I need help coping with my RLS - Restless Legs Syn...

Restless Legs Syndrome

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I need help coping with my RLS

Shir_11
Shir_11

I have had RLS for 40 years and have tried lots of remedies. I was on Repreve for a while and then Sifrol. I also had about 6 years relief with just 50sr Tramal taken 3 hours before bedtime. This year I am struggling again and back on Sifrol .125 plus the Tramal. Night times are ok but the augmentation during the afternoon and evening is unbearable especially in the upper part of my body.

Not sure if anyone has any better ideas for me to try. My GP has no solution and I am not sure if I should see a specialist in this field if anyone knows of one. I am living in Scarborough QLD

32 Replies
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I have had success with a medication called pramipexole. It has helped tremendously. I would caution against the potential side effect or escalation of inpulsive/compulsive thoughts/behavior.

If you don't already see a sleep specialist I would also encourage you to consider this possibility. Hoping you find nights of restful sleep soon.

John_au
John_au in reply to JennyWillow

Did it work instantly for you, like from the first dose? Also would you mind sharing your dose strength?

JennyWillow
JennyWillow in reply to John_au

I was originally started on a fairly low dose and was titrated up to 3.75 by a neurologist that I had been seeing. I had excellent relief but had very bad compulsive tendencies such as shopping and other acting out behaviors. When I started seeing my sleep specialist, who did a thorough physical and social history, immediately started titratin my dosage down. I am currently on 1.5mg with good results and no noticeable side effects. It took about 3 days for me to start getting relief with the medication. Of course each person may experience different side effects as with any medication.

Shir_11
Shir_11 in reply to JennyWillow

Thank you Jenny

Manerva
Manerva in reply to JennyWillow

Sifrol IS pramipexole

You were on Repreve which is Ropinirole and Sifrol which is pramipexole. Both are Dopamine agonists. Tramal is Tramadol, the only opiod known to cause Augmentation.

You clearly realise that you are augmenting and you therefore need to reduce both the Sifrol and the Tramal very slowly. You will have experienced withdrawal symptoms when you came off Ropinirole and Sifrol so you know what to expect.

The waiting time on the NHS for an RLS neurologist is very, very long but it might be worth paying to see someone privately. I don't know any specialists in Yorkshire but hopefully someone who lives nearby will add details.

In the meantime, you can ask your GP to prescribe Pregabalin which is an Alpha 2 Delta Ligand and the drug most experts in the UK will now prescribe as first line treatment for RLS.

Take it in the evening and titrate up to 300mg.

If your withdrawal symptoms are severe, you could ask your GP to prescribe an opioid like codeine or oxycontin to help.

Read Manerva's posts and comments as all the advice you need about Gabapentin and pregabalin is contained there.

I am a little concerned that your GP "has no solution" as the use of pregabalin or gabapentin for RLS is becoming more well known. Targinact is also specifically licensed in the UK for RLS. It is Oxycontin ( an opioid) combined with Naloxone to counteract constipation.

Your GP should aslo arrange a full blood count test and you should ask for the actual figures for serum ferritin and serum Iron. Ferritin needs to be above 100 and iron above 60. Latest recommendations from the US experts are that ferritin should be above 300. Raising ferritin relieves RLS in 50% of patients so it's definitely worth taking supplements or asking for an IV infusion of Injectafer to achieve this.

You may as well start to reduce Sifrol and Tramal slowly now, as staying on them will only make your RLS more severe and unbearable.

I'm sorry, I assumed you were here in the UK. I've just realised QLD stands for Queensland in Australia. My comments on Targinact should therefore be altered as it's only licensed for RLS here in the UK.

Shumbah is based in Australia and she travelled to the USA and saw a specialist in NY.

Have a read of her posts and maybe she can recommend a specialist in OZ.

Amrob
Amrob in reply to Joolsg

Targin (Targinact) is available here in Australia as an option for RLS when all other options have been exhausted.

Shir, I'd suggest seeing a knowledgeable sleep specialist in the first instance. I'm not in QLD so can't recommend anyone.

Jools (and Manerva) offer some very good advice.

Joolsg
Joolsg in reply to Amrob

Thanks Amrob, I'm glad to see Targin is available in Australia.

Shir_11
Shir_11 in reply to Amrob

Thank you so much for your info on Targin. I have never heard of it but will see my GP to see if I can take them and wean off the Sifrol and Tramal.

Amrob
Amrob in reply to Shir_11

No worries. As I mentioned opioids (eg. Targin) will generally only be given when all other options have been exhausted. In your case, the next step would likely be pregabalin (Lyrica). This is best discussed with your prescribing doctor.

Shir_11
Shir_11 in reply to Amrob

Finally had a good nights sleep after taking your advice and purchasing some Targin. The Tramal100sr wasn’t working anymore after slowly stopping the Sifrol. The doctor only gave me 2 weeks worthh of the Targin To try out. He also wants me to try Lyrica in the 3 rd week to see the effect of that. Thanks so much

Manerva
Manerva in reply to Shir_11

Great advice from Jools, as always, and the others.

You might want to read Shumbah's posts about buprenorphine. Great success with this.

If you dont want to go down the opiate route or have difficulty getting a prescriptiion, then as Jools mentions you could try an α2δ ligand first, (gabapentin or pregabalin).

These are known to be effective for RLS and don't run the risk of augmentation that dopamine agonists (DA) and tramadol have.

The latest guidelines now suggest trying an α2δ first, before a DA because of augmentation.

I don't have shares in the companies, so not pushing them, it's another option.

Here's some further information -

uptodate.com/contents/treat...

There are risks to taking one of these

Not a good idea to take both an α2δ ligand AND an opiate, there is a warning about the risk of respiratory distress for people with pre-existing respiratory conditions, (not taking opiates), and people taking opiates or any other medication which depresses brain processes.

There is a list of potential side effects which you might want to check out.

The US Food and Drug Admintsration have said of the ligands

"All medicines have side effects even when used correctly as prescribed, but in general the benefits of taking a medicine outweigh these risks. It is important to know that people respond differently to all medicines depending on their health, other medicines they are taking, the diseases they have, genetics, and many other factors. As a result, we cannot determine the likelihood that someone will experience these side effects when taking gabapentinoids. Your personal health care professional knows you best, so always tell them about all other medicines you are taking and if you experience any side effects while taking your medicines."

This may apply to opiates too.

good luck

Shir_11
Shir_11 in reply to Manerva

Thank you Manerva.I have been on Targin for 2 weeks now and they do work. Although they affect my top stomach. A little tight. With my doctors advice I started the Pregabalin instead of Targin last night and it was terrible. After 4 hours of climbing the walls I took the Targin again which settled me down. I am not happy taking Targin for too long as I am worried that they are too strong and long term worries me. Do you recommend I change to another opiate or something else that would work as well as Targin. Thank you again

Manerva
Manerva in reply to Shir_11

I'm sorry, I have no experience of using opiates for RLS.

However in general, it's possible that if you've been taking Targin for a couple of weeks and you suddenly stop taking it, you will get withdrawals. i.e. RLS symptoms.

As for pregabalin, you have to take it a few weeks before it really begins to work.

From what you write it seems you suddenly stopped the Targin and replaced it with pregabalin expecting it to work immediately.

If you want to stop Targin and teplace it with pregabalin, I suggest try taking both for a few weeks, then wean off the targin by reducing the dose in stages.

If you want to switch to another opiate instead, you could just stop Targin and take the alternative overnight.

As I say, I have no personal experience, but some members of this forum, I believe have had some success with buprenorphine and some with methadone.

Opiates, I hear, can be effective for RLS, but no drug is without some costs. Opiates, (not unlike other drugs) produce dependency and opiates particularly can have gastrointestinal effects.

Shir_11
Shir_11 in reply to Manerva

Thank you so much for replying. I didn’t know that you needed to take Lyrica for a couple of weeks before it worked. I am thinking of asking my doctor to prescribe Buprenorphine instead of the Targin to see how it goes.

Manerva
Manerva in reply to Shir_11

OK, I hppe it works out for you.

I have heard that Tramadol can cause augmentation!!

Elisse2
Elisse2 in reply to Trikkinoy

Tramadol can cause augmentation but its rarely .

I have sent a private message.

I've had a lot of success with Neupro patch (Rotigotine). However, if I eat some of my trigger foods like Splenda or MSG, the patch isn't effective. I hope you get some help. It's awful when it's not controlled. I know.

I am currently on 1.5 mg of ropinirole and I think it is making my RLS worse and am going to stop taking it from today. I got a foot massager of Amazon , the oval type which you put your feet in and it helped a lot on the setting where it squeezed my feet but it went wonky , it only cost £50 so thinking of getting a more expensive one.

If her indoors can be bothered to massage my feet it does give me some relief, often one of my shoulders will start twitching before an attack.

Elisse2
Elisse2 in reply to Bealol

Hi Bealol, its not recommended to just stop taking the Ropinerole, you can experience bad withdrawals, its better to ask your doctor for a back up med to take while you wean down off the Ropinerole. What people take when weaning down off a DA is Gabapentin and or a opiate.

Hi Elissa I was on gabapentin for my hands which are always numb and stopped taking it as I heard it was no good if you're trying to lose weight. It's such a pain to get to see the doctor so I'll chance going cold turkey.

Joolsg
Joolsg in reply to Bealol

I agree with Elisse. Withdrawal from dopamine agonists is more difficult and traumatic than withdrawal from heroin and crystal meth ( according to the experts).

I withdrew from a similar drug, Ropinirole, and it was horrendous. So please reconsider. The advice is to reduce very, very slowly over months. Most people need the help of opioids to get through the withdrawal ( or cannabis if you can get it).

Gabapentin or pregabalin are suitable alternatives. Gabapentin and pregabalin can cause food cravings and increased eating but if you keep an eye on your food intake, and avoid too many carbs, the weight gain shouldn’t be too high.

omtenaj
omtenaj in reply to Bealol

Hi Bea

I had problems with weight gain on dopamine agonists but non whatsoever with 1500 gabapentin each evening, in fact my weight is actually coming down now I am detoxed off the agonists. It could be the same for you. There is another thread on here somewhere where quite a few people say they have had no problems with weight gain on Gabapentin. There does appear to be a problem with Pregabalin however as discussed in the same thread. I was told by a neurologist that attends to make people feel hungry.

LOL JanetX

Bealol
Bealol in reply to omtenaj

Hi, over the years I have been addicted to tramadol and co codamol and just decided to come straight off them, I wasn't climbing the walls and felt better without them, tramadol is very good short term but continual use meant I had to keep upping the dose and eventually it stopped working but was addicted, others will know the buzz in your head when you've gone a while without a dose.

I haven't had any ropinirole since last Sunday and I don't feel any worse off. I'm trying to lose weight so stopped the gabapentin about 4 months ago, I'm on irbesarten which I intend to throw in the bin when I lose weight and co codamol again but they don't help so they'll be going soon.

I'm convinced all these drugs are doing me more harm than good " could be the same for some of you" and I will only look for natural remedies from now on, I have an idea for a machine which I'm going to try and make to help my RLS and will report if it helps when it's made. Best wishes to you all.

leaflymarket.com/ tried this myself if you are into this wasnt myself but a friend gave me a vape best sleep I've ever had since my rls

u could have fibromyalgia so my Dr just diagnosed me with that and said I didn't have rls . makes no sense cuz they treat it with gabapentin or cymbalta none of it works for me Drs don't wanna five pain meds which is the only thing that really works

Thanks for the replies, I'll let you know if I get withdrawal symptoms, didn't take ropinirole last night the missus give me a massage when my legs started jerking and it calmed down.

Bealol
Bealol in reply to Bealol

Well I've been off the ropinirole for over a month and I'm glad I stopped taking it, sure my legs are bad but no worse than when I was on the ropinirole, I guess we all react differently to withdrawal, and from today I'm stopping the co-codamol as they no longer work but feel jittery when I need one, but im sure after a week I will be ok.

Although Balneum Cream does me good & works well - its only a cream for skin conditions so wont be suitable for you.

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