What do you think?

[Selfhelps]

Hi all,

Firstly I would like to say that I haven't been diagnosed with RLS - however through my own investigations it has lead me to this website so I hope no one minds me asking a few questions as I'm starting to loose my mind.

I have been to the gp with my symptoms who has told me he thinks I have injured and damaged my calf muscles (I don't believe this) I have had bloods taken which I'm waiting on the results coming back and I have been referred to physio.

I have had on and off problems with my lower legs however this time it is persistent and absolutely exhausting which is why I have taken it further with contacting the gp.

My symptoms are only in the one leg at the moment below the knee/calf area. I would say I'm in more discomfort than pain, with crushing, tight and heavy sensations.

When I stop moving to rest then the muscle starts to twitch constantly!!! I can actually see the twitches on the skin. I don't however feel the uncontrollable urge to move my leg. My husband has told me while I sleep my leg has been jumping.

I am utterly exhausted! I'm starting to feel really anxious- possibly enhanced by lack of sleep.

I know you lot maybe aren't medical professionals but you are the ones living with the condition so I thought it would be a good community to ask for advice to whether or not anyone can relate to these symptoms or if I'm way off track! I had convinced myself I had a circulation issue of some kind however thats one the gp is certain is not the case.

Thanks 😊

[SueJohnson]

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. Which of these conditions do you meet? Your legs jumping in your sleep would be PLMD (Periodic Limb Movements in Sleep) and it is treated the same way as RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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. 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. 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 of gabapentin and 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 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them. 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 mayoclinicproceedings.org/a...

[Selfhelps in reply to SueJohnson]

Thank you Sue, this was a very insightful read and some good advice. I do not have condition 1 (I meet the rest) so possibly there is something else going on for me.

[SueJohnson]

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, estrogen, 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, 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, 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, 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.

[Munroist]

It doesn’t sound like RLS to me, as far as I can see you don’t have the urge to move and it’s not clear whether the symptoms start or get worse in the late evening. I have had most of the symptoms you describe but related to nerve issues after a lower back problem. However it doesn’t quite sound like normal nerve issues either with just the lower leg on one side and no other pain or apparent back issues. So … I can see why your GP might be thinking of muscle damage. However as you say we are not medical and there could easily be other causes. Probably not much help I’m afraid.

[Hidden]

There could be a couple of different things going on, or not.If you're not getting restorative sleep, then that is a real problem. In addition to the symptoms you describe (which don't sound familiar to me), you may also have a sleep issue eg. sleep apnea periodic limb movement disorder).

These are usually identified via a sleep study.

[DogBella]

I have all the symptoms but not at the same time. My discomfort started in my calf area and has still remains in this area. It is never above the knee. The pain/discomfort as you described wakes me at night. I've had my iron checked and have had an iron infusion. Currently my iron levels are in range. Recently I started with leg twitching. Dr. B thinks this might be unrelated and perhaps another problem. I never get uninterrupted sleep so I do feel for you.