I have EM in my feet but am now starting to get achy legs. My doctor didn’t really know if it was connected to EM. Does anyone else have this? It feels like I ran a marathon and wakes me up at night.
Hi Tired,
My mother often complains (horrible word but can't think of another one at the moment) about her aching legs and her burning feet. She has no redness signs of EM. They can get swollen, mostly around her ankles, but don't change colour. Her legs also ache. Indeed, she has told me other the years that she feels like she's just dragging her legs around and each time she puts one foot to the ground it pains her. Her way to rest is to go to bed and put her feet up. She spends about 12 hours in bed at night -- not sleeping that long. Just 'resting' her legs as she calls it. With age, she's nearly 80, her leg problems have actually gotten a little better and she's out and about more doing things (so aging does not neccesarily make everything worse it seems). She has had very bad varicose veins all her life. And had three operations on them whilst in her 20s and 30s. I also have some varicose veins (I had a bad one 'stipped' many years ago). My legs don't ache though -- although I do get a sharp painful pain in my left leg - it's a mechanical thing caused by my back.
I'm just wondering if you have varicose veins. I do know that when 'varicosed' the veins can cause pain because they are no longer working properly -- not effectively. Although the blood is 'diverting' to other veins. Varicose veins can cause aching and 'itchiness' -- Iv'e experienced both but it's not overwhelming for me. I can live with it. I guess mine aren't that bad. If you have varicose veins perhaps they are the cause of achiness.
Also, Restless Leg Sydnrome came to mind but I'm pretty sure you would have done research into that. I get it occasionally but not so bad I can't live with it. But if it was happening every night that would be a different story.
blue
Hi tired.
I find that I have so many pains besides just the burning from achy legs where I feel as if I need to rub or massage them to shooting shard pain when standing or walking too long in my feet. I can't say for sure if this is part of EM or someother condition I may have. I also go through periods where the back of my ankles will feel tight and hurt to no end upon walking after any period of rest which I must do all of the time! This has come and gone several times since my EM usually lasting a few months at a time. I would be curious too if others have similar not known to be EM symptoms but I suppose could be. I wish I could be of more help.
Take care,
Alina
I get aching legs,too. This is a big problem when walking. It is not in the feet like my other em issues. My doctor said it is a common complaint of those with em. She hypothesizes that it is because so much of the blood is heading to the feet that the large muscles are not getting it. Therefore, there is cell death in the deep tissues. Good luck!
"Cell death in deep tissues"--sounds awful, but it makes sense. My calves ache, and get bad cramps. I've associated that with my peripheral neuropathy (nerve death could also cause cell death?), but it's hard to disentangle these maladies. People on the PN website I belong to recommend magnesium supplements--"chelated" magnesium, not magnesium oxide--and that helps me a lot.
That is the other thing that happens LynnV is the bad cramping! I get them in my hands and feet but these definitely are trigered by warmth and activity so I am confident this is part of EM. My doctor even ran a blood test checking my potassium levels and she said they were great. does this make sense.......when I get my cramps they are more like pre cramp cramps and they always stay that way. They never turn to full on spasaming cramps thank god but are still extremely painful. I liken it the sensation that moment right before it truly goes crazy where you feel as if one wrong move will set it off but moving doesn't change it. I will have to try the magnesium. Thank you for the tip.
Take care,
Alina
Wow, all that information makes sense I guess. I am getting a second opinion from a different rheumatologist as the first one gave me little help other that the name EM. After I see him, my doctor wants me to go for some kind of test for blood flow in my legs. I'll have to find out the name of the test. I will try the magnesium to see if that works. Thanks. One quick story - end of my 10 hour work day, I made a quick mention that my feet hurt and my boss said "mine too!". I didn't know whether to blow his head off, or just sit back and laugh. Thanks again for your replies.
Tired
jen said:
I get aching legs,too. This is a big problem when walking. It is not in the feet like my other em issues. My doctor said it is a common complaint of those with em. She hypothesizes that it is because so much of the blood is heading to the feet that the large muscles are not getting it. Therefore, there is cell death in the deep tissues. Good luck!
Jen,
Did the doctor indicate there may be any long term deterioration of the large muscles? I wonder where Im going to be in 30 years. Maybe that should be a new question to throw out there? I'm new to this site and wonder what the natural progression of this disease is.
Tired
Hi tired,
Perhaps the name of the test is a Doppler - a type of Ultrasound? I had one done about 4 years (I'm guessing at the time frame). It showed something to do with my veins but I can't remember what. But the results were the reason why my doctor said no to me having saline injections to get rid of all the little blue surface veins around my ankles that make those areas look blue. It was a vanity thing on my part but not something I'd ask for now especially since I'm getting more big varicose veins again. And my vanities are dropping away, one by one, as I age anyway.
Blue
Tired said:
Jen,
Did the doctor indicate there may be any long term deterioration of the large muscles? I wonder where Im going to be in 30 years. Maybe that should be a new question to throw out there? I'm new to this site and wonder what the natural progression of this disease is.
Tired
Hi Blue,
Yes I think you are right that it was called a doppler. I don't have varicose veins, so I think our situation may be somewhat different. I do think you are right about not being as concerned with things like that as we age. I'm getting to the point that if it doesn't hurt, I'll live with it. Besides, it's what you are on the inside that counts. Good luck with your situation and thanks for your input.
Tired
I'm getting to the point that if it doesn't hurt, I'll live with it.Tired said:
Yes. Exactly.
Blue
Hi Blue,
Yes I think you are right that it was called a doppler. I don't have varicose veins, so I think our situation may be somewhat different. I do think you are right about not being as concerned with things like that as we age. Besides, it's what you are on the inside that counts. Good luck with your situation and thanks for your input.
Tired
Yes, achy legs for sure. Heavy, painful. Throbbing puffy feet and tired achy legs (my hands get puffy and throbby too in the evenings, like right now).
Hi Tired,
I don’t believe that there is such a thing as natural progression where EM is concerned. Some people progress to a much better situation, some much worse. I would bet that most of us fluctuate, certainly between Summer and Winter, hot and cold, but on the whole stay much the same. However I have only had EM for four years so who knows what lies in store!
I get achy legs but rightly or wrongly put it down to old age. Also we are not able to use our leg muscles as we once did. Very few of my peers have reached this age without some kind of physical problem. And as you say, if it isn’t too painful it is best ignored.
My legs were aching badly but I thought it was because the muscles were not getting used. I can’t be on my feet for more than 10 mins at a time which really limits walking or any weight bearing activity. I started getting a sports massage twice a month. It’s usually painful but there is very little aching now. My massage therapist thinks I might have some firm of venous insufficiency but until I see my rheumatologist (only another 12 days to go!) I won’t really know what’s going on with me. However if you haven’t tried regular massage I would recommend giving it a go
Sports massage? Sounds interesting--and something that helps when it's done twice a month (even if painful) sounds good to me.
Hi Stardust,
When you refer to the pain when having a sports massage do you mean while having it or after?. I once had a flare after the first and only massage during the past 11 years or so. I seem to get red and burning skin wherever pressure is applied, as well. I'd love a massage for my 'kinky' neck but have been too worried about after flare to do it. When I think about it I tell myself 'why not try it?' "it would only be one more flare at worst." But when I think about making the appointment I chicken out.
blue
Hi Blue, No I don’t get any problems afterwards except muscles in legs a bit tender to touching if he’s gone in really deep. It can be painful at the time getting the knots out of the muscles but my legs are much better overall and so are the muscles in my feet. When I’m on my feet I can walk normally without any discomfort for the 10 mins or so before the EM starts up. BTY it hasn’t made any difference at all to my EM it’s no better or worse for having the massage. I feel better overall though and it doesn’t hurt every time also he does my back every other time and that feels great as I get stiff shoulders from sitting so much using computers and iPad lol x
Lymphatic massage is light - like a butterfly wing. No pressure whatsoever. Soothing. Maybe you could try it :)
Epson salt baths also help aching throbbing legs.
God bless
mads