I’m exhausted! I twitch and full body movements every night until 3AM then wake up at 6. On top of the RLS, I have now developed an upper respiratory infection. I was prescribed cough syrup with phenegran and it made me have the worst ever attack. I have called the doctor and he gave me gabapentin and flexril to relax the muscles I’m clenching nightly. It’s not working! My doctor suggested I can take up to 3000mg of gabapentin. He said it may take up to five weeks to help. I am miserable. They refuse to prescribe opiates not even short term. I am at my wits end. I seriously feel like I’m losing my mind! I suffer from mental health issues already and take medications for it. No new prescription but I do take Wellbutrin, vyvase and abilify as well as Lack of sleep is taking a toll on me. I started with RLS in 2021 when I caught covid. It comes and goes lasting for a night or two. This time it’s lasting so long and I’m not sure it’s going to disappear anytime soon. I walk daily to tire myself out. Even that’s no help. I had blood work and things are normal. What’s longest RLS attack others have had? What or how long can this possibly go on???
Longest bout of RLS 13 days of no sleep - Restless Legs Syn...
Longest bout of RLS 13 days of no sleep
What "mental health" medications are you taking?
Many antidepressants can make RLS worse.
Are you keeping a diary of intakes?
That is the only way to check for triggers.
I take Wellbutrin, abilify and Vyvanse. I’ve been on them for many years. I think my upper respiratory infection is what has triggered this episode. I’m just so tired.
I hope you stopped the phenagan is a big no no for RLS. The welbutrin is ok seems to be the better of the antidepressants. Unfortunately gabapentin does take a while to work. As Madlegs has asked what mental health meds are you taking. Is there any other doctor in your surgery that you can see who might prescribe an opiate ?
As you've found, promethazine (Phenergan) makes RLS worse for many. Bupropion (Wellbutrin) and cyclobenzaprine (Flexeril) are OK.
Both lisdexamfetamine (Vyvanse) and aripiprazole (Abilify) make RLS worse for some - although there have been rare reports that aripiprazole can help in some cases. Perhaps someone on here can give further advice.
How much gabapentin are you taking at present? "Most RLS patients require 1200 to 1800 mg of gabapentin daily, but doses up to 3600 mg daily can be used." Mayo algorithm.
Just an aside, but I want to thank you for attaching brand names to the medical names - it helps me learn what we're talking about.
Thanks. US forum members tend to be more familiar with brand names, UK members with generic names: I try to give both, but there are also often other brand names as well - but one has to draw the line somewhere!
What medicines are you taking? Abilify can either help or make RLS worse. Your upper respiratory infection causes inflamation which makes RLS worse. Avoid any cough or cold medicines that say night time or contain diphenhydramine, Chlorpheniramine Maleate, or pseudoephedrine.
Gabapentin takes 3 weeks to be fully effective. 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. 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 as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason . 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 at Https://mayoclinicproceedings.org/a...
You do need an opioid temporarily to get you through this. Copy the section of the Mayo Algorithm that discusses opioid and show it to your doctor. Ask for buprenorphine and emphasize it is just temporary until your upper respiration infection is over.
Thank you. I am growing very frustrated without sleep. I can’t even think straight anymore. I appreciate your response.
The fear of opioids in the medical profession is, and has been, causing much unneeded pain in the patient community.
Amen to that DoDahMan!
I am SO pleased that you have commented on the fear of the medical profession to give us Opioid medication. I was on Dipipanone and Cyclizine for year's for severe pain from nerve damage to my stomach and then with the lung cancer but it was stopped abruptly and I went through 9 day's of horrendous withdrawal with nothing put in place! My RLS kicked in , badly, 5 month's ago when I had an allergic reaction to antibiotics for Campylobacter but my Dr.s would not prescribe Buprenorphine despite my passing on advice and begging them to refer to the Mayo Clinic. Thank goodness the Specialist Nurse at our Pain Clinic asked them to give me the patches. I haven't tried them yet but will put one on tomorrow. I have Fentanyl patches which help a bit with pain so that patch finishes tomorrow. You are SO right about their fear of Opioid's causing much unneeded pain for patient's because I and I know many other's, have been and are still in hell so, thank you again.
Can you get kratom or cannabis temporarily to help if your doctor won't give you an opioid?
On the gabapentin I wouldn't increase it to anywhere near 3600 mg and since it won't help much for 3 weeks anyway by which you will probably be over your respiratory infection I wouldn't increase it to more than 900 mg until then. If it still does not control your RLS then you can start increasing it by 100 mg every couple of days until you find the dose that works for you.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. 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. 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.
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.
Many medicines and 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 and if so may be able to give you a safe substitute.
For those of us with severe RLS, it happens every single evening and night, with no respite. That's why we are on medication.Where are you? You need to see an RLS expert who will monitor your disease and prescribe the right meds for you. There are many good doctors in the USA.
As others have said, cough meds with phenergen will trigger RLS, as will sedating anti histamines and all anti depressants. Wellbutrin is safe.
It's crazy isn't it that sedating antihistamines trigger RLS, and non-sedating don't. You'd imagine it to be the other way around as they should help you sleep. I take antihistamines regularly and they don't affect my RLS, but having to take night nurse and also actifed over the last few months, I've realised that they always kick off a round of RLS, so it's the antihistamines in them doing it. The things that are meant to help you sleep are in fact keeping you awake.. the irony!
Just to add: 2+ years ago I had months of bad RLS before I suspected that prescribed atorvastatin was triggering it, had that confirmed here as being likely, eventually got my consultant and GP to change my prescription. Now, owing to the other changes you can see in my Profile, I only have very occasional symptoms after I've binged on the wrong food and drink. It will get better if you follow advice from the experienced people on here!
hi Chris is it likely a statin can cause RLS .. i had a most horrific night last nite not because of statin u understand i did eat 2 fun sized mars bars [gluten ] but my doc has put up my thyroid tablet dose because of fatigue she also gave me a script for Carbamazepine which i have left with the chemist
Statins have side effects, including making RLS worse for some but by no means all, but they are also the quickest way to tackle high cholesterol. There are alternatives - other drugs and diet changes such as going vegan - but the vast majority of doctors will tell you that statins are essential after e.g. a TIA and/or if cholesterol is high.
Just refusing to take a statin or any other prescribed medication is not a wise move: this MUST be discussed with a doctor.
As most doctors know nothing about RLS, they (i) probably won't think RLS is serious and (ii) will tell you that RLS is not a side effect with statins.
Ezetimibe *may* be a better prescription than a statin for some people, and I have certainly found it so - I had terrible problems (bad RLS, pains in my joints, extreme tiredness) on statins (firstly atorvastatin and then -less bad but still problematic - rosuvastatin) after my own TIA and this was the only alternative that my doctors would prescribe.
Ezetimibe inhibits the intestinal absorption of cholesterol, is recommended in the UK if a statin is “inappropriate or not tolerated”. It generally works more slowly than a statin, so may not be suitable for those with very high LDL.
All medications have side effects, and there have been some reports that ezetimibe also exacerbates RLS - but not for me. It did cause me some bowel issues, but then I had some bowel damage after radiotherapy.
Other alternatives to statins include bempedoic acid which works by reducing the production of cholesterol in the liver.
Nustendi (Nexlizet in the US) combines ezetimibe with bempedoic acid. This may be a good alternative for people who cannot tolerate statins.
Another possibility with no reported adverse RLS reports is fenofibrate (Lipantil,Supralip; Triglide in the US).
i thank you so much i only take 5 mg of rosuvastatin i dont have bad cholesterol. i had radio therapy once--- i also had rhysotomy on my spine didnt work have terrible back pain.. doc gave me the script for carbamazepine for the pain of trygeminal neuralgia ..im a walking disaster forgive my spelling my memory is not so good haha i used to be top in the school. thank you again Merry Christmas xx
There have been some studies and reports that carbamazepine (Tegretol, Curatil) helps relieve RLS/PLMD symptoms, while others say it makes no difference (to RLS).
Gabapentin/pregabalin is generally much more effective in controlling RLS.
How long were you on lipitor before it effected your RLS?
Atorvastatin (Lipitor) triggered my RLS very quickly - along with giving me joint and muscle pains and making me very tired - but as I was also having hormone therapy for prostate cancer at the time it took me some time to realise that it was the statin. When I came off the statin I started to feel better within a few days.But others take statins without apparent serious side effects (or they just blame another condition or medication for why they feel so bad)
Since viyvance is a stimulant, be sure to take it in the morning so it doesn't contribute to keeping you awake at night.
dear Bulldogmum Hi you poor dear im with you here 2 42am and i am so tired my legs are clenching ,my body and arms are kicking out by their selves i have tried to stay in bed but cant do that so restless started at 6.25 pm ive had cocodamol pramipexole and have just taken 1/2 a diazepam nothing has worked i cant help you medically just that some one understands i hope you get relief soon or find your triggers x
also your doctor might be more amenable to prescribing an opiate once your chest infection has cleared up. Opiates affect breathing and a doctor would normally avoid prescribing with chest infection.
hi Hectorsmum not me with a bad chest dear i have cocodamols but must take it sparingly my doc will only give me script for 20 pills every 2 /3 months didnt work last night tho or half diazepam went to bed at five am slept till 8am keep safe have a nice christmas xxx
Thank you. I was intending to reply to main post. Enjoy your Christmas too.
I know it sounds daft but I am getting relief from a mixture of raw garlic, honey and ginger mashed together. I teaspoon.
It's not crazy: garlic and ginger both have anti-inflammatory properties and inflammation can be a cause or contributory factor in RLS. Of course, it's best to work out what is causing the inflammation in the first place: some will put this down entirely to e.g. too much sugar and refined carbs in the diet, but there are many inflammatory diseases.
Given that bulldogmom's RLS symptoms started with Covid, I think the anti-inflammation angle is a good one to pursue. I had lyme disease for 5 years and that really messes with the body's response to inflammation. And they say that long Covid has many lyme characteristics. So google anti-inflammatory foods and maybe try curcumin. And try taking an iron supplement on an empty stomach right before bed. Surprisingly I've found a big difference in RLS symptoms with empty stomach vs. having an evening snack.
True
However one should take curcumin (tumeric) in the morning if one is taking iron since it interferes with the absorption of iron.
I am definitely going to try that! Saw this on earlier posts, thanks 👍
I feel for your predicament. Sounds like you are snowballing. Lack of any meaningful sleep will just keep the RLS going full tilt. My first thought was the abilify as it was a terrible fit for me but sounds like it hasn't been for you. Do you have anyone who can help advocate for you? No sleep on top of mental and physical health issues can leave you with little will to fight for appropriate treatment.
Im at my wits end. I have an appointment on the 28th of this month. I’m hoping for some relief. I don’t know what to do. Doctors are scared to prescribe an opioid. I’ve had two back surgeries, have chronic pain and was once on pain management. They removed me from it slowly and simply placed me on Lyrica. I have since developed RLS in 2021. It’s so stressful not sleeping. I already have issues add this now. I am a mess.
Sorry to hear of your struggles friend, this whole system/racket needs to be bulldozed to the ground and start over with what our Creator put on this planet to help us.
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