Although pressure on my feet brings on the EM symptoms after about 5 mins if I have days where I just sit around this seems to lead to almost constant burning and pain. Does anyone else find the same? Trying to get the right balance between moving about and sitting is quite difficult. If I get it right I can have days with very little pain. Get it wrong and it can be bad for hours at a time.
I think you’re right about keeping the muscles strong. After my (useless) operation the muscles were weak and I could hardly stand at all b4 burning started up. I found a good sports massage guy and he got me moving again although the massage was really painful it was worth it. I now go once a fortnight and the muscles are much better. Things were so good that I convinced myself I could go for a walk with the dog. It was only half a mile but I was in a terrible state for a week afterwards. It’s important not to get too confident when things are getting better.
Yes I really recommend massage it’s not a cure but it does help!
So I have been dealing with this condition only for a few months now, and my symptoms are mild compared to most. My hands are the most affected part of my body, with little actual pain in my feet (but lots of redness and heat). I have noticed that my flare ups are less intense after I run , which is about twice a week. I don’t know how long it will last, but I note a definite difference.
Tizzy, they don’t bother me at all. It’s strange. I ran/walked seven miles last Sunday, which was overdoing it for me. My blood sugar must have bottomed out about a half hour after I got back because I felt terrible - nauseated, weak, clammy and hot. However, after I ate something, I felt fine, and I had zero EM symptoms the entire night. At the very least I have redness and heat in my hands and feet almost every night, although the pain is considerably less on aspirin. For example, I have been laying in bed watching the news. When I got up a few minutes ago, my hands and forearms started hurting as soon as my hands were at my sides.
I am terrified that my condition will progress to the point that I can’t exercise. I have had high cholesterol since childhood, and I only got it under control with diet and exercise over the past year.
I also run, my feet flare in the initial few minutes of a run but then tingle and go numb for the remainder. As long as I get in a warm bath and cool my feet slowly they don't flare afterwards. If I come home and sit straight down tho I end up with a terrible flare.
NolaSue said:
So I have been dealing with this condition only for a few months now, and my symptoms are mild compared to most. My hands are the most affected part of my body, with little actual pain in my feet (but lots of redness and heat). I have noticed that my flare ups are less intense after I run , which is about twice a week. I don't know how long it will last, but I note a definite difference.
I agree with you Tizzy, its like anything people only use their voices when things are bad. I try to be around even when things are good and try to post some positive discussions but often those are overlooked when people need more advice and support... We need to try to keep those people who are doing well on here and contributing to discussions to get a more realistic overview.! On a good note I have been able to keep my fitness for a lot of my EM journey, I take a break when things are back but always determined to get back out there doing what I love, cycling, running and generally keeping fit.! I'm never going to be an athlete but after giving up exercise in Sept when I got news of having MS, feeling pretty poorly and losing motivation to keep fit a friend encouraged me to sign up for a 5k charity race. I have been training 3 times a week and managed my first 5k run without stopping this week.! I have just downloaded the couch to 10k training app..! Well done Nola Sue on your weekend run :)
Tizzy said:
Also Nola Sue - dont worry too much about progression, this site is fantastic but in some ways is a skewed sample as the people who are worst often have more information and stick around more(I am an example of that ) I like to think there are other em patients tootling quite happily in their lives with minimal symptoms or good improvement and of course we hear less of them.
I sprained my ankle last Saturday. Just a mild sprain but I was off my feet for 3 days while it recovered. My EM symptoms have been really bad this week and I’ve had to force myself to stand and walk in short bursts of 5-10 minutes even though my feet are aching since doing a very short walk yesterday the burning has eased off although the muscles still ache. My massage therapist says my muscles are really tense in my legs as well as feet and he can tell how active I’ve been just from that. Don’t know if EM causes muscle fatigue or if it’s something else causing both. Hope the rheumatologist will have some ideas when I eventually see her!
On a positive note although my symptoms are very up and Down they are no worse at their lowest point than 2 years ago when I first had them so there is no reason to think that things will get worse. And hopefully they can get better as more understanding of causes and possible treatments come on line!
I do get muscle fatigue too but think that’s my ms and not the EM although symptoms from both started at roughly the same time.! Some days my arms feel like dead weights and I can’t even hold my hair dryer up to dry my hair.!
Thanks, Tizzy, for putting that in perspective. I definitely needed that. Lauraflora, I’m inspired that you’ve been able to keep exercising. I finished my first 10K today. I loved just about every minute of it, and I beat my target time. I’m hopeful I can keep going. I had no symptoms today until coming home from eating a massive, spicy crawfish dinner, and then just heat and redness.
Stardust, your positive outlook with regard to progression is very refreshing. I’ve been falling into some major anxiety on the subject while I wait for my first neuro appointment, so I appreciate your account.
Wow, well done NolaSue. I’ve signed up for a 5k charity race next nobth, this was my push to get back out there… I did c25k training which I finished last week and went I to the 10k training… I am doubtful before every run that I will be able to do it but feel a huge sense of achievement whenever I finish. I haven’t failed a single session yet and when things become tough I mentally tell myself I’m not letting EM or MS beat me.! It’s taken me 9 hard weeks to get to the point where I ran 4.3 miles the other day, worth the struggle.!
Great point Tizzy. I think it's important to keep this in mind. People who are worse off tend to be online the most and have more info because it effects them more. For some it is completely disabling and they are Trapped at home because of this and have more time than those that are still able to work and socialize. It definitely skews the perception on the frequency that EM will progress to something worse.
Take care,
Alina
Tizzy said:
Also Nola Sue - dont worry too much about progression, this site is fantastic but in some ways is a skewed sample as the people who are worst often have more information and stick around more(I am an example of that ) I like to think there are other em patients tootling quite happily in their lives with minimal symptoms or good improvement and of course we hear less of them.
You are so right dkel9307. For those like myself that that are severely limited by EM this site means so much. It gives us the chance to be active and useful in a world that is hard to find any more.
Lauraflora, C25k was how I started, too. A year ago, I couldn’t run for 3 minutes. My first 5k was last September, and I was hooked on races after that, although I couldn’t find time to do any more until last weekend. I also did the bridge to 10k program for this race. I still feel the dread and doubt before the workouts because I know a lot of getting through them, for me at least, is psychological. That’s especially so now that I worry that every twinge or bit of numbness I feel is a flare up.
I think the c25k is brilliant at building up at a pace that makes it manageable. I have a phone app that tells me exactly when to run and when to walk. I did however speak to soon when I said I never failed a session… That failure came Sunday when I had a bad EM flare plus some MS sumptoms reared their ugly heads(first hot day for training) I wasn’t hydrated and hadn’t eaten much either. We really must remember to look after ourselves and listen to our bodies whenever doing any exercise. Well done on the races. Do you find having them booked is all the motivation you need…?? I’m not sure is be as motivated without it.