Hi I've been suffering from rls badly for around 5 years and have been very low and depressed because of this condition, I mainly suffer very bad at night with the crawling feeling and the constant need to move my limbs, thus started in my legs but now has moved to my arms. I just pray for something to work I'm desperate for a good night's sleep I also dread going to bed and the run up to bed time. I've been prescribed pramipexole which worked for a while but then my rls went back to normal after that I was tried on ropinirole which was hell it made my symptoms 100 times worse. 2 days ago I started on pregabalin and I'm hoping this is the 1 which will finally work. I've had a few side effects but if it means I get some sleep then I will take it.
Rls living hell: Hi I've been suffering... - Restless Legs Syn...
Rls living hell
It will take a while-- weeks or months to get over the withdrawal from your time on Pramipexol and Rop .
Pregabalin takes a while to be effective.
Meanwhile, have you been checked for serum ferritin and for any triggers.
Meds such as antihistamines or statins or HRT or antidepressants can all set off RLS.
Also many foods such as high salt, msg and so on. Keeping a food diary is a good idea.
Check out any of Sue Johnson's replies to many posts here.
I'm not sure what serum ferritin is but will Google this. Thank you
Welcome to the forum. You will find lots of help, support and understanding here.
Ferritin is the best way to approximate the amount of iron which passes the blood ion barrier and gets into your brain. Low brain iron is one of the causes of 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.
Beginning dose is usually75 mg pregabalin. It will take 3 weeks before it is fully effective. It also isn't fully effective until you have been off ropinirole for several weeks and your symptoms have settled as Madlegs1 mentioned. After that increase it by 125 mg pregabalin every couple of days until you find the dose that works for you. Take it 1 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg 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 as yours wasn't or s/he would never have prescribed pramipexole or ropinirole. Https://mayoclinicproceedings.org/a...
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, 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.
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.
I'm cut taking paroxetine. Thank you so much for replying I appreciate your advice
I've been prescribed 1 in the morning and 1 in the evening but im wondering if the doctor would allow me to take both in the evening as that's when it's at its worst 🤔
That's an SSRI antidepressant and it makes RLS worse for many. The only safe antidepressants are trazodone and Wellbutrin but your doctor has prescribed it for RLS? It won't help RLS.
No its prescribed for depression
Oh - I was confused when you said the iron had helped cut your medicine by 1/3 so I thought the medicine was for your RLS. I would switch to trazodone or Wellbutrin (Zyban). Trazodone also helps with anxiety and insomnia and one article said it helped a person with RLS as well as a person on this forum said it helped them.
I meant to say currently not cut sorry my predictive text lol I'm very grateful for all the advice thank you so much
healthunlocked.com/rlsuk/po...
Please report that your RLS worsened on Pramipexole and Ropinirole via the Yellow Card Scheme. If you have trouble completing the form, fill out that it caused addiction and then further down, explain that Pramipexole and Ropinirole caused augmentation, a drug induced worsening of RLS.
Doctors will keep dishing out these drugs until they realise how dangerous they are. Read all the posts headed Pramipexole. You'll see you've joined a club no one wants to join.
Are you still taking Pramipexole or Ropinirole?
If so, you have to get off them. Your RLS will never settle while you're still taking them.
I'm off them now and been on pregabalin for 2 days
Hang in there. Pregabalin takes 3 to.4 weeks to work fully.Take your pills at night only. Start at 75mg and increase by 25mg a night up to 150mg. If that doesn't help, increase by 25 mg a night up to 250/300.
The MAX dose is 450mg, but for many of us, pregabalin doesn't work. If no improvement after 3 months, you can then see your GP to ask for a low dose, long half life opioid.
Raising serum ferritin above 100, preferably 200 will help.
Withdrawals from Ropinirole and Pramipexole will last weeks, sometimes months.
Terrible night last night got about 2 hours sleep I just hope this pregabalin starts working soon. I'm experiencing side effects dizziness and very dry mouth which is painful but would put up with that if this medication works
Once the SSRI is out of your system you should notice a huge difference in RLS symptoms. You might not need any RLS drugs. I can’t begin to tell you how many people come on here who didn’t even know they were predisposed to RLS, then they take an SSRI, then they develop terrible RLS, the connection is not made and they end up on DAs. As bad as the SSRIs make the symptoms of RLS they do NOT down-regulate our already lousy dopamine receptors the way the DAs do. As a matter of fact, I believe they provide a counterweight to the DAs such that they do less damage to the receptors.
In the meantime, please try 25 to 50mg of ferrous bisglycinate on an empty stomach about an hour before bed - with your doctor’s permission since you don’t know what your ferritin is. It may alleviate your RLS in one hour for one night as it does for many people on here. If it works it must be repeated that way every night. If it doesn’t, you may want to continue taking it anyways with your doctor’s permission. While the SSRI is in your system the iron and even the Pregalabin is like whistling in the wind. But like I said, once the SSRI is out of your system you should see a marked improvement. No HRT or melatonin or calcium channel blockers either please.
Thats very helpful thank you so much
Johns Hopkins sets out a withdrawal symptom timetable after stopping Dopamine agonists.The first 4 days you'll get little to no sleep and severe RLS.
Day 5-8 you'll get 1 or 2 hour's sleep over 24 hours.
Day 8-14 The RLS should settle and you'll get 4 hour's rest/sleep over 24 hours.
Everyone reacts differently and the pregabalin may start to cover symptoms before you've been on them for 3 weeks. Dizziness is a common side effect. Take pregabalin at night only and the side effects should settle within 6 to 8 weeks.
I just read that you're on an anti depressant. As all anti depressants trigger /worsen RLS, you should arrange a review with your GP.
Don't just stop anti depressants, as you need to do it very slowly with supervision. If you need something for depression, trazodone is the only safe option in the UK. Wellbutrin production stopped recently. When did your RLS start?
If you take anti depressants for anxiety, pregabalin will probably help as it is a sedating drug and is used as an anti anxiety med.
Ask for a full panel fasting blood test and a full med review at your next GP appointment. Refer GP to RLS UK website and use it as an opportunity to educate your GP.
They should know that Pramipexole and Ropinirole cause drug induced worsening. They also should know that low brain iron (and low serum ferritin) are linked to RLS. And they should definitely know that all anti depressants trigger or worsen RLS in susceptible patients.
Spend a few hours reading all posts headed Pramipexole or Ropinirole. Read the RLS UK website and the Mayo Algorithm which is on the website.
The more you learn, the better treatment you'll receive, because you can educate your GP. RLS isn't taught at any stage in UK medical training.
I've suffered for 20 years but the last 10 have been the worst I'm on 2 75mg tablets a day 1 in the morning and 1 at night, is it safe to take the 2 at night instead as this is when I suffer the most
Absolutely!GPs don't understand how RLS works.
Pregabalin and gabapentin should only be taken at night for RLS.
Take 150mg at night. I used to take 75mg at 9pm and 75mg at midnight. That way it covered evening and night symptoms better. (Although I'm now on Buprenorphine).
The dizziness will be far less as well because you will sleep off side effects.
There is a detailed medications list and chart on theRLS UK website. It shows average and maximum doses and when to take.
150mg is an average dose, but you may need a higher dose. Wait a month. If 150mg doesn't cover your RLS, then you should discuss getting off paroxetine slowly and switching to trazodone.
Raising serum ferritin should also be a priority. Raise it above 100, preferably 200.
Show your GP the medications section of the RLS UK website.
Thank you so much you have been extremely helpful
I don't see any reason to wait to slowly get off the 1 antidepressant while starting trazodone since paroxetine is making your RLS worse In fact many sites say that one possibility is to stop 1 antidepressant and start the other immediately but discuss this with your doctor.
Ok will do
Just don't stop it suddenly without starting the other one.
Spike to the doctor today and with everything I'm going through he said he's not reducing my paroxetine just now I also asked for the pregabalin to be increased and he said no to that as I've only been on it 1 week he said possibly next wk he will put it up another 25 mg and he also only gave me another wks worth of zopiclone so I'm going to struggle when it runs out 😪
I started taking vitamin B12 gummies from Nature Made.
I have noticed an improvement
Thank you
Sorry you are suffering so much. Hope you get some relief
Your story is almost exactly like mine including the time you've had RLS and the symptoms. I had ropinirole and pregabalin prescribed and both had side effects. My pregabalin ones were the same as yours plus it also upset my stomach. I've been on Tramadol for around 2 years (on and off) and it definitely works for RLS for me but as I've posted here I'm nervous about long term dependence. But I'm at the point that I'd rather be dependent on it than tolerate the symptoms and lack of sleep. Sue is the expert on medication but at least this could be another option if pregabalin doesn't work. Pregabalin also made my RLS symptoms worse so I stopped it for now but I didn't last a week taking it so it may have helped if I stuck it out.
Thank you I hope you find a relief soon and thank you so much for messaging me I am so glad I came on here everyone has been so lovely and its nice to know im not alone
Tramadol is the only thing that works for me. A God send. Suffered since I was a child. Got addicted to Norco. Got off with help of suboxone. Years later I stumbled upon tramadol after a 2 day bout in bed with no sleep (heavy leg and arm pain). It worked and within an hour; I felt completely normal.
My Dr prescribes it to me off label. I was taking 8 50 mg per day (max dose she prescribed) but took myself down to just 4-5 per day. I know what adduction feels like and if I miss a dose, I don’t feel sick like I did with missing a dose of norco.
Not saying I’m not addicted but just saying it’s not as severe. I can go all day without it but need to take 2 at night in order to sleep.
I typically take one in the morning and 2 mid day then 2 at night.
It does something to help neurologically that other drugs don’t do. I have no drowsiness, no feeling high and no other side effects.
My sister cannot take it because she gets nauseated. Bug if she eats food then dissolves it in water and drinks it; no side effects because her stomach doesn’t have to break it down.
Please ask your Dr about tramadol. My Dr knew my history and wrote me an RX immediately when i told her it worked for me (my first dose was from an old RX I had laying around that was prescribed for back injury but did not work for that pain so I stopped taking it)
I happened to read a forum on Tramadol and RLS. That’s how I discovered it.
I sincerely wish you get the relief you deserve. It’s been life-changing for me.
your story is most relevant to all of us on here unfortunately. The GPs in my case admittedly said that they don't know anything about RLS! This forum is a life saver and the amount of desperate stories makes me feel so sad. It shouldn't be like this. If I hadn't joined this forum I dread to think what state I would be in.
There are so many knowledgeable people on here if you are stuck in a vicious cycle its always worth a post on here these people are amazing. I am with a neurologist now but due to the strikes my appointment has been put back 😳 Its a constant struggle but keep on this forum it's a LIFESAVER good luck in your journey 🤞🤞
Thank you so much good luck to you too 😊 I hope you get your appointment soon 🤞
If you don't get relief from Pregabalin you must show your doctor the Mayo Clinic updated treatment algorithm for RLS. Go to Mayoclinic.org and enter "the updated treatment....".
This site is invaluable, I've followed their advice over the past 14 days and had my 1st nights sleep last night .....Ask for a breakdown on when to take your gabapentin and which iron to take and when....they encouraged me to stay on my pramiplexol at a reduced dose which I did for 2 weeks. Though the symptoms were horrific I'm.sure much better than coming off straight away .....
Had RLS for 15 years, pramipexole worked for quite a while then less effective. Went to a Sleep Doctor who suggested I begin reducing Pram Slowly from . 5mg with the help of Methadone! After months I'm down to . 125mgof Pram but NO RLS after 15 years. Still trying to get off Pram but adding the .5mg of Methadone has changed everything! See if your doctor will prescribe this Life Changing medicine.
All the Best,
David7
I've lived with it since birth 71 years ago and the only thing that has work at least for the last 20 years is ultram / generic is tramadol 50mg a few hours before bedtime (and if i don't have to drive, 12 hours before the bedtime dose, it works best). i have trided all the rls meds and treatments the so called medical people suggested and suffered greatly. it was only in my ankles and sometimes in my knees ( when job or laws made apc with codine impossible to get, what i used until i joined the us army, that was 3 yrs. without real sleep.) thats when the real hell came clonapin, ropinone, methadone, and a lot of other meds which some worked for a week or more before it got worse, some the negative side effects were withen hours ( such as methidone, it was like having my knee hit with a hammer) (ropinone caused caused explosive musle spasms) ( clonopine causedit to effect arms legs and lower back, and i would be jerking so bad it would lift me 6" above the bed). to end this i'll say be exstremely causous of anti depesants, musle relaxants, methedone, colesterol lowering drugs, bata blockers and just about everything the rls foundations recommend. i think what the tramadol does is block the signals to brain that your synaptic nerves are falsly sending to your brain, and if you canget some reem sleep you are doing great.
welcome to the forum Rangers52. I’m so sorry that you are suffering so. Hang in there. I’m sure that once the dopamine agonist is out of you system and the pregablin kicks in you will feel better. You will get outstanding advise and information here which you can take to your Dr.
Both RLS and depression can be caused by inflammation of the nerves. This inflammation is most commonly causrd by consuming refinrd carbohydrates (sugar and starch, like bread and cakes) and refined seed oils like canola or sunflower oil.
A number of people have recommended tramadol and it can indeed work well. Just know that it is an opioid and is the only opioid that can lead to augmentation although it won't be anywhere near as hard to come off it if needed.
Just wondering if cbd oil could help 🤔
Has anyone tried therapulse or hylands restful legs?
I used Hylands Restful legs when my RLS got worse before I saw a doctor . It worked for a few months but then didn't anymore. I doubt it will help you since your RLS is so bad. Therapulse helps many and is worth trying.
Thank ypu x
Just tried to go for a nap as I'm exhausted and lasted 5 minutes then had to get back up I don't know how much longer I can go on like this 😩
Hang in there. You will make it. Since you aren't getting any sleep you might ask your doctor for zopiclone to help you sleep.
I've got that just now but been told not to take it too regularly
If you need it, you need it. Later when you don't you can always wean off it.
Very true I'm just so suck of this I wish the pregabalin would kick in soon
yes CBD it can help.
Tramadol gives me augmentation. And now I can’t get off of it.
Sure you can - I have faith in you - just reduce very slowly over a period of time.
As many folks have mentioned, Iron Magnesium and Zinc in terms of getting those in the right level. There are all of the horrible forget who you are Medications too.
Something that has also helped me is like Compression socks and Pants (think tight spandex) I’m sure it is psychosomatic for me that it helps, so I think its also a psychosomatic issue since none of the meds helped me either. It still comes and goes, but a few things help me. The compression socks/pants and then not laying down (Bed/Couch with legs already stretched out) or having my quads have pressure from dangling off the edge of a chair. So I’m thinking it’s a Blood flow issue that causes mine.
Read the Book, the Divided Mind by Dr John Sarno regarding TMS. He mentions RLS is being related to TMS. Keep an open mind when reading it, for me it makes sense since there is no medical/physical issue that has been found to cause it.
I've been on paroxetine for 20 years and I'm starting to cut that down and hopefully stop eventually, im also taking menopace not sure if that's having a negative effect on my rls, I will try the ferrus before bedtime though and thank you
Menopace sounds ok- good actually-22 vitamins. Isn’t it interesting the way when we’re young (and still pre-disposed to RLS) we can get away with taking things like Benedryl, Tagamet, and SSRIs and not be too bothered by them. I took Tagamet all the time in my 20s, but only rarely got symptoms of RLS. I don’t think I even knew that sensation had a name back then. Fast forward 30 years and it’s a somewhat different story.
Personally, I think the SSRIs were quite a boon to your dopamine receptors though a horribly painful process. You see, a lot of the substances that cause symptoms do this because they’re dopamine ANTAGONISTS. That’s what we need, all of us, we need to antagonize our D3 receptors, but it has to be during the day and be short-acting. I’ve read that anaerobic exercise will up-regulate receptors, as well as intermittent fasting, and a substance called berberine. Right now there’s this whole sub-culture, and even some mainstream, who are looking for ways to up-regulate their dopamine receptors that have been down-regulated via drugs, porn, things of immense pleasure. They want to get back to a point where these things pack the same punch…not because they have RLS. I think we should be on the same hunt - looking for ways to up-regulate our receptors. Now mind you, once a dopamine antagonist is stopped, our receptors will start the slow crawl backwards to baseline. So it’s something (ie anaerobic exercise) that has to be done on and off for a lifetime. Sure beats the DAs don’t you think? I predict good things for your receptors once you’re off the Paxil and onto Trazodone or Wellbutrin. I love Trazodone.
Omg I feel for you. I have it the same. It’s debilitating. It will make you insane. I take so much medicine. I hope the pregabalin helped?
Not helping so far but it's only been a week
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