Bad restless legs

[Amy881]

I have been suffering with bad restless legs for weeks now I have codeine but it’s not helping any suggestions

[Hidden]

First look at all substances you are taking that tend to make the SyMPTOMS of RLS worse, such as anti-depressants, antihistamines, antacids, HRT, melatonin, as well as others. Once you stop any of the above your RLS may disappear the day you stop. If the above doesn’t apply to you then take a look at my profile page and think about giving the iron a go.

[Amy881 in reply to Hidden]

I am on antidepressants have been for years but this is just recently this has started happening

[Hidden in reply to Amy881]

Don’t go down the Dopamine Agonist route whatever you do. Try the night time iron and not eating after 7pm. Then fast till the morning. The anti-depressant is making your RLS worse than it has to be. The codeine was masking it and now not working so well. Talk to your doctor about switching to trazodone or Wellbutrin. Those are anti-d that don’t worsen the symptoms of RLS.

[Hidden]

If you’ve tried everything on the NHS website I suggest speaking to your GP.I was under a lot of stress so exacerbated to RLS.

I have been prescribed Pramipexole which has really helped.

I doctor wants me to come off it slowly as I improve.

[Amy881 in reply to Hidden]

Can I request that?

[Hidden in reply to Amy881]

Suggest it to your GP and they will decide if it’s right for you.They will probably start you off on a low dose first then increase it if needed.

It took about a month for me to work 100%, I sometimes have a little disturbance at night, but it’s a million% better.

Understand the side effects of the drug, I didn’t have any, if you do speak to your GP immediately.

I am decreasing my stress with exercise etc and will come off it over time, but you can’t just stop the medication overnight you need to come off it slowly.

But if you were like me and really struggling you need you GP’s help, don’t suffer in silence.

[Joolsg in reply to Amy881]

Don't ask for it. Dopamine agonists are no longer first line treatment due to the very high risk if augmentation and Pramipexole is the worst for that. Read everything on here about Pramipexole and augmentation and you'll see augmentation is very common and getting off Pramipexole is hell on earth for the overwhelming majority.Pregabalin is now the preferred first medication.

As Lonepine advises, your anti depressants will trigger/ worsen RLS.

Discuss with your doctor. If you're taking it for anxiety, there are safer options that don't trigger RLS and that help RLS. There are a few anti depressants that don't trigger RLS like trazodone and mood stabilisers such as lamotrigine and carbamazepine.

Ask for blood tests and ensure serum ferritin is above 100, preferably 250. Raising levels resolves RLS in over 50% of cases.

Meds should be considered if raising brain iron doesn't improve your RLS.

[LanaCSR in reply to Joolsg]

Hey Joolsg, do you know if Xanax is a good anti-anxiety medicine that wouldn't make RLS worse?

[Joolsg in reply to LanaCSR]

Most benzodiazepines are RLS friendly but I'm not sure about xanax as it's a benzo fused with triazole.Clonazepam is often used for RLS and as an anti anxiety med.

Pregabalin is also good for RLS and has anti anxiety properties.

[Joolsg in reply to Hidden]

Your doctor clearly knows very little. You don't 'improve' by taking Pramipexole and then come off it.Getting off Pramipexole is very, very difficult and the long term effect on your D1 receptors may be permanent.

He should have advised you to raise serum ferritin and serum iron before prescribing Pramipexole and warned you in detail about Impulse Control Disorder and Augmentation of symptoms.

Don't increase the dose as that quickly leads to Augmentation.

Read everything you can about Augmentation so you can spot the signs.

[Eryl]

It could be because of an inflammatory diet. Voltarol ointment is for joint pain but it contains an anti inflammatory agent. It's recommended that it's not used long term but will be good to test whether your rls is due to inflammation. Chronic inflammation (that caued by food) is most often caused by high blood sugar due to a high carb diet but also in many instances by refined seed oils used for frying and in processed foods. I have completeley eliminated my rls by following a strict anti inflammatory diet.

[involuntarydancer]

Pramipexole is a dopamine agonist and you would be better to avoid it - as others have said. Many GPs continue to prescribe it but experts in RLS treatment now recognise that it is very likely to make your RLS worse and cause much suffering in the long run.

I would agree with the first response that you should consider whether there have been any changes in medications/diet that may have caused your rls to worsen.

Is it possible that your iron levels have dropped? It is definitely worth getting your blood checked and your serum ferritin measured - make sure to get the actual figure not just that you are 'normal' or 'fine'. For RLS sufferers the figure should be over 100. For many sufferers, increasing their serum ferritin by taking a supplement can resolve the difficulties completely.

After that there are lifestyle changes. There is loads on here about non-pharmaceutical treatments that help individual sufferers - including various restrictive diets. It is a very idiosyncratic condition however and some find that only pharmaceutical options will assist. As you have found with codeine, opioids are effective against rls but sometimes efficacy diminishes with time. The other avenue is anti-convulsants such as pregabalin or gabapentin. These work for a good number of people and if you are going down the prescription med route it would probably be better to start with these.

The condition is not well understood within the medical profession and it is VERY important to educate yourself about it. Many GPs and neurologists inadvertently make their patients' condition worse by prescribing ill-advisedly. You will learn loads by reading the posts on here and on other RLS forums.

[SueJohnson]

I would suggest gabapentin rather than pregabalin because you can increase it by smaller doses (100 mg). Once you find out what dose works you can switch to pregabalin if you want. It takes at least 3 weeks to be effective.

[Bieler]

I have the answer you’ve been looking for!TRAMADOL!! It’s the only thing that helped me and I’ve had it for 65 years. Since I was a child. I was sleep deprived and miserable and dreaded going to sleep. During the day was tough at times too. The pain, heavy legs and sleepy all day. Finally I stumbled upon a forum for RLS AND TRAMADOL! Saved people from suicide according to testimony. Thousands of people said tramadol was a Godsend.

The next day my Dr ordered me some and within an hour I felt normal. I spent the previous 2 days in bed. Crying.

Tramadol is a “shit” painkiller. I was once given 1000 mg IV for a torn rotator and it did nothing. And that is the story of others. They took it for a broken arm etc., and it didn’t help the arm but their RLS disappeared!!!

I take a 50mg dose 4 x per day. Morning noon night and then before bedtime. Sometimes less but it’s the only thing that works. I tried every trick in the book including opioids and other crazy drugs and vitamins. Nothing helped and had side effects.

Also, a tip: Sucralose makes it worse so if you’re drink or eat anything with Sucralose in in; I would suggest staying away from it.

Powerade Zero has it. My sister and I drank a lot one long weekend and my legs were on fire. Day and night and my sisters legs were hurting her but she does not have RLS.

I hope this helps. Maybe your can get an RX and take one when you are really bad or before you sleep to try it out. I wish you the best.

[Jelbea in reply to Bieler]

Hi Bieler - You say you"have tried every trick in the book including opioids and other crazy drugs". Tramadol is an opioid and that is why it is working for you. I am glad you are getting relief and long may it continue.

[Bieler in reply to Jelbea]

You’re right. Tramadol is a synthetic opioid and was a class 4 but recently moved to class 3 because of the opioid crisis. I was addicted to norco and Vicodin. Had to go to a REAL pain clinic and take suboxone for a year to get off. (This was all ME wanting to get off the drug because I knew I had a problem) The difference is that you don’t get “high” on tramadol. My pain Dr gave me tramadol knowing all about my past addictions. He started me on 8 per day. It was double what I’m taking now. I reduced it, myself, to 4 per day and I had no problem reducing the dose. I NEVER would be able to do that with norco or Vicodin. Always craved more. I don’t crave tramadol at all. You don’t feel any different when you take it. My RLS just goes away. I know it is considered an opioid, but, Believe me, my Dr is highly regulated by the DEA and I would never want to be on anything that was highly addictive. What I went through getting off opioids was pure hell and I would not wish this upon anyone. When I miss a dose; my RLS comes back but I don’t get the horrific withdrawal effects as I did before. I could never “miss a dose” of norco. I am very proud of overcoming my addiction. It was, without a doubt, the worst experience I’ve ever been through. My pain Dr saved my life. So grateful.