Hi Everyone - this is the first time I have started a discussion, although I have commented on others.
Until very recently I have only had EM symptoms in my left foot, mainly the toes but it has now started showing on my right foot also but (so far) not to the extent as my left foot.
I am not on any medication at the moment, although at the end of March I did have a steroid infusion of 1000mg - which although took away the pain completely for several weeks and flares for almost 2 weeks, I now feel that my EM is getting much worse.
I used to have a couple flares at night when my feet would go very red, hot and tingly and last normally about 30 minutes but now I seem to be in continual pain and my left foot remains red and always has a mottled appearance.
I have been able to remain relatively positive until the last week as the one symptom that does get me down is the swelling. My foot and ankle are so swollen and no amount of rest helps. I cannot get any shoes on and live in my flipflops at work and bare feet at home. My left foot looks more like a lump of meat shoved on the end of my leg and I am becoming increasingly depressed and panic stricken by its appearance.
Please does anyone else suffer to this extent? Does anyone have any medication suggestions which I could take to my GP?
I would really appreciate any feedback that may help me cope with this symptom.
My feet do swell and got red, purple or mottled looking too. I am lucky that the swelling does go down when I put my feet up tho. Mine swell even when not in flare sometimes and have had many people ask me why my feet/legs look so weird. It is frustrating but I am lucky that I work with supportive colleagues and the 4 & 5 yrs olds just take what i tell them in their stride. It's when out on the street and strangers look at you funny it bothers me more.!
I use a fan directed on my feet to keep them cool and ease flares, I'm not on any medication now and feel much better for it. I couldn't cope with all the side effects of the various meds I was trialled on.!
Sounds awful and my thoughts are with you. I don't have this issue but understand why you're so unhappy. Just want to offer my support. You make it sound as if this is a side effect of the cortisone. Is that what you think? If it is, maybe it will go away, when the cortisone is out of your system. Have you seen your doctor again.
Sounds awful and my thoughts are with you. I don't have this issue but understand why you're so unhappy. Just want to offer my support. You make it sound as if this is a side effect of the cortisone. Is that what you think? If it is, maybe it will go away, when the cortisone is out of your system. Have you seen your doctor again.
Sounds awful and my thoughts are with you. I don't have this issue but understand why you're so unhappy. Just want to offer my support. You make it sound as if this is a side effect of the cortisone. Is that what you think? If it is, maybe it will go away, when the cortisone is out of your system. Have you seen your doctor again.
Hi Laura - thank you for the chat last week - much appreciated.
Ellen.x
lauraflora1 said:
My feet do swell and got red, purple or mottled looking too. I am lucky that the swelling does go down when I put my feet up tho. Mine swell even when not in flare sometimes and have had many people ask me why my feet/legs look so weird. It is frustrating but I am lucky that I work with supportive colleagues and the 4 & 5 yrs olds just take what i tell them in their stride. It's when out on the street and strangers look at you funny it bothers me more.!
I use a fan directed on my feet to keep them cool and ease flares, I'm not on any medication now and feel much better for it. I couldn't cope with all the side effects of the various meds I was trialled on.!
Hi Laura - thank you for the chat last week - much appreciated.
Ellen.x
lauraflora1 said:
My feet do swell and got red, purple or mottled looking too. I am lucky that the swelling does go down when I put my feet up tho. Mine swell even when not in flare sometimes and have had many people ask me why my feet/legs look so weird. It is frustrating but I am lucky that I work with supportive colleagues and the 4 & 5 yrs olds just take what i tell them in their stride. It's when out on the street and strangers look at you funny it bothers me more.!
I use a fan directed on my feet to keep them cool and ease flares, I'm not on any medication now and feel much better for it. I couldn't cope with all the side effects of the various meds I was trialled on.!
I can understand completely what you are going through. My feet swell aslo and at times they do not even look like feet.My doctor has prescribed furosemide (Lasix) 40 mg every day for me and some days I take 80mg. I have found this to be helpful. I also juice celery because it is a naural diuretic. But always check with your doctor first because taking diuretics can lower your blood pressure. Hang in there... I know it can be tough.
Thanks for sharing, I've received good tips along my journey from this site. Here are my top strategies:
1) Compression Socks. These have helped more than anything. I use 30-40mmhg strength and wear them all day. They help to control how much swelling occurs.
My apologies for not replying to your replies that you kindly sent me. I have not been too good the last few weeks and my GP signed me off work for 2 weeks (due to go back tomorrow) to rest up, which I have done, and my feet did return to a more normal looking appearance. I have been taking carbamazepine for just over 2 weeks and the pain I was experiencing has eased. I was very depressed and needed some time out to try and get myself mentally strong again - although this heatwave which has hit the UK has not been kind, as I am sure you can appreciate! so I am stuggling somewhat again but focussing on staying strong.
lauraflora1 - I am planning to take a small fan to work with me tomorrow to place by my feet. I am in a room on my own so I can't see anyone complaining about me doing that. How are you finding this UK heatwave?
Lynee - I thought I had replied thanking you for your support but see I replied twice with blank messages - my apologies - I do not know what I was doing wrong - and I very much appreciate your support. I did think the cortisone may in some way be contributing to my symptoms but my consultant assures me this is not the case and it would only be in my system for a couple of weeks.
thecatlady - thank you for this information - I will ask my GP when I next see him. I only see my consultant occasionally (although he is always at the end of the phone and agreed to me trying carbamazepine) but my GP and my consultant are lovely men who are willing to listen to me and want to help me manage my symptoms in order to get at least some of my old lifestyle back. I have just purchased a juicer in the hope that it will relieve some of my symptoms and have been eating celery so I will give juicing it a try.
scanfield1 - thank you for your tips also. Compression socks were suggested to me a while back but I thought the tightness of them would start a flare as I cannot stand anything tight around me feet and ankles, but you say they work for you - perhaps I should give them a go afterall. I did suggest serottonin antagonists to my consultant but he was not keen - do they help with the swelling and hot/redness symptoms? Elevation has helped me in the past but not so much now unfortunately. As soon as my feet are back on the floor - the swelling returns.
Whilst not at work I have also had several accupuncture sessions which I believe have helped my physical and mental symptoms - I hope to keep these up on a weekly basis.
Wish me luck for my return to work tomorrow - unfortunately I do not have an understanding boss - and I am sure the stress of working for him does not help my condition!