Symptoms suddenly taking a turn for the worse

[restlegs1]

Hello everyone. I am new to the forum, and have some questions to ask, but also want to share my RLS story, as well as some things that I have found helpful in living with RLS.

I have had RLS for over 40 years. At first it was fairly easily controlled with a good run or long walk, and later with magnesium. Then I chanced on the strategy of running up and down the stairs a few times. Of course stairs are not for people who have a risk of falls. Our stairs are a sort of U-shape, and I would be very cautious if I had straight-up-and-down stairs that are very steep. But stairs have worked very well for me.

Another thing I found useful was a gel for ‘heavy legs’ made in France (RAP Phyto gel fraicheur Jambes legeres - available in some UK pharmacies or on Amazon, though hard to get in Australia). I still use it occasionally but like most RLS remedies it seems to work for a while but then it doesn’t.

In 2021 I was referred to a neurologist, who ruled out peripheral neuropathy and gave me prescriptions for Pregabalin, Gabapentin, and Levadopa (I know), suggesting I try them out to see which one worked the best (this was immediately after COVID lockdowns when there were long waiting lists). My expectations were very high, and I stopped taking Pregabalin because of the side effects (brain fog and constipation) and because, even at 75 mg I was still having one or two episodes a night. After reading Sue’s and Joolsg’s extensive advice, I now realise my expectations were too high. I should have increased the dose, and waited for the side effects to subside.

I then tried Gabapentin, but that made my symptoms considerably worse. I gave up after 2 weeks, and coming off it was difficult and scary.

As for the prescription for Levadopa, I threw it away, after considering what the neurologist said its side effects were.

Since then I have soldiered on with the magnesium, stairs, RAP Phyto, and massage, and added an hour of walking every day to my regime. I also found the Mayo Clinic’s advice to consume no carbs with the evening meal to be very helpful.

In the last six weeks the RLS episodes have become more frequent (now almost every hour) and more severe. I need to run up and down in sets of 11 or 15 now, and this can happen up to 8 times a night (so up to 96 trips up and down the stairs, bleary eyed, and keeping a firm grip on the banisters). The thing about the stairs is that they are over and done with in a few minutes and I sink exhausted and panting for breath into bed again and fall asleep, till the creeping feeling wakes me up again and hour or so later. But a couple of nights ago they started to lose their effectiveness, and I fear that the time for prescription medication is upon me.

Recently, after reading up on how to manage RLS on this forum, I had my iron tested. My ferretin was 89 and my transferrin saturation was 39. It is almost 4 weeks since I started taking one 28mg tablet of iron bisglycinate every two days (and following Sue’s advice on when to take it etc). I was expecting to feel better by this stage, but I don’t.

It is also hard to identify what the triggers are: there are just so many variables. For instance, as well as the iron, I also gave up chocolate, and actually felt worse for it. Three weeks after giving it up, I ate some, and the next day felt so much better! Was it due to the chocolate, the iron, or just the trajectory of the disease? Also, the worsening of my symptoms over the last 6 weeks. Why? Something I ate? The disease trajectory? Change in the weather?

Having said that, I notice that I feel worse during summer and early autumn with our hot, humid summers, and better when it is cooler. But the recent winter and spring have been the hottest on record, and my symptoms have been worse than they have ever been. But the temperature is still comparatively cool, compared to a normal summer. So is the weather a trigger for me?

I take no other medications, but do take magnesium, Gingko and Brahmi (for improved cognition), cod liver oil, Metamucil (Psyllium husk) and Vitamin C.

I am due to see a sleep specialist with an interest in RLS in about 3 weeks. I suspect he will steer me towards trying Pregabalin again.

My questions are

1. When should I start to feel better from taking more iron? Is 4 weeks too optimistic?

2. What should you do once your iron levels reach the required amount? Continue taking the product, but, say, every 3 or 4 days instead of every 2 days? Keep getting blood checks (I hate blood checks as I have very small, difficult veins).

3. Can Ginko and brahmi trigger RLS? Or interact with Pregabalin? I take one table per day.

4. Can cod liver oil trigger RLS? Or interact with Pregabalin? I take one teaspoon a day.

5. Can psyllium husk trigger RLS? Or interact with Pregabalin?

6. Can anyone recommend a good RLS specialist, either a neurologist or sleep specialist, in Sydney?

Sorry to be so long winded, and thanks in advance for your advice.

[Hidden]

Professor Brendon Yee is reported to be excellent.

He's a respiratory and sleep physician and is based in Sydney.

[restlegs1 in reply to Hidden]

Many thanks, Amrob. I have seen his name attached to various scientific papers. I will try to see him if the guy I'm booked in to see is a dud.

[Hidden in reply to restlegs1]

Hi Restless, first off, are you taking the iron on an empty stomach about an hour before bed - away from the magnesium? You might also think about doubling the dose. Doing this relieves my RLS in one hour, for one night. Everyone on here, including Sue and Jools, should tell newbies about this nifty little trick.

Secondly, what other medications are you on? SSRIs, HRT, melatonin, and certain calcium channel blockers (the ones that cross the blood brain barrier) are the worst offenders in terms of RLS symptoms. In the long run these substances might actually up-regulate our lousy dopamine receptors and improve our RLS. Maybe?

Your exercising at night, and even afternoon, might be aggravating symptoms as well, for a somewhat complicated reason - once again having to do with iron, or rather, available serum iron, NOT ferritin. There’s very little, if any, relationship between ferritin and RLS, unless you’re talking about iron deficiency anemia, which is a trigger. See very bottom paragraph of my post.

We with RLS have low “brain” iron stores, not low ferritin, and we rely very heavily on that free-floating serum iron, which plummets at night - that’s why taking a highly bioavailable form of iron before bed helps so many people. Low ferritin might be an indicator of low serum iron as well, so I guess ferritin might have an indirect correlation to RLS. Very indirect.

A better thing to do at night are balancing poses. Ever wonder why RLS disappears when we stand up and walk around? That’s because our brains release dopamine in a nano-second when we stand in order to balance us and coordinate movement when we walk. The more imbalance our brain senses, the more dopamine is released, thus riding us of RLS when we stand or walk around. Sometimes I stand and lean if I get RLS while watching a movie. I can still somewhat feel the RLS while leaning. I guess my brain doesn’t sense much imbalance. It’s a spooky feeling to have RLS while standing, albeit leaning.

Here are some others for whom the bioavailable iron at night thing works:

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po... Long post but worth reading through

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po... In this post, Bkc says she treats iron like a painkiller. She’s right, iron is to RLS as aspirin is to headache. Bkc is in such a good position at this point that she wants to figure out a way to get rid of the RLS on a more permanent basis. She wants to treat the source, not just the symptoms.

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

Last, but not least, is a thank you from RKM7:

RKM7 profile 1 year ago

“You’re back!!! It’s great to read your post!! Thanks so much for your encouragement and advice! I remember noticing that I had good nights when I took the iron and then bad nights when I didn’t take it. You’re advice to take it every night made sense to me and It has made such a difference! I can only hope that others on this site will try this approach!!

I just completed 3months of berberine so as you have advised, I’ll take a month off. Yes, my cholesterol has come down too!! I’m thrilled!!

I also continue with fasting overnight and that helps! Whenever I eat later in the evening or have sugar in my diet the RLS acts up again. I would still be suffering every night if you hadn’t recommended these changes!

I plan on slowly reducing my Gabapentin dose over time. I’m hopeful that I will only need a lower dose or maybe none at all.”

The above 15 members probably represent less than half of those on here that have been helped by iron at night

FINALLY, in regards to not really relevant ferritin:

“Serum ferritin level is considered as a good biomarker of iron stores8. Although iron deficiency has been associated with RLS pathogenesis, low serum ferritin has only been reported in 10–20% of adults with RLS7. Moreover, recent large clinical and population-based studies did not confirm the association between RLS and serum ferritin levels9,10,11,12,13. One isolated study showed that low serum ferritin level is a potential biomarker for RLS augmentation14, one of the most severe complications of this syndrome. Augmentation is a treatment-induced paradoxical worsening of RLS symptoms caused by long-term high dose dopaminergic therapy, and remains the major challenge of RLS.” nature.com/articles/s41598-...

[restlegs1 in reply to Hidden]

Hi SalemLake, thanks for your response. In answer to your questions, 1) yes, though I haven't thought of doubling the dose. 2) I am on no medications other than the OTC items I mentioned. 3) With exercise, I have tried doing the walking in the morning, afternoon, and evening - No consistent results for any particular time of day.it doesn't seem to make a difference. If I don't walk, the RLS gets worse. And as for the stairs - it works.

I will investigate what you say about Balance, though. Thank you for your advice.

[Hidden in reply to restlegs1]

Yep, I would try doubling the dose. If you don’t get complete relief the first time you double it, I would go back down to one pill, or none at all. At 89 you have healthy ferritin. Raising it is unlikely to help.

See my back and forth with WideBody:

healthunlocked.com/rlsuk/po...

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

None of the things you are taking should make RLS worse.

Chocolate contains caffeine and some people find that coffee which obviously contains caffeine makes their RLS better,

Although the usual advice is to get your ferritin over 100 which helps 60% of people with RLS, some feel it should be 200 or even 300. Once you reach that point I would stop taking iron but have it checked every 6 months.

It can take up to 3 months for the iron to work and you should get retested then. 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.

If you decide to take iron every night take it at the same time so it is at least 24 hours apart since when you take iron, hepcidin is released which prevents you from absorbing more iron for 24 hours.

If you have been reading my posts you have probably seen my advice on how to take iron but in case you haven't here it is: take it 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. Since you take magnesium and if you take 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 tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night.

On the pregabalin I would try it again, keeping it at 75 mg for a month or more to see if the side effects go away or lessen to the point where you can stand them. As you've read the Mayo article you know the usual effective dose is 200 to 300 mg, so it is no surprise the 75 mg didn't help. If you get to a point where the side effects are OK, increase by 25 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours.

You have probably also seen this but in case you haven't: 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, eating late at night, estrogen including HRT, 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, 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, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse

[SueJohnson]

It occurred to me when you mentioned the Mayo article suggesting to consume no carbs with the evening meal that you were referring ton a different article than I thought you were. So check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and is the bible on 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 as yours obviously isn't or s/he would never have suggested Levodopa. a dopamine agonist, at Https://mayoclinicproceedings.org/a...

Also many people find their RLS worse during hot weather.

[restlegs1 in reply to SueJohnson]

Thanks very much for this, Sue. It's very helpful

[Hidden]

In answer to question number 3, I would think about stopping the brahmi or taking it in morning/early afternoon. It allegedly increases serotonin and tryptophan, both of which tend to antagonize release of dopamine. Here’s what brahmi aka bacopa monnieri does:

Bacopa Monnieri extract may be able to increase memory formation by the enzyme Tryptophan Hydroxylase (TPH2) and increasing the expression of the serotonin transporter (SERT).[28] Bacopa does appear to have some interactions with the serotonin system, and may have downstream effects on the cholinergic system through this.[29][30]

[restlegs1 in reply to Hidden]

That's a good idea. I was actually thinking about doing that earlier today. I will definitely give it a go. Thanks very much for that.

[Hidden in reply to restlegs1]

I guess no joy from doubling your iron?

[restlegs1 in reply to Hidden]

Haven't had a chance to try it yet! Will do tonight.

[Hidden in reply to restlegs1]

😑 Let me know how it goes…for better or for worse.

[restlegs1 in reply to Hidden]

Just to let you know, sadly I may be one of the 40% whose RLS symptoms are not affected by increased iron. I tried doubling the dose, but nothing happened. Sigh.

[Hidden in reply to restlegs1]

This is going to sound strange but your RLS sounds unusually severe. You’ve never been on DAs, you’re not on any drugs well known to worsen symptoms and no co-morbid illnesses. How about birth control or that ring? Anyways, what I would do at this point (and you’re not me), is stop the cod liver oil and stop the exercise for a few days. I wonder if you have a really raucous gut microbiome? Think about taking a probiotic like Kimchi and look up a substance called berberine. The berberine is a dopamine antagonist so only take during the day and the magnesium only during the day. Lastly, try opening up the iron capsules and pouring into water with a 1/4 teaspoon of ascorbic acid. Did the iron not even give you 3 to 4 hours of restful sleep? If the iron is doing zip in terms of immediate relief then go back to every other day.

[restlegs1 in reply to Hidden]

By the way of the Mayo Clinic Updated Algorithm I do have severe RLS. Is it unusually severe? Maybe that's what RLS looks like when one is 73 and had a misspent youth as a sort of hippie (though I never had any addictions, especially not opioids, and my hippie time only lasted about 3 years). Personally I blame the hippie years.

I do have some co-morbidities, though I do not take any medication for them. I have chronic sinusitis and bronchitis, bronchiectasis (very mild), and IBS (Irritable Bowel Disease, diagnosed when I was a teenager, but only roared back into life after abdominal surgery four years ago - when RLS symptoms also became more severe). I am sure you are aware that there is some discussion in the scientific literature about an association between RLS and inflammatory bowel disease (IBS, Cronhns disease, and ulcerative colitis). So this might be the link you were referring to (raucous gut biome). I follow a low fodmap diet, and eat Kim Chi daily. The IBS is pretty much under control now.

I will look into berberine, and dropping the cod liver oil, and dialing back the exercise (one by one so I know which one is making the difference, if any). And the thing with the iron.

And no, at the moment, I sleep for anywhere between half an hour and 2 hours between the stair sets. Three to 4 hours uninterrupted sleep would be a luxury! Luckily just recently I have been going straight back to sleep after a stair set.

Thanks for taking such an interest in my case, and thank you so much for your advice and support.

[Hidden in reply to restlegs1]

And where are you at now? Hmmm? 🫤

[restlegs1 in reply to Hidden]

Thanks for your response. I am still doing 70+ stair circuits per night, back on the cod liver oil, gingko plus Brahmi, and 1 iron table every second night. And still doing my original exercise routine (3/4 hour pilates, 1hour walk). Things got worse when I changed any one of the above. But on the bright side, I have recently had two nights where I was able to sleep for 5 hours in the early morning, oddly on the night when I didn't take the iron tablet. I am hoping this is a pattern, as it is one I can live with, as I feel almost normal and don't need an afternoon nap! The hope is that the iron tablets, after 6 weeks, are finally having some effect. If nothing else, I am getting a bit fitter these days.

[Hidden in reply to restlegs1]

You seem to be headed in the right direction. Keep going!

[Boldgirl45]

Hi restlegs1. You mentioned this:

"Having said that, I notice that I feel worse during summer and early autumn with our hot, humid summers, and better when it is cooler. But the recent winter and spring have been the hottest on record, and my symptoms have been worse than they have ever been. But the temperature is still comparatively cool, compared to a normal summer. So is the weather a trigger for me?"

I definitely think you should try an electrolytes supplement as perhaps it could be a mineral imbalance, exacerbated by a lot of sweating. I had vaguely read things referring to it, but then had an episode which really reinforced this for me.

I am very lucky in that I only have very mild RLS (atm) - I'm actually on this forum for my mum who suffers terribly. My feet are fairly restless most evenings but I just rub them together and it relieves it. I've had the odd episodes where it's been worse, but nothing to write home about. However, myself and my son one time had a horrible bout of sickness and diarrhea - to put the lovely phrase: it was coming out of both ends (sorry!). I was drinking water of course but that wouldn't have replaced the electrolytes. Before I went to bed I felt dehydrated - I live in Turkey so know that feeling fairly well. Well, that night my RLS was shocking - and likely just as you describe. I didn't have a moments peace. The next day I took an electrolyte supplement and the RLS was gone.

I am about to start taking a daily electrolyte supplement (interestingly my mum is now taking it and has perked up no end....she's too far along with dopamine agonists to see what it's going to do to her RLS augmentation, but I now feel she's a little stronger and can consider a slow wean off of that awful drug).

Just thought it was worth a mention.

Good luck!

[restlegs1 in reply to Boldgirl45]

Thanks for your suggestion - I have learned through bitter experience to keep myself pretty well hydrated, but I will try out the electrolytes when the weather really hots up here.

[Boldgirl45 in reply to restlegs1]

From what I understand something like 70% of us could be deficient in them and that drinking just water doesn’t help. Anyway hope it helps in some way !

[rescuema]

Get your ceruloplasmin level checked for deficiency in the enzyme activity needed for copper-iron metabolism - if you test in the teens, you want to get that near 30 mg/dL. Chocolate contains copper, sweating depletes copper, and drugs deplete copper. Be sure the CLO you're taking is raw cold-pressed, such as Rositas or NutraPro so that it contains unadulterated natural form retinol and D to help ceruloplasmin which in turn regulates iron. Improving bioavailable copper will most likely help your issue.

[restlegs1]

Thanks for this. I will look into it.