The Big Scary Question. I'm gonna get the nerve to ask it :)

Since I am relatively new to this EM, I've been worrying about what the prognosis is. I can't seem to find anything about a typical outcome. I have read a few scary things about ulcers, gangrene,etc. I'm wondering what the EM will do to my hands in the long run....or is this something that we just don't know. I'd love to hear from people who have had this for a long time. (of course I'd love to hear from others as well). Ok, there it is... I asked it. Now my hands will probably turn red (they turn red if I get stressed, so unfortunately the thought of the EM causes stress, and then in turn makes the EM worse. It's a vicious cycle!

Thanks for any info.

I wonder this, too. I have had EM for a little over 3 years and I am in my twenties, so I am really afraid of what will happen over time. It seems there is no consensus, and when we stop hearing from people, I always wonder if it is because they've found decent treatment and have lives now, or if EM has killed them, or made them unable to move or communicate. It seems no one knows, and I'm with you - the mystery is terrifying.

I don’t know for sure but I think everyone’s EM is different. Some people stay the same over time and some get worse. I would like to think that some also get better. I have been symptomatic since Jan or Feb 2011. A little over 3 years and I’ve seen mine get better and worse and everywhere in between. I admit when it first started happening I too was concerned mainly because it felt as if my veins would littered burst in turn possibly killing me. After the m a no times I have gone through this and there has been no serious permanent consequence I am now of the understanding it won’t actually kill us or anything like that . I also have never heard of anyone dying from this condition and with the Internet I would think we would have heard something if it were happening.
Hope this sets your mind at ease.
Take care

Hi, I was diagnosed with EM 4 years ago and I too have the same fear so during my last visit withbmy neurologist (1month ago) I dared to ask the question. She told me there was absolutely no evidence of any long term nerve damage from EM flares. Although I was grateful to hear this answer I continue to worry that the next flare will be THE one that doesn’t go away, that incapacitates me…and all those scary thoughts. That being said I also have had ups and downs throughout the 4 years and somehow, just when I think it’s all over for me, I get to enjoy a few good days and so tell myself that when I flare it will eventually go away… Hope this helps ! God bless

You are right, Dominique. The flares do eventually pass (for most of us) and we should try to make the most of our flare-free times. I, too, have had several occasions when I would worry an imagine that eventually a flare would begin and never stop. I have had to remind myself that it will pass, as you said. Looking forward to it being over and done with, as opposed to reacting to (and focusing on) the pain of the current flare-up, seems to lessen the duration and intensity as well. I have only one apparent lasting result of my feet flaring is very dry, thick, cracked skin. The only product, I have found, that helps to moisturize and soften my feet (to any noticeable degree) is called “Cracks No More” by Nail-aid. So, not permanant damage. Just very stubborn :wink:

Hello Cheshyre Catt
Thank you for the encouraging words… If I may offer my solution to dry cracked feet…EVERY night, and I mean EVERY night !!(Even on new year’s :wink: i put foot lotion on the heels (I use Goldbond) and every time I take a shower I put soothing bath product on the shower floor and position myself to have one foot covering the drain so the water accumulates and gives my feet a soothing soak (obviously I don’t take very hot showers!!) :wink:
Hope this helps, let’s try to keep postings as positive as we can, I sure it helps others…
Remember!!! EVERY NIGHT!!

It is a shame that there are so many stories out there about EM being a progressive disease and lots of worst case scenarios to frighten us. There are people who are housebound and bedbound and I wonder if EM is the sole reason for their extreme situations but I don’t think it is necessarily the norm. I was so scared in the early days and for the first two years could see no way out of the hell I felt I was in. Now another two years on I have gone forwards and backwards enough times to be able to be optimistic and to know that there are medications that take care of some of the non EM problems I have which were making it all so much worse.
The consensus seems to be that there is no typical long term outlook so I hope that makes a little dent in your worry Cowboy.

Love it ! Thank you! It sure helped me :wink: i was having a paticularly bad evening and you just put things in perspective and gave me hope :slight_smile:
Thank you!

Hi Guys. Nel is right. EM is not a one size fits all syndrome - manifesting on a scale of severity and chronicity.

It can be progressive yet can stall.

Can be localised or widespread

Atypical - no one person seems to manifest exactly the same way. Although many aspects similar ie: ankle - foot flaring

Internal - external or both

Whilst no known cure - there are many medications you can try together with self help minimisation tactics. These can help ease certain symptoms.And there are several reported cases of remission. In fact I know someone myself who has been in remission now for 5 months

Some symptoms can be managed to varying degrees- others symptoms simply cant. , Syndrome = a complex group!

Acute Vs gradual onset

Primary Vs Secondary

Individualised Vs generalised approach. In other words certain meds are shared and given as first line treatment to all Em'ers such as Gabapentin/Pregabalin, aspirin, - others require hospitalisation to determine whether you show a positive response ie:Sodium channel blockers,Lidocaine, Iloprost . Alternatively you have the long 2/3 monthly turn around trial/error drugs ie:serotonin boosters, thyroxine,immune surpressants, tramadol .

A polypharmacy approach needed rather than monopharmacy - no single med is effective alone.

Trial/error rather than science - ie: no simple solution

The list goes on ......

For those of you that dont know me I am housebound ,bedbound and reliant on a carer. However, my situation is extreme, my onset was acute - leaving me disabled within 2 months. I have since been diagnosed with severe chronic secondary widespread internal/external EM .... so yes I I have it pretty much everywhere .For all,of us its frightening, its intolerable , and its a bloody wicked thing to have. But its made worse by the fact that most of us struggle for years trying to get diagnosed. There is such a void of EM awareness out there.So few Dr's recognise EM, let alone know what treatments they could be trying you on . Maybe trying to manage symptoms is as good as it is going to get for most of us(at least for the next 5 years). But just knowing what we have is a tremedous relief. And that brings me back to Nells point of worst case scenarios .EM is an enigma ,therefore prognosis is like saying 'how long is a piece of string'. Gangerene, ulcers.... its all about self care.... looking after yourself. You can avoid nerve damage by refraining from icing . If like me you experience terrible swelling - lymphatic drainage (MLD) can help .If you are bedridden - feet flexions can help pump that circulation to lower risk of DVT. You can often minimise symptoms - delay flareseven by avoiding triggers ie; heat, fatigue, stress, exertion, stimulants etc... Its all about educating yourself about the syndrome like you would with any other disease. EM can undoubtedly cause other complications such as polycythemia, thrombotics but then you can cross the road tomorrow and get hit by a car. Refractory pain is notoriously misunderstood. Anything 'invisible' malaise usually is. Truthfully, I dont know so much if things get better ,or you learn to cope better by accepting your condition. What I do know is that this is the place to be - talking , sharing , supporting each other. This is the only way to demystify the mystery. Many of us via trial/error do eventually find a package of treatments that may bring some degree of comfort. Even extreme cases like myself can improve. 2 years later and after 4 months on SCB therapy im now able to get around for brief periods on crutches. I can even type with 2 fingers lol! Wait until i can use both hands!!!!!! . One reason that a list of Dr's is being compiled is so these 'worst case scenarios' will cease to exist.We must raise awareness ! I agree with Nell - fiercely optimistic.

Wishing all Em'ers the most 'comfortable' night possible

God bless


PS: If anyone wants some research listing treatments or info on anything mentioned just ask me.

Also- if you havent given me your diagnosing Dr's name/address please do so.Thanks.

Every night. Got it. Lol!
I am aweful about remembering to apply any lotion or balm to my feet, and that is actually another reason I mention the “Cracks No More”. If I forget to use it the next evening, which is highly likely for me, it doesn’t seem to set my feet back to square one. I did try Goldbond, as well as Aveeno, Eucerin, Lubriderm, and a couple others I can’t recall the names of at the moment. I think it’s just my feet get so bad, so quickly, that they’d be bleeding before I tried anything. I leave my feet alone. Sometimes it seems lotions would aggravate the EM, perhaps because the moisture would aid in retaining heat. I am not sure, but that is what I think was happening for me. Thanks for the recommendation. If I can manage to get the skin to a “normal” condition, I am sure the Goldbond will help to maintain it.

Dominique said:

Hello Cheshyre Catt
Thank you for the encouraging words… If I may offer my solution to dry cracked feet…EVERY night, and I mean EVERY night !!(Even on new year’s :wink: i put foot lotion on the heels (I use Goldbond) and every time I take a shower I put soothing bath product on the shower floor and position myself to have one foot covering the drain so the water accumulates and gives my feet a soothing soak (obviously I don’t take very hot showers!!) :wink:

Hope this helps, let’s try to keep postings as positive as we can, I sure it helps others…

Remember!!! EVERY NIGHT!!

I haven’t been diagnosed yet. My rheumy dr appointment is this Wed. My symptoms are very red feet and hands, sometimes my ears and face with mild to moderate pain in my feet/hands. I also get blue/purple hands/feet. My nails are ridged and brittle. I read somewhere that having herpes my be a cause of EM? I have pain elsewhere on my body that I don’t think is related but I’m not sure? My neck is severely painful and my neck/shoulder muscles are in a locked spasm. I can’t turn my head very far to either side. I’ve tried many muscle relaxers and the only one that even slightly affected the spasms is baclofen. I’ve had a chronic headache since I got herpes (embarassing) 27 years ago. I’m going to a neurologist on May 2 about my headaches and maybe the erythromelalgia dedpending on how how it goes with the rheumy (she’s the only one that actually took my symptoms seriously). I’m seeing the rheumatologist because I thought my symptoms were auto immune related. I think the varying symptoms may be a couple of problems rather than one condition producing all these symptoms. Any ideas on what I might have?

Hi Sharon,
Have you ever been told you might have Raynauds? The combination Raynauds and Erythromelalgia is a common one and could explain the blue/purple hands and feet. I haven’t heard of a link between EM and Herpes but then I’m no doctor.
I hope you get some help with the neck/shoulder muscle spasms which sound awful, especially along with a chronic headache. That’s a horrible amount of pain to deal with on a daily basis.
Wishing you the best of luck

I can't speak to all your symptoms, but the feet, hands, and face sound very much like an EM/Raunaud's combo, like I've got. I have had some problems with stiff trapezius muscles and TMJ issues at times, but I can't say if they're EM-related.

Sharon Grace said:

Any ideas on what I might have?

Thank you very much both of you. I’ve had jaw/tmj problems I think due to grinding my teeth in my sleep.

Hi Guys,

Just to underpin that there are many medications available . I have attached some research reporting stabilisation, improvement and possible symptom remission to help all 'keep the faith' .

.Arm yourself with all information here at Bens Friends, print off the posts, take photos of your flares, keep pain/symptom diary, join TEA (The Erthyromelalgia Association - site wealth of EM related information )..... and go badger your Dr. Get trying these medications!!!!

God bless


331-EM.HurtBlocker.Newresearch2012.pdf (235 KB)