So I recently had a sleep study done cause I can never get deep sleep, I'm always exhausted during the day and I could only sleep for two hours when I went for the study. Before all of this I told the sleep specialist that at night my legs could never get comfortable (never painful only sometimes in the morning) and they are always fidgeting to find a comfortable position. After I went back to the sleep specialist to review my sleep study he told me that I have RLS and prescribed me 25mg Pregabalin (he didn't check my iron blood levels which is why I'm questioning everything aswell just jumped to the prescription) and to up the dose until I find my sweet spot. I asked him whats the long term solution (as I wouldn't be comfortable taking Pregabalin after reading about its side affects) and he said there is none this is it, it was quite a brief consultation so that leads me to here. Apologies for the long post and thanks if you made it this far but my question is does this sound like RLS to you ? and do you think I should get a second opinion since I only slept 2 hours during the first sleep study?
After my sleep study I went and I got my blood from an online company just to check for myself if my iron blood levels were low and these are the results: (unfasted)
Ferritin: 143 ug/L
Transferrin Saturation:39%
Iron: 21.3 umol/L
Total Iron binding Capacity: 54umol/L
Is there a possibility that an Iron supplement could help ?
From what you say it's not easy for me to judge if you have RLS or not.
Strictly speaking RLS is experienced when awake. It is diagnosef according to it's symptoms. There is no test for it.
This means that you describe your symptoms and these are compared to the RLS diagnostic criteria. If your symptoms match ALL the criteria then you probably have RLS.
A sleep study can contribute to the RLS diagnosis, but isn't entirely conclusive, because, well the name says it, it's a sleep study.
However, there is a condition which strictly speaking is known as Periodic Limb Movement Disorder (PLMD).
There are two forms of this PLMS i.e. PLM when Sleeping and PLMA i.e. PLM when Awake.
PLMA is quite rare.
Between 80 and 90% of people with RLS also have PLMS.
PLMS occurs during slow wave sleep, which is the deepest kind of sleep and it can disturb the quality of sleep but doesn't necessarily eake you up.
It is characterised by typical movements of the legs every 20secs or so. A lot of people are unaware that they have PLMS it's usually whoever's (not) sleeping with them. They get kicked! A sleep study will fetect this.
RLS does not occur during slow wave sleep, it usually occurs before sleeping hence preventing the sufferer getting to sleep OR it can occur during shallower sleep and may make you wake up.
It sounds from the sleep study that you may have PMLS and also have RLS, but that depends on the diagnostic criteria. Hopefully the study showed you not have sleep apnoea as this can make RLS/PLMD worse.
It may be you've been told you have RLS as a) it's easier to explain and b) the causes and treatment are more or less the same.
Pregabalin is a relatively good choice for a first treatment of RLS/PLMS.
As you say the dose can be built up until it works. Be aware though that it can take 3 - 4 weeks for this to happen. A typical dose is 150mg, the official meximum.is 450mg.
It's not exactly true that pregabalin is the only solution. There are other solutions. The other first line solutions however have a high risk of major complications.
Second line solutions are available if and when the first line fails.
I'm afraid there is no ideal.long term solution, it's always a matter of weighing the benefit against the side effects.
The key result in your bloods is the ferritin, but this both good and not so good.
If your ferritin had been below 75 you may have benefited from an oral iron supplement. The aim of this would be to raise it to 100, at which 50% of RLS sufferers benefit.
That yours is already over 100, I'm afraid is not so good. You haven't benefited.
In which case you may benefit from raising it higher, at least 200 and possibly more.
However it's not really possible to take tablets to do this, you would need an IV iron infusion.
Perfect thanks. It’s a really useful comprehensive article which I will read before talking to GP.
• in reply to
Wow thank you for your well informative reply and your time I wasn't expecting that, and to think I've done a bit of research on it, looks like back to the drawing board, thanks.
I cured my bad sleep patterns and rls by adopting a low carb diet and cutting out seed oils. I haven't noticed that coffee to be problem within reason (2 or 3 mugs a day). I don't take any medications.
Thanks, I'll check out a low carb diet. I gave up coffee for a few weeks and went back on it and never noticed a difference so I'll have look into the diet.
I had taken Ropineral for a couple of years when I had to increase the dose. Increasing the dose only helped a couple of days. Then no amount of Ropineral helped. I tried Gabapintin and other prescriptions. Nothing helped. A relative told me to try CBD oil. I was certain it would be a waste of time and money. I had tried CBD oil in the past for pain, and it did not help at oil. Considering the prescription medicine specifically for RLS was no longer working, it seemed absurd to think some over-the-counter oil would help, but I agreed to take a 50mg capsule with .3%THC one night.I fell asleep with no RLS. I was so shocked I decided it was a one night fluke, but it continued to work.
I’ve reported this before. I order the best quality CBD oil from The Herb Shop in Marietta, GA. It is expensive. It costs over $100 for a one month supply, but to me it is worth it because I no longer suffer from RLS, and I’ve had no side effects from using CBD oil for over a year.
I need to make another comment about having CBD oil with .3%THC work well in preventing my RLS for over a year. Ironically, for me alcohol at night and the few tranquilizers I’ve had for brief incidents, cause me to have terrible RLS in spite of the CBD oil. I would have thought alcohol in the evening would help prevent RLS, but - for me - it made my RLS much worse. My long term solution for RLS has been taking 50mg of top quality CBD oil with .3% THC, but for it to work, I can’t drink alcohol at night. I once was given a tranquilizer for some small procedure in the day time, and I had terrible RLS because of it in the middle of the day!
Alcohol is well known to make RLS worse, so is sugar.
Tranquilizers, it just depends what you mean by this, there are several classes of medicine that could be or used to be referred to as "tranquilizers". The term is little used these days.
The benzodiazepines used to be called "minor" tranquilizers. Most of them have a sedative effect and a muscle relaxant effect. They are mainly used as a sleep aid. Some can help relieve insomnia with RLS. They do not aggravate RLS.
There is another class of medicines known as sedating antihistamines. Some of these used to be called "major" tranquilzers. Better known now as antipsychotics. These, and milder sedating antihistamines, such as found in over the counter sleeping aids and cough medicines can make RLS worse.
Benzodiazepines also used to be known as "anxiolytics" because they were used to treat anxiety. These days, more commonly anxiety is treated with antidepressantsm.. Most antidepressants make RLS worse.
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