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Restless Legs Syndrome

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Greetings to RLS Community

Briar2020
Briar2020

Greetings from Briar2020;

I have joined this community to ask questions and to read about other people's experiences with RLS. I was diagnosed in 2016, during a sleep study, with severe RLS and mild sleep apnea. I was prescribed pramipexole and it worked until the end of October, 2019.

Wishing everyone well and hope you are receiving the help you need.

I would add that I live in Canada where we have a publicly funded medical system, similar to Medicare in the USA.

25 Replies

Hi Briar2010 - well, that's about it, I just wanted to say Hi ! My RLS started over 20 years ago around the time I was diagnosed with MS. I'd never heard of RLS and assumed the RLS symptoms were all part of the MS. My RLS is severe and my biggest fear is that the Ropinirole might one day stop working and those dark distressing times pre RLS treatment might return. I've been on Ropinirole for about 10 years and latterly (because of the MS) Pregabalin as well and......I'm doing ok, more or less !

Thank you for your greeting, ilfordonian. I see that we both have severe RLS; glad that you have it under control with Ropinirole. The pramipexole I was taking for 2.5 years, stopped working at the end of October, 2019. I will be seeing someone soon about that and hope they have some solutions. I am concerned about the drug interactions and whether they can affect the RLS drug. Wishing you well.

Yakester
Yakester in reply to Briar2020

I have experience with pramipexole. None of it good except it did work for a while. The first time I went off this medication was due to a car accident caused by sudden onset of extreme sleepiness (a side effect). I was driving home in the middle of the afternoon and suddenly fell asleep and went across the road into a deep ditch. In the hospital they abruptly took me off pramipexole. I tried other meds and either they didn’t work or I couldn’t tolerate them. So eventually went back on pramipexole. Eventually it augmented so I had to stop pramipexole again. Both times I quit taking this dopamine agonist I suffered from very deep depression which caused me to make life changing decisions, not good decisions. I will never ever take a dopamine agonist again. It is as hard to wean off of as opioids. Of course, trying to get a doctor who knows nothing or next to nothing about RLS to understand this is almost impossible. I am fortunate to have a pcp who prescribes opioids for me.

Good luck to you. It seems this is an independent journey as we all react differently to treatments. It is so great to have sites like this one because we all understand how vile this disease is.

Briar2020
Briar2020 in reply to Yakester

Thank you, Yakester, for sharing your experiences with pramipexole. Sorry to hear that the drug put you in harms way and could have been fatal. Very upsetting to know these drugs can completely screw up our thinking processes and our ability to function.

I am back to square one again. I have to continue the pramipexole until I see my doctor but first I will see Clinical Pharmacist at the same office. My experience is that doctors have little experience with treating RLS and less about the best drug to prescribe. I have augmented after three years of pramipexole. Most people on this site are saying I have to get off it and have another drug (not a dopamine agonist).

Good luck to you, too.

Yakester
Yakester in reply to Briar2020

I actually went to a sleep doc and I got the impression that his knowledge of RLS and the medications was very limited. So very frustrating.

Briar2020
Briar2020 in reply to Yakester

Yes it is very frustrating. I went to a Sleep Disorders Clinic for a sleep study which was an overnight stay. They determined that I had mild sleep apnea and severe RLS. The specialist that saw me was a respirologist, who prescribed pramipexole. Last time I checked, his specialty is pulmonary function. It seems more appropriate that we would see a neurologist. I am so tired of relying on people with minimal knowledge to determine such a serious matter. These drugs affect our brains and their function. Next week, I will see a clinical pharmacist, to advise her that pramipexole has increased my symptoms and is no longer working. It is a sad day when we lose confidence in doctors. I am happy I joined HealthUnlocked-RLS, so that I can hear other RLS sufferers experiences.

Hello, this community doesn't get many Canadians so welcome.

Sorry to hear the Pramipexole stopped working. This is not good news.

Have you explored all the possible factors that may be affecting the severity of your RLS? This could include any deficiencies e.g. iron, vitamins D or B12, magnesium or potassium. Is your Ferritin level above 100ng/mL. Have you any suspicion of Diabetes or underactive thyroid gland.

Do you have any triggers e.g. medications which can make RLS worse e.g. antidepressants, antihustamines, antacids, anti-emetics or statins. Are you gluten or lactose intolerant, do you have Irritable Bowel Syndrome

Of most importance in all that is your Ferritin level. Increasing ferritin to above 100ng/mL can help relieve RLS in 50% of cases.

After all that, since you have sleep apnoea, a dopamine agonist (Pramipexole) would be best for you, but it's stopped working.

It seems, paradoxically, that you need to stop.taking Pramipexole, or at least take a holiday from.it.

I'd suggest you discuss this with your doctor so that you can start.on either Gabapentin or Pregabalin. Once you're on an effective dose of one of these, then you can start reducing the Pramipexole slowly.

See other posts on this. Do NOT stop Pramipexole suddenly.

Some may suggest you use an opiate. This is NOT a good idea because of your sleep apnoea.

I see that cannabis products are now legal in Canada, some people find these helpful.

Briar2020
Briar2020 in reply to Manerva

Thank you , Manerva, for your advice re transitioning to another drug and information regarding iron and other supplements. You probably know more than the doctors at the university Sleep Disorders Clinic. When I was initially diagnosed, I was surprised at how little these specialists know. Anyway they prescribed the pramipexole at the end of 2016 and it stopped working at the end of October, 2019. In September of this year, I paid for three iron infusions because my Ferritin level was 23 ng/mL. I have had to wait to get a new blood test next week and hopefully it has risen. I will definitely go through both of your replies and look into the drugs you suggested. Bye for now.

Manerva
Manerva in reply to Briar2020

It was good you saw the sleep specialists because sleep apnoea is a serious condition and they're probably very knowledgeable about sleep disorders.

RLS however is really a neurological disorder, so is more in the province of a neurology specialist. Not that they' would be particularly knowledgeable either. RLS is of low priority in neurological medicine.

I have had RLS for about 30 years. Fortunately, for me, ropinirole (Requip) has worked for most of these years. Recently, it has started to lose its effectiveness. It was suggest that I try compression socks and I have found them to relieve much of the symptoms that I was starting to have during the day. They seem to relax my legs to the point that when I take them off at night, before going to bed, my legs remain calm.

Briar2020
Briar2020 in reply to dklohrey

Thank you, dklohry, for sharing your own experiences with RLS and your suggestions on helping to calm/relax your legs. It is amazing that you were able to take one drug (ropinirole) for so long, without having symptoms. I will suggest that to the doctor as I apparently have to slowly reduce use of pramipexole (dopamine agonist) and begin a different treatment. I am so frustrated by the lack of knowledge doctors have about RLS, nutritional components that would be beneficial and the most important; the drugs that treat them. I appreciate your input very much.

Joolsg
Joolsg in reply to Briar2020

Ropinirole is another Dopamine Agonist so best avoided if you’ve augmented on pramipexole.

I was on Ropinirole for 15 years & the withdrawal was brutal- I would never touch another DA because I couldn’t go through another hellish augmentation & withdrawal.

As Others have advised, the alpha2delta ligands ( gabapentin, pregabalin and Horizant ) may be a better option for you because opioids are not recommended if you have sleep apnoea.

Manerva
Manerva in reply to dklohrey

If you're getting symptoms during the day, then it's possible you're getting some augmentation. This is a long term consequence of taking a dopamine agonist. I believe the proportion of people taking Ropinirole who get augmentation in the short term (1 to 3 years), is similar to Pramipexole. No comparison available longer term, but up to 60% of people taking Pramipexole get augmentation within 8 to 10 years.

If your symptoms get more intense, spread to other parts of the body and come on more quickly then that's definitely augmentation.

Loss of effectiveness also a consequence.

Russell1975
Russell1975 in reply to Manerva

I was just diagnosed with RLS. My symptoms started suddenly and are all day. I don't understand why mine would be constant when RLS is typically at night?

Manerva
Manerva in reply to Russell1975

It just depends who diagnosed your RLS and on what criteria.

RLS is a "circadian" disorder i.e. it depends on daily variations that occur in relation to various hormones and neurotransmitters. With particular relevance to RLS, dopamine levels fall at night hence RLS usually occurs only at night or is worse at night.

This is one of the diagnostic criteria for RLS, it's worse at night. It can occur during the day, but.if it's all day and at the same intensity, then it's unlikely to be RLS.

I have experienced RLS symptoms during the day but this was due to augmentation after taking a dopamine agonist for years.

It's possible that whoever diagnosed you as having RLS is wrong. There are other conditions that cause similar symptoms, or it's possible you have "secondary" RLS, i.e. symptoms caused by some underlying cobdition.

Another criteria for RLS is that all other explanations for the symptoms have been investigated and excluded. If that's not been done then you can't say 100% that it is RLS.

Here is a link to the 5 criteria. Your situation have to match ALL 5. T

THE main criteria is the urge to move.

irlssg.org/diagnostic-criteria

If your symptoms do NOT match any single one.of these criteria, then the RLS is not 100% definite.

What are your symptoms?

Russell1975
Russell1975 in reply to Manerva

Hi Manerva, thank you for replying . this is a bad time for me

I get a sort of clenching motion in my calf. It feels like it is going to jerk. It is all the time. It is worse when sitting because I can concentrate on it. I stop it by clenching my calf and then I don't feel the jerking motion.

It doesn't disrupt my sleep.

I also get muscle twitches from time to time (mainly in my face and feet).

I just had a really bad experience with my doctor, I asked for a second opinion and I got given quite the lecture. It has left me feeling very down and depressed.

It sort of feels like it is going to kick. There aren't any unpleasant feelings in my legs, it just feels a bit like if someone hit your funny bone you're leg would jerk. That is what mine feels like, but it doesn't jerk

Sorry, it is also only in my left leg

Manerva
Manerva in reply to Russell1975

OMG, I'm so sorry that your doctor should treat you like that, what a s***.

I can't make out where you live, systems for a second opinion vary between countries. I also don't know if the doctor you refer to is a primary care doctor or specialist.

In the UK, you're not automatically entitled to a second specialist opinion in the NHS.. You can ask, they may oblige, but can refuse. Some people get a second opinion privately. There are other options in the NHS I can tell you if relevant.

If this was a primary care doctor, in the UK again, you can ask to see another doctor. They cannot refuse this. You can ask to be referred to a specialist.

I think you're going to have to be fairly assertive about this because from your descriptions, it sounds unlikely that you have RLS.

Obviously, you want to know, in that case, what it is.

Although it would be unwise of me to say, "Don't worry, it's nothing really", you may be getting a bit overanxious about it.

If it did wake you up and if it did progress to the point where it becomes painful or it's preventing you from carrying out your normal daily activities, then you need to pursue it more urgently.

In the meantime, until you manage to get a proper diagnosis, there are 2 possible strategies you can use. One is to do things to distract yourself from focussing on it.

The other is to spend some time, now and again to deliberately and solely focus on it without distraction. This may help you separate what's actually happening from the meanings and fears you're attaching to it.

Russell1975
Russell1975 in reply to Manerva

Thank you Manerva, I went back to my GP who didn't agree with the diagnosis or RLS but didn't agree to let me see another specialist. Basically told me I was wasting tax payers money, even though I am a tax payer .. go figure

I do need to calm down. I feel like it's getting out of hand because I can't have anyone help me. I never knew how lonely the medical system could leave you. I end up feeling like I'm tired and nobody cares and I'm just a burden.

Does the desription 'I get a sort of clenching motion in my calf. It feels like it is going to jerk. It is all the time. It is worse when sitting because I can concentrate on it. I stop it by clenching my calf and then I don't feel the jerking motion.' actually sound like RLS?

It does stop me from being able to concentrate on my work because I do move around a lot. I feel like my whole body is uncomfortable but I think it's got a lot to do with anxiety. I dont seem to be able to separate anxiety from my symptoms.

Infact, at night when I try to lay down to be calm I get such bad heart palpatations that I can feel it down my legs.

Russell1975
Russell1975 in reply to Manerva

Manerva, the neurologist has also written to star duloxetine for the RLS however my understanding is that can make RLS worse :(

Manerva
Manerva in reply to Russell1975

Hello again, I'm not quite sure what you mean by "star duloxetine". If this means that the neurologist is advising its use for RLS, then this is appalling. You are quite right, the only effect Duloxetine will have on RLS is make it worse.

However, since it seems unlikely that you have RLS and your anxiety seems quite severe then you might benefit from it.

If the GP doesn't think you have RLS but hasn't suggested any alternative diagnosis then as well as a poor attitude it doesn't appear as if he is doing his job. He certainly seems to be failing to recognise your health anxiety.

It seems you do live in the UK and so must be registered with a GP surgery. I suggest you contact the surgery and ask about their complaints procedure. Then submit a complaint about this particular doctors abusive conduct. You can ask to be seen by an alternative doctor.

See this alternative doctor and discuss your anxiety.

If you don't get a satisfactory response from the GP surgery then you can take your complaint directly to NHS England the national GP governing body.

Depending on where you live there may be a local "advocacy" service that supports people in situations like yours.. Most hospital trusts have their own advocacy services, but it's different for GPs.

You could try contacting your local Citizens Advice Bureau or Healthwatch organisation who may be able to support you or signpost you to other independent advocacy services.. Both these have websites.

Your symptoms do sound like anxiety, especially palpitations. Did you mention these to your doctor? He might have taken you more seriously.

Besides the RLS community, there is another Healthunlocked community which you might find more helpful.

Follow this link.

healthunlocked.com/anxietys...

You are NOT wasting my time.

Russell1975
Russell1975 in reply to Manerva

Thanks Manera, last night I went home and hard some dark thought. I had to get some help from some friends.

I will put in a complaint, as I need some real help if I am to get through this.

My leg has started jerking. I can't control it. Again it is only my left leg. It's not a voluntary movement (I am not actively moving my leg; it jerks itself, a bit like how when you fall asleep and you sometimes jerk yourself awake) and it is so quick. This is not RLS, is it?

Manerva
Manerva in reply to Russell1975

That one symptom could be a symptom of PLMD (Periodic Limb Movement Disorder), but then it could be a manifestation of anxiety.

I suggest you focus on your anxiety instead of the physical symptoms.

Also, and this is strange. I go to a class on Mondays and have found that when I sit on a cushion seat, my legs start to act up. If I sit on a hard folding chair, my legs are fine. Pretty crazy.

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