Sticky Blood-Hughes Syndrome Support
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Does anyone else suffer with restless legs?

Sometimes mine are so bad it stop me sleeping. My legs feel heavy, hot, twitchy and like they are about explode. I am not sure if this is due to APS or my other condition, Chronic Thromboembolic Pulmonary Hypertension, but wondered if anyone suffered from the same and if so if they had any solutions?

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Hi there this sounds uncomfortable... I have restless legs.. but mine have improved since taking magnesium, but due to only being on aspirin twice a day currently, it is easier for me to take supplements, my children or one of them currently takes magnesium due to migraines and restless legs, which has helped with this his also. However if anything other than aspirin was suggested I would have to maybe take this off the menu! Hope this calms down for you. I wonder if anything topical would work, there was some sort of gel for legs that you could get from the Body Shop, mainly for pregnant ladies... but not sure what was in it, wonder if it would help, it may have been peppermint based? ! I do however think that many with APS on here, have uncomfortable legs, especially after DVT's. Mary F x

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I do but find that just getting up and moving around if its during the day helps to stop the feelings.

My other half gets it badly and was prescribed Ropinirole which is a dopamine agonist. This is pretty standard TBH. There is a RLS forum on this HU site if you wanted to get information specifically just for that condition.

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My legs often feel uncomfortable at night but it is because they are cold not hot. The circulation in my feet and lower legs isn’t good and I need to wear socks in bed. When they get really cold I need to wear ‘long johns’ as well!

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Gee, regardless of what it is from, the pain is there and real. Have you tried a hot bath? For some reason, my great grandmother had a thing for epson salts. When anyone ached in our family they got thrown in the tub with "epson salts". When I was in my late teens I modeled shoes for three days. My feet, back and legs hurt so much I couldn't put it into words. My mom plopped me in a tub of epson salts and I disctinctly remember receiving relief. Balerinas do that for their legs after lengthy workouts. I have also found anything with a "menthol" like eucalyptus rubs help. Probably all of these things only distract, but if it works, and it gets you through from one minute to the next, I guess that is the point. Don't think I'm dismissing this kind of pain. I've had legs so bad the pain has brought me to tears and stopped me cold. But like most pain, its a matter of concentrated distraction to get through it. I did ask my rheumy what was the quickest way to stop it, and she said work it out, move your legs make yourself walk (but do it safely) rub the calf briskly so the circulation is stimulated throughout the cramping muscle.If you have a shower massage attachment in your tub, water massage the legs on the highest power. I sincerely wish I could tell you a magic word to rid that kind of cruel pain, but I haven't found it yet. Other words, I've found!!!!! Smiles and warm wishes

CanaryDiamond

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Thank you all for your compassion, comments and advice. I will try the suggestions but will ask my Specialists or GP especially with regards the magnesium or Ropinirole as I am already on a "cocktail" of drugs for both conditions. During the day I do find stretching helps although I am not able to exercise as much as I should like due to my Pulmonary Hypertension. At night I do find mindfulness and other types of meditation can be helpful but sometimes, like last night, it was all too much. Thank you again x x

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i have like a cramp feeling in my legs and then a burning sensation and sometime they twitch feels like a electric shock my doctor put me on quinine which you take at night it helps mainly with the mild cramps .

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i also suffer from cramping in my legs n they feel as if some1 has a hot poker to them, ive had mine checked out n they cant find anything wrong, no inflamation or anything. I got told to wear my surgical tights and take paracetamol, i find having a hot bath helps alittle. I was told by my consultant that ppl with APS get this n they dnt no why. mine starts just before a period and gets worse before it stops. I hope this helps a little.

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Yes, mine drive me mad! Only happens when I'm tired and I have to go to bed and sleep to get it to stop!

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Hi I too get restless legs but recently it has been all over!! It feels like my whole body is active....but my head isn't?!

It feels like the skin is crawling, my whole body including the torso jumping, like I've been on red bull+r something!!!

I thought it may have down to perhaps caffiene late tv or on computer, but even if I don't do these I can still get them! It gets me so bad I only get 2 hours sleep if I'm lucky!!

I hope you get an improvement with yours as there's nothing worse than mot getting sleep :(

All the best xx

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YES!!! Drives me crazy!!! I find putting a cooling rub like one you use for a sore muscle helps. I use one that has ARNICA in it.

debi in Fl w APS

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Thank you all for your replies. I have suffered with it on and off for the past 7 years. I will definitely discuss this with my GP/ consultant as given that others have the same problem I feel that it is a "real" problem not just something in my mind.

Thank you all for your support x x

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I get twitchy legs, not hot or sore, just jumpy and twitchy. Drive me up the wall!! I've found I need salt when this happens, and take sea salt, just dipping my finger into salt about 3 times, following each dip with several mouthfulls of water. I realise a lot of people are on a low salt diet and so this action wouldn't be suitable for everyone! If I can, I try to keep my daily intake of salt on food at a high enough level to prevent the attacks. Again, I know not everyone could do that safely. However, I find the "twitches" so horrible I thought I would share my solution, even if only a few people can use it to get relief !! Best wishes to all. Julie99

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Xtreme fizzing and cramping in my legs, especially the calves, is horrid and I seem to get it in the evening when I have my legs up and watching TV. I try altering position, sitting with my feet on the floor - anything to stop the feeling. In the end I have to put the programme on record and go and do something standing up and walking about. Its a real nuisance and painful. It helps knowing others are in the same boat!

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Xtreme fizzing and cramping in my legs, especially calves, is horrid. I usually get this in the evening when I have my feet up watching TV. I have tried everything but end up putting the programme on record and getting up to do something to distract me and walking about. This seems to help me.

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