Behcet's Syndrome Society
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Leg problems

Hi all . For the past couple of days I have pain in the tops of my legs, as though I have run a marathon, now they are not only painful they feel weak as though they could give way when I walk. Has anybody else had this, as it is a new one for me . Thanks all. Maria x

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Yes I have a lot of limb pain. I have day time pain and night time pain. To simplify the nighttime pain is restless leg syndrome so you can look at that on Wikipedia as it's a great definition.

I have not constructed advice apart from use a crutch so you have something to lean on when your legs are particularly weak. Not sure if you are diagnosed but there are medications to deal with the night time restless leg syndrome so see your GP, thinking of you as it's a really tiring problem that makes me quite irritable when it keeps me awake xx

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I too have a lot of limb pain and also weakness and jerking....in fact I am up and 3am this morning because I couldn't tolerate being in bed with it. Get it day and night like Goodlife and night time becomes quite intolerable. Sometimes they feel hot to me but cold to touch and other times it's vice versa...very odd.

Definitely understand your feeling of having run a marathon and you should get it checked out really as this can be because of other things like vitamin deficiencies or side effects to medications. I was diagnosed with Chronic Fatigue Syndrome and myalgia is one of the main symptoms. Later diagnosed with Peripheral Neuropathy, myoclonus and periodic limb movement disorder.

I was tried on various muscle relaxant type drugs like clonazepam and temazepam, but these only made me feel much weaker and so gave up on them.

Have you tried soaking in Epsom Salts as this can be pretty effective when it's bad. I run a warm bath [not too hot or cold] and add a cup or 2 of Epsom salts while the water's running. Also sometimes add lavender if going to bed afterwards.

Then get in and soak until the water's turning cold and get out wrap your self in a towel and chill out for a while without drying it off.

Epsom salts have magnesium in them and this helps to relax muscles and help pain and lavender also relaxes muscles and helps sleep and pain.

Definitely not one of the easier symptoms to deal with :(

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hello Andrea!

I also have myoclnus. It used to bug me, concerned that it might be early days of epilepsy. The doctors said that it was not the case.

I feel it just a few seconds or minutes before falling asleep.

After being reassured, I sort of like it now, especially when my intention is only to rest. Having my head jerking about signals to me that I have reached a deep state of relaxation, enough to recharge me.

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Yes I know what you mean magician, about seeing it as a deep state of relaxation and this somehow allows me to get past it and fall asleep.

Unfortunately I also have the periodic limb movement disorder which actually happens while asleep and wakes me up. Also happens during the day and is similar to restless legs in feeling but happens to my head, face, stomach, shoulders, legs and feet..all jerking and contorting - When it is at it's worse I have very little sleep at all and also cannot rest in the day.

Looks like I am having a epileptic fit and extremely aggravating, but was picked up in a sleep study I had and diagnosed.

As you say there's a lot to the way that we view a symptom, which is why it is important to me to understand what it is. Once I understand what a symptom is I can understand it better and it becomes less alien.

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The involuntary movements that yu describe are just too disturbing and could be tiring too? I hope you find relief.

I sometimes have torticoli - head jerking ins awfully painful spasms. I was given a relaxant and it went away

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I had that for a while. My muscles were probed and prodded but no anomaly was found. It disappeared spontaneously

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Hi Maria! Sorry to hear!

Limb pain, weakness and jerking - Yes.

And as Andrea says, try Epsom salts. It can give some relief.

Pain in the hips and other limbs is not so easy:-( Two in the morning, can´t sleep because of the pain but too tired to do anything, NOT funny!

Hugs!

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I was up as well LillaMy...we should have had a chat together

Hope you managed to get back to sleep :)

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Hi Maria

I get his limb pain also- my medication (humira) was helping with this, but now not so effective.

I find that if i am very uncomfortable in the night the best thing is to get up and make a cup of tea, the movement around the house helps. Some of my pain is is joint stiffness - the inflamation in the joints makes the fluid in your joints thicken up - movement then helps to make it more liquid again. Not a very medical description, but something like this!! For a while this spring I could not straighten my arm but with exercise I managed to get it straight again. I also get generalised pain, especially in my legs.

I will try the epsom salts, Andrea. i have an enamel bath - is it OK to use do you think?

Kind regards,

Sian

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Yes Sian....shouldn't be a problem as I have used them for years and in the old fashioned baths which are enamal...it's an old remedy really but some of the old one's are the best...I say.

Hope it helps...athletes use it a lot after training and competing to help relax their muscles down and soothe the pain. It also helps to draw out excess lactic acid in the muscles which causes the muscles to go rigid and painful.

:)

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Hi Maria

I get his limb pain also- my medication (humira) was helping with this, but now not so effective.

I find that if i am very uncomfortable in the night the best thing is to get up and make a cup of tea, the movement around the house helps. Some of my pain is is joint stiffness - the inflamation in the joints makes the fluid in your joints thicken up - movement then helps to make it more liquid again. Not a very medical description, but something like this!! For a while this spring I could not straighten my arm but with exercise I managed to get it straight again. I also get generalised pain, especially in my legs.

I will try the epsom salts, Andrea. i have an enamel bath - is it OK to use do you think?

Kind regards,

Sian

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Keep in mind that DVT's are a very real aspect of Behcets. The two I have had were in my legs. Both times my legs became extremely sore and weak. I wouldnt think this is what you have, but keep in mind and watch for unusual swelling. Maybe mention to the doc as well when/if you go.

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