ARRRGH !

[Oscarcat63]

Hi all, I live in Tasmania, Australia and do not have private health cover.

I am 60 years old and have had rls since I was 21, that I know of.

I have also been on antidepressants since 1980... I realky believe that they have caused the rls as no one in my family had it.

Anyway, it became absolutely unbearable last year, but I did not pesue treatment until January this year as I thought that there was none.

I have been prescribed 0.087 mg of pramipexole, but I have decided to half this amount (so far, so good) and 75 mg of pregabalin.

I have 1 -2 cups of coffee in the morning an no other caffiene

But ugh, still can't sleep well unless I have quetiapine 25 to 50 mg and we all know what THAT can do to rls, so I try not to have it if possible.

I can not tolerate antihistames, but ironically I coukd when they were give during iron transfusion ( due to prolonged blood loss ).

I am also 'permitted ' to have 10 mg of valium per week, which I main use for anxiety - I have been agoraphobic for 42 years and have had valium for 31 of those. Can't get more as Gp scared of addiction (sigh) .

He also sees no need for a fbc or iron studies or sleep study.

Drives me mad and I can't see any other doctor (mustn't 'doctor-shop'!).

My twitching begins in my lower back and I am wondering why.

I am ranting a bit, because I don't think I can do anything about it and as for pain killers, it's ibuprofen or panadol,..... because.

Addiction.

So

ARRRGH

[SueJohnson]

Why can't you see another doctor?

You need to have your ferritin tested. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. You are the patient and paying. Insist on a having 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 some advice.

[SueJohnson]

Are you still taking antidepressants? They do not cause RLS but they do make it worse. The only safe ones are Wellbutrin (bupropion, zyban) and trazodone. Unfortunately trazodone isn't prescribed in Australia and Wellbutrin is only prescribed for smoking cessation although it can prescribed off label for RLS. Obviously your doctor is not going to do this.

Yes quetiapine can definitely make RLS worse. I would ask for a prescription for Ambien or Lunesta. Ambien is advised only for short term or intermittent use but Lunesta is not. Always discuss these with your doctor.

[SueJohnson]

Dopamine agonists like pramipexole and ropinirole used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

So yes you are wise to take only half of it and after that I would advise you to stop taking it entirely after 2 weeks. Instead increase your pregabalin dose which is now the first line treatment for RLS. it won't be fully effective until you are off pramipexole for several weeks. Increase it by 25 mg every couple of days up to 150 mg and then wait until you are off pramipexole for several weeks. After that continue to increase it every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily."

Since your doctor is not up to date on RLS or he would never have prescribed pramipexole, print out the appropriate sections of the Mayo Clinic Algorithm on iron and pregabalin to give him.

The twitching is probably a symptom of your RLS.

[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 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.

[Oscarcat63 in reply to SueJohnson]

Hi Sue,Thank you for your reply and all the info.

There is a huge shortage if doctors here and very, very few will prescribe valium. They are utterly, utterly paranoid about it. The ones that do so have closed their books.

No, I do not pay him ( except the gap fee), but I will print out the Mayo protocol and give it to him. I will have to make a double appointment for that though. It will give him time to read through it..

I will ask for iron studies, but my understanding is that it is the Iron levels in the brain that are important in rls, and not sure how they measure that.

Still, I will ask.

Yes, I take 40 mg of fluoxetine in the mornings, but will probably drop to 20 as it really doesn't seem to make much difference in mood or anxiety.

Pregabalin helps though. I will discuss the dose with him. I only have 75 mg capsules at the momement.

Thank you again for your time and advice

[SueJohnson in reply to Oscarcat63]

The ferritin is the best indicator of iron levels in the brain.

[marigold60]

My rls usually starts in my back. A couple of things help. Ibuprofen gel rubbed into the spot and sometimes using a massager on the area relieves it. Quite often I will wake up in the night and use the gel and I can get back to sleep

[Meeemeeee]

Hi, I'm on quetipine 600mg and I used to have horrendous rls. I switched from the normal quetipine to the extended release one and it really helped me. I also take a high dose of magnesium supplements and propananol 80mg to help my rlsat the same time I take my quetipine at night. This has helped my rls immensely. I find it also helps to keep my legs as cool as possible as when they get too warm my rls flares up. I don't know if this might help you. Good luck as I know how awful it is x

[SueJohnson in reply to Meeemeeee]

You are lucky - for most people it makes RLS worse. Just shows how we all react differently.

[Meeemeeee in reply to SueJohnson]

Hi sue , what makes rls worse?

[SueJohnson in reply to Meeemeeee]

quetiapine

[Meeemeeee in reply to SueJohnson]

Yes the non extended release did me but the changing to the extended release helped a lot. 🙂

[Oscarcat63 in reply to Meeemeeee]

Yes, it is certainly different for everyone ! I am doing a bit better now as I have increased the pregabalin and decreased the pramipexole..

Oddly enough, I need a weighted blanket on my legs !

[Meeemeeee]

I forgot to add I also wear a t shirt in bed not pyjamas so there is nothing touching my legs or anything round my waist or bottom half as this irritates my rls. I also have a really light quilt and don't tuck any bedding in on top of me as I have to be able to still move my legs .

[pennygates]

Sue has said everything you need to try. I didn't take iron supplements, as I didn't think they could help, but in the end I decided to give it a go. Sue gives out the information we need to know about, but it's up to us to try things for ourselves. SalemLake suggested I give the oral iron a go, iron bisglycinate, gentle on the stomach. I did and it has helped me from day one, although I had to increase the dose to get a response. It might not work for you, but worth a try unless you have already. Follow Sue's guidance on how to take it, very important that. It doesn't help my insomnia much, but I'm not bothered. It has stopped my leg symptoms most of the time, and that is wonderful.That's all I can offer, my own experience, and the good advice I have been given.

Good luck Oscarcat 63.

[Oscarcat63 in reply to pennygates]

Thank you, I am certainly taking Sue's advice on board 🙂

[Midnight-Blue]

There is “Doctor Hunting” and”Being your own Advocate”. You are the ONLY one who .knows how you feel. RSL is a REAL disorder that many physicians do not know how how

to treat or are not knowledgeable about it.

You need to do your own research, for starters - there is a wealth of information out there. Keep tract of all the medication you have taken for RLS, how the helped (o didn’t, side effects?

And, when you see your doctor(s), use this info - state your case. Have a friend go with you (moral support) You can only do so much.

Your worse enemies, I’m afraid, is the political & medical culture within which you live. We have ours & you have yours.

[Oscarcat63 in reply to Midnight-Blue]

Yes, I know what you mean. I have been researching and I need reliable and peer reviewed information.

Doctor is not that bad as I said I didn't believe their was anything to help with my symptoms, but he said their was.

So he obviously knows rls is real.

I will see him in late July, so plenty of time to search for articles.

Thank you