Suffering with extremely Severe RLS with a score of 39 out of 41 on the RLS scale. ( 1=no symptoms 41= Extreme Clinical RLS)

[RLS_UK]

Hi, I'm 50 years old and have been clinically diagnosed with severe RLS by the Consultant and my GP. I have tried many of the drugs from gabapentin, repinerole, pregabin, and all of the usual drugs that are prescribed. I am on tables now for depression caused mainly by my condition.

I had a one night stay in the Sleep Clinic where they monitored me only have 30mins sleep. After the study they have increased my medication from 2x 50mg Tramadol to 4x 50mg Tramadol. My boy has grown accustomed to this drug and has no effect. Has anyone been in the same position? If so, what helped?

I've had my bloods done and my iron, magnesium etc are all within normal parameters. Im lucky if i get 1-2 hours sleep a night. It is really affecting my life.

I eat healthy, active for the majority of the day with exercise. Just need my legs sorting.

My three Aunts and my late mother all suffered with restless legs syndrome with differing degrees. It is with me constantly day and night. Any help is most appreciated. I am to see the Nurse Practitioner next week and need to have some sort of battle plan in order to move forward.

[Hidden]

Sorry to hear about your issues with RLS. I have been the same for the past 8 days 1-2 hours per night. How do you manage to function with such little do you eventually get used to it?

[RLS_UK in reply to Hidden]

I look after three parishes with over 200-300 people. All have different needs. I put a brave face on and try my best. Not always possible but thats life. We all have something to bear.

[RLS_UK in reply to RLS_UK]

Im on the 250-300 nanograms per milliliter of blood.

[SueJohnson]

You say your iron is within normal limits. Do you know your ferritin? What is normal for others is not normal for those of us with RLS. Increasing your ferritin to 100 or more helps 60% of people with RLS.

[bls0214 in reply to SueJohnson]

Sue

Could you tell me what the protocol for iron infusion is in US?

[SueJohnson in reply to bls0214]

I'm sorry - I do not know.

[SueJohnson]

You say you tried gabapentin and pregabalin. How much did you take?

[RLS_UK in reply to SueJohnson]

They maxed out the legal dosage in Uk and after 6-8 weeks, with having no effect the Doctor decided it wasn't working. I could have told him that. My bloods are taken every 3-6months to monitor my trace levels.

[SueJohnson in reply to RLS_UK]

What is the legal dosage of gabapentin? And what is your ferritin.If you don't know, ask your doctor.

[ChrisColumbus in reply to RLS_UK]

I'm not sure about 'legal' dosage of Gabapentin, but NHS guidelines for adults and kids over 12 is a usual dose of up to 3600mg/day. If you were really on that level for weeks no it wasn't going to work! On the other hand, while Magnesium Citrate controls my RLS in normal times (if I'm careful with diet and exercise) statins completely stop that working and give me terrible RLS. (See my other posts further down the chain). Perhaps it's possible that statins or other meds - such as your anti-depressants - overwhelm Gabapentin as well...

[SueJohnson]

Another one to try 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...

[SueJohnson]

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 and yoga.

[Whippetmama in reply to SueJohnson]

You neglected to mention that spine surgery also has the potential to exacerbate RLS.

[SueJohnson]

Many medicines and OTC supplements can make RLS worse. If you are taking any medicines or any supplements 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.

[RLS_UK]

4x 50mg tramadol, 2x statin for high cholesterol.

[ChrisColumbus in reply to RLS_UK]

Statins are notorious RLS exacerbators: my worst RLS experience ever was on Atorvastatin, and it also left me terribly fatigued and lacking in energy. My GP then tried me on Rosuvastatin: it wasn't as awful, but still made my RLS bad. Doc then put me on Ezetimibe: not as fast acting against cholesterol as a statin, but doesn't trigger my RLS. I may be suffering 'uncommon' (1/100) joint pains caused by Eze, but am still investigating this. Unfortunately virtually all drugs have side effects, but I particularly hate RLS and fatigue so won't touch statins again. Cholesterol may be best tackled by diet and lifestyle changes anyway: one of my friends completely eliminated his high cholesterol and various other health issues by going vegan. He has more willpower than me!

PS: too many doctors and neurologists blithely tell you that your iron/ferritin is 'normal'. They know so little about RLS and the fact that what is 'normal' for most is too low for RLS sufferers. You must have a full iron panel done, as early in the day as possible after fasting over night, (and after not taking iron supplements for 48 hours - if you're taking any). And as Sue says, your serum Ferritin number has to be over 100, 200 even better. They must give you the number!

[ChrisColumbus in reply to ChrisColumbus]

BTW, I've only ever had one serum ferritin level below 200 and that was 183: there's a minority of RLS sufferers who do not have a low level. My triggers are certain medications ( bloody statins), too much sugar, the sweeteners in diet drinks (particularly Aspartame, but all others too), caffeine (although this seems to help some), too much exercise, too little exercise.... Magnesium Citrate 400-600mg a day really helps me (can cause diarrhoea in some): I've never had my Mg level measured, but - as for iron - I'd be doubtful of doctors 'normal'!

[usefulcormorant]

I suffered with RLS most of my adult life. A year ago I Iwas diagnosed with Parkinsons and began taking carbadopa/levadopa. My restless legs stopped almost immediately. I still take Mirapex as well.

Look up RLS and carbadopa/levodopa. It is apparently considered a new treatment for RLS. Best of luck!

[SueJohnson in reply to usefulcormorant]

Just be aware of augmentation. There are other medicines you can take for Parkinson's if that happens. See mayoclinic.org/diseases-con...

[SueJohnson in reply to usefulcormorant]

No - it is an old treatment. It used to be the first line treatment for RLS but no longer is. Gabapentin and pregabalin are. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it Https://mayoclinicproceedings.org/a...

[Joolsg in reply to usefulcormorant]

It's not a new treatment for RLS. It's a dopaminergic drug used decades ago with the highest rate of augmentation and hasn't been prescribed for years for that reason.

No one should be prescribed these drugs as first line treatment for RLS any more. The Mayo algorithm, written by the world's top RLS experts make that clear.

I'm glad it's helping your Parkinson's & your RLS, but its no longer recommended for RLS

[Joolsg]

What drugs are you currently taking and the doses? Are you still on Ropinirole or Pramipexole? Anti depressants trigger RLS so what are you on?

If you tell us the drugs you're taking, the dose and the results of your blood tests we cabmn guide you better.

[SueJohnson]

NEXLIZET is a cholesterol lowering drug that is not a statin, Triglide (Fenofibrate, Fibricor, Lipofen) - may be safe Discuss these with your doctor. Also as ChrisColumbus mentioned going vegan is a great way to lower your cholesterol. My husband lowered his cholesterol from 221 to 131 by going on a vegan diet.

[SueJohnson]

What antidepressant are you on? Most cause RLS to be worse. Safe ones are Wellbutrin and Trazodone.

[Poppip]

sorry to hear you have it so difficult. I am 52 and have tried all those meds too. I now take either a half or a full Temgesic sub lingual 0.2. It has been totally life changing for me. We’ll worth giving it a try. I saw a consultant who recommended Temgesic. 🤞👍🏻Best of luck to you 😊

[Artnmusiclover]

I so feel for you!!! I have restless legs and was in a magnesium glycinate bath at 3am this morning. I have noticed mine have got worse since starting statins and wondered if there is a 'best time' to take them rather than before bed??

[ChrisColumbus in reply to Artnmusiclover]

For me there's is NO good time to take statins. While some RLS sufferers can apparently manage them,I had to get my consultant and GP to take me off them: neither knew that statins exacerbate RLS in many. Both could only come up with Exetimibe as a non-statin cholesterol reducing drug: not as fast acting as statins but doesn't trigger my RLS.

[Artnmusiclover in reply to ChrisColumbus]

Thank you for this info...I'll probably make the suggestion to my GP if it continues

[bedith6]

Hello RLS-UK. Sorry you’re having such a bad time at the moment. Like you I had taken every medication going until Tramadol. They worked for me for four years until eventually they were no long efficacious. I went to a neurologist who is now prescribing Temgesic which is buprenorphine. It is not the magic bullet I had hoped for but my rls is much better than it was and is enabling me to cope. I also take iron every other day with vitC. aswell as magnesium. When my legs get very bad Ifind that magnesium spray rubbed in and massaged well a great help. Another helpful tip is a heavy and robust hand massager, I use this if I get the awful feelings coming on and mostly the massager will stop these sensations developing. Perhaps you may suggest Temgesic to your health care provider and also perhaps an iron infusion if you are a suitable candidate. Best of Luck.

[Rezcat11]

Severe refractory RLS exacerbated by years of dopamine agonists. Now, 30 mgs of methadone lessons the intensity of nighttime suffering [although not enough for sleep] Accepting that I won't be able to sleep at night so I need to get all the sleep I can during the day has increased my sleep from 0 - 2 hours/24 hours to 3-7 hours/24 period.