So spring has arrived with a vengeance. I’m already flared up badly again and house bound in pain. This time my hand has flared up too. Wasn’t supposed to see the dermatologist till June because he wanted to see how I was when it was hot out. Last time I saw him was in winter months and he’s convinced it’s chilblains. So advised me to keep my feet warm and wear wool socks. I actually laughed out loud when he said that and smiled and nodded.I’ve tried to explain that warm footwear is my mortal enemy during a flare up a few times before and he just doesn’t hear me. I have to go see him next week now and get another biopsy done. Pretty tired of playing this game with him.
I have exactly the same problem with the medics keep going on at me to keep my feet and legs warm! No matter how many times I tell them that it's the worst thing I can do they still say it.
I am really suffering at the moment as I have loads of ulcers on my legs and feet and now they are trying compression bandages. It's dreadful bandaged right up to my knees. It used to help me with the pain to sleep with my ceiling fan on but with the bandages that doesn't work. I have been sleeping in my chair with my feet on ice packs wrapped in a towel as it's the only thing that helps.
I hear that completely. Last year I had really bad blisters that burst and the docs said to keep them bandaged to keep from getting infection. But the bandages kept them too hot. I’m in the same boat this year big blisters burning and itching just waiting to make my sorry existence all the more hellish! I’m sorry for the negative drama. … I’m just in a really dark place tonight. Evening is upon me once more. … I try in the early hrs of the day to convince myself that tonight it won’t be so bad, but then evening comes around along with the burning, maddening pain to prove me wrong. I don’t know if it’s worse this time or if I’ve just fooled myself into forgetting.
We all get in dark place at times. The most annoying thing to me is people keep saying stay positive. Yes, we try, but it's hard when you are going through a bad spell and people saying that for me doesn't help. I do try and take my mind off it by doing other things.
The trouble for me is that after all these years and things going worse all the time with doctors not taking notice of me I don't have flares these days, it's 100% of the time and my only relief is my ice packs.
I know people are trying to be helpful, but unless you are in the same position people don't understand and that's what's great about being here we can share things with others that are going through the same things and that helps.
Thank you Sheltielife. I don’t know what i’ll do if my flares become 100%. I have 4 children to care for. Ages 3,7,11&13. It’s demanding. Thankfully I’m blessed with an amazing husband and father who tries to do as much as he can during the worst part. But it’s quickly progressing into 5 months of huge blistering flare, a month or 2 of very mild day to day up and down then another 5 months of agony. I’m right now sitting outside with my feet on the cold cement at 2:00am waiting for the gabapentin to kick in. So I can be exhausted again tomorrow. I’m tired. … I have to keep telling myself things could be worse and start counting my blessings.
Hi Natalie, First of all I am told that it's very rare to have this 100% of the time so yours might never get to that stage. In fact my dermatologist said it couldn't be EM as I have it all the time!
I am lucky in a way that mine started much later in life than yours. I dread to think what it must be like to have 4 children to look after, good job you have a good husband and father.
Do the docs know what is the cause of yours? I have never really found out what is causing mine there are a few things. They have said it's due to PADS, but it has also been suggested it could be my RA or small fibre nerve damage. I am sure if the cause was established and that was treated I wouldn't be as bad. Unlike you I can't take Gabapentin or any of the similar drugs and so another reason yours may not end up being 100% of the time.
I am dreading the next few months with summer coming up. I used to love summer, but not these days.
I just hope that it doesn't get any worse for you.
Well a little progress. … not absolute diagnosis. But leaning more along the line of em… finally. He is doing a trial of nafidapine, but in A cream so it’s going directly to the Area and won’t interfere with other meds. I was so relieved, he didn’t grouse on me about my flip flops, exposure to sun, exposure to cold. None of the usual blaming me somehow for what is happening to me. Finally it felt like he was on my side, working to help me. He doesn’t just want to treat the symptoms he told me he would dig for the source and work on treating that. But in the meantime, Try to keep me comfortable without having me all dopey. I don’t really like the gabapentin either. But it has been the only thing so far that is absolute relief. Anxious to try this new cream tomorrow! (Can’t get it till then)
Natalia, you need a specialist. There are doctors lists on a couple of sites. I went to 5 Drs 2 of which were nerve specialists. No diagnosis.Then I found the list. So I googled my symptoms and there it was. If you can't find a specialist near you, email me (through this site)* and I'll get to work researching to try to find an educated dr.to help you. EM affects only 13 people out of a million. It's an orphan disease and there are 7,000 of them. These facts helped me with the anger and frustration I felt. I knew exactly what you felt when my first rheumatologist told me to put my hands in warm water or hot wax. I started laughing. My hands were ON FIRE and this is what I was told. Totally clueless. So let me know if you'd like me to try to find a specialist in your area. On the site theerythromelalgiaassociation.org there's a Drs list. Good luck. I'm burning today which is really annoying because I have stuff to do. Oh me.
* Edited by ModSupport
I wonder why some people get blisters and swelling, while others don't. I've never had blisters from a flare and don't get noticeable swelling. Maybe it's variations in severity, but left untreated my flares were vicious. I couldn't tolerate them without putting ice on.
But yes, always remember it can be so much worse. I have a close friend who was diagnosed today with esophageal cancer that has metastasized to the liver. I'm sick over it.
My feet literally look like I kicked hot coals and feel like it too! I’ve been out walking in the wet dewy grass for the last half hour as a last resort at 5:00am… after being up since 2 puting ice packs and soaking in cold water back and forth to bed. This is the worse flare I’ve had. And it’s now spreading up legs. I’m in tears right now Cuz I’m so scared. I’m in so much pain and don’t know how much more I can take. Dammit!
Sorry Natalia you are having a bad time. Don't give up, it happens to me sometimes that whatever I do I can't relieve the pain and then the next day it can be not so bad.
I am also struggling at the moment. To make things worse the nurse has just been to do my ulcer dressings. I have so many now it's unbelievable that more keep coming. Plus, the one that came today is about the worst one she doesn't seem to bother that she is hurting me when she gets the old dressings off that are usually stuck. Plus she usually does the compression bandages too tight. The last time she came that night I couldn't sleep and ended up at 6 a.m. taking the compression bandages off. She had put too much of the fluffy bandage on and so the top circular one was too tight as I was measured for it without so much of the fluffy stuff.
One good thing yesterday I drove my car from my wheelchair for the first time. It felt great to be able to get out on my own. I haven't been anywhere for over 12 months except for hospital so now I will be able to go out for pleasure.
It’s SPREADING!!! Just yesterday the fire in my palms started in a straight line from my outer wrist bone, up my outer arms & into my armpits. Late last night, electrical tingling started down my sciatic nerve, down my legs & into the outer soles of my feet. In desperation I just called my EM Dr’s office this morning and they’re going to call the pain clinic that I called 2 wks ago that never called me back. I’m getting a little panicky. Is this what the rest of my life is going to be? The fire just increasing and spreading? HELP!!!To tell you the truth if I didn’t have 3 pets to be responsible to, I’d seriously think of the best way to get out of this body. Then…I read Sheltie’s message, all she’s tolerating and coping with and I feel ashamed that I’m such a pain coward. Can you tell I’m crying? What a delightful way to start the day. I’m sorry if I’m bringing down my fellow burners. I didn’t mean to.
Hi Satochan,Sounds like we are all going through a bad spell. Hang in there tomorrow could be different. I have had times like this and then all of a sudden for no reason it eases off a bit.
I can’t believe you replied so quickly. The tears are drying and I’ll keep in mind your hopeful note. Thank you!
Just lucky I was on my computer when your message came in! Glad your tears are drying, it does help to tell someone that understands.
I just don’t get it… This morning I was in a panic over the spreading pain & crying like a baby. At 4 pm the pain eased, and by the time I went to Bible study the burning was completely gone. I took no pain meds as I had to have a clear mind for class. Thank you Sheltielife for encouraging me. Was doing further research on the statistics re EM. I failed to see a little dot Between two numbers. There are only 1.3 EM patients in a million. NOT 13. Is it any wonder Dr’s don’t know what to do with us?
Well what did I tell you a couple of earlier replies ago? I said “tomorrow might be different”. It 's strange I know but some days I am really bad and then the next even though it never goes I am in a lot less pain when nothing has changed.
I am just glad it’s happened to you.
Unfortunately I am having a bad night, well early hours of the morning in the UK. Not so much my EM it’s my ulcers. The nurse that did the dressing today did it far too tight. I have just taken the bandages off and re-done them so I hope that helps.
Dear SL, I am going to print up your yesterday’s word of encouragement, and put it on my bathroom mirror. The next the a flare comes and I start thinking, Is This It For the Rest of My Life? I’ll see it and be reminded that flare can subside as quickly as it came. You truly are a God Send. Hope your day will be pain free. It hurts my heart to hear of your ulcer tortures.
Hi SL I am so glad I was able to help. As I think I said that's what we are here for to help each other in times of need. What a great idea to put it on your bathroom mirror.
Unfortunately, I have had an awful day. The tissue viability nurse came along with an ulcer dressing nurse specialist. They started by scraping the dead stuff off which was agony. Then they put the compression bandages on and not what you want when you have EM. Still if it works it will be worth it. The good thing is they are instructing the nurses to come every other day instead of twice a week and leaving them clear instructions on how to do the dressings. Then they are bringing forward my appointment with the renal specialist as they think one of the biggest problems is water retention. So, somebody is actually getting on with it at long last. They did say they think that even though it will take a long time they will heal in the end and I won't need amputation.
Dear SL, It breaks my heart to hear the hell you’re going through. You go through the very worst of it and yet you encourage the newbies. I pray the ulcers on your legs begin to heal soon. Are you British? I’m always so in awe of the KEEP CALM AND CARRY ON mind set. Finally after I and 2 of my Dr’s called, I got an appoint with a pain specialist. Yippee! Sato