Firstly, thanks to everyone contributing to this forum. This is the first time I’ve posted but I’ve been reading a lot and have found it really helpful to know I’m not the only one struggling with this.
I’ve had RLS all my life but I suffered an extreme burnout in early 2020 and since then it’s kind of stopped my life.
The RLS flared suddenly when I stopped work for a break. I’d been working insanely hard for about 15years at that point. Very very stressed. Sleeping very little. I now realise this was probably part of being bipolar (hypomania), and also a work addiction.
When I stopped work for a break, the RLS flared up terribly. It was constant though the night at that point - I’d sleep maybe 2 hrs in the late morning after a night of pacing and crying. And often id not sleep at all. It’s less bad now - after 4 years of trying so many different things. I sleep about 3-5 hrs a night, in little chunks, usually.
I’ve been too scared to try medication, reading so many horror stories online, so have focussed my efforts on non medication routes. Acupuncture, naturopathy, Ayurveda, psychedelics, Chinese medicine, homeopathy, trauma therapy, inflammation treatment, cold therapy, meditation, somatic bodywork… the list goes on and on. I’ve also majorly changed my lifestyle to be healthier, less stressful, more stable and grounded. Many of the things helped a bit (psychedelics the most - a few weeks of totally normal sleep with no RLS at all, then it gradually returned). I’ve definitely got much better over the years… relative to how I was at the start. Nothing has cured it though and I’m still unable to get back to full time work or life or stable mental health.
A couple of months ago I was diagnosed with bipolar 2. I’m now seeing a psychiatrist (for the BP) and he is firstly addressing the sleep issue (or trying to) as the combination of this and bipolar is dangerous. However, he knows nothing about RLS. So far he’s prescribed melatonin (made it so so so much worse - I guess from the impact on the dopamine system?) and hydroxyzine which also made it worse (which I told him it would, being an antihistamine, but he insisted it was a new type and worked for RLS). Waiting to eve what he comes up with next but I’ve not been inspired with too much confidence in him.
I’ve not really been able to return to work or a proper life since this began and I’m so desperate to get my life back. I feel more and more isolated as the years roll by.
I’m currently researching the dopamine theory (as dopamine issues relate to bipolar and to work-related burnout too) and inflammation, and doing all I can in my day to day life to improve these areas to see if it helps.
I’m worried I’ve missed something obvious along the way. I feel like I’ve tried so many things but maybe not thoroughly enough, and maybe missing key things along the way… it’s all been a bit scattergun, in a haze of exhaustion and bad mental health.
I also wondered if anyone else here has bipolar also? It’s often comorbid with RLS apparently.
Thank you for reading
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Cabinman
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Welcome to the forum. You will find lots of help, support and understanding here.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) 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. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 atHttps://mayoclinicproceedings.org/a...
And don't be afraid of gabapentin nor pregabalin. It has helped many on this forum including me. I am 83 and take 1500 mg. of gabapentin and have also taken pregabalin when it it is inconvenient to take it in several doses. I have slight dizziness when I wake up but drink coffee immediately and it goes away. And if you do find it has side effects you can't stand you can always come off it by reducing it very slowly and by doing that you won't have any side effects.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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 like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
I know you have already tried some of these.
Many medicines and OTC supplements can make RLS worse including Amitriptyline which you list on your profile. and many medicines for bipolar disorder 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender
Dear Sue, thank you so much for such a thorough reply. I appreciate it more than I can say.
I went to the doctor and asked for full panel iron tests, specifying: serum iron, percent iron saturation, total iron binding capacity, serum ferritin, plus B1, B3, B6, B12, D3, K2, potassium and copper (based on your response), and inflammation markers.
He said the relevent ones are percent iron saturation + serum ferritin so only included them in the prescription, plus B9+12 (the others arent covered in the health system here) and inflammation markers.
I will follow your instructions prior to the blood test (though he didnt mention fasting) and can get them done prior to 9am as advised.
Ive now been prescribed diazapam as a short term soltion as the situation with no sleep and bipolar was getting dangerous. This is working, Im averaging 6.5hrs a night this month so far, but obviously not a long term fix, and the efficacy is already waning. I talked to the Dr about pregabalin if theres no obvious solution from the blood tests and he said this is an option.
Re bipolar, at the moment Im on week 3 of Lamontrigine (50mgs), working up to the theraputic dose over the next 4 weeks (200mgs). The psychiatrist keeps trying to get me to add 25 mgs of Hydroxyine in to help with sleep but, as I tried this previously (75mgs) and it made the RLS substantially worse, Ive been refusing so far.
I live in France and I was assigned female at birth but identify as male so am also on testosterone HRT, which I think, annecdotally, also exacerbates RLS.
Im vegan, gluten free, no coffee, no sugar, no carbs, anti inflammatory/ alkali diet, avoiding stress as much as possible, moderate exercise daily, sleep schedule, meditation, cold water therapy (cold baths / wild swimming), your hot/cold shower suggestion, and hot baths in the evening. Im also taking tumeric suppliments to support anti-inflammatory process, plus ashwaganda and shitavari (precribed by an ayurvedic Dr I saw about RLS).
Thank you again for your help and guidance. I deeply appreciate it.
I just answered your other post before I saw this. 15 is very low. You should ask for an iron infusion. And the numbers are the same. You want it above 100.
I assume Saturation coefficient is the same thing as transferrin saturation although I am not positive of this and that is very low too. In fact you might have anemia. You definitely need an iron infusion.
Thank you. The Dr is saying all the levels are fine and I had to argue to get another appointment. I will try to explain to him that the levels you mention are too low and see if I can get an infusion. He knows nothing about RLS and my French isnt fluent yet so its tricky. Ive arranged to change doctors but thats not for another month. Fingers crossed I can convince him and get the infusion. Thank you so much for the information.
Yes ferritin. 15 is normal for others, but what is normal for others is not normal for those of us with RLS. The Mayo Updated Algorithm for RLS at gives this at Https://mayoclinicproceedings.org/a... and normally I would say to print out the section on iron and show it to your doctor but of course it is in english.
OK thank you! Getting a translation of the relevant section now. Thanks Sue - really apprecaite all your help. It makes such a difference having access to the info needed to move toward a solution. Have a great day.
I'm very sorry to hear of the issues that have plagued you, but have you had an iron test? You must have seen this referenced in your reading, and it's possible that - if your iron is low - simply improving iron levels could resolve your RLS symptoms.
You should have a full panel iron test to include serum ferritin and transferrin saturation (TSAT) numbers. It should take place in the morning, after fasting overnight (nothing other than water), having not taken iron supplements or multivitamins containing iron for 48 hours before.
You must then insist on getting the actual numbers: there's a very wide range of ferritin numbers that a doctor will call 'normal' and most don't know that RLS sufferers need higher levels. We benefit from ferritin levels over 100, preferably 200 or higher.
I'll keep this short at the moment - as you may have already tackled this - but there's plenty of further advice available here on iron supplementation depending on the results you got/get.
Hi Chris, thank you so much for this - really appreciated.
Pls see the start of my response to Sue above re the iron test prescription I managed to get. Im really hoping this is correct. I have stopped the mutivit suppliment I was taking based on your suggestion and will get the tests on monday. The provide a full print out to the patient here (France) so Ill have all the numbers.
The serum ferritin and percentage saturation numbers are the most important figures for RLS, and getting a print out avoids the risk of the doctor dismissing the figures. (Here in the UK we can register a couple of apps with the surgery and get to see all the figures plus appointments etc etc online. That's assuming we can get appointments for tests etc!)
Are you receiving medications for bipolar disorder? You may be aware from your reading that many antidepressants, lithium, antipsychotics and other medications can trigger/exacerbate RLS...
Yes - Re bipolar, Im on week 3 of Lamontrigine (50mgs), working up to the theraputic dose over the next 4 wks (200mgs). So far this doesnt seem to be making it worse.
I know to avoid Lithium.
The psychiatrist keeps trying to get me to add 25 mgs of Hydroxyine in to help with sleep but, as I tried this previously (75mgs) and it made the RLS substantially worse, Ive been refusing so far.
Im also now on Diazepam (5mg a night) as an emergency solve to the sleep issue as it was effecting the bipolar so badly.
my husband who has had both lifelong RLS and intermittent bipolar disease, is doing well at this time. Although I must say that while he was on opiods like oxycodone and tramadol, he went through sevrral terrible bipolar episodes!! So we have since learned that opiates can trigger bipolar In people that have a predisposition to it.
Currently he’s using very very low dose buprenorprine once a days night. It’s 1/4 film..
He’s been using since last June and has had no bipolar issues. It’s the most normal I’ve seen him in years!! Please be careful using certain meds fi Rls as they can really made bipolar worse.
Thank you! thats really helpful, and Im really happy to hear he is doing well. Its a terrible combination, and apparently often co-morbid. I didnt know re opiates and bipolar - thats realy useful, thank you!
I’m so sorry to hear what an awful time you’re having. RLS is hellish enough on its own without mental health issues in the mix.
I am using Mind and Body techniques for my RLS. Have a look at my bio if you’re interested and message me. My RLS is currently mild- but enough to affect sleep. I have now reduced my Gabapentin from 600mg to 300mg. The RLS has so far stayed the same during this process, so I am going to reduce to 200mg.
T he reason that RLS is often co morbid with bipolar problems is that the thing that can cause RLS can also cause mental problems, notably systemic inflammation caused by diet. youtu.be/23_fnung5To?si=gsu...
Thanks for this. Yes Id wondered about that - inflammation and also dopamine issues are possible causes of both, from what Ive read. Im trying to reduce inflammation as much as possible. I also went through a serious burnout 4 years ago so chronic inflammation is a possible cause for me (I also have a chronic pain condition which I believe is inflammation related) Thanks so much for the link - I'll watch. Thank you!
Great advice from Sue above - it could be a simple solution - iron deficiency. It was for me. Consider also that iron absorption can be compromised with gut issues (specificially SIBO - Small Intestinal Bacterial Overgrowth).
2. Also, I've read that lithium orotate can help with RLS and possibly also the depression that accompanies BD. This is lithium as a supplement, as distinct from the heavy duty lithium used for various mental health conditions. I don't know much about it but Chris Columbus' reference to lithium made me recall it having been mentioned on this site. It might be worth reading up on.
Thank you! Ive actually just been prescribed Lamotrigine: on week 3 (50mgs), working up to the theraputic dose over the next 4 weeks (200mgs). Itd be incredible if it addressed both issues!
Thank you for the info on lithium orotate too - Ill have a look,
Wow thank you everyone for all the advice, information and encouragement - I will take some time to go through all the leads and possibilities here but overall I just wanted to take a moment to thank you all for your input. I feel very grateful to have found this forum and very grateful for all the guidance given. Thank you!
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