For over a decade now off and on I’ve had severe RLS, or what I’ve been calling RLS. Ive been in and out if six mental health clinics the past two months and they change my med regimen nearly every time. Now Im on at least 4 RLS meds at once!!
Problem is the feelubg I get is in my feet not my legs. And it’s not an only at bedtime thing. I’m afraid I’m treating something I dont have and this is some weird thing that resembles RLS but isn’t.
Does anyone else get it in their feet only? Ive had to pace for days during the worst incidents. Makes one just want rest, sometimes permanent rest. I just need to talk to ppl with RLS and figure out if indeer thats what I have.
Thank you.
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Enpi
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Hi and sorry to hear you're having this problem.
Firstly, it would be good if you said what meds you are currently taking. 4 different meds for RLS doesn't sound at all right. Please say their names and what dosages of each you're taking. Also how long you've been taking them.
If you don't mind please say what other meds you're taking, names, please.
It's quite important to know these before I can offer any help.
The reason I ask this is because these other meds may be what'sd causing your symptoms.
RLS isn't always easy to diagnose, partly because the way different people describe the (same) symptoms can be quite different.
The principle defining feature of RLS is the "urge to move". This is often accompanied by unpleasant sensations, but not always. It's difficulkt to describe how this urge feels, it's not the same as other reasons why people feel the need to move.
My description of it is that it's like holding your breath. The longer you hold it the greater the urge to take a breath builds up until eventually you just have to take one. With RLS the longer you don't move, the more the urger to move builds up until eventually you have to move.
The second feature is that it usually only occurs when you try to relax, sit or lie down. It can take a few miniutes to start.
The third feature is that the urge to move is relieved by moving. Note, it's the urge to move that's relieved. Moving can ease other things like ease feelings of discomfort or pain from being in an awkward position.
The fourth feature is that the urge only usually happens or is worse at night.
The fifth criteria for diagnosing RLS is that there's no other explanation for the symptoms, but similar symptoms can be caused by other conditions.
RLS usually occurs in the legs, thighs or calves. I believe some people do experience it in their feet, but I don't believe it's that common to experience it only in the feet.
On the face of it, from what you've written, I can't say you have RLS. You can read the diagnostic criteria for yourself and compare your symptoms to them. If your symptoms are a good match for ALL the criteria then it's likley you have it. IF they don't match even one of the criteria, then you probably don't have RLS.
There are a couple of "tests" for RLS, but they're not very reliable and to a large extent they rely on you NOT taking any meds at the present time.
One of the tests is to take a drug called levodopa or a "dopamine agonist". If either of these relieves your symptoms then it's likely that you DO have RLS and if they don't, then probably not.
The other is to take a sedating antihistamine. If you DO have RLS then this will probabaly make the RLS worse. If it doesn't, then you probably don't have RLS. Of course, this won't work if you're already taking a sedating antihistamine.
If you do have RLS and need treatment then drugs aren't the first treatment to consider and a doctor who knows about RLS would help.
Going to a mental health clinic is inappropriate. Some primary care doctors can help with RLS if they have some knowledge. Otherwise you need to see a neurologist or sleep specialist. Unfortunately, even these aren't always knowledgeable.
I suggest you tell me what meds you're taking and I can offer further information based on that.
Also my “RLS” is intrinsically connected to my generalized anxiety disorder. So, respectfully, while the amount I went to is ludicrous I know (reasons why being complicated), going to a mental health hospital initially was not “inappropriate”. My “RLS” had made me suicidal.
But ty for all the input. Let me know your opinion on my current med regimen.
Sorry if your main issue was originally anxiety then I can understand going to a mental health clinic. When I wrote it was inappropriate that was to say that RLS is not a a mental health problem, it's a physiological one. You didn't mention anxiety. Mental Health professionals are not the best people to help with RLS, but I wouldn't challenge their ability to deal with mental health issues.
You wouldn't see a dentist about a broken leg.
Just to comment on the drugs you're taking.
Clonazepam is, as you may already know, a benzodiazepine. It is sometimes used in conjunction with RLS meds to help with sleep. However, it's of virtually no use for actually controlling RLS symptoms. It's renowned for being addictive and a typical dose is 1mg a day - at night. 3mg is a very high dose.
It's not the most effective thing for anxiety either.
Hydroxyzine is a sedating antihistamine. I don't know why you have been prescribed with this but if you have RLS then it would be making it worse.
Carbamazipine is an anti-convulsant used for some forms of epilepsy. I don't know why you have been prescribed with this but isn't recommended for RLS. If's of little or no use for RLS.
Trazadone is classed as an antidepressant but it's more of a sedative than that. It can therefore help with sleep, but has no effect on RLS symptoms.
Magnesium and ferrous sulfate as you probably know are minerals. magnesium helps some people but not others.
iron is the first thing that should be considered for RLS. Iron deficiency is the main cause of RLS. ferrous sulfate is not however the best supplement to take.
Gabapentin is a specific type of anticonvulsant called an alph 2 delta ligand. it is mainly used however for nerve pain and RLS. Gabapentin and pregabalin, another ligand are now the recommended first line meds for RLS.
Artane is an"anti-parkinsonic"drug mainly used for controlling the RLS-like side effects of some antipsychotic drugs, i.e. sedating antihistamines. I've never heard of it being used for RLS, it's not recommended.
Both ropinirole and Mirapex (pramipexole)are drugs known as dopamine agonists and used to be the main drugs used specifically for RLS. They are no longer recommended as the first line treatment of RLS because of their high risk of major complications.
All the dopamine agonists work in the same way so there seems no point in taking two at the same time, especially as this increases the possibility of major complications.
I am assuming the dose of Mirapex you're taking is 0.125mg not 125mg as this would be 167 times the maximum dose.
If you're currently taking gabapentin 1800 mg a day, plus ropinirole, plus mirapex and you're still experiencing symptoms, I would say that it seems unlikey that you have RLS at all.
Thank you for your in depth response. While taking all these it actuallybhas heloed my restless feet I should have said that sry. I only started having the symptom agaun last night and today and its milder than before but still so uncomfortable.
That's OK, but it still seems unnecessary to be taking multiple drugs for one condition, some of which may not be helping and some may be making it worse.
I still feel that it's not really RLS that you have.
Hi EnpiWelcome to the site. Manerva has asked what I was going to ask. Most anti depressants will worsen RLS so, as Manerva states, we will need to know all the meds you're taking.
Hi Enpi, I’m sorry to hear that you have been going through such a tough time. Identification of nerve conditions is very complex and I’m afraid many Doctors do not have the appropriate ego pattern to simply say they don’t know what’s wrong. The person in the white coat is Godlike, knows all, is not to be questioned and HAS to have a label for everything. Have you had other options checked out such as trapped nerves, peripheral neuropathy or diabetic neuropathy? If you haven’t had your glucose levels checked I would consider doing so. Many problems at the extremities, especially feet, can be found in circulation and sugars. I’m not saying that’s the case with you but to keep an open mind and maybe keep a journal of when it occurs, how bad it is, time of day, how active you’ve been, your mood, what you’ve eaten etc. This might give you a bigger picture of what’s happening rather than being in that awful moment. For me jotting stuff down and reading comments has sort of a placebo effect on me as I feel I’m doing something about it! I’m certainly no Dr or Chemist but that sounds like an awful lot of drugs thrown at a problem at one time. How could you tell which was helping and which was making it worse?
Man you nailed it. Thank you. Its impossible to know which is helping. Im typing right now w it happening. Im so tired of going on like this. But your words help and good journaling idea
Glad it’s helping there are so many co morbid or co existing issues that occur I just focus on what makes me feel better even for a while. You wouldn’t believe how my diet has changed and even if it doesn’t directly my RLS or other issues it will make my body healthier and stronger. I’m diabetic but a chocoholic! For me, adding magnesium supplement for RLS and fibro took the chocolate craving away! Who would have thought that, certainly not me. We are all so individual as our ills are they simply can’t be treated the same way.
Im no dr but thats heartening to hear others get it in their feet not their legs. RLS is such a nebulous thing to most doctors anyway, I hope my foot thing isnt some nerve issue even more mysterious cause wise than RLS. Thats my fear. Given my luck the past few months my fear will come true. We’ll see.
Have you heard of plantar fasciitis? A common foot problem, also peripheral neuropathy. They are not sure which causes mine so bung it in with RLS and Fybromygelia diagnosis. I don’t care as long as physio/meds and practicing Mindfulness help with pain and mobility.
Maybe see a physio? Myman Dean is brilliant! I went thinking my damaged vertebrae in my neck was giving me back problems. Just by looking at me walk, then lay down and get up, he said nope it’s much lower down. Low and behold later find out I have trapped nerve in lumbar area! They see how we over compensate to protect an area and how our natural movement changes without even touching you. Amazing.
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