no sleep for days

[Fishingmad107]

Hi all I have had this rls for about 10 years now can’t sleep most nights. Has anyone had any experience with phosphate and how does it work with rls. I’m willing to try anything to get a good nights sleep i was talking roprinpole for years it helped me for a while but as we all know what happens to you. Have been on pregabalin for a few months now but this has not stopped it any help would be appreciated. GP not much use as they know very little about it

[SueJohnson]

It is not associated with RLS at all unless you have certain other problems like with your kidneys or thyroid. I'm sure you can get more information from your doctor.

[SueJohnson]

How much pregabalin are you on and when do you take it?

[Fishingmad107 in reply to SueJohnson]

I am currently on 300 m at night. Ferritin is over 100. Thanks for Your swift reply. I asked about phosphate as I had bloods taken 1 month ago,repeated again today as phosphate’s were high

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, 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, 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, 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.

[Fishingmad107 in reply to SueJohnson]

Thank you for your help Sue I have ongoing issues with my heart as I had a new valve fitted about 3 years ago so am on quite a few pills. They are Apixaban 5mg twice daily, Carvedilol, Perindoprill, Atorvastatin 80mg, Anoro Ellipta inhaler +Co codamol when needed. I’m not sure if any of these make it worse so any help would be appreciated

[ChrisColumbus in reply to Fishingmad107]

Atorvastatin makes RLS worse for many: it had a terrible effect on me, with very bad RLS but also made me very tired and physically weak. The months I was on it were some of the worst of my life. As I say at the end, you may want to discuss alternatives with your doctor.

Many doctors will say that statins are essential, that there are no alternatives, that benefits outweigh all side effects, and that once on statins you will need to be on them for the rest of your life.

I did eventually convince my consultant that I could not tolerate statins. (I was also tried on rosuvastatin: it had similar side effects to atorvastatin, if not quite so extreme).

She eventually agreed to put me on ezetimibe (brand names Ezetrol, Zetia) instead. I later found that ezetimibe, which works differently from statins in that it inhibits the intestinal absorption of cholesterol, is recommended in the UK if a statin is “inappropriate or not tolerated”. It generally works more slowly than a statin, so may not be suitable for those with very high LDL.

Other alternatives to statins include bempedoic acid which works by reducing the production of cholesterol in the liver. And Nustendi (Nexlizet in the US) which combines ezetimibe with bempedoic acid. This may be a good alternative for people who cannot tolerate statins.

Lipid lowering fibrates (such as fenofibrate and bezafibrate) can also be used if a statin is contra-indicated or not tolerated.

These alternative treatments also have side effects (virtually all drugs do) but may not trigger RLS (ezetimibe doesn't for me).

You need to discuss the alternatives with your doctor.

[ChrisColumbus in reply to Fishingmad107]

Perindopril did not trigger my RLS but it did leave me with a persistent dry cough, a common side effect. My GP moved me on to losartan, which at 50mg a day controls my blood pressure but does not set off my RLS (I have no RLS symptoms now).

Some people report that losartan does exacerbate RLS. I can only say that we're all different, but also suggest that this may be linked to dosage and timing. The NHS says that losartan can be taken at any time of day, but some doctors apparently specify taking it in the evening which may be problematic for RLS. I take mine with breakfast.

[ChrisColumbus in reply to Fishingmad107]

Carvedilol is a beta-blocker which as a class can exacerbate RLS, although some members say this is not the case for them.

Propranolol has been recommended as a safer beta-blocker for RLS sufferers, but this still gets some negative reports.

The statin you're taking is most likely to be triggering your RLS, so IF your doctor will allow you to come off that you may then discover whether or not the beta-blocker is also troublesome.

Good luck with all this: I'm afraid that trying to get a balance between necessary medications and their side effects (including RLS) can be a really difficult.

As both Sue and Jools write, investigating and if necessary adjusting your serum ferritin levels may go some way to resolving your issues.

[SueJohnson in reply to Fishingmad107]

ChrisColumbus beat me to an answer and his answer is fine. Apixaban should be OK for RLS, although 1 person on this forum said it made her RLS worse. A safe blood thinner is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib... Another alternative to your beta blocker is Isosorbide Mononitrate (Monoket, Imdur)- a nitrate that treats angina and heart failure - relaxes the blood vessels and increases the supply of blood and oxygen to the heart. And then there are there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres, Kapvay) an Alpha-2-Agonist used to treat high blood pressure, insomnia and ADHD (not a stimulant) and may help RLS, tenex (Guanfacine, Intuniv) treats adhd and high blood pressure, prazosin (Minipress) - alpha-adrenergic blocker that treats high blood pressure; useful in managing sleep-related problems caused by PTSD and Tadalafil (Cialis, Adcirca), a Vasodilator that treats erectile dysfunction, enlarged prostate, and high blood pressure - in one study completely eliminated RLS. If the problem is high cholesterol, I have other suggestions. Clonidine actually helps RLS is some people. Talk to your doctor about these. Anoro Ellipta inhaler +Co codamol are fine.

[SueJohnson]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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, fast after midnight and have your test in the morning. 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 advice.

[Joolsg]

If you've been on pregabalin for months & you still have severe RLS, you will need to check your serum ferritin. Raising it above 100, preferably 200 can help many with RLS. Also ensure you're not on meds that worsen RLS ( anti histamines, anti depressants, statins, betablockers, PPI meds).If raising ferritin & eliminating trigger meds doesn't help, then you may need a low dose opioid.

After augmentation on Ropinirole, I wasted 5 years on 25mg Oxycontin and 150mg pregabalin. My RLS was still very severe.

I'm now on 0.4mg Buprenorphine and have had zero RLS since July 2021. I sleep over 8 hours every night.

There are many who do not respond to gabapentin/pregabalin after augmentation on Ropinirole/Pramipexole.

Your GP may be reluctant to prescribe opioids and so show him/her the Massachussetts RLS opioid study.

massgeneral.org/rls-registry

[SEBARTA]

Try 50mgs of pycnoginol at lunch and dinner. Also take a B vitamin complex with dinner. This has virtually eliminated my decades long RLS symptoms without any side effects. I also take 250 mgs of KSM 66 ashwaghanda at bedtime for stress reduction.

[rchobby]

Please stay clear of any foods containing phosphates!!! They are poisonous for anybody suffering from RLS. This is from personal bitter experience and warnings from many of the members of this forum. Any prepared meals and meats - hams, sausages, bacon, some spit roast chickens, ready cooked meals. Best to read the ingredients on the labels.

Sue's list of foods to eat and to avoid is great and my husband has managed to stave off serious episodes for over a year now using her guidelines and Buprenorphine.

Except for phosphates !!!

Best advice I've read in answering your question is from Joolsg who is on Buprenorphine. Perhaps you could persuade your GP to read the literature available and allow you to try.

Ferritin is not always the cause - my husband has had iron infusions which increased his ferritin levels and did nothing to ease his RLS.

[kcraig]

I was on Ropinerole for quite some time. It only lessened my RLS and made me bad nauseous. I was still having leg movements during the night. A different Dr. tried me on a low dose of Methadone and saved my life. I was so close to suicide. No episodes, no side effects and I can get 10 hrs sleep.

[Graham3196]

I have had RLS for 60 years It became worse as I aged until it was life threatening and I decided I had to do something. After a long series of experiments I have worked out a diet that works for me and now I usually sleep every night. The diet is a bit boring and there may be things you have to modify for yourself but if you're interested I'll send the details as far as I have documented them.

Dont be misled by your ferritin level being over 100. The American experts say they have had patients that had to exceed 300 before their symptoms were relieved. To get to 300 you will need an iron infusion which will require educating and grovelling to many GPs. Keep your expectations low as raising the ferritin doesn't work for everyone. I raised mine to about 540 with no relief but I know someone who was 100% relieved and after 5 years still hasn't had a recurrence.

Good Luck