I have been really struggling with restless legs really bad. I have always had an unpleasant crawling/tickling sensation in my legs.
I am on Mirtazapine and it has made my restless legs worse. I now cannot sleep unless I have paracetamol every night and a hot water bottle on my legs to try to help.
I find that walking, being on my feet or even doing nothing at all can bring it on and it doesn’t just affect me at night. It affects me during the day to the point where I have to lay on the floor with my legs elevated against the wall.
Quite a few times I have had my legs give out from under me when I get up to go to the toilet or even just to get up to move around. If this makes any sense at all.
Trying to explain this unpleasant feeling in my legs is so difficult because it feels like multiple feelings at once.
Has anyone else ever experienced this or am I literally losing my marbles? Any advice would be great because I’m really struggling.
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NikNak98
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While some of what you report sounds like RLS - I can particularly relate to lying on the floor with legs up the wall, but in the evenings not during the day - but some is atypical e.g. it's generally relieved by walking, not triggered by it:
"When you try to relax in the evening or sleep at night, do you ever have unpleasant, restless feelings in your legs that can be relieved by walking or movement?“. This question has 100% sensitivity and 96.8% specificity for the diagnosis of RLS.
The following more detailed criteria is taken from
'The International Restless Legs Syndrome Study Group (IRLSSG) has proposed a set of RLS diagnostic criteria - the fifth of these criteria was recently added. Diagnosis of Restless Legs Syndrome can be made if all of the five criteria are met:
1. A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs: Any kind of sensation may be a manifestation of RLS and a wide variety of descriptions have been used ranging from "painful" to "burning" - some people say it feels like they have insects inside their legs or arms. Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.
2. The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting.
3. The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.
4. The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night.
5. Symptoms are not solely accounted for by another condition such as leg cramps, positional discomfort, leg swelling or arthritis.'
Mirtazapine is of course an antidepressant, and most antidepressants do worsen RLS and other neurological disorders - including mirtazapine.
There are two antidepressants which are commonly regarded as safe or mostly safe for RLS: bupropion (which is very difficult to get prescribed for depression in the UK) and trazodone.
Welcome to the forum. You will find lots of help, support and understanding here.
To save you looking for the full diagnosis criteria here it is: All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
The urge to move your legs is perhaps the most important criteria.
As Chris mentioned Mirtazapine makes RLS worse and he gave you the names of the 2 safe antidepressants.
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 including in a multivitamin 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) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 up-to-date on it at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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, C, 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.
There is a way to test if it is RLS. Ask your doctor for a prescription for 3 days supply of pramipexole .125 (.08) mg or .25 mg of ropinirole. If taking this stops your symptoms then you have RLS. If not then you don't. However and this is important. DO NOT CONTINUE TO TAKE EITHER OF THESE. If they work you will be strongly tempted and doctors who are not up to date on RLS which is most of them will try to have you take them because they used to be the first line treatment, but up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation.
The sensations that you're feeling are probably due to chronic neuorinflammation brought on by your diet. The medications are intended to dampen down the signals, not address the cause of the signals in the first place. I've eliminated my RLS without using meds (with their inherent side effects) by concentrating on avoiding inflammatory foods. (for list just google 'foods that cause inflammation')
I think all of us with RLS can relate. As Sue said - do not take dopamine agonists. It works initially but it is torture down the road. Go to the Mayo Clinic RLS algorithm and learn everything you can prior to seeking medical help. Look for a doctor in your area that knows about RLS. Good luck.
Hi there, I too agree with Sue and OTC meds as innocent as you think they are can exacerbate RLS too.
I pretty sure my RLS started from all the RX meds I was on for my back issues years ago and coming off them along with nerve damage. I do believe this started my problems because I sure didn't have RLS prior.
And discovered OTC can increase RLS too. Some meds listed to help like Gabapentin I unfortunately have an intolerance to the side affects. I don't metabolize meds like most people.
I'll also mention something that may sound strange to some but at night when I am having the urge to move my darn legs and "ride my bike" like my hubby describes it I do notice my bladder needs emptying and so I use the bathroom and stretch my calves afterwards. It's not fool proof but as I age and my bladder ages this seems to alleviate symptoms that stretching my calves alone does not do. I feel like perhaps my bladder is settling on nerves that are impacting my legs.
For sure a percussion massage machine works wonders and it works if my hubby puts pressure up and down just on back of my calves before bed.
My PT gal recommended laying near a wall with feet up on wall and kinda walking your feet up and down the wall can help too. Just use your legs don't raise your butt of floor. It's not fool proof but can help.
So far remedies I ordered Sue listed for me don't work all time and are hit or miss and I've tried a lot. And when I learn something new on these forums I try them.
Ferritin is a big one. Iron infusions can help if you cannot supplement your iron stores with OTC supplements. You need to get full panel iron checked at the very least.
But not using artificial sweeteners as much helps. Avoid allergy meds like Benadryl with diphenhydramine. Anything with that sets my RLS off. There is a list RSL experts share (a printable card you can carry with you telling medical community what to avoid giving you because of your RLS). Interestingly enough they didn't list NyQuil as an OTC that can make RLS worse (at least for me) but they are spot on for what else is listed.
I'm really sorry you are going through this. But know we are all here for you. Keep us updated on your progress and good luck!
**I'm soon to have shoulder surgery and worry if I'll be prescribed anything that will make my RLS worse. Or find something else that didn't before but now does....ugh!
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