I developed strange heavy lower leg sensation in 10/23; always been very healthy active 54 year old female. This issue coincided with a lower back flare up after playing pickle ball. MRI revealed a small disc bulge at L4-5 but no one was sure if these symptoms were related. I also got brain MRI and EMG as I had so much anxiety that something was wrong with me but everything was negative! At this time PCP started me on mitrazapine for sleep and anxiety…… terrible sleeper and super stressed by not knowing what was happening to my body! It helped with sleep a lot. Decided on my own to see a Neurologist as well and during that appt I also mentioned that at night I feel restless, almost like there is a currrent running thru my legs. She replied “that sounds like RLS”. I didn’t think too much about it as I was more concerned with the heaviness in lower legs. Finally after few months decided this may be my new normal, tried not to think about it all the time and get back to working out etc. All that did help some but still had daytime heaviness at times and odd nighttime “current” sensation. Decided in Dec to go offf mitrazapine because gained 10 lbs and wanted to be off meds. Brings me to now….. definitely experiencing that odd leg “current” feeling more at night but also daytime when sitting still. Don’t have that need to kick etc but do feel like legs are restless and feel better if I stretch or use leg massagers. BTW Got iron tested in Oct and PCP said everything was normal, but my ferritin was 51. So here are my questions (1) anyone experience leg heaviness or weird daytime symptoms or is this likely a separate problem? (2) going to start iron bisglycinate. Got the gentle iron so I am assuming take 2 every other night with vit C as suggested by others? 3). I know now that mitrazapine can trigger RLS so I am sure that made it worse but took it for 2 1/2 months and stopped it 12/27. Sorry this is so long but had to get my full story out. Any advice is appreciated!
new to group: I developed strange heavy... - Restless Legs Syn...
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As you've read Mirtazapine (Remeron) helps sleep but triggers/exacerbates RLS for many. Buspirone (Buspar) and trazodone (Desyrel, Oleptro) are safer for RLS.
Yes, ferritin of 51 falls in the usual 'normal' range but RLS sufferers benefit from higher levels - over 100, preferably 200+. Were you given a transferrin saturation (TSAT) % as well? If your TSAT is under 45% oral iron supplementation will help but it's slow: depending on where you are (you haven't completed your profile fully) an iron infusion may be available to raise ferritin more quickly.
(Sorry, just realised the time - must dash out. Look for further replies from e.g. Joolsg , SueJohnson , Madlegs1 etc)
Is iron sat the same as TSAT? If so my iron sat was 29.4%
Yes, variously known as Transferrin Saturation, Transferrin Iron Saturation, Iron Saturation, Serum Transferrin Saturation, Serum Iron to TIBC Ratio.
While Jools is uncertain that your problem is actually RLS, on your numbers there's no harm in continuing to raise your ferritin - as outlined by Sue - and it may help, but note all the other points they've raised. They both know far more than I do about RLS and related issues having suffered more severe symptoms and had to take medications to tackle these: as you'll see in my profile, I mostly just have to avoid things!
Good luck
Back damage definitely triggers RLS.Have a look at the diagnostic criteria.
The URGE to move is the most important diagnosis tool. You have to get up and move.
Also, as RLS follows the dopamine cycle, it is worse in the evenings and at night.
However, I am still not convinced you have RLS. It sounds more like a 'trapped nerve'/ sciatica type issue.
Whatever you do, don't take dopamine agonists (Ropinirole, Pramipexole, Rotigitone) as they're no longer first line treatment.
Raising serum ferritin to improve brain iron stores will help most people with RLS, but I'm not convinced that's what you have. In your case, maybe time will heal the 'bulge' and relieve the pressure on the spinal cord nerves which seem to be causing your sensations.
Perhaps see a specialist chiropracter who can gently massage/manipulate?
Medical cannabis really helps back pain and sleep. If you take oil or gummies with THC at night, it would settle the pain/sensations and help with sleep.
I agree the heavy leg sensation may be related but indefinitely think I have a component of RLS …. I feel like there is a current running through my legs which feels better with stretching, moving, leg massagers and is always worse at night. Doesn’t wake me up so I fortunate but it does bother me when I get into bed at first. I have always been terrible sleeper… take trazadone and melatonin (which I have read can worsen RLS), but even with both of these I don’t sleep more than 6 hrs. What exactly do you take to sleep?
Melatonin worsens RLS.I have severe, refractory RLS and have been through ALL the treatment options. I was on dopamine agonists for over 10 years, suffered drug induced worsening and pregabalin and iron infusions didn't help. Oxycontin didn't work either.
I now have zero RLS on 0.4mg Buprenorphine. But that is usually reserved for severe, refractory RLS, when everything else has failed.
Welcome to the forum. You will find lots of help, support and understanding here.
As Chris mentioned, do fill out your profile indicating the country you live in and your gender as that will help us in giving you advice.
Yes your symptoms are those felt by other people with RLS.
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 at Https://mayoclinicproceedings.org/a...
You are on the right track with your ferritin. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. You've probably seen this since you mentioned part of it. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout.Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
When you have your next test, 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.
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, as you found out, 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.
Thanks Sue! I take spironolactone, trazadone for aleeep, was staking melatonin with that but reading now that is a “no no”, vitamin d3 K2, omega 3, vitamin b complex. Starting gentle iron bisglycinate 35 mg twice every other day
Unfortunately all diuretics can make RLS worse for many although 1 person on the forum said this one didn't.
Thanks again Sue…. And just to confirm I am taking the gentle iron 25 mg and I should be taking be (2) capsules every other night? Should they be taken together or can I take 1 in am and 1 at bed? Do I need to take vitamin C with it?
Yes take them together. In fact since your ferritin is low I would take 3 tablets and yes take them with vitamin C and some orange juice.
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.
I have had "heavy legs " in the past. I never found out the cause and they no longer bother me much. And I can definitely relate to the sensation of a current in my legs.
I have severe periodic limb movement disorder (diagnosed via a sleep study). I also have mild RLS.
Did the restlessness also start after the pickleball mishap?
Thank you everyone…. I have learned more from this group than all my Drs combined. I did send my Neuro Dr a message and she apologized for missing ferritin level and agreed I should start iron!!
The iron takes several months to raise one's ferritin so it is not going to mask any symptoms
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