taking any iron supplement then it's possible that the ferritin appears high because it is skewed. Inflammation can skew ferritin upwards like this. It's possible then that your "above normal" ferritin is a sign of inflammation.
Inflammation can make RLS worse
As you now know, for someone with RLS antidepressants and sedating antihistamines should be avoided if possible. Depending on why you were given an antihistamine there are ones that are non sedating. If you were given an antihistamine to help sleep, then NO antihistamine will help if you have RLS. A sedating one will make RLS worse, a non sedating one won't sedate!
I usually say there is no such thing as "CBD oil". This is becasue it's misleading. There is a large variety of products that are called that and they vary greatly in what they contain.
The ones that seem to be most help with RLS aren't legally available in the UK.
I think you are quite right to avoid taking ropinirole. Ropinirole is one of 3 dopamine agonists (DAs) that have been commonly prescribed for RLS over the last few decades. They are not the only medications available and in fact they are no longer recommended as the first treatment for RLS internationally. In the UK they are not the ONLY ones recommended.
If you do decide to start a medication then I'd try others first and a very last resort, you might consider a DA in the future.
Coming to your symptoms. It's not easy to say whats going on!
Your description of these isn't particularly typical of how people describe their RLS.
The typical descriptions of the sensations of RLS are usually, crawling, itching, millions of ants, tingling, electric currents etc. Some people get pain, which is generally, I believe, a "deep ache".
However, despite all these sensations the principal defining characteristic of RLS is the "urge to move". Simply put, if you don't have this, then you don't have RLS.
Further, even if you do, then there are othere criteria that need to be met for it to be RLS.
The urge usually only occurs or gets worse when you are at rest, sitting or lying down.
The urge is relieved by moving.
It usually only occurs at night or gets worse at night.
It cannot be ecplained by any other issue.
Here is some further information about the criteria
Furthermore, assuming you DO have RLS, your "new" symptoms appear additional and it's not clear if they are related to RLS or are in fact due to something else.
The "thick fluid" sensation could possibly be RLS related.
The twitching legs is very common with RLS.
I'm not at all sure about the tension and aching.
Bearing in mind I'm not a doctor and have no authority to advise you about taki8ng any medication, it is entirely up to you but - you might try taking a couple of doses of the ropinirole. DAs are renowned for their immedite effectiveness. If you take a couple of doses and it relieves all your symptoms, this would confirm you have RLS. If some didn't improve then they may not be RLS.
It's up to you! If the roinirole does work, I'd suggest you stop it and if you do want a medication consult your doctor again and ask for an alpha 2 delta ligand, pregabalin or gabapentin.
These aren't ideal but they can be effective forRLS, they don't cause the same major complications that DAs can cause and they can help with sleep.
Firstly, I’m overwhelmed by your dedication to this forum. I’ve seen a lot of your posts and have used your information as guidance and building my knowledge of RLS. I’m sure there are plenty like myself who are indebted to your support.
I’m 100% sure I do have RLS, as the sensations you describe match mine, and the overwhelming urge to move during the night is an overriding factor.
The antihistamines that my GP prescribed, were for RLS, and I realise now that this was an uneducated decision by my GP.
For the Ferritin, although my GP stated that it was high (as you say what is normal), I did then try iron supplements, but I didn’t react well to them, and looking up my symptoms, I believe they seem to indicate an excess of iron!
I agree, now having tried it, that the CBD oil doesn’t cut the mustard! And I think I have seen what you described as an illegal equivalent which I think is THC oil.
I very much like your suggestion of trying the Ropinirol to see what happens, and then coming off them regardless of the outcome. I’ll have a chat with myGP.
I’ve seen comments of other medication that doesn’t have the augmentation of Ropinirol, so if my trial works, I would tell my GP I want to try another, and steer clear of the Ropinirol.
In some ways it’s good to hear my odd symptoms of tension and aching in my thighs, might not be some worrying RLS development.
Maybe my aching thighs, is due to my leg muscles building up as a consequence of all this leg twitching! I could be getting stronger legs! There has to be some positive feature to this RLS😁.
However I’ll keep an eye on it, and investigate further.
Yes peculiar about your ferritin. but unless you have haemochromatosis, which is a congenital condition then it's not really possible to get iron overload.
If you did get iron overload through taking oral supplements then you need to be investigated for haemochromatosis.
If your certain you've got RLS then I'd skip the ropinirole trial, it waon't really serve any purpose. The other thing I forgot to mention is that if you take a sedating antihistamine and it makes your symptoms worse, then this is another "test" for RLS. It seems you've already done this.
The "other" medicines for RLS are either an alpha 2 delta ligand, (pregabalin or gabapentin) or an opioid.
Pramipexole, ropinirole and rotigotine are ALL dopamine agonists so are NOT "others". They all cause augmentation.
You can refer your doctor to this site if you need to. They can NOT dispute this information.
I did take oral iron supplements, however you have me wondering now.
When I tried them I was coming off the ill advised antihistamines, so maybe how I was feeling wasn’t due to them.
I need to consider it once more. Or as you say there could be something else. Some more investigation for me to do.
I know from your other posts to newcomers, iron and ferritin levels should be the first thing to investigate. I have another blood test in a weeks time.
Thanks for the Ropinirol test advice, of which I’ll avoid.
I’ll continue to use this lockdown period to grim and bear it, whilst I try lifestyle changes. My work colleagues don’t need to know how sleep deprived I am, whilst I’m in front of a laptop working from home. I’d even tried the more bizarre solutions some have suggested that work for them, such as tonic water, of which I’d noticed a comment from you yesterday, although I haven’t succumbed to the soap in the bed scenario yet 😂.
I know that in the near future, it’s very likely that I’ll need to move to some proper medication, ( thank you for your suggestions) but before then, I’m in a position to test the water with exercise and other vitamins, minerals ( or maybe even soap in the bed) to gauge what helps or not.
It seems like it’s up to individuals to take charge of the situation, so your link To educate the GP will be handy for me at some point soon.
In my experience here in Arizona-Medical Marijuana has been a major help at night to calm my symptons. I realize however that its not legal over there so 1 other thing I've been doing every night before bed-Is rubbing CBD oil onto my legs then putting on some Compression socks. This makes it possible to fall asleep without any interruption from RLS.
I also live in Arizona and find marijuana (indica, not sativa) to be extremely helpful-it is often all that is needed to sleep through the night. However, when symptoms flare, gabapentin works like a miracle. Mirapex stopped my involuntary movements but for some reason caused insomnia. I think I may have been mildly allergic because I had more severe complications the second time I took it and don’t plan to ever try it again. Uncle Fester, do you think it is actually the CBD oil on your legs that is helping or just the act of massaging them and then wearing compression socks? Have you tried a normal lotion? And may I ask how strong your compression socks are? Are they the kind you’d be able to buy at the airport? Or prescription level? Finding a solution that doesn’t involve ingesting chemicals would be great! Thanks for your time.
I also use Gabapentin which helps take the edge off. I’ve been using Antihistamine/sleeping pills (over the counter) for several years and just read how bad it is for rls. I just stop using it like 3 days ago. Now looking for sleep alternative. I use CBD oil with THC or a medical marijuana ointment with THC on my calves and feet-I use the Copper compression socks which I bought at Big 5 Sporting goods just before bed. I’ve noticed this makes a huge difference for my sleep. I imagine u could use regular lotion but I would recommend THC \CBD
Hi Rob, sorry to hear your sleep issues. I’d say I don’t recognise the fluid feeling but I also think the urge and pressure to move is quite difficult to describe. Regarding the muscle tension I find it’s a fine line between doing enough exercise to ease the symptoms and doing too much and aggravating them. The same goes for stretching which often helps but in my case it’s better after the symptoms and doing it before sleep sometimes fires things up. I’ve found the best regime is a lot of gentle and regular movement including walking and anything which encourages a wide range of movement e.g. careful gardening. If I do more focused or strenuous exercise I find that the sore or tired muscles seem to act as a focus for the RLS sensations and it makes things worse. At the moment I still exercise and live with the consequences but if things get worse my first step would be to reduce intensity.
Although it’s not great, It’s somewhat reassuring to here what you have already been through with regards to exercise.
Plus very timely as somebody who is new to RLS finding their way.
I say timely, as this week, I’ve been doing a bit of cycling on a static bike. Although I’ve had very little sleep, I was quite surprised that I didn’t feel too bad during the day. last evening whilst doing my cycling, I thought I’d up the pace a little, which was great and I felt really good for it. But exactly as you described, I certainly felt the consequences a little later that evening and throughout the night. Very little sleep like the previous nights, but a long horrible night, when my legs were all over the place.
Although I don’t feel like doing anything today, I’ll still do a short stint on my bike, but will be taking it a little easy.
Hi.I too have a deep aching in my legs with RLS.For me it is mostly in my lower legs.I take Tramodol for my RLS so this deals with the pain and urge to move symptoms. CBD oil without THC won't help RLS.It is now legal in the UK to prescribe it with THC but it is not available for RLS on the NHS.It has to be obtained through private clinics.
Each time I read posts such as yours I learn a bit more about RLS and what can help, or more importantly, what doesn’t help.
I take note of your comment of THC Which is well worth knowing, as if I wished to go that route It would have been disheartening to hear it wasn’t available, but with the knowledge that it could be privately, keeps this open as a possible solution for me.
I really appreciate your help as I search for the best course through my early days of RLS.
I’ve had restless leg syndrome for the past 25 years. I think it’s hereditary. My mom and brother had it also. During my 3rd trimester 25 years ago I actually had restless body syndrome! It doesn’t hurt, but only happens when you lay down. You keep your legs still... as you know, it’s very hard to describe unless you e had it. But..,, antihistamines will actually bring it on! That’s a known fact! Please stay away from them. Also if you’re on an opioid pain med for more than 2 weeks and stop, that will also bring it on. If you don’t get relief, go back to your dr. There are meds that help control rls. Best of luck to you! In my opinion rls is worse than pain.
The one thing I did fortunately discover from comments such as yours on this forum, was that the antihistamines my GP had given me, was the reason my RLS was getting worse. So this forum is a big help to me as I find my way through discovering what will be best for my situation.
I’ll certainly be going back to my GP, but this time with the good knowledge that I’m building from your, and others posts.
I told my doctor about my RLS and he told me to try to not use any pills. He told me they all have side effects, at the moment I am not sleeping at all well. I am retired so being home a lot, I sometimes fall asleep in my chair. I need a way of sleeping at the right time, I think it is not helping I am less active. Before the pandemic, we used to do short mat bowling, table tennis, long walks with our dog. I have problems with arthritis. Not doing these activities is not helping.
I’m just three days into my first RLS medication (Gabapentin). Very low dose to start (100mg three time a day) of which I’m told to build up slowly.
My usual sleep pattern is between 3 to 5 hours a night, but never more than 1.5 hrs at any one time. I have already had a couple of nights where I’ve slept for 4 hrs without waking.
I know there isn’t a magic pill that cures RLS, and it’s very early days for my medication, but for me, I’m optimistic that it will better than no medication.
I know most GP’s don’t know much about it but at least they should be doing a bit of research to try and help not abandon you to this suffering.I learnt from this website that iron and Ferritin levels had a bearing on RLS and to have a blood test, you can find info by looking through the posts.
I’m actually waiting for my test results right now.
Tell your doctor your quality of life is suffering as no sleep and anxiety etc.
In the meantime I’ve found Magnesium sweet Cream rubbed into lower legs and feet at night help and also taking magnesium supplement.
Good luck and persist with your doctor or find another
Hello, just wanted to chime in and say I can relate to the muscle tension, aching and twitching. I have had RLS for as long as I can remember but it was exacerbated by SSRI antidepressants (Sertraline) and antihistamines prescribed by my GP last September. I am wondering if the twitching and tension you describe is a result of the medication you were prescribed? From my research over the last few months, the symptoms you describe are common medication side effects and withdrawal side effects - if you look on the website ‘Surviving Antidepressants’ you will read countless stories from people suffering from these symptoms.
I never had any real pain for the first year or so only that heebee sensation at night or when I tried to sit or lie down. Now it starts as a bad itch mid morning and then turns into extreme muscle pain in.my hamstrings and buttocks. The only thing thar controls the.lain is ropinerole. .25 mg spread out during the daylong with morphine ms contin. (.slow release ). Nightime I switch to gabapentin and for about a year now things have stabilized.
Your leg sensations feel much like mine. We all react differently to meds but I've found lack of sleep was almost worse than the RLS so have tried many meds for relief with poor results. However, many others have had success with various meds so give them a go and good luck. Kim.
I’ve had r so for 58 years not just legs but wrists arms I had the same experience with COD oil great for a week I’ve bean told there are so many varieties that you need to find a medical one for want of a better phrase hoping to try some others as other than opioids it’s the best results plus I take iron every day which helps In the us they found people s brain iron content was low even when there bold count was normal give it a try takes quite a while to get in your system so be patient .good luck tak care Brian
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