Restless Legs Syndrome
9,938 members6,107 posts

Had enough now!

Not sure how to put this but had enough now. How can anyone take this for the next 20 years or so. There seems to be no real way of controlling this awful problem. Have tried Ropinerol and Gabapentin neither work for very long. My doctors' point blank refused to go down the tramadol route as she says it causes more problems than it cures. She has said that she will put on the list to see a neurologist but the waiting list is long and as my problem is not life threatening I will be low on the list. Not sure what else to do as I have tried everything, Magnesium, liquid iron, no alcohol but then I haven't drunk in many years, no caffeine again haven't had coffee in years and on such a low sugar diet that I have less than 10mg a day and have dropped from 16 stone to under 13 in 4 months.........and I'm 6'2" tall !!! I'm active, walk and cycle a lot but if I can't control this soon it's sayonara for me. Good luck and God bless you all.

41 Replies
oldestnewest

Don't despair - there are means to control this terrible affliction. Have you looked into Cannabis or Kratom?

5 likes
Reply

Hang in there, Hamish.

In addition to raffs suggestion: Can you discuss pregabalin or neupro patch with your doctor?

2 likes
Reply

I appreciate your concern- I think we all feel that way at times.

But there are alot of ways to skin this kitten- can you change doctors? Tried the others suggestions? Looked at all possible triggers ? Is codeine available to you without prescription? I'm surprised Raffs didn't suggest the soap-- he really is slipping up- must be all the worry about the soft border!!

Hamish- hang in there for a while- at least until you've tried some more possibilities.

Cheers and Good luck.

2 likes
Reply

Hi ML. Sorry no codine on offer. Changing doc not that easy as it is a small practice of only 3 doctors. Will keep looking for a soliton though. By the way do you need to come off Ropinerol before going to Gabapentin as my doc says start dropping one down whilst bring the other up so the change is simultaneous. Not sure about this.

Reply

As far as I'm aware , you can take both together. Gabapentin is often used to beef up other pain killers - at low doses- under 900 pd - it shouldn't cause problems and for many peopke is very satisfactory.

Good luck.

Reply

Hi ML. Useful to know and up to 900mg which is a small dose. Just under 2 years ago just before my back opp I was on about 3600 a day for the pain....didn't help at all but nothing but fusion surgery was ever going to, that is of course when my rls went into overdrive. Will try up to 900 and see what happens. Thanks again.

1 like
Reply

Hi Hamish. My experience is that it is hard to judge the effectiveness of another med while you are still going through withdrawal or the aftereffects of augmentation. Nevertheless, you may still work your way up with the gaba; better that in terms of potential side effects than increasing the dose quickly. Hope it works for you. Or the combi may work. All this trial and error can be demanding if you haven’t found your effective approach yet...

Reply

Hi Lotte. Been trying to find the right dose and combi for over a year and evertime I think I have it it's all change. Rls is funny that way. I do know though that i am now very intolerant to any sugars at all and if I do not watch myself it will punish me for a couple of days. However this flu/sickness bug has thrown all my mess out of kilter and of course as I have not been able to eat really until today all the food I do have turns to sugars to fuel the body. Bummer.

Reply

Hamish, if you feel that badly kratom is definitely worth a go. A lot of people hesitate to try it because it is illegal but if you feel so hopeless then what have you got to lose? It can be purchased by post from Holland. It is effective in a majority of people and also induces a mild sense of wellbeing. It is a lot less addictive than other opioids (I have withdrawn from a variety of opioids - purely in my attempts to find a solution to my rls - I'm not a recreational drug user at all - and I found kratom one of the easiest substances to eliminate). It's not a silver bullet but it has helped me enormously to treat my very recalcitrant restless legs which seem to find a way around most medications.

5 likes
Reply

Not sure about the illegal stride yet

Reply

Hi Hamish,

Don’t give in. Change your GP or print off the NICE guidelines on Targinact for RLS. It is an approved opioid for RLS so your doctor can not refuse it. I have found relief with OxyContin and pregabalin ( for now) and opioids work well at low doses for RLS. My friend works as a nurse in a pain clinic and she mentioned that the NHS is trying to clamp down on opioids due to addiction problems so you need to tell your GP that 20/25mg of OxyContin is effective for RLS and does not result in the addiction problems that patients with pain experience. Pregabalin has also shown good results in studies up to 300mg a day.

The more info you can print off to show your GP, the better. They do not know how to treat it effectively so we have to tasked control. Knowledge is power.

Get another appointment, have the info ready and argue your case.

I wish you well.

Jools

4 likes
Reply

Hi Jools. Looked at the NICE report and the jury seems a bit out on the effectiveness of the drug for her to consider and they only suggest a 12 month course so not really a long term solution. thanks though and I will keep it in mind.

Reply

I accept that but I’m USA opioids are prescribed long term and my neurologist at Kings London is happy for me to be on them long term.

Hope you get more support from your GP.

Take care

Jools

1 like
Reply

Hamish, was thinking of you through the day. I doubt there is a person on this forum who can’t relate to how you are feeling but bear in mind that things tend to seem particularly bleak when one is below par and you have been really ill recently. You are bound to be feeling a little hopeless.

I was wondering if you are still taking ropinerole? It may be causing your symptoms to be worse than they need to be due to augmentation.

Your Gp sounds worse than useless. I’d forgotten she is the one who suggested coming off ropinerole in 3 days. Maybe you should consider changing Gp when you are well enough.

In the meantime if you are still on ropinerole maybe you should ask to change over to neupro patches as they last 24 hours which might be better if you are still bed bound.

There are still options to try, Hamish. Dr. Buchfuhrer maintains that there is no reason why a person with even severe Rls should not live a relatively normal life. There is a treatment out there for everyone. Sadly It sometimes requires tenacity, resilience and a fair amount of suffering along the way to finding it.

3 likes
Reply

Hi ID. No, different doctor. This one understands as well as any doctor seems to but this is still not much. Getting over my bug now and out of bed at last and should be back to work in a day or so. I am still on Ropinerol which I have changed the dosage, not increased it just the times I take it. Did that about 8 weeks ago and it was working until my Flu and sicks on Friday so it is possible that it may work again once I can get back on an even keel. Only the next few days will tell. Will mention the neutron patches though. Are these a DA as well? Thanks for all your help.

Reply

Hello Hamish58

I agree with involuntarydancer i've tried Sifrol and Ropinirole but didn't get on with them i now take the Neupro patch and a 50 g Tramadol at 6 pm. This works most of the time. As Raffs says, taking the Tramadol before it starts is more effective than trying to control it once its in full swing. If the rls breaks through during the night, i take another Tramadol and massage my legs with magnesium oil or Ibuprofen.. They seem to have the same effect.

Good luck.

Reply

The road to coming off Ropinerol has stared as though I try to fool myself augmentation has started. At last a different doctor has given me a very small amount of Tramadol to help, this I will us sparingly though.

Reply

I definitely wouldn't increase the dose of ropinerole in your shoes. Neupro patches are a dopamine agonist also. My consultant maintains they are less associated with augmentation than other dopamine agonists (she is definitely wrong about this in my opinion - I augment on neupro after taking it for 6 weeks - but what can you do?). They are slow release so work over 24 hours and consequently might be more effective for the bed bound. They won't work well if augmentation has set in however and they are very expensive.

I would second what Jules says. Opioids are regularly prescribed on a long-term basis by the top world experts in rls (eg Christopher Early and others at Johns Hopkins in Baltimore and Mark Buchfuhrer in Southern California). If you look at the forum attached to the US rls website rls.org you will find many posters who are on opioids long term - mainly methadone but also oxycontin and tramadol. You could also check out the answers Dr. Buchfuhrer posts to questions posed by rls sufferers on his website rlshelp.org. There are many on this forum also who use tramadol in particular over a long period to treat their rls.

Reply

Hi ID. Mentioned this and took copies of a couple of studies to my doctor a couple of weeks ago. She will not entertain the idea and say this is a US thing as they just like to throw drugs at any problem.............me I don't care if it helps . She has said she will send me to a specialist if needed but this could take a year or so just to see one. Not sure why they see, so reluctant to help.........you can bet if it was them they would be on any and every drug imaginable to alleviate the problem. I will look at the link though. Thanks

1 like
Reply

Hamish,

Lots of great advice here, but can I add my part? I see that you’ve tried magnesium, but what about «Relaxing Leg Cream» by Magnilife? I use this and it does a pretty good job.

In addition to the cream, these are what I try (sometimes they work, sometimes they don’t):

-Knee-high compression stockings to help calm the movements

-Magnesium oil

-Putting a jet sprayer (shower head option) directly up to my legs and covering every inch. The pounding (combined with the heat) feels great!

-A heated hand-held massager

-Cooling gel (the brand I use is «nuflex»; it works well at distracting you from the movements to the cold (it cools a bit too well, so I’ve learned not to be so liberal with how much I massage on my legs))

-Pain relieving liquid called «Lidocaine Plus» used to numb aggravated nerves. (Just started this a week ago — it does deaden the aggravation to some degree)

-A weighted blanket (or any heavy weight). I got my blanket a week ago from a company called «Sensory Goods» (sensorygoods.com) to add to my list of things to try. I got this in the hopes that it would keep me in bed and it does help! (for small movements, at least; not so much for wild ones).

Please don’t give in to this. This is a horrendous syndrome that gives more torture than any human being should ever have to endure, but you can get through this!!!

Please get on a hotline or go see someone right away the second you feel that you are going to hurt yourself. I (and, no doubt, others) have been this desperate many times, so you are not alone.

Take care of yourself,

Jessica

3 likes
Reply

Oh Jesse. Bless you for all your advise but it is gone 4am in the morning, I have not slept, I have been standing downstairs for a lot of the time as well as trying to sleep but I have had enough. There seems no way out and I am in complete despair and sobbed my heart out to my wife an hour ago. I have no more energy to fight this as every time I feel I am taking a step forward I am knocked backwards. I will try and see my doctor tomorrow but I hold out little hope of any help.

Reply

My heart goes out to you. Most of us have been in the same place as you and can empathise. You have been given lots of useful advice and I can only agree with most of it. I am currently getting relief from rotating Codeine and Tramadol on a monthly basis. I am in the UK. So getting the right doctor is , as others have said,vital. I agree that you need to tell your doctor how desperate you feel. I got in touch with Dr. Mark Buchfuhrer by email via the Southern California Support Group website. He is very efficient at replying promptly. I printed out his reply and took it to my GP. This enabled me to get the drugs I am currently taking. I am guessing that if you contact him and explain your position he will email you a reply in support of you taking opioids. You can then submit this to your doctor. Sending you love.x

Reply

Hi Hamish,

Your doctor says rls is not life threatening! Try telling her that you are suicidal. She might be able to speed up your seeing a neurologist or try an opioid.

I wish you well.

1 like
Reply

I sent a list of things that might help. Check your private messages

Graham

Reply

I can only say I know what you are going through I have spent many a night walking the bedroom floor for night after night. I manage my RLS by set exercises and a tens machine after seeing a DR privately who practises positional release on the nerve triggers in the body ( too complicated to explain fully) but if you can find someone who is trained in this field it costs money but worth every penny. I am very gradually weaning off the drugs mainly Pramipexole but it's wonderful to be able to sleep at night again. I am afraid that most GPs don't fully understand how RLS effects the patients who at times can feel almost suicidal. Good Luck

Reply

I am interested in this doctor Hooc. Where is s/he? I am assuming you are in the Uk.x

Reply

believe I know how you feel have you tried pramipexole, people think we are over reacting, if they only new what we are going through, good luck my friend

Reply

Hamish58 just hang in there, have some hope. I had really bad RLS last year and this year tried to turn around my life and be healthy, eat very healthy (no sugar, grains, acidic food) and also am doing accupunture and meditation (I’m using apps). I feel there is some sort of correlation with how anxious the mind feels, the digestive system and how strong the symptoms are. There are alternatives but in general if your body feels better your symptoms will improve - at least that is my experience. Try the weighted blanket that Jess recommends- I haven’t used it but coincidentally we have an extra large duvet now on our bed since the cold weather and slept a few nights with that folded on top and maybe there is something in having some extra weight for smaller movements. Try Restiffic as well- works for some people- there is a 30 day money back guarantee. In general make sure to have a good sleeping environment so that other things won’t wake you up- blackout curtains, minimise electrical equipment in the room, quiet area (I use earplugs). Everybody is different and you will need to try out many things (for a longer period) until you find the right combination that works to manage your symptoms better. Don’t give up!

1 like
Reply

Totally agree (and it’s not because you mention my name).

Hamish: please, please, please hang in there. Remember that suicide is a one-way street that can never be taken back.

Sending you a big hug,

Jessica

Reply

Ask your Doctor to put u on Pexola start with 0.5mg and see if it works for you. I have been taking it for many years and I am now on 1mg and it really works

Reply

I have never heard of this drug Mariannaf. Is it a dopamine agonist?x

Reply

Pexola is pramipexole

1 like
Reply

I'm sorry to hear of your suffering. I think we all have been there to various degrees. At times I would punch the muscles in my thighs and and cry and even crack my knees in exhausted frustration to relieve the sensations. I live in a one horse town and it can take decades to get anything done. Too much exercise and muscle fatigue can make rls worse and so can too little. I'm 59 and had it since I was a child. Lying on my tummy with legs straight temporarily relieves the muscles but I can't do it any more because of my back. Try to sleep sitting, curled up sideways, if u can.. Some sleep is better than none. I hope you find a solution soon. God bless.

1 like
Reply

Don't give up.. I was upset too but have found different remedies by trial and error. I recently found my gaul bladder was blocked and started drinking fresh squeezed orange, lemon, lime juice and a slice ginger every morning. I started by having hot water and lemon at night with magnesium oxide and a probiotics which worked and now I sleep great. Trust in God.

Reply

Mine started when I was a teenager I am now 71 and most nights I use to walk around the house I could not sit down or lie down I use to hit my thighs and legs with my fists until I had bruises. I am from South Africa then my Doctor put me onto Pexola it was a lifesaver I started on 0.05mg and now I am on 1mg it has now gone into my left arm aswell. It is used for patient's with Parkinson's Disease then they discovered it helps for RLS aswel

Reply

So sorry to hear about your plight, please don't give up. In your list of things that you have given up I don't see dairy food. All types of dairy food can act as an immediate trigger for RLS in my case. And I believe for many people. I look carefully at the ingredients on all types of processed food; sauces, gravy browning, breakfast cereals, biscuits etc. Dairy comes in many guises - milk, butter, cream, buttermilk, whey, cheese. Try excluding these from your diet, when I did it I was free of RLS almost immediately. That relief lasted 2 years before RLS returned.

I believe that if the RLS sufferer experiences augmentation with one dopamine agonist they will experience it with all medication of that type so I would not hold much hope with patches.

I have had immediate relief from this dreadful condition recently by using cannabis oil which contains only CBD and none of the mind- altering THC component. I buy it from Holland & Barrett either in-shop on on the internet. £19.99 for a 10ml dropper bottle. (often on offer). I use 2 drops under the tongue twice a day. A bottle lasts me almost a month. My first dose provided instant relief, I was able to relax in a comfy chair, on and off, for a whole afternoon rather than the typical 4 minutes before RLS started.

The oil sounds expensive but relief is priceless!

2 likes
Reply

Hi tapir. Sorry yes, gave up dairy especially milk for soya a few years ago, the rest such as cheese butter etc a few months back. Not heard about the cannabis oil though.

Reply

I know most people on this site won’t agree with me, but I have increased my Ropinrole to a level which has worked for me 1.25 mg for about 10 years. I have some exceedingly bad nights, but on the whole, I can cope. Do what works for you.

1 like
Reply

My suggestion is that you give Sifrol a trial run. In your neck of the woods I believe it's called Mirapex. Even though I am new to the medications that apparently work with RLS, for the first time in 20 years, I lie down to go to sleep, and it's nothing short of a miracle, as my legs my body are totally still, all night long. And I believe that I am on the lowest dosage.

My advice is try it, what have you got to lose. Ah yeah, there is something you have to lose .... that uncontrollable urge to move. Good luck and God bless, my thoughts and prayers are with you.

Reply

To avoid confusion (and possible false dawns), siffrol is a trade name for pramipexole - as is pexole, mentioned above, and mirapexin. They are all the same. They are a dopamine agonist. Hamish is already taking a dopamine agonist drug, ropinerole.

Ropinerole is the same in effect but processed by the liver rather than the kidneys (or it could be the other way round - I forget just now). It would not be a good idea for him to add in another dopamine agonist. I suggested he replace ropinerole with neupro - yet another form of dopamine agonist but essentially the same as ropinerole - only because it is slow release and might therefore have helped him during the day as well as at night.

Dopamine agonist drugs are a FANTASTIC treatment for restless legs for many when they are first started.

Unfortunately they have a sting in the tail.

They start to effectively feed the condition after a while and cause symptoms to become very much more pronounce. Symptoms spread to other parts of the body (for example Hamishreports having them in his arm now) and start at different times of the day. Symptoms are also more violent. This process may occur after only several weeks of taking the drug or not until over a decade but it invariably does occur.

This process is known as augmentation.

It is speculated that it occurs because the drug causes a thickening and reduced sensitivity in the receptors in the brain that it operates on. It is not known if the damage is permanent.

The more the dose is increased the worse the augmentation becomes. Discontinuing the dopamine agonist is the only option at this stage and unfortunately it is a truly awful process with virtually no sleep possible usually for the first two weeks or so and thereafter a slow road to achieve something like the original level of symptoms (ie before starting the siffrol).

Some people believe they never return to their original level of symptoms but suffer a permanent aggravation.

It is for these reasons that there is a great degree of caution amongst many using this forum in recommending this class of drugs in spite of the wonderful relief they can afford at the outset.

2 likes
Reply

Hamish58 Please don,t do anything drastic.This condition is absolutely frightful.I should know I have had severe RLS for 70 years and have tried everything at one time or another.It taxes ones strength and fortitude.I take tramadol now but have complications taking what really works for me opiates due to a heart condition. you must keep on trying various treatments until you manage to get some relief.I found certain foods exacerbated the condition.medications of one sort or another are a problem for others.There is a lot of research going on these days and many more physicians are educated about the disease.Try and find a neurologist who treats this.Also keep up contact on this site you will get a lot of support,it helps to talk about the privations and utter discomfort to people who understand what you are enduring. I send you my best wishes for improvement.

1 like
Reply

You may also like...