It's been a very long time since I've been around here, but I hope everyone is doing well and welcome to all those who've joined during my absence! I hope the end of the year/holidays were good to everyone!
So a number of months ago, prior to my official diagnosis (despite already knowing this is most likely what I had) I went to see a rheumatologist because my symptoms were getting worse and I needed some kind of help. He was a jerk and didn't listen to me at all. He was convinced my flares were related to Raynaud's (which I also have, but the 2 processes are totally different and I know which is which!). So he put me on amlodipine for the Raynaud's, and I decided to humor him, against my best judgment that it was going to make things worse. Well, after just a few days I started getting flares in my knees, which had never happened before, and promptly stopped it! But, alas, the flares continue. They're worse when I stand for prolonged periods and at the end of the day. So I have a few questions -
1) Does anyone else get flares in their knees?
2) Do you have any suggestions on management strategies? Because my flares are worse at night - (it's like I'm fine all day at work and then step one foot in the door at home and BAM! flares everywhere, as if my body's been holding onto them all day!) - I'm having a harder time doing things like cooking and washing dishes because my knees and feet start to hurt so badly. I also have bad feet and so need to wear my slippers when I stand a lot or my legs and feet really hurt! So no cold floor for me :( But I'm getting super discouraged now at night when it's like I just want to cut off my knees sometimes! Any suggestions on how to better control the flares or good ideas on how to make my legs feel better when they happen so I can keep working?
I don't experience flares in my knees but I'm sure I will eventually as mine has progressed up my feet into my ankles and lower legs. Have you tried stretching before you leave for work and when you get home?
btw did your Raynaud's got better from the amplodipine? Your post is very interesting since EM and Raynaud has so much in common, for me when I got rid of Raynaud I got rid of EM too. But from your words it seems you arent the same case
Hi liz. Sorry for the delay! I don't know if the amlodipine would have helped or not, because it made the EM so bad so quickly, I didn't even take it for more than 2 or 3 weeks.
Yep, I can relate and especially liked the "BAM" which explains it rather well:). I would recommend two strategies:
1) First off, for cooling I typically use frozen bags of corn or peas. When my knees burn I elevate them at a 90 degree angle for 10-15 minutes which generally gives me "more time on my feet" before they start burning again.
2) Secondly, and this is a bit harder to explain, but whenever I stand up I always try to do so from the ground. For example, each morning rather than swinging my legs over and just standing up, I instead slide to the ground put my shoes on and then stand. For some reason it causes me less flare ups so I continue doing it.
Lastly, I'm a big fan on compression socks which prevent flare-ups from getting out of control.
My EM started in my right knee for some reason then went to feet - rest of body followed. I have terrible time with knees so i really do feel for you. I elevate as much as possible and use a cream called capiscuim which helps with the burning itch albeit temporary. Cant use cold as i also have FM or compression as dreadfully swollen lower limbs . I think aspirin is helping too a little(150 mg). I also use magnesuim oil spray - again every little helps.
Hi Leann - my EM started in my right knee and then went to my feet - sounds like yours went the other way. Knees can be really annoying at night, I find, as it's much harder to get them out from under the covers! I have a fan positioned near the bed and aim it at the bad knee when it flares up, and that helps... also dribbling water on it.... I also find sometimes it helps to bend the knee rather than straightening it. But we are all so individual with EM.
What makes you say the EM and Raynaud's aren't connected by the way? My rheumatologist thinks they are too - I have both - but I can't really tell.