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Goschi

Leg Pain

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After I made a surprisingly fast and thorough recovery during the last 6-8 weeks, there's just one symptome, that is left and still bothers me quite a lot, to be honest.

I am talking about leg pain, especially when I am sitting for a longer time than 1 hour. I can't describe the painful feeling properly, it's just "pain and discomfort". As soon as I stand up and walk around a few steps, it vanishes quite soon. Even when I simply stand up, it starts to improve significantly within a rather short time!

I can't remember whether this leg pain (while sitting) was as strong when I was in my full POTS flare - maybe I just didn't feel it that much due to the whole bunch of symptoms I always had.

Anyone has similar experiences? Any ideas what it actually may be...? (and of course, what might help! ;-))

Thanks and best wishes to all!!

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Hm, interesting aspect... I have a kind of very mild "restless feet (only)" symptom, but only when I am supine. I never thought about a connection to a (full) leg pain when sitting. Can there be such a connection...?

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You might want to get some of your mineral levels checked. I know that low levels of iron, magnesium, and zinc can make restless leg syndrome worse. Tyler had RBC blood test for these 3 minerals done this last week. Tyler had bad leg pain and was turning and tossing uncontrollable at night. When I increased iron and magnesium supplements, all these night time symptoms stopped but his legs still shake and tremor during the day time.

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Thanks, looneymom and Katybug!

I had my minerals checked recently, everything is perfectly within the range. And my "restless feet" only happen once in week for a couple of minutes - if at all.

My actual problem is the leg pain when sitting, that increases the longer I am sitting. I guess, it must have something to do with this particular posture, as it doesn't occur at any other body position.

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Bumping this thread once again -

Does really nobody here has the symptom of aching legs when sitting...? Is it so unusual for Pots...?

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I know of somebody (diagnosed with POTS) who's legs get numb while seated for a longer time (in an airplain for example). Other than this lady I wouldn't know of anyone.

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Hi Corina, thank you very much for your reply!

Despite the fact that I am actually improving at the Moment, I start to believe that this leg pain while sitting may be an important hint to the cause of my pots.

I only realised now that Pots patients seem to have this symptom very rarely - I always believed it was absolutely common and kind of "basic" for pots...

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Your leg pain sounds like it is blood pooling related because when you are in a seated posture, the calf muscles are not working to push blood back to the heart. However, when you are walking, these muscles will contract and consequently will reduce the amount of blood that is pooling in your lower extremities. Blood pooling can be quite painful because as too much blood enters the blood vessels, they begin to irritate the surrounding nerves. I would try wearing compression stockings when you are going to sit for a long period of time. Also, you could try to elevate your feet at least to waist height while sitting in order to reduce the amount of blood that gets trapped in your legs. Let me know how it goes!

Stefanie

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Hi Goschi, do you think it might be something like sciatica? (Pressure on a nerve in the leg from anatomical problem in lower spine or hip). I had a bout of that last year in my right leg and being seated made it a lot worse.

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xRobin, I thought about something like sciatica already. But the pain is absolutely the same in both legs, but I will ask my docs again for that.

(Already had MRI and CT of lower spine, everything came back normal...)

Thanks for your idea!!

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Stefanie, that's what I first thought - it must be blood pooling! But why does it go away when I simply stand up and keep standing motionless? The blood pooling must even be worse standing than sitting?

To my surprise, I feel no pain when standing and walking, but only when sitting. In addition, my legs still get some slight patchy skin when I stand for a longer time (from blood pooling I guess!?), but this never happens when I am walking or sitting. With the latter, only the pain comes...

Anyway, thanks a lot for your suggestion!!

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@Stefanie again: I have already tried compression stockings when sitting - they make the pain even worse! And lifting up my legs does nothing to the pain, already tried that too...

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Hm. I have leg pain from pooling and restless leg syndrome. I only have the pooling pain when I'm standing and walking on my 'bad' days, never when I'm sitting. My RLS happens at night and for me is more of a need to move my calf muscles. I'd liken it more to an itch/ache combination than a pain. Moving does help it, but it doesn't sound quite like what you're describing.

My legs fall asleep all the time when I'm sitting and they really, really hurt when they wake up. But I don't know if that sounds like what you're having either. I have to hobble or just stand in one place for at least a minute after standing up because the pain is so bad.

Sorry this isn't more helpful. The only thing I can think to try, and I don't know if you have a way to do this, but if you could replicate a TTT position - a 70 degree tilt, which keeps you upright without really engaging your leg muscles - you might be able to get a more definitive idea of if the pain is coming from the relaxation of your leg muscles.

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Hi Libby, thanks a lot for your many interesting thoughts!!

In fact, our symptoms are quite different, you are right. But what caught my attention is with which words you described the feeling in your legs: "more an itch/ache combination than a pain". That´s exactely how my legs feel! "Pain" is indeed not really the right word for it.

I have had POTS-positive 2 TTTs (Sept. 2013 and April 2014) and I really can´t remember whether I had this specific "itch/ache" in my legs then. My symptoms have changed so much during the last 2 years, and in fact I am improving so much at the moment (except the leg ache when sitting...) that I should better not complain about the remaining symptoms and be glad that I got so much of my normal life back!

I hope that you are not too bad right now - but however, stay optimistic!! Things can and WILL improve!

Best wishes, Goschi

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Bumping this thread up as I wanted to say I do have problems every evening and night with my legs . I always sit with my legs elevated at home to stop the pooling however they become unbearably uncomfortable,  I need to move them , often I have to get up, that's helps for that time but sitting down again starts it all off . This feeling surges through out my whole body on some nights .

bed time brings cramp,  pins and needles and a feeling of been uncomfortable , I have mentioned this to Drs but usually get the um  answer with no constructive explanation. 

I started magnesium some time ago but it's not helped yet so I was looking for suggestions and  ideas when I found this thread 

 

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Hi all...I am not TTT diagnosed with POTs, but I am diagnosed with dysautonomia. I recently vacationed with a a 4,000 mile round trip and this burning, aching, itching leg pain has been the result. I had them feeling better after a trip to my osteopath, but now today I sat in my office chair for about an hour and a quarter and the pain has come back in full force. It seems to be more on the right and into the right foot, but other times it can be in both calves. 

I wear waist high compression all the time when I am out of bed. I believe that this pain is due to the lack of blood exchange/flow. I actually wondering if the compression socks make it more difficult to circulate to the lower extremities when seated.

I am quite frustrated with this recent addition to my symptomology. 

Do any of you have any thoughts on whether the compression is making this worse when seated?

thanks, 

Kari

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