Since January, I have had episodes of swelling of my feet and ankles even when my feet are not flaring. It's hard to notice since I have very skinny feet & ankles but definitely not normal. Been constant for about a month. We have had very hot weather in Southern California for months now. I try to stay out of the heat but sometimes it can't be avoided. I ice and elevate my feet best I can, but the swelling remains. My General Practitioner says my heart and kidneys are working fine, don't worry. Does anyone else suffer from swollen feet (even when not flaring), especially in summer? I wondering when this will go away (along with the heat here, it's the hottest summer/fall on record). Thanks.
Hi Jewels, I have just read your post. I too get swollen feet and ankles even when my feet are not flaring. It happens anytime and anywhere whether it is hot or not. I have no idea what causes this but I can sympathise. My feet swell up and so do my fingers for no apparent reason. I assume that it is all connected to the EM. Dee
Has anyone had or heard of someone they know with EM told how long hey have left to live? My husband has been suffering since May/14
And has been going through huge pain spurts that never seem to fade away. Open ulcers lots of swelling. He was told last week that they don’t think he will live longer than 10 years at this rate.?!!??!! Anyone?
Hi Michelle, I have read your post and am shocked and saddened by what your husband has been told. Who was it who told your husband this? After researching this condition because I myself have it, I can tell you that it is very unlikely that this is the case. A great many people with this condition have very severe symptoms but there are many ways that these symptoms can be relieved and controlled. I don't think you should worry yourself and your husband about this rubbish that you have been told. Many people from all over the world have this condition and all have it to varying degrees, however, I think it is highly unlikely that your husband faces this supposed prognosis. Your husband has to get access to the proper care from doctors who will be able to help him with his symptoms, ways to deal with the pain and the ulcers and ways to get on with his life without this ridiculous worry hanging over him. Dee
Michelle, I too am shocked that any medical professional would make a statement like this to your husband and cannot possibly see how this prognosis can be justified. Let alone for ten years hence. A cure for EM could have been discovered by then.
Many EM sufferers have other conditions which come in to play but this to me sounds like an 'off the cuff' and thoughtless comment by someone who, frankly, should know better. As hard as it is, I'd try to put it out your minds or find another member of your husbands medical team to talk it through with.
Dee is spot on in what she says. Focus your/his time and energy finding doctors who will proactively treat his symptoms, starting with those ulcers. I hope my fellow Mod sheltielife will respond here as this is something she knows more about than I do ... I'll give her a nudge.
Has your husband found any relief from any of the suggestions we have here on the site? Even simple things like protecting the skin from water by putting plastic bags over the feet enable them to be cooled in a bowl of chilled water.
Thinking of you both. Kindest, Jules
Primary erythrommelalgia can be a different beast and ulceration can ve very serious. I'm curious is your husband on an Aspirin regime? It is usually very effecitve with Primary erythrommelalgia. As strange as they may sound ask around for who is best in your area at dealing with Diabetes complications. Nearly every major medical center has a "wound team" The ulcers can be dealt with far more effectively than it sounds they are. Also I would ask about medication called: Nucynta. It originally was a diabetic medication (class II narcotic) but has had additional FDA endorsements of late that would extend it to EM. (its pricey stuff) For this kind of issues, it been nearly a miracle med.
TJ
Michelle warren said:
Has anyone had or heard of someone they know with EM told how long hey have left to live? My husband has been suffering since May/14
And has been going through huge pain spurts that never seem to fade away. Open ulcers lots of swelling. He was told last week that they don't think he will live longer than 10 years at this rate.?!!??!! Anyone?
Hi Michelle, I too can't believe that a doctor should say something like that about prognosis. They can't even tell with cancer patients how long they have to live let alone something like this! A few years ago I met a man that had given up his job as he was told his wife only had a few months to live. When I met him this was over 10 years after he had given up his job and his wife was still going strong.
As for the ulcers, as Jules says I have certainly a lot of experience with them going through various different treatments. Who is treating your husband's ulcers? I started off at a podiatrist and even though they are supposed to be experts they made things worse. Now I have the district nurses coming to me twice a week to do my dressings. Again they have been through a few things and finally we think we have found the answer. The last few times they have been using a different type of dressing. This is what they are using now: http://www.smith-nephew.com/hong-kong/products/by-product-type/gel-dressings/intrasite--conformable/ With this there is no need for them to dig out the dead stuff this product does it itself and it gives some pain relief as well. Previously they used Activform Cool but the trouble with that was it has to be cut to the exact size and shape off the ulcer which isn't always easy. With this new stuff it just gets shaped to size. They then put a dressing on to keep it in place.
I used to do as Jules said and put my feet in a bowl of water, freezer bags first so the dressings didn't get wet. However, now I have found that it's a lot easier and less likely to wet the dressings by buying some ice packs putting them in the freezer then wrapping them in a towel, as you shouldn't put frozen things next to your skin. It's so much easier than a bowl of water. I have quite a few so that I can change them every couple of hours. The problem is night time as I can't do that, but I move the bed clothes and have a ceiling fan or any type of fan you can get and have that blowing on my feet and legs all night. It certainly helps.
Contrary to what you were told EM doesn't kill people, it's just very unpleasant symptoms. Some people find that drugs help, but I didn't at least the ones I could take. Some of them had bad side effects and a couple of them interacted with things I was already on. That is something else should your husband be given anything to try make sure you check that the drug doesn't interact with other things he might be on. There is an interaction checker on here. I normally look everything up before I take anything but on one occasion I didn't and I was in a coma for 2 hours. Afterwards I used the drug interaction checker and found that this new one and something I was already on taken together could cause a coma or even death! I was lucky and the reason I am saying this now so that it doesn't happen to others.
Whatever, please don't get too worried there are people here who you can ask questions and there will be someone who has experienced of the same thing.