My flares gave become daily and very painful. It is getting to the point where my body doesn’t do the things I want it to do anymore. I struggle to hold things due to the weakness in my hands and I am pretty much confined to my room now. It has been suggested that I may begin to need help with things like walking but i really don’t to end up confined to a wheelchair. I was just wondering if anybodies Em stopped getting worse and if so, at what point?
I am sorry to hear you’re struggling so much, Rosie. For some EM is a progressive disease and for others not. Members here are probably more likely to say their EM is worsening, as people who need support are more often the worse cases. That isn’t necessarily representative of all people with EM. My own case had explosive onset, was interrupted after a few months by novel intervention, and has been on a years long, slow decline with pharmacological management. If your symptoms are worsening, I’d advise seeking medical treatment ASAP.
Hi Rosie. So sorry you’re having to deal with this. I definitely think you should dig a bit further to get specialist help in light of the progression. But over what time scale have things been getting worse for you? Since it is summer now, if this has just been over the past few months then this might be the trigger.
Another point to consider is that you are very young and still going through puberty, so there will be a lot of changes and stabilisation happening. I am 23, but stalled my puberty for a decade because of an eating disorder. The start of my erythromelegia coincided with symptoms of restarting puberty, and pretty much hit full swing when I began my period. This was less than a year ago, so I haven’t yet experiences a summer with EM.
It’s always difficult to tell whether a condition like this is progressive, or whether it just seems to be because of the interplay of yearly and monthly changes in your body, and seasonal changes with the weather. But definitely seek help! There may be something they can do to even out the a=variations with some these factors.
I think my first symptoms appeared around the age of eight as i would get sore hands and i would pass out a fair amount. Last year i only had a few bad flare ups and i fainted a few times but this year i have multiple daily. I am really trying to seek help and i know the NHS is really overwhelmed at the moment but they keep on refusing my referals
Ive been trying recently to go to a pain management clinic but my referral got refused and ive been through the process of trying to get medication a few times but for most medicine i am too young for or it could be too dangerous for my long term health
I’ve had EM since I was about 5, it started in my ears and has spread to my feet, hands, legs and face over the last 20 years. I have several flare ups every day, especially with walking, moving my arms or laying in bed at night and of course the summers are always worse. I think EM is a little different for everyone but I would definitely get a second opinion if yours is progressing that quickly.
4 Likes
If you’re running into roadblocks obtaining treatment you should impress upon your doctors how the symptoms are impacting your quality of life. (Use the bolded phrase. It’s widely used in medicine.) Being a teen who is increasingly confined to your bedroom is not good for your long term health either. Your doctor’s have to properly balance the risk and reward of treatment. They may not fully grasp the disabling nature of your symptoms.
Rosie,
First of all I am so sorry you are going through a tough time, EM can be daunting and cause a sense of turmoil. I first developed EM when I was 23 years old, so relatively young. Mine got worse rapidly and I was eventually stuck in a chair all day after about 6 months. I was very aggressive in finding doctors who were willing to try treatments. If they told me they wouldn’t try any treatments, I stopped seeing them (this included Mayo Clinic). I eventually found a few doctors near home who were willing to coordinate with each other and try treatments. Within the first few months of trialing treatments I was able to find a few that really helped. After a year and a half of having EM I started doing desensitization therapy using capsaicin creams daily under supervision of my doctors. I am now 100% symptom free but it was a very gradual decline in symptoms over the course of 2 years. I still take medication daily for my EM (mexiletine and cyproheptadine) and use capsaicin cream on my feet a few times a week but my life is back to normal. There is hope for it to reverse its course and there has been evidence to show that this is most likely in young patients due to their EM having a high probability of being due to mutations in sodium channels.
TLDR: I got EM when I was young, about 3 years ago. I was persistent with my doctors and eventually found a few things that helped and have since gradually returned to normal. Again, there is hope, but having a doctor that is willing to learn about EM and try things safely with you is the best place to start and unfortunately the hardest part about battling EM.
1 Like
Mine goes thru periods of being a lot worse & then not as worse lol. Ive had it since 2002’so long time.
yes, mine is getting worse and i feel exactly as you do. i am desperate for relief. i am on cymabalta. t doesnt help at all. i have held out for a long time but am considering an opiod has anyone had success with an opioid. it is not ideal, addiction is a real risk serious but i just want at this point some quality of life because right now i have no life
Just a thought- this might not be due to EM. At least, I don’t think I’ve read about weakness in EM papers. I hope you can communicate this symptom to a doc and generally get the help you need. Sorry you are suffering.
You talk about struggling to hold things-dripping them. That was me…I hadn’t been diagnosed with anything at the time. Both hands had constant tingling and swelling, I could t use them to grip, cut, stir or anything. I even struggled with doors…Fast forward a few years, I finally got the EM diagnosis as well as severe carpel tunnel in both wrists. I’ve had the surgery for the right and it has helped some. Fingers still tingle, still can’t use grip and struggle cutting and stuff-but the constant pain is better. I still get the itching and burning with EM flares-but is better than before.
Push for more testing-because you can have EM and something else. Even if they can’t ‘fix’ everything-degrees of relief are important. Hang in there-it is not an easy or fast process…but there is hope.