Self harm

[MrsS63]

I have suffered with RLS for over 30 years but have only been given Pregablin for a year. It has got to the point it is every night now and the only way to stop it is to hit my leg with something to cause intense pain. That way the pain overrides the RLS and I eventually get a couple of hours sleep but I’m scared I’m going to do some really bad harm. I don’t want to take more Pregablin because the side effects are getting worse. I’ve been referred to a Neurologist but that’s taking forever. I don’t know what to do anymore

[Joolsg]

Did your GP arrange full panel iron, morning, fasting blood tests? If not, arrange now.How are you taking pregabalin and what dose?

For RLS it is taken at night only. Average dose is 150 to 200mg and max dose is 450mg.

Are you on any trigger meds? RLS-UK has a list on the website under medications to avoid.

If raising serum ferritin above 200ųg and replacing trigger meds doesn't help, you will probably need a long half life, low dose opioid like Buprenorphine or methadone.

GPs should be able to treat RLS, but they aren't taught anything. And the NHS local prescribing rules can make it difficult for them to prescribe opioids.

Which neurologist have you been referred to? There are very few in the UK who know much about RLS or the latest research/treatment. You could pay to see a private neurologist who could direct your GP. It would cost around £250 to 300.

Whatever happens- refuse dopamine agonists (Ropinirole, Pramipexole, Neupro patch) as they all make RLS much worse over the years. They are no longer first line treatment in the UK. NICE cks guidance was changed in February 2025 to relegate them to last resort treatment.

[MrsS63 in reply to Joolsg]

I have recently been diagnosed with low iron deficiency and haven’t collected my medication yet. I’m not sure who I’ve been referred to it’s just the general Neurology department at my local hospital. I take 100mgs of Pregablin at night. I’ve been told to take another 100mgs in the morning as well but I really don’t like it and it makes me feel drowsy. Thank you for your reply

[Joolsg in reply to MrsS63]

Oh gawd. The usual negligence by UK GPs.Iron is the major cause of RLS.

Serum ferritin needs to be above 200ųg/L ideally for RLS.

You should ask for an iron infusion now. There are several NHS hospitals that are aware of low brain iron being the main cause of RLS. A private iron infusion costs around £800.

And tell your GP that pregabalin is NOT taken in the day for RLS. That is for pain. RLS follows the dopamine cycle and levels are lowest between 6pm and 6am. Taking at night also lessens the daytime drowsiness.

Add 25mg pregabalin every 2 days to your night time dose. Do not increase by 100mg! GPs should know you titrate up slowly. So ask for 25mg pills and increase slowly by 25mg every 2 nights.

No wonder your RLS is not controlled.

After years of RLS-UK campaigns, the RCGP have finally agreed to add RLS to the teaching curriculum from August 2025.

Read and research all you can. The more you know- the better you will be treated.

And Start iron supplements now.

Take ferrous bisglycinate (gentle iron) every other night before bed. Taking every other night increases absorption as it fools hepcidin ( a chemical that blocks iron absorption).

Start with the RLS-UK website.

[Bramble2000 in reply to Joolsg]

Do people manage to function on large doses of Pregabalin?

[MrsS63 in reply to Bramble2000]

I definitely don’t

[Joolsg in reply to Bramble2000]

The average effective dose for RLS is 150 to 200mg. The maximum is 450mg. Many people do very well on pregabalin.I didn't. It made no difference to my RLS.

Experts believe that years on dopamine agonists cause permanent damage to dopamine receptors. Iron infusions and gabapentinoids then do not work.

Our RLS is then 'refractory'.

In my case- even tramadol and Oxycontin didn't work. Probably due to opioid rebound symptoms.

However- I have found a solution. Buprenorphine stops all my symptoms.

[Bramble2000 in reply to Joolsg]

Oramorph stops my symptoms. Been on it for several years. I live in fear of it not being available or some GP taking it away.

[Joolsg in reply to Bramble2000]

One day the doctors in the UK will be taught about how effective opioids are for RLS.At present- they are taught that opioids are addictive and patients quickly develop tolerance.

That doesn't happen for RLS.

Dr Winkelman's opioid study proves that RLS patients stay on the same low dose for decades.

We are dependent on meds. But so are MS and PD and Diabetes patients.

[Bramble2000 in reply to Joolsg]

Interesting. I was prescribed it for something completely unrelated. The dose has increased over the last 8 years or so but definitely not enough to say I’m taking it due to addiction. It does nothing for my pain but helps the RL loads. My GP would argue that I’m experience rebound but that’s not the case either I don’t think.

[Joolsg in reply to Bramble2000]

The best opioids for RLS are methadone and Buprenorphine. They have a long half life of 25 hours so cover RLS all day and night. They don't cause opioid rebound due to the long half life.If oramorph is taken for pain- it will tend to wear off & create tolerance. That's why people end up increasing the dose

Pregabalin/gabapentin and cannabis are better for long term pain.

[Bramble2000 in reply to Joolsg]

Depends what’s causing the pain. The only thing for my pain is high dose Prednisilone but I can’t tolerate it.

[Bramble2000 in reply to Joolsg]

I’ve had Buprenorphine in patch form. It burned my skin and I wasn’t offered anything else so I went back to the Oramorph.

[Joolsg in reply to Bramble2000]

That is a big problem in the UK. Buprenorphine in pill form is subject to a postcode lottery. Some local formularies red list it so only a specialist can prescribe.Hopefully, when Official NICE guidelines are achieved- Buprenorphine and iron infusions will be recommended treatments.

[intermk in reply to Joolsg]

That RLS-UK chart shows two meds to avoid which doctors actually prescribed to me for RLS. Amitriptyline and Nortryptiline. They had me on those two drugs for at least 2 1/2 decades plus Clonazepam. Of course they didn't work but the doc's had me convinced that these drugs were actually lessening the severity of my RLS and that Clonopin was helping me sleep. The latter is also false. All Clonopin does is make you a better zombie the following day due to it's long half-life. These are American doc's I speak of.

[Joolsg in reply to intermk]

Sadly your experience is very common.Medical ignorance is widespread.

[intermk in reply to Joolsg]

So true.

[SueJohnson in reply to intermk]

My 2nd laugh for the day - All Clonopin does is make you a better zombie the following day🤣🤣🤣

[SueJohnson]

I agree 100% with Joolsg. Let me add a few things.

1st what city do you live in?

According to the Mayo Updated Algorithm on RLS the usual effective dose is 200 mg to 300 mg. Taking it in the morning will make you drowsy which is fine at night. Take it 1 to 2 hours before bedtime. You might find that way that it does control your RLS. If not do ask your doctor for 25 mg tablets.

Call your doctor's office and ask if they checked your ferritin and TSAT (transferrin saturation percentage) and if so reply back here what they are Although they said you have low iron, the normal test does not check for ferritin which is the most important measurement needed for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. This is the first thing a knowledgeable doctor should do. If not when you see your doctor ask for a full iron panel.

Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Definitely ask your doctor for an iron infusion. If you can get one and have to go private I know one place where you can get one for a lot less than £800.

Meanwhile make sure the iron medicine you get contains 75 mg to 100 mg of elemental iron. If it does say reply with the name and I can tell you. Take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.

Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[MrsS63 in reply to SueJohnson]

I have to take multivitamins and minerals because I had a gastric bypass so I take the Centrum chewable ones. I also have B12 injections every 3 months. I take Pantoprazole and 60mgs of Fluoxetine in the morning.

My Serum Ferritin is 20 and folate is 3. I live in Berkshire. Unfortunately I can’t have the private treatment as I’m on benefits so could never afford it.

I can try to stop eating sugar which might not be helping, I only have like a 2 finger Kit Kat but that is in the evening. Thank you for replying Sue

[SueJohnson in reply to MrsS63]

Pantoprazole, an antacid, is a proton pump Inhibitors (PPI). It can interfere with the absorption of iron even if taken 2 hours before iron . No evidence I can find that it otherwise exacerbates RLS symptoms however several people have said it does and RLS-UK says most proton pump Inhibitors worsen RLS. (rls-uk.org/)

Instead I would recommend Gaviscon Advance unless you are bothered by aspartame in the tablets or saccharin in the liquid. It is OTC. Take it 30 minutes after eating and 4 hours before or 2 hours after taking iron. Don't take it within 2 hours of taking gabapentin.or antihistamines. Be sure it is the Advance.

Fluoxetine is a SSRI antidepressant and makes RLS worse for many. I would recommend Wellbutrin or trazodone although wellbutrin can be hard to get in the UK. pubmed.ncbi.nlm.nih.gov/201...

You might want to discuss these with your doctor. If s/he doesn't think they make RLS worse show her the articles.

[Hectorsmum2 in reply to MrsS63]

It maybe that you are not getting enough B12 as well. Focus on your iron first but if getting that up doesnt help take a look at pernicious anemia forum on health unlocked for support. 3 month injections suit some people but others need more. I self inject weekly.

[Lory_Y]

That sounds so exhausting and painful. You’re not alone, though. A lot of people with RLS get stuck in this cycle. I know the wait for a specialist feels endless, but it’s good you’ve been referred. In the meantime, maybe talk to your doctor again about other options or ways to manage the pain safely.

[nick-the-turk]

is there a link with self harm and pregabalin because I often punch my legs for relief or get the urge to break my legs and see if that would cure RLS only a thought But please keep pestering your GP with the advice from these good people and believe me your not alone and talk out to people

[2islandboy]

Suggest that you tell us the nearest large city to your home. People here will suggest a doctor who SPECIALIZES in RLS. Don't blindly run to a convenient doctor/neurologist who most likely won't understand/treat RLS. I have to drive three hours to see my RLS expert Neurologst. He saved my life. Where do you live. Let us help you find an RLS specialist.

Your Ferritin is extemely low for an RLS sufferer. You need an iron infusion. This will help 60% of us reduce our symptoms. The people on this Blog will help you save your life. They help me every day!

[MrsS63 in reply to 2islandboy]

I live in Slough Berkshire, near Windsor

[ciaranxena]

Estrogen has helped my RLS immensely. But I feel like I have permanent cognitive damage from the gapapentin and other experimental drugs for this horrible disease. At night before bed.. I use a percussion massager and stretch. Helps a lot. You might consider some of these options? Insurance does not cover the estrogen patch. But it's worth the expense for me.

[SueJohnson in reply to ciaranxena]

You are lucky because estrogen makes RLS worse for most.

[Vestajo]

I got the name of an amazing book from someone in this group. It has changed my life. It is Navigating Life with Restless Legs Syndrome but Andrew Spectore, MD> He is a neurologist in the US who specializes in patients with RLS. I bought copies fon Amazon for myself, my neurologist and my GP. Since I have left off Alcohol, caffeine and SUGAR, I have had huge improvement. I've had it for 30 years and tried vairous drugs. Mirapex worked well for me for many years but had started losing it's effectiveness. Since i have changed my diet and given up my Wine (hard to do) and also some of the other meds like antihistamines that I regularly took, my life has changed drastically. I feel your pain. Also try a "thumper" which is a massager that feels great on legs at night. I pray you get some relief soon.

[SueJohnson in reply to Vestajo]

For others that read this, only the sedating antihistamines make RLS worse and some people are able to drink alcohol - others aren't.

[AmazedAnt]

Hope you get to see a competent neurologist ASAP! While waiting for the kratom to kick in, I have to shake out my arms & legs and I find that lightly punching my hamstrings helps quite a bit, albeit only for the short-term...

Thank goodness no one sees me, they would likely call the gang in the white jackets to carry me away lol!

[2islandboy]

"MrsS63• in reply to2islandboy

9 minutes ago

I live in Slough Berkshire, near Windsor."

Someone will suggest an RLS Doctor near you.